Coco-culture

A word about Keeping your illness private

2009-11-01T20:33:00.001-08:00

To a Famous Author

Bruce Just wanted to say it was especially poignant for me to see you and to hear your first admission to a Nashville audience about your recent health struggle. The confidentiality part gets better and better and perhaps it already has for you. I pray that you find the balance between your privacy, concern felt by others and your popularity (and message). Two of my best friends have recently been diagnosed with very scary illnesses and the privacy part is one of their first concerns. I had a double transplant 9 months ago... after my kidneys failed (i had a somewhat rare pancreas and kidney transplant. Diabetic since i was a little child). I lost zillions of pounds, was in the hospital for more than 40 days stretched out over 3 months. Now I'm better than 5 years ago. My real estate business relies on my...errr...Popularity and Sanity and Consultive skills. So I was paralyzed with fear about people dumping me as their realtor when they heard that I was sick. Turns out, I did get dumped by a few and I don't care now. Turns out, everyone knows and strangely enough I even relied on their curiousity as some sort of support - and still do. Of course there are bountiful other wonderful things that people will do for you if you will just let them. Ooops. Didn't mean to go off on all of that. What I wanted to say is that you looked very healthy and I was dying to ask you more questions about your treatment, your children, your wife, etc, but I didn't want to keep the autograph line waiting. I pray that everything is going well for you. It sounds like you have managed to keep and collect the perfect group around you. I'm looking forward to reading the book about the dads, etc. Am now going to follow your blog. TAKE CARE and all prayers to you (whenever this heathen can actually remember to pray - yoga helps) xoxox "coco" fennell

Response to Linus: June Recovery period

2009-06-26T13:15:00.000-07:00

Yes yes. I think of you often. I associate many fine things with you - you'd might be surprised! you represent calmness and happiness and the good things that comes from spiritual practice. You were my first real experience with the catholic church. Previously had read CS Lewis only with curiosity. He said something about the "practice" and "exercise" of bending, kneeling, chanting that I apply now to monk "music", my silence this summer, and newly found yoga poses (reaching toward heaven) we too are also leaving on vacation (dearest of friends in northern california - so we will be in same state. Let's try for end of July.

I am in good spirits and feel pretty darn good. Am feeling the effects of being immune suprressed but really nothing I cannot kick in the ass! ha I am strong and almost ready for that promised dinner party (my voice has been gone since May 20 - my biggest challenge, but i think it is a bit better. Hard to be around people and not talk! I'd love to have dinner w/my translator JL or a group soon...or you and i when my freaking vox is back) GO ROCK ADELE in California. Love to you

Love, Kim

Pancreas Kidney Transplant

2009-06-15T10:32:00.000-07:00

You'll notice that there is a huge gap in time between my dialysis "posts" and this new post.

On Feb 26, 2009 I was transplanted with a cadaver kidney and pancreas. My diabetes ceased immediately and urine was produced.

This entry will only attempt to summarize the 3 months of recovery that followed. I must say here that I am doing great, strong as an ox and physically working out at 80% of what I was doing before kidney failure!

In the 3 past months, I was hospitalized 3 additional times; a biopsy revealed that my body was rejecting the pancreas; I was then IV-treated with some extra beefy meds for 10 days which have reversed the rejection. I suffered from extremely high fevers (103 degrees average) throughout entire nights with rigors. I had over 200 tests to determine the cause of the fevers (over 200 tubes of blood). This went on for 3.5 weeks before the biopsy revealed that my body was rejecting the pancreas. Kidney continued amazing output of urine and all body wastes. I was told that my organs were "large" and "young" - a very good thing in transplant.

In the meantime, I got to know every nurse on my floor, had wonderful friends & family stay with me every single night that i was hospitalized (over 30 days), had over a dozen CT scans, a 1 am ultrasound, 2 biopsies and all manner of fluid drains, IVs, stomach tubes, catheters & catheter removals & insertions. Whew. Now I know it was worth it.

I hope to post more for anyone about to go through a transplant. My experience was fantastic...I feel that I am still healing and in the middle of a great transformation. I will post more later

Bad News on CT scan

2009-02-20T10:25:00.000-08:00

Just got the news: the CT scan last night revealed a slight leak at the incision site for the PD Catheter. In other words, the fluid in the paritoneal cavity has been leaking there for sure, and it has not healed yet. My nephrologist recommends (he had a nurse call me) that I do Hemo another two weeks! This means in-center every other day, about 4 hours/day. whew. I have to get a grip on this. I'm not looking forward to this, but I will figure out a way to make it more positive. That also means no shower, continued with kiddie baths.....Oh well. I'm hoping to be able to walk most mornings and get a little more physically active. I will have to set some goals; that will help!

first of all, I called the center and they are going to let me come in at 6:30am tomorrow (Saturday). Since I awaken around 5 every morning, this could be good. Not sure what I will do about breakfast and blood sugar, but I will be out by 10:30 and maybe can have a normal day. I suppose i will take snacks, etc, though i am told they are not allowed. Luckily I had an apple yesterday that helped with how I felt.

I have been reading on the internet about what causes the severe headaches, and showing it to the hemo dialysis techs. They are seemingly receptive, but a back-biting bunch to each other ("don't expect Mary to understand that paper on headaches, she only has her GED." I learned that my "nurses" are not nurses, but techs that don't always have college degrees)

Wednesday & Thursday Report: Real Estate, Vandy Hospital & more

2009-02-19T10:15:00.000-08:00

Today is a bit of a down day. I prefer to write about yesterday. I don't feel great; I'm just beginning a 3.5 hour in clinic dialysis. The patients around me are very sick. The nurses continue to tell me about the expiring patients and other sad stories (is this a Hippa violation?) My personal nurse today is lovely. She happens to be 300 pounds and is a Reiki expert in holistic medicine. Lives in Ireland but is here to help her ailing mother. She gave me a brief overview of auras, chakras & angelic vibrations. I do believe in God & my own attitude, but I've never had an angel adjust my insulin for me. No fairy takes away the phosphorus that I am struggling with. It seems like God has given me my own brain to figure out my dosage. This reminds me of all the masseurs that tell me to buy this or that thing which will cure my Type 1 diabetes. There is so much mythology about our bodies....(sorry everyone! I'm a grouch on some eastern medicines.)

Yesterday was an amazing day(Wednesday). I felt great. One day after my treatment and a horrible crippling headache after treatment on Tuesday. So what did I do since I felt so darn good? Everything. I had a fantastic meeting with some great Realtors, exchanging needs (active buyers) and current listings. The attitude of these top Realtors has changed over the last year, more about that later. I listed a house yesterday; I rephotographed a house. I was interviewed about listing a $1.1 property w/pool & volume square footage. I visited Vanderbilt to pick up some contrast die for a test they are running on me this evening. And a highlight: unexpected windy and warm weather led to a hike and tour of a spectacular home. This was a once in a lifetime tour...a celebrity home that everyone seems to be talking about - and the tour was by the architect himself, a Cape Town native, relocated to Nashville. I had a fun dinner with friends.

First a word about the Realtors: we sit in a circle and take turns talking about Issues, Buyers & Sellers. The point is to let each other know about some "inside info" - houses that are coming onto the market and buyers that need something specific (all buyers want something specific).
As each realtor took his turn, the mood turned humorous, everyone laughing at the craziness of this market. It seems that everyone is finally admitting that the market is down, and there is a feeling of helplessness with the sellers who don't see the writing on the wall: prices are too high. When someone would say, "Please remember my house on Maple Street...It is so cheap, why isn't it selling?" Rapid fire questions followed: "Isn't it a 2 bedroom?" "Where is it on that street, I fly down it everyday!" Which led to laughter because IT IS A BUSY STREET and a 2 bedroom house at that price is just too high! Several other issues were addressed, like Drivit vs. Real Stucco and house-sale contingencies. One realtor friend was to meet with representatives of Obama's cabinet and HUD and Freddie and Fannie. She asked for notes on what to tell these guys about the stimulus package! I hope Obama hears us....Overall our discussion was a good reminder to talk honestly with the sellers about what listing prices should be. This is particularly hard because a lesser man (realtor) might just take the listing at any price....I myself fall in love a little bit with my sellers and believe in them and their pricing, when the market situation might be telling me differently. The only thing that I can be sure of is the really large number of listings in every category, and they are not selling quickly. I try to convey this to my clients; I try to get real feedback from the other Realtors after showings! I am brainstorming ideas about marketing. Anyhow, there was a lot of helpless laughter, but good ideas exchanged. I am inspired to call buyers and sellers in a few minutes. I have a big list. I just saw this as a comment on today's economy.

Yesterday's visit to Vanderbilt City, as I call it, was like a dream. It felt like I was in a Sims City game: thousands of people with purpose crowding the walkways, bridges & mazes and parking labyrinth, and a snarl of patients wheeled into off-limits hallways. The intensive care waiting area was full of families, waiting to hear about their loved one's condition. Walking to the back areas of radiation, I passed a patient on a bed with at least 8 people carrying his IV bags, breathing mechanisms, etc. He looked exactly like my friend Tommy on a ventilator. It gave me a shiver, honestly thinking only of myself post transplant and not really of Tommy. Ooof.

The tour of the celebrity home was fascinating. It resides on a steep hill near my home that I often walk to when time limitations keep me from the parks. This particular one is fraught with neighbor complains and zoning fights for the past 2 years. At issue is the style: contemporary concrete, looks industrial, and the view blockage. Honestly from the top of the hill, you really can still see everything. When the trees on the side of the hill are full, the house is behind them. Total time to finish construction is estimated at 3.5 years. The architect said that it was in the planning stage for 1.5 years.

My friend that was walking with us just happened to know the architect and he just happened to be there to give us a hard hat tour. This massive steel and concrete block has intrigued me since the beginning. The combined 2 lots now have more concrete than I could describe, with retaining walls and walk ways and the building itself. Steel reinforced everywhere. The only wood that I saw was the plywood haphazardly thrown down on the second floor. Ceiling heights were 20 feet. there were 3 floors with a pool above the 3rd floor (so I'll say 4 floors) There were bars everywhere (I counted 6: 1 in each guest "apartment" which equaled 2, 1 in the office, 1 in main living area, 1 on the 3rd floor "ballroom", 1 by the pool and I don't remember where the others were. There was a curved room on the 2nd floor that was to have curved velvet couches and the architect called the Elvis room. There was a swing around TV; there were walls of German glass that reached 20 ft in heigth. There was an outdoor room with a fountain and a 15 foot table. You could see to Goodletsville and of course all of Green Hills and Vandy's campus and downtown. There were soaring walls of concrete with light-washed walls for Huge Art. The house was oriented for south-western exposure. The windows opened and the volumn ceilings removed the need for air conditioning throughout many months in Nashville. The concrete walls were specially built for economy and energy saving. Mere mortal forced to look on from the hill won't see any windows. But the side facing downtown and the view is all special glass. Magnificent views.

We rode a lift to the second floor and tipped toed around on the scattered plywood. We climbed a 25 foot ladder to the unbelievable third floor and another same size ladder to the open rooftop pool. We had assistance the entire time even though it was after working time. The architect had arranged the house for entertaining. The third floor was over 4000 square feet of open space and again, 20 ft ceilings. The Pool was above us and there was an aquarium-like window built into its side so that partiers could see who was swimming from below! Guests could take the elevator straight up to the party floor and leave their coats in the 30 ft closet in the back; they would never have to enter the private residence. It all seemed like a huge museum project, especially when I heard the budget overrun. The architect asked me not to send out the pics that I took, I'm sure to respect the privacy of the celebrity. I dare to post the view here.. and I haven't mentioned who the owner was, Have I?

Other fabulous things happened yesterday: long-time friends out to dinner, a nice call from my niece, more loving from the family, Srabble efforts on Facebook (won't anyone else play me?)

I'm hoping for big results from today's treatment. I currently have 1.5 hours remaining. I have even higher hopes for my ConRay CT scan. This will help determine if the dialysisate fluids are leaking into my surrounding tissue. The test is scheduled for 5:30 tonight and I am hopeful for NO Headache so I can celebrate positive test results! Thank you for all the prayers and messages.

Marianne Williamson Poem

2009-02-15T16:31:00.000-08:00

Thanks to Mary Crowe for posting this:

Our deepest fear is not that we are inadequate.
Our deepest fear is that we are powerful beyond measure.
It is our light, not our darkness, that most frightens us.
We ask ourselves, “Who am I to be brilliant, gorgeous, talented, and fabulous?”
Actually, who are you not to be?
Your playing small doesn’t serve the world.
There’s nothing enlightened about shrinking so that other people won’t feel insecure around you.
We were born to make manifest the glory that is within us.
It’s not just in some of us; it’s in everyone.
And as we let our own light shine, we unconsciously give other people permission to do the same.
As we are liberated from our own fear, our presence automatically liberates others.
~Marianne Williamson~

Young Nephrologists "vents"

2009-02-15T16:13:00.000-08:00

Today I held an open house, veiewed 2 listings, and showed another of my own listings. Had nice Valentines' celebrations....Tonight I have been searching the web for a blog from a hiker and hemodialysis patient. I had found it 6 months ago and I wanted to read some of it again because the guy was so positive and a big physical guy, which I want to be! Instead I have to wade through so much negative info. In fact, one of the most visited websites is called "I hate dialysis!" I am stll looking for the positive article!

The following is a post by a nephrologist. I have copied it verbatim. It illicited quite a few comments where I found it on the web....

"13 Things I Hate about Nephrology" (by Nephrogirl)

via WikipediaIn a recent post, "nephrogirl" — who is either a nephrology fellow or younger nephrologist — listed the "13 things [she hates] about nephrology." I appreciate that she took the time to vent her unhappiness. And while her experiences with nephrology aren't mine — which might have to do with differences in our patient populations and many other factors — I understand her perspective. Here's the list, along with my comments.

1) The incessant checking of labs, powerlessly watching the kidney function slowly deteriorate. [I'd say the ratio of patients for whom I make a significant difference to patients that I feel powerless to help is well over 50:1.]

2) Sending patients for the critical intervention which you feel is going to make the difference, only to see them suffer a devastating complication from the procedure itself which was worse than the actual disease. [Interventions for renal artery stenosis and coronary artery disease might fall into this category. I've rarely seen catastrophic outcomes from either of these interventions, and the number of patients that I've seen helped far outweighs any of the complications I've seen.]

3) The self-deception involved in thinking you might be slowing the progression of their kidney disease, when their main problem is the cardiovascular death that’s waiting for them in the next 6-24 months. [Interventions to slow the progression of kidney disease, like improving control of hypertension and diabetes, also have the potential to also prevent or delay cardiovascular disease.]

4) The rampant noncompliance of so many patients. [Agreed, this is frustrating. But I've also seen many patients stop smoking, lose weight, begin taking their medications, and change their lifestyles.]

5) Reassuring the dialysis patient that his labs look better, when he’ll be dead in a year. [Again with the fatalism and therapeutic nihilism, which is difficult to argue against, because the prognosis for many dialysis patients is so dismal. Then again, I've seen plenty of patients survive many years on dialysis and eventually get transplanted.]

6) Relying on the creatinine to determine kidney function, a wildly imprecise measure at best. [Agreed, but the MDRD formula is now mainstream and is a more sensitive — though not a specific — measure of kidney disease.]

7) Watching the diabetic dialysis patient slowly losing his eyes, feet, kidneys, heart, and brain…knowing the outcome will not change despite everything that you try to do…watching the health care system spend tens of thousands of dollars on him in his last year of life. [I agree, this happens, and is frustrating, and many nephrologists feel powerless.]

8) Trying to explain kidney disease to patients and to other doctors – it’s a wild mystery to most people that they usually equate with death. [A cardiologist once said, half-jokingly, that "Everyone understands the heart, and no one understands the kidney." The mysteriousness and non-intuitiveness of the kidney is what gets many nephrologists into the field in the first place.]

9) The joylessness of a nephrologist’s life, especially one who feels it is her duty to try to make a difference, despite constant evidence that her efforts are most likely futile. [Most days, I'm very satisfied with my work, and I don't feel this way at all.]

10) The realization that it is easier and more financially rewarding to put a patient on dialysis than to try to preserve their kidney function. [I've suspected this phenomenon might occur, but I don't practice this way.]

11) Knowing that the promise of a kidney transplant is what dialysis patients live for…and knowing that a transplant can in some cases be worse than dialysis, especially when the post-transplant care is handled by an erratic system more interested in doing surgery than in practicing medicine. [In general, it's better to get a kidney transplant than to be on dialysis, even taking into account transplant patients who do poorly.]

12) Not being able to let go…for fear you’ll miss the acute renal failure, the rapid correction of hyponatremia, the diagnosis of RPGN…then when your back is turned, an unexpected catastrophe happens. [Many medical specialties require a high level of vigilance, nephrology perhaps more than most.]

13) The realization that the bill of goods you were sold when you chose this field is far different than the reality. [Personally, more than five years into practice, I still wouldn't choose any other field.]"

Recap

2009-02-14T09:51:00.000-08:00

Helllooooo my friends. It is Saturday afternoon, Valentine's Day and I'm sitting in the dialysis clinic on White Bridge Road. Everyone is very receptive to my chipper mood; the nurse Jason got my wireless hooked up and Dawn hooked me up to the dialysis machine. All in about 15 minutes. Apparently I am on my own for the next 3 and a quarter hours. I have phone, books, computer, NYT and pillow/blanket from home. I think that I will describe the scene some other time. I think it best to focus only on my nurses and not the atmosphere here. There are some very sick people within a few feet of me.

The photos are of a) Bruce makes a heart shape with red vest and body for Valentine's day, b) a friend's Valentine's Day shirt at the "Peep Show" this morning (breakfast at LePeep), c) some very dear visitors post-sushi at the hospital. Had a very nice social call or two lately. You know how I love the visitors.

Got out of the Centennial Hospital Lux Hotel on Thursday afternoon. I've had a bit of amnesia, a little pain and mostly feeling wobbly when I walk. But I'm good. They took 20 pounds off of me in the 2 days that I was there.

Here is a recap of my situation:

*March 2008 - warned that my kidneys were about to go. Frantically try to keep them going!
*June 2008 - got accepted into Dual Transplant program at Vandy after many educational visits and competing programs. This means I am in line for a Pancreas AND Kidney Transplant. Personal nephrologists does not agree with my decision. He wants me to get living donor NOW, not the Dual surgery. Very hard decision. Vandy has me do over 30 tests to qualify, including visit to my favorite dentist, TB tests, everything!
*August 2008 - Begin to feel tired, gaining water weight
*Late September 2008 (?), had surgery to place PD catherter into my paretineal cavity.
Healing time & waiting for the clinic to have time to train me. No shower for 6 weeks.
*Nov 3 started PD training for that week.
*Nov 7 First day to have dialysis on my own at home. Vandy calls with potential donor for pancreas & kidney. Up all night getting ready for big transplant
*Nov 8 transplant falls through. (good dry run)
*Nov 8 - Jan 15, 2009- Peritoneal Dialysis goes very slow. Spending 5-8 hrs per day on the "exchanges" at home. Sell a few homes! Feeling Better! Very good actually; go to gym or walk everyday! Real estate "consulting" is mostly pro-bono, but I'm happy to do it!
*Jan 26 - Unorganized dialysis nurse finally says, "something is wrong" ordered xrays & ultimately exploratory surgery
*Jan 29- Surgeon finds falopian tube sucked up against catheter. Visit with all friends that work at Centennial, including 2 surgeons, 1 nurse, & 1 anesthesiologist.
*Jan 30 - PD goes oh so fast. We cry with joy! I see the light
*Jan 31 - Ah Oh. The exchanges are fast, but then they stop. Not enough fluid comes out. I begin to grow, gaining pounds everyday.
*Feb 2 - in 2 days I gain 8 or 9 lbs. Another surgery scheduled, then canceled. Never talk to surgeon because he is calling home line instead of cell. I go a few days w/o checking home line.
*Feb 9- lots of visits to doctors. finally at a face to face with surgeon (i've now gained 15 lbs) he thinks that the peritoneal cavity is leaking into surrounding tissue. Most of my weight gain is squishy fluid in groin, legs & chest. On alert to go to emergency room. The only thing to do is another surgery with emergency catheter installed in jugular to do hemo dialysis.
*Feb 11 - weigh 128 lbs on way to hospital at 5am. Hard to sit, walk, breath, ect. very uncomfortable. Shoes do not fit, nor does clothing. Am admitted for 2 days. After the surgery, I have 2 hemo dialysis rounds, then back home the next day. Scales say 108 lbs - they took 20 lbs off of me!
*Feb 14 - Happy Valentines day! Am currently having hemo dialysis "in center"....3 hours to go!

So the last few days have been full of emotions: john has kept me laughing, we were laughing the whole time the morning of the surgery. We had the whole pre-op room coming down to see what was up because everyone was making so much noise. One of the nurses even said that we were the fun room. After surgery friends brought sushi for the whole room and you know I love my friends so much because apparently i fell asleep and snored in front of all of them. John & mother fought over who was going to stay with me, John bragging about his air mattress. John stayed, flirted with the nurses, then told them not to wake us up all night! Unfortunately the alarms in other rooms kept him up. I was too drugged to be awake and I thought the bed was very nice.

I feel good and a few friends were concerned when I told them that I did real estate most of Friday - putting up signs, showing a few houses, dragging branches to the street at my rental property. I had a very nice walk with Kim & Lorrie. Dr Wolf has made a few house calls over the last few days. Luckily I am playing scrabble - 10 or 11 games on Facebook right now, and I'm still managing some leads over Bruce & John. My mental acuity continues to challenge them! ha Love all the notes and the visits and feel honestly quite lucky. The dialysis centers are a reminder of how good I have it. I think I will spare you the descriptions of the other patients and the scene here.

February 11, 2009

2009-02-11T07:48:00.000-08:00

Substitute blogger for the day: Karen Silien

Update on Kim: Kim successfully had surgery this morning at Centennial Hospital to move the site of her port for dialysis, due to all the complications she was experiencing. I just spoke with Kim's Mom, Gayle, and the news is positive and hopeful. The first dialysis in the new site 0f her jugular vein, will take place in the next hour. And of course, in only Coco style, I had a text from Kim after the surgery that she was feeling well, so well in fact that visitors and well wishers should not be discouraged from checking in. She did ask that flowers not be sent as she hopes to be back home by Thursday morning.

Our thoughts and love are with you Kim.

Update: surgery tomorrow. Contraband suggestions needed

2009-02-10T12:12:00.000-08:00

Update: surgery tomorrow. Overnight at Centennial hospital. Call me call my mom call John! or dad. This surgery should fix everything. Apparently the dialysate has been seeping into surrounding tissue. My fear exactly. They will put a catheter in my neck and do hemo dialysis for 1 week to get the 12 lbs of fluid off. Not happy about it. But what can I do? Making jokes has been helpful.

I am trying to figure out how to get a contraband house flyer upstairs to the anesthesia doctor. I have the perfect house for him. When I get there tomorrow morning, they strip me of phone and books and laptop and jewelry and reading glasses. Then I get the pretty hospital gown on. Any suggestions would be helpful about how to sneak some photos up to the doc. (i also have a picture of a friend I want to fix the doctor up with!) Wonder if I tattoo the info on my stomach...oh never mind.

thanks!

Tuesday update

2009-02-10T07:20:00.000-08:00

I am reading Dr Peerman's book "Blessed Relief: What Christians Can Learn From Buddhists About Suffering." I dare not say I am suffering at this time, but so far every bit of the book speaks to me in a practical way about living. I am thinking about the way Dr Peerman speaks about always wanting the other: even when I am in bliss, hiking at Radnor, for instance, I might think, this would be perfect if only so and so friend was here to see the eagle. Or anytime that I long for the other: my parents to be here, a certain friend to join in the current joke or laughter. If I am thinking about anything else in the future, or how a good situation could be better, I am compromising the PRESENT situation! So I am learning to enjoy the moment for what it is. And be in that thing. Longing not to be in the waiting room at the doctor's office does not help the time pass. So I am working on that. I see it as a lifelong goal.

It only feels daunting this morning as I think about missing what has become our annual ski trip. Ha! I'm not one for lingering in longing thoughts, but I couldn't help myself this morning when my exchange went bad. I'm swollen beyond comfort; many things hurt with the extra fluid. For awhile I could only think of Luke and Brad and Cordell and Floyd eating breakfast in their pajamas and Cordell finishing up the cooking and griping about Latte "not eating breakfast" and eating up all of the eggs even as he makes the claim. John wishes he was gambling with Floyd and I am missing my annual photo-in-a-bush with Gene S and all of the humor from Gene D and some instructions, jokes, stories & showmanship from Cordell. I miss all of the little comforts that Floyd provides, patting on me, etc, and I'm wondering if he can even ski with his foot like that --but I think Floyd goes for the love of his friends, not necessarily the skiing. So this is a maudlin sentimental indulgence to think about them and pander to them because I think Gene reads this sometimes: Hi there guys. What project is Cordell working on now?
Well, I think I need to get back to the present. My 1099 to my former worker is overdue! And I've got a couple of houses to sell! The best listings in Nashville; I'm lucky in that.
And I've got to give this surgeon a pep talk! He can fix me...he can fix me.

Monday morning notes...

2009-02-09T05:53:00.000-08:00

Hi Karyn
Thanks for the note. I feel funny writing in a blog when you don't really know who is reading it! I meant it to be a journal of this time in life, but not sure what I'd call it. I'm so glad that you liked the part about John's painting...I didn't know howto convey what felt like hysteria. John continues to be amazing and happy and a good sport. He is hanging in for the long haul I hope. The fun is not so much today as I got up at 5 to try an exchange and very little is coming out. They were concerned that I had gained 10lbs of fluid last weekend in 2 days and I was trying to take that off. I woke up Saturday with 4 more pounds....ugh. I kinda hurt all over esp my left leg which is huge.

this morning I sat on the toilet for an hour playing Facebook scrabble trying to help the situation. The nurse says that it may be hospitalization today and I don't want to go. they would do emergency catheter (I think it is in the neck) and emergency hemo dialysis. People get it all the time, but I"m afraid of infection and I cannot get an infection and maintain status on the transplant list. It is 7:30 and I'm waiting for the nurse to call back as I refill my Peritoneal cavity with even more fluid (the fluid should pull more fluid off, but hasn't been working!)

Karyn-
what is going on with real estate in Knoxville. Are there closings? How is your business and how does it compare to last year?

I would really love an ADPi get together this summer. I'm happy to host any part of it if my transplant thing goes...
Lovin you Karyn. enjoy this great weather in February! xoxoxo Kim

additional note on blog:
This weekend was so nice with a small party for Kat's birthday - Her request to play games at our house resulted in Balderdash laughter and abuse. So nice to have it at my house so that I could do an exchange when I felt like it. Phil was a champ with the hook up of Italian food from Pranza, a little cafe open only for lunch in Berry Hill. And Karen made a very special and much loved Chocolate birthday cake.

Last night we were invited to Brenda Lee's daughter's house for the grammys. She was given the Lifetime Achievement Award on the day before and her daughter had a small party to watch the ceremony. I bragged to a few friends about my proximity to celebrity so I had to go. The nurse wanted to call the doctor about my fluid gain, but I got her to put it off (so i could go to the party). I found the celebrity kids just like all the others: very gracious & generous (Julie forced me to take her lambskin slippers though they kept falling off of me and I couldn't even walk in them). I imagined that the two sisters were a little stunned by the harshness of life when I heard about their circumstances, but then again, aren't we all? Nice family, so nice that the star herself didn't show, which was the smart idea, watching the Grammys on her own couch with her own Snuggle blanket(look it up). She got a lame mention on the show from Nashvillians Leanne Rimes & Sheryl Crow. I of course volunteered to have a kidney foundation fundraiser later in the month if Leanne & Sheryl will come properly present Ms Brenda Lee with the award.

So now it is Monday morning. OK, I canceled the dinner party with Linus, something better happen today with this fluid....I had some very propitious real estate showings yesterday. Cross your fingers.

Saturday Morning

2009-02-07T07:53:00.001-08:00

Well, the week wound on and I found myself in the neurologist's office for 1 hour with John at my side on Thursday. I've never spent this much time with this Doctor. It was a come-to-Jesus affair with me bawling and saying I didn't sign on for 6 months of diareah when i went with this type of dialysis (CAPD)and an outpouring of all other symptoms including complaints about unorganized dialysis nurse. I didn't tell him that I was fully booked for a time-share sales meeting at the Vandy Dialysis center. It felt like sorority rush the way they were courting me on the phone. Looking forward to the all the perks on the tour Monday. (coffee?!)

Anyhoo, doc looked me squarely in the eye and said that all dialysis sux and that so does diabetes and kidney disease by the way. And post-transplant will, too. This is probably just what i needed to hear but the tears that gushed out and my fighting to control them racked my whole body so the meeting wasn't as efficient as it could've been. but john discussed the future and the option of going on with the vascular surgery for the port in the arm so i will have options. I remember spasming in my gut through tears and saying, "it is good to have options!" with a big fake smile. Dr. said to John, "Are you keeping her from the edge?" and John said, "oh, I've pulled her back from the edge a few times but you are here to do it now! " or some sort of joking thing. Really, it was good, and the doc wants me to get this 10 lbs of fluid off, God, do I want that and he gave me some tips. Basically, i can gain it in 2 days of bad dialysis, but it will take about 8 days to come off. Meanwhile, it is hard to walk.

We went to the elevator and I couldn't stop crying. As crazy as it sounds, the doctor had shot down my goals and made me face mortality once again when I was so good at pretending. I wanted to get onto the nighttime machine so badly and it looked very grim. I wanted to be able to travel again to work full time to sit to hike as far as usual. It wasn't like I hadn't realized it all before, but it somehow all came together with this failing PD and bowel movements and threat of constant hospitalization or infection which could thwart a transplant.

I was shaking and crying in the elevator and John was doing his best to soothe. We stepped out into the sunshine and it was very quiet in the parking lot and suddenly springlike. My head was spinning with the doctor's words and the long meeting. John looked over to me and said, "I painted an orange today." and again I was wracked with laughter through tears but bitter hard laughing. He couldn't stop me. An Orange! He painted a beautiful orange. It was ridiculously wonderful that he painted what I was eating on that morning. Emily had sent me oranges in the mail. My friends' gifts to help me. And my kidneys quit working and my huge blood vessels that I was so proud of the surgeon loved had suddenly disappeared. and my nails were splitting and my hair falling out and my skin is gone and there is a body part that is 10x it's normal size, but the world is still very good because John Painted an Orange.

I guess it sounds so silly and very Guidepost, but sure enough, the orange is in my den and I love it. And it is 69 degrees outside and it is Feb 7, 2009.

Game night tonight which might mean another foot rub and lots of love from friends.

bad night last night....wednesday post

2009-02-04T05:59:00.001-08:00

To India & Peter, now in Sydney! The surgerywas called off today. but there is still trouble with the drain line. i do understand some things better now about my body and about how bad my nurse is. about her: it has all been revealed: she is terrible.

anyhooooo, last night was the dark night of the soul if you know what i mean. i went to bed giggling about john and something but i lay there and my heart raced and my fluid was soooo uncomfortable - especially my 8 pound labias (vagina has swollen to pumpkin size) I had had a long talk with Rebecca Bell who has stepped in wih interest as a long time nurse to help me figure this out. and she was called in a panic when I grew between my legs on Saturday. She gave me some options that I hadn't thought of and introduced the idea of switching to hemo dialysis (the blood one, with a port in my arm)
I couldn't stop crying thinking about how i was robbed and never told about the downside of PD. That silly nurse candy said with PD you only have weight gain. I thought I was doing something so good to overcome vanity - to have conquered vanity to go on and choose this kind of dialysis. anyhow, I never heard about the constant diareah or the 35% dropout rate in PD or especially the slow drains and the 8 hours a day! I t has been 13+ weeks and still not on the nighttime process.
anyhow, it all sounds managable this morning but i couldn't stop crying. I think i recognised that it was partially the urea in my blood that was making me not sleep (i slept like 2 hours the night before) and think too much. I called john downstairs by phone and asked him to come talk to me. He came onto bed and settled in with his back close to me. this made me ball harder. he was saying all of the john thngs like making jokes which made me gag on tears and laugh then start crying again. I was heaving...and I started this, i need you to pat on me, i need you to say something kind, i need you to not joke right now. we are both so good at joking I'm scared here. I'm ashamed to say this, but I said: you need to pretend you are someone else like BILL CAMP and be nice to me. oh, it does make me cringe this morning.

John was just gorgeous and finally got me calm. but then i was awash with all the guilt of how much I've put on him in the last year. and then i couldn't stop again. i kept saying, I've been so good. I haven't been crying much. I never do this. I've been sick all my life....boooooooo hooooo. and then, unbelievably, i could see how ridiculous it all sounded and started laughing. I told him that I was sorry I was so positive to everyone else and that I had to tell someone every ache and pain. he heard it all. so i tried to be quiet for his sake and he finally went to sleep. At 3 i decided to quit trying. He is amazing.

my thoughts went to my closest frineds and my endless outpouring of complaints to them. I am constantly just giving out my symptoms, my feelingsmy ups and downs. the crazy thing is, they hear all of the manic happiness too. My latest thing is a complete brag list that I posted on my website and on Facebook yesterday. total exploration & expoitation of who and i am, and trying to reassure myself! I got what I wanted, some funny notes, ie, attention. I like it way too much, the attention.

so last night things spiraled on and on for what seemed like hours but I could see it would get me nowhere. I wrote an essay in my head about "Living with an Unexamined Life Person" in praise of John Lott and his ways. I wrote a letter to you. I wrote a letter to phil and bruce and kim and Tom Wofford thanking them for loving me even though I cannot ShUT UP right now. And Kat for everything lately. And Amy. I couldn't help but think about legions and legions of prayers sent my way. God is up there thinking, she has fooled EVERONE in the south. India, there are people at churches that are praying for me. There are reports of churches that I've never heard of that have me on a prayer list. I have over 300 prayer letters ina bowl here at the house.

and the crazy thing is I know that it is working.

I love y'all and thanks for listening!

PS I just reread this and it sounds so dramatic. i was mad upset last night but the sun is out and it is 15 degrees outside. I find it very nice. I'm going to be good and it really is going to be a good day. I barely have any symptoms. I must be much stronger for when the real pain comes! ha LOVE YOU

Rushed email this morning and update....

2009-02-03T06:16:00.000-08:00

Well, I guess I’m going to rationalize this by saying I think over-exaggeration is better than nothing. There is a chance that I may not have surgery. I have learned another trick about filling and emptying and it worked last night AND this morning. It also involves a third factor…re completely empty bowels and small meals. While I still have surgery scheduled for 11am tomorrow, I have decided to question the procedure a bit more and Candy is going to cancel her meetings this morning to see me drain. If the performance is as good as it was at 6am and 10pm last night, I may put off the surgery. I still have 6 or so extra pounds of fluid and I only slept an hour last night (I’m back on the high urea in the blood stream High/low feelings), but the swelling has gone done some.

I am rushing to the pharmacy to pick up meds, Office Depot for real estate stuff and off to meet Candy at the clinic by 9am!!!! Nap time this afternoon! But first some eggs

....(a little more later!)

25 Random Things: Facebook Made Me Do It.....sorry

2009-02-02T21:27:00.000-08:00

1. I used to write country music gossip for the National Enquirer. I snuck into Wynonna’s wedding and all sorts of undercover hospital work!

2. I pull over for all large or unusual birds, even if I have a mulit-million dollar client in the car. I’ve traveled to many places but my favorites involved animals: safari in Africa, monkeys & macaws in Costa Rica, whales in Hawaii and an "official" guided tour through Yellowstone to see the Wolves with dignatiaries.*

3. My father and I have a card trick called the Wizard that is very impressive and in demand. Ask me about the Wizard.

4. I live with John and have for the past 11 years and we have a great deal of fun. I’d rather John be the driver in all occasions, no matter who we are with.

5. I don’t like courtroom dramas or lawyer movies. I hate HGTV and will not watch it. I’ve never seen an entire episode of CSI anything or Law & Order.

6. I hate spoilers for movies. I don’t want to hear about a movie at all before I see it except that it is “good.”

7. I do not like the malls and challenge any one of my friends to ever spot me at the mall.

8. I love comedy. I admire it almost too much.

9. John and I pretended that we had tickets to the big superbowl in Atlanta with the Titans. We walked right in and sat on the 50 yard line. Extra special game that day.

10. I love fiction, literature really.

11. I was on two game shows the year after I graduated college: Card Sharks & Scrabble.

12. I have belonged to the YMCA for maybe 18 years; I’ve never missed a workout(often just a walk) for 3 days in a row, except when I’ve had surgery.

13. I’ve been a Type I diabetic for 33 years. I’ve had 11 eye surgeries, and am now in desperate need of organ transplants. I also need another eye surgery!

14. John and I play games constantly; when we go absolutely anywhere and there is music playing, the game is on! Whoever names the artist of the song wins. (at a funeral he once leaned over and whispered “Amy Grant, One Zip.)

**15. I realized in my 20s that I have never had a full beer. I don’ t like the taste. Since then, I have kept up with it and still never had one. I do not drink.

16. Two of my life list goals I accomplished recently: my friend Joe took me Beekkeeping and I’ve gotten to go to dinner with a food critic. Other goals include: travel goals, writing a book goals, having family over to dinner more, commitment to charity, hiking more and further away.

17. I free fell from a plane when I was 19 and pulled my own shute. I wrote about it in the paper. When my mother heard she promptly threw up and rushed to Knoxville, father in tow.

18. I threw up in the lap of my first 2 prom dates from nervousness.

19. I once locked myself into a closet for 5 hours until rescue.

20. I wash my baggies and I have for along time.

21. I don’t have and I won’t have a credit card. Yet I am still able to rent cars and take out and payoff mortgages

22. I buy rental property and I’d like some more.

23. I got off of the school bus every afternoon at one of two grandmothers’ houses. We grew up 1 and 3 miles from them – excellent way of life!

24. Many many people have influenced me, but Conn Hamlett, my Latin and Bible teacher in High School, is one of the best examples of class & humor. There are many more, but he helped set off a life long curiosity about life. At the end of my senior year, we had a 1000 word English Vocab test. I still have the latin book with all of the English words in it.

25. I have fixed up many couples and I claim 8 marraiges because of my introductions.

PS> I know all 50 states in alphabetical order.

I have what I call Sports Anxiety about my potential failure at anything sports like. I do love to hike more than anything else (except reading) but I still get nervous every time I go with someone new.

I feel panicky when I cannot find my glucose monitor, even though the insulin pump attached to me is worth $5000 - $6000 more and much more critical. Maybe I don’t lose it as often because it is attached to me 99%!

I don't believe in Astrology at all. I believe in things like Astronomy. I am afraid that I like to shock my friends sometimes and claim it as Blashphemy!

I love nicknames. I love to play Scrabble.

*Special thanks to India Viva, The Thompsons, Latte man, Christine & Jacquie Lawing, who knew most of this crazy brag list. These were the folks responsible for the animal safaris. Special gratitude to Kim for being the animal spotter at Radnor & Warner Parks. Hey Phil, does this prove that I love animals?
**OK, my most intimate might question me on some of these. For example, the beer drinking. I appear drunk often. I am not. However, I did get absolutely sick wasted drunk a few times, maybe 5 in college. The thing about the beer, I do think it is true. We could ask the college boyfriend.
***I realize what a self-flattering, overly contrived concoction this must be to you. So here are some other truths: I spill alot of my food down my front as I eat. I'm not a good driver, so I actually pray over my car that I never hurt anyone. John is better than me at most everything. (that was hard to say) I am a narcissist. I never get my nails done and they always look awful; i pretend noone sees them. I gossip way too much. I don't practice what I preach. I get lonely! I over worry. I miss people so much that it hurts sometimes.

Letter to "Richard the Realtor"

2009-02-02T21:19:00.000-08:00

Hey Richard. I keep thinking about you and your mom. Hope you are doing alll good. I have lots more of an opportunity to spend time on email and reading and especially thinking. I'm doing great but allthis extra time was forced down my throat! I didn't want to spend this time on the couch. And you know what? I am loving it in a way.

don't get me wrong, it has been one really crappy bitch to go to the clinic 2 and 3 times a week, up all night, and stuck at the house from either 5 hours to 8 hours everyday (we are working on getting to do this overnight, so my days will be free again soon). Don't even make me tell you about the daily bathroom situation.

i said i am loving it, but i want to tell you that the new feeling i feel about real estate and making money has changed. i have gone from years of being terrified about disability and not being able to support myself, to almost not worrying about it all. I was a real work aholic and am working on recovery. (i think it is impossible NOT to be a workaholic in real estate. But food aholics say the same thing about eating.)

I just say this because i hope you are not working too hard! I'm assuming you've learned all this long ago and are laughing right now from somewhere warm. It has just taken me a long time to figure it out. I havn'et quit; i'm still working. In fact, i've told noone in real estate except for a couple of close friends what I am doing! Turns out the anesthesiologist that I've had both times I had some dates with in college. He is interested in my upcoming listing in Richland.

I didn't mean to say all of this, but i was just thinking aobut your upcoming birthday and you and the passing of your dad. I admire and love you so much! thanks for all the help over the years and I hope more in the future. John and I want to go eat dinner with you and beth and richard sometime! or play scrabble or whatever. I probalby will come in sweat pants from the y. that is what i usually do.

Oh, happy birthday early dear. In case i forget!!!!

Another surgery

2009-02-02T16:00:00.001-08:00

Last Thursday I had exploratory surgery to determine what was the cause of the slow dialysis drain.
This is a post summarizing what happened and why I am about to have the same surgery over again this Wednesday.

Without food and water for over 24 hours, I was naked with only a sheet and a crazy surgery hat on when the anesthesiologist i dated in college came over shaking his head. "I'm SO sorry to see this is you in here for surgery!" He had said the fist time I'd seen him, 13 weeks before when the catheter was originally placed.

The attending nurses had fluttered around him giggling and making eyes at me when they heard him say "We went to Dan Fogleberg concert togehter in college." Not looking my best, not that I need makeup or anything, ha, I managed to listen as he whispered to me the horrors of his recent divorce. This time I was ready for him. I think I've got a good woman to fix him up with AND I know the perfect house for him! I also saw another surgeon I know from high school and had a good ole time as they plugged me up to blood machines and stuck me for pre-surgery.

Anyhoo. They found that my fallopian tube had sucked into the catherter. Oh. That is what I've been feeling down there.

the Next 4 days were not fun. At first the dialysis came out in a brilliance of bloody speed! The blood looked scary but was supposedly normal. The speedy drain was how it was suppposed to be. We were elated.

Then dialysis almost stopped completely. the weekend was long. My nurse failed to meet me for 2 hours after what she told me. In the meantime I got my third (expensive) xray. While I was waiting for the nurse to finish her lunch at Mr Gatti's, I wrote a letter that included a list of all her infractions....the times she forgot to call my drugs into the pharmacy, the way she lost my bloodwork, the missed apts, the forgotten setup for xray...and guess what, When I got into see her, she dressed me down for 30 minutes. told me off like I was the most difficult person she ever had. I asked too many questions. I have too many doctor friends (thank God! Bruce & Howard & Utpal & Rosalie & Rebecca Bell have been invaluable and I cannot even express my gratitude). She yelled and I defended myself only.
\
Anyway. what a nightmare. John kept from dissolving into tears by diffusing the situation.
He offered a joke after the 20 minute lecture. Thank goodness for Latte.

The short story is repeat of surgery for the third time. Could have permanent catheter placement, could have to wait for use of this new catheter. And definitely back to no showers for 6 weeks after Wednesday's surgery. There is still possibility of emergency dialysis tomorrow, but it is going better tonight.

My BUN is critically high right now and everything depends on getting a transplant.

I have to go now, becuase luckily John and Phil will eat with me if i go now and they will make me laugh.

I'll be ok but I am frustrated! Thanks for reading all of my crazy posts. The best thing is that the book Kat gave me says that "Pain is inevitable; Suffering is optional." So far so good. I am loved. I get foot rubs from 2 friends. I get visits. Its a nice life.

Surgeon says FAT!

2009-01-27T14:54:00.000-08:00

The question was:

WHAT IS BLOCKING THE CATHETER SO THAT THE FLOW IS RESTRICTED?

I am having another simple procedure on Thursday at Centennial Hospital (outpatient)…They are doing an exploratory lap to see what is wrong with the catheter. After over 12 weeks of trying and trying to get the dialysis “flow” to go better!(which includes standing on my head, hand over fist of daily laxatives, impulsive runs to the potty at all hours, and 8 hours/day of dialysis.) I am really excited that he has done this before. He predicts that some fat has overlapped the openings of the catheter and are sticking to it. When I asked him if I was having mini liposuction, he didn’’t really laugh but I almost got a smile out of him. My weight has dropped some due to the aforementioned laxatives, despite gorging of food! So he said No, not really a liposuction, but close.

So I will miss the book club! So sad!

But I will back in full force Friday and Saturday to show property and order contractors & hope for a transplant!!!!!! With your help, I am so happy these days! Please call John if you get a chance and give him a good joke or kudos. He has been a saint and a tireless helper & best friend.

Call me/praise Him!

Update...nighttime dialysis eludes me

2009-01-26T08:27:00.000-08:00

HI Laura! Well, welcome to Nashville. I'm glad we found you a house.

I'm afraid I'm not a very good friend lately. Dialysis is like having a very needy baby. I am up all hours, sometimes rocking my body until the drain works better. i have been at the clinic so many days, then still doing dialysis for 4-8 hrs per day. I feel pretty darned good, my biggest problem is sitting still and canceling plans. Luckily, i have an extraordinary group of friends & family that put up with me and work around my horrible schedule.

and I still need to work and still love it, even though I am working mostly with hurt sellers. I just try to help.

I would love a visit anytime, esp in the evening because you can usually count on my having to do exchanges then. However, John and I go out to eat tons, mostly in our sweats after the gym....so there aren't too many places to go like that! ha We would love for you to join us for a big steaming bowl of Mexican pollo soupa at our little place. My goal is to see the last of the good movies in the next few weeks, so i will try and call you before we head out. The problem is, we never plan ahead, which is a pain for friends.

I committed to walk in the half marathon with Kim, who understands my fear and more importantly, my schedule.

This past week was incredibly long and Kat and Kim said the same thing. It must've been the inauguration and the absorption of so much energy and excitement. I was also very entertained by the entire event. However, it was a very disappointing week as the dialysis night time cycler failed to work for me. I cannot even go there now, because I tried it again last night and it alarmed every 5-15 minutes. I abandoned it around 10 and was up til late finishing a manual exchange. Latte further encourages me, even as he is bleary eyed and achy from lack of sleep.

I may be having procedure on Wed to explore my gut area - they need to see what is wrong and why this is so slow. Simple lap but it still will "slow" me down. it has been over 13 weeks of this!
i see the surgeon tomorrow & he will schedule. I also have a rescheduled nephrology appointment because for the 2nd time, the doc canceled our meeting (and they didn't call me! I'm afraid i have built a case against him and his nurse!) I also have some great new listings and some dear families I am helping. Most importantly, my hair needs color and my nails (as usual) look ragged. Since that is not important it gets pushed on. Oh, yes, my tags have expired now for 2 months. I've had offers of help; just trying to figure it all out. Sooo. all that is to say, this week seems kinda full!

Update on Monday...Showing Houses & Clinic Visits

2009-01-19T05:24:00.000-08:00

To many dearest friends:

I got a nice email from you about 2 weeks ago. I am doing well. I pretend like I am not doing dialysis 4 to 8 hours a day (Unbelievable to me!) but I am. I switch to nighttime soon so that my days will be free again. I have to go to the clinic right now once or twice a week for a blood draw, but soon that will be less as well. So I’ve gotten behind. I know you understand. I have been so incredibly blessed in ways I’ve never expected, and in ways that I’m sure I don’t understand.

This slow time has been good for me to really look at my life and my work. I’ve remembered that I love my life and the work. Nice to step back and take a break, so this economy has really been good for me in many ways. I still work on the fear of poverty and lots of other things like patience. I try to work on not running John off, because as the challenges get greater, He has more and more to be frustrated about. His remarkable attitude helps me. My parents are amazing and it is sometimes hard to talk to them as much as they’d like because, well, you know, they just love me so much.

I am constantly working on the balance between being absolutely so social, which is my natural state, and taking it easy and slow to do things like sort my laxatives, stool softeners and monitor my insulin pump. FUN CHOICES! Fortunately I have one or two friends that hear from me 10 times a day to get updates on the extremes: how hard I laughed at somebody’s joke last night and how long I stayed in the bathroom from 5am. (read: diaherreah or constipation! Fun) Another blessing: I am not in pain, well, almost never. I mostly feel swell.

....The next two weeks I will be dealing with the nighttime exchange and trying to pass the test to do that. (I failed it last week!) I have new listings that I am excited about and some really great clients. I actually think that it will be fun!

Night time dialysis soon...countdown

2009-01-13T11:56:00.001-08:00

This Thursday and Friday I am to complete all day classes on night-time dialysis. This will allow my days to be free from exchanges.

I cannot believe that this is finally happening. For 10 weeks I have been doing 4 exchanges a day, sometimes to the tune of 8 hours per day. But lately, the time has come down and my attitude is better. Now I don't get angry when the fluid doesn't flow quickly, I just get more laxatives. And I cancel appointments. (Oh how I missed so many parties this past holiday). I still get very disappointed but I am trying to match Latte's adaptable nature and good will.

I've tried not to allow myself any excitement about this new night-time machine, because I know we are going to be up all night messing with the alarms, etc (apparently the machine alarms when there is a slow flow) But I know it is for a short time! Soon we will be sleeping through it all, just like i sleep through the insulin pump alarms now! ha Sleep is totally overrated. You can get by with less. A recent NYTimes article says that your mental attitude toward little sleep affects how you feel the next day. I have adopted new attitudes toward not sleeping. (ask me in a month how i feel)

I've really enjoyed the company of my friends the last few days. I've many impressions and a little delight at hearing stories. Dinner last night and lunch today was the greatest therapy in the world. It takes some extra planning to get it in right now, but it just seems like so much more of a reward than real therapy. (that probably sounds like sacrilege!)

In the same gatherings we've talked about the movie "Doubt" and is gossip a mortal sin or venial sin? Then we proceed to tell the story about the fantastic hilarious Nashville woman that, returning home from Las Vegas with her husband, she thinks she's unexpectedly pregnant. They get an ultra-sound and I'm sure she was completely stressed out. When the tech says, "There is a baby in there!" The mother said, "Are you sure it's not a bottle of vodka?" I do love that woman!

Then I heard about the covert meetings my artist friend is having with a Belle Meade woman. He's building a table for her. She meets to give him money in the Sperry's parking lot. She doesn't want her husband to know about the table and the money she's spending. "Well I told her that it was going behind her sofa in the den, he's bound to SEE it."

very few things delight me as much as a darn good story. The real thing is so much more fun than fiction.

I was thinking about how much I wanted to get drunk last night. This is a very rare feeling for me and most of my friends know that I don't drink. I realized sometime in my 20's that I had never had a whole beer. While I admit and am proud to say that I was dancing more and crazier than any other person at the frat house, I remained sober. There were aprox 3 times that I got very drunk and those were the only times that I drank while in college. I never even sipped the rest of the time. It was either a shot or three or nothing. And in my 30s I realized that I didn't like the wine slurping that everyone else was doing. I bought my first condo on the money saved at the bars. I used to walk into The Trace and Billy would wave at me and pass me an ice water. I became proud of keeping my wits and my balance, esp on the tables.

I was wondering why I felt like getting drunk and I'm sure it is just the physical escape when I'm tired. I resolve to keep my record though because it just doesn't seem worth the drag it causes on my diabetes.

Well, the UPS just delivered my new copy of "Light Bread" - ordered from Amazon, written by my amazing friend Cordell. I suggest you buy it, of course. I carried my dialysis bags to the door to sign for it. One was dragging on the floor, half full of yellow fluid. Niiiiice. He was kinda cute.

trying to share the calendar: experiment

2009-01-12T12:24:00.000-08:00

John is kind enough to help me with my google calendar. The "solvenator" as he likes to call himself, suggested that I make my own calendar for the dialysis nurses. I have voiced many complaints, here and otherwise, about their disorganization. (they lose my fax number each week, they lose my pharmacy number, they don't call in the scripts like they say they will, they take don't keep individual calendars, they answer cell calls at all hours, they don't have a receptionist, the list goes on and on...)

Today, unbelievably, Candy called and asked me on what day had she given me iron? This has been over a month ago and she didn't seem to have it in her file. She also mentioned last week that she "forgot" to take my aluminum levels, after drawing 4 vials of blood. (I got a quick lesson on high levels of aluminum, which has never been mentioned before. No more aluminum canned drinks or apparently, deodorant, though I'm just not sure because ....they've never checked my aluminum! )

So the Solvenator's idea that I start keeping my "health calendar" and that I send it to Candy the nurse is probably a good one. I can put my daily input /output of fluids, weight, BP and temperature (what I keep up with daily). The problem is: Isn't she getting paid to keep up with my blood draws and my schedule? Why is the further burden on me? After the big mess up last week (I was supposed to bring my PET test in. I called her and she told me no. Not to bring anything in.)I guess it is better that i keep up with our schedule. I sure am hard on her about her inability to keep a calendar. I haven't voiced this to her. I'm just harping here. Thanks for indulging me.

Who Deserves This?

2009-01-09T08:00:00.001-08:00

I heard that someone in someone else's bookclub said that I was on a church's prayer list. I got a message that I am being prayed for in Knoxville. I have gotten over 300 prayer cards from First Baptist in Hendersonville.

I cannot write about this now.

Those closest to me continue to bring me dinner and order special rice for me and listen to me detail my day to the most boring extreme. John is sick for the first time in years and he hasn't complained once; he still insisted on cleaning up my bags last night though he had a fever.

I continue to make such remarkable progress. I have come to a new level of calm: not panicking when the exchanges do not go well. I am not so disappointed when I feel terrible. I am more often upset by grace and its meaning than having to arrange my schedule around my healthcare. Trying to understand what someone deserves and doesn't deserve is on my mind this morning as I work freely and happily.

I am energized by my work. I can help others. I really do love it and all of its challenges. It continues to teach me more about myself and beat me up once in awhile. Since I have so much to learn about how I react with others, I want to keep doing it for along time.

Let me know if you are there!

2009-01-06T10:33:00.000-08:00

Thanks for letting me know if you are reading this! I need encouragement!

Thoughts on Waiting....Uncertainty

2009-01-06T09:43:00.000-08:00

So many things are in my head - the last 2 weeks have been very full and I have so much to think about (it is so much easier NOT to think about it all and just play Scramble on line).

The things I've seen and heard over the last few days are almost too much to put here. And maybe because most things are removed from me, they are not necessarily life-shattering. But everything is effecting me strangely.

Acquaintances from high school lost their only daughter; another Goodpasture good man is having more cancer surgery; mom's best friend had her brain tumor removed and suffered horribly from the fear and confusion that the tumor caused. This is everyday news for a 44 year-old gal in her hometown. But I cannot help but have these incredible feelings of deep humility and gratitude for where I am now....and 5 hours later be perfectly furious and in tears that I haven't had a bowel movement. Really, after 8 weeks of dialysis - 4X a day, I am being so gentle with myself. But this morning was a challenge and again showed me how volatile and fragile one's mind can be.

A seriously low blood sugar got me downstairs into the fridge. at 5:30am. I had been dreaming about trying to get some grapes from the neighborhood association but they were all spoken for. The numerous adjustments made for the dialysate (sugar water) I'll save for my Nurse Practitioner Insulin Pump Specialist. (God, I love Angel) The dialysis fluid impacts my blood sugar significantly and I have to remember that....every minute.

Since I had to go into the clinic for my blood draw at 8.30 - I thought I'd go ahead and exchange. Nothing doing. I had run out of stool softeners the night before but thought i could double up on the laxatives. I never knew there was a difference before now.

Long story short, It is noon and I still cannot get the dialysate out of my body. I have tried more drastic measures, that I need not describe here.

In between the blood draw and the couch time, I have gone to look at some foreclosed property for a local bank. I was soooo excited to see that the property was in a neighborhood we will call "Fieldstone" and did some quick research on it yesterday. What a great area in Brentwood! No problem on getting the bank its money. In consideration of time and working on my bathroom visits, I sent Latte out to p/u the key and meet me at "Feildstone." Well, after a drive to Franklin, my researching team back at the office let me know that the house was off of I-24, basically in gangland! It was another "Fieldstone" in the Nashville area!

The real nice part of the story is that I did get a laugh out of everything that followed. The train tracks the house sat on, the 3500 sq foot deck and above-ground pool, the toilet in the closet. I laughed when I got on the interstate going the wrong way back to West End and realized that I was almost to Hermitage (how embarrassing to admit that here) I also laughed out loud when my phone died, but just before I got a call from Vanderbilt.....(OMG THIS IS IT. THEY HAVE THE PANCREAS!) But it was my client instead!

I was sad for the bank (is that possible?) and the appraiser that might get deposed! And filled with all kinds of inspiration to write some real estate articles about the market, etc.

I have projects I want to work on for future investment, some clients that need help, some great houses that really need to be sold.....I have much to do, I enjoy it and I am grateful. My challenge is to remain grateful and not resentful when there is pain.

(there is an arc of pain and weakness that can be directly proportional to my need/love/anger of Latte. Poor guy. This morning when I was hurting and sweating at a certain point, I only wanted his company. When it became more annoying and less painful, I was mad that he wasn't making me breakfast. Or rushed off to buy me another enema. What a brat I am. Yet I know that he is just ....here, so that he is really a true reflection of myself. And I am so lucky that I haven't chased him off yet)

The NYT (thank you from the bottom of my heart Phillipe) had a great article this Sunday about uncertainty. Apparently it can cause more stress in your life than anything. Our entire country is dealing with this now, so it is fitting that I have my own brand of uncertainty. Waiting for 2 organs, trying to get dialysis running on a schedule, etc.

The article, one of the most popular this week, states that uncertainty can be worse for you than bad news. The studies were adjusted for the overly anxious and covered several years. The wonderful thing is: "people underestimate their ability to cope with a bad situation." I knew it! I cling to this!

http://www.nytimes.com/2009/01/03/your-money/03shortcuts.html?partner=permalink&exprod=permalink

Holiday to the Baird's: "ChangeinPlans.net"

2009-01-02T08:04:00.000-08:00

Happy Birthday India! I did try to call on your birthday but I must've had the wrong number again (upgraded the blackberry to curve, not storm). I love you lots and cannot wait to read posts. I have quit writing on mine because my patience and good humor have eroded. (dialysis is still taking 5-8 hours per day) My dear old friends Angie and Emily (married David T an authentic NYorker) are visiting which is lots of fun and keeps me very busy. I was thrilled to learn that Angie follows your blog as well and she is also delighted by your writing.

We've had many out of town visiters with game nights and pot luck dinners and lots of laughter. Tom and Rob came from San Fran -- Tom with an excel spread sheet of all the Meat and Threes in Nashville with hours open, whether they served catfish or homemade biscuits and other critical info. If i suggested a place that wasn't "on the grid" it started a whole flurry of research and phone calls, even a drive-by on off hours to see if we could peak at the menu. You can imagine that in between the long hours of dialysis, I was eating stuff that I never eat. On the first day that theywere to arrive, I drove home at 4:30pm in the complete dark. I believe it was the shortest day in the year). Tom & Rob's plane was to land and I was to pick up the first installment of food at Sylvan pak, specific orders of course. I panicked when I drove home and all the lights were out in Green Hills and on West End! What if the electricity was out at Sylvan Park? No food or cold food for Tommy! so i rushed over to Sylvan park (1 mile away) and was pleased to see the lights on, the only ones on the whole street. Tom Wofford came as well and it just feels more complete with him here. I feed off of his IQ - I cannot get enough of him. We laughed for 3 days but my mind was calculating the entire time.

I'm trying to get all 3 to move here. Rob & Tom are thinking of Savannah for retirement- Rob says it gets too cold here. I took them to Radnor which I think really impressed Rob. He took a dozen pictures and made one his screen saver. It was smoggy and cold and goregous. Evidence of beavers everywhere. Took them on a tour of the "star's" homes. Gene taught us how to make up the owner's of the houses as we drove past the giant estates. "That is Donna Summer's house" or "That is Michael McDonald's house" That is Dolly Parton's and so on... we did know where Donna and Dolly lived, but we didn't necessarily drive down to that neighborhood.. We played games with the Baker Family (in from all over) and Johnna even came to dinner one night. Instead of our usual party, we've had a dinner party or two with friends bringing food. I'm afraid Johnna left too early with the real "dish" going on after 10 while I sat on the couch doing dialysis. Seems like every dinner party now finishes with me doing another exchange while someone else cleans the kitchen. I am so blessed. Someone else has helped with the cooking. Kim And Bruce have become more than family to me. and my family are saints, including John.

So it has been a beautiful busymonth of lots of visitors. I am sending Rob weather reports of freezes in Savannah and lots of gay-interest art and events here in Nashville. Tom H and Tom W are both pulling to move here. One night we played Balderdash and got so tickled when David (big Italian, old downtowner from NYC) used the definition "a beautiful flower that grows above the treeline and is a harbinger of spring" Tom said, "I don't think the dictionary is so romantic" and we laughed about how each player thought differently but consistantly. The next day he wrote a thank you that said "I want to live in a place where people talk about the NYTimes OpEd piece and laugh at things like the 'harbinger of spring'" It made me feel so good! I think I may get them here in the end.

The other big change this holiday is all the dinners & parties I had to miss. John and I have been getting away with 2 parties a night during this season for year- Nashville is so small and since we are sober, we can go from place to place easily. This year we've had to stay home, which has been mostly fine. I still have a lot of calls to make about why I said I was attending their party and then didn't. But the visitors to my home have been nice.. oh, and John had a last minute Holiday Open house and Art Show. Sold 5 paintings!Also cousins came and other friends to the Musci City Bowl and today Christine from Hawaii arrives. I am on my 2nd hour of my first exchange today(i do four) and you'd think I could accomplish alot here on the couch. but i am feeling stuck and fighting the anger and tired of waiting. Tara Brach has some quote about pain being multiplied by resistance and I do understand that. I just have to keep occupied! Anyhoo, thanks for reading my long notes and rambling. Let me know what the plans are. Don't forget more pictures...you are an amazing photographer India. I'm so glad you were born and that you are my friend. LOVE PEACE

Surprised to learn so many donors

2008-12-12T09:41:00.000-08:00

One thing that has really moved me during this experience is the number of people who have called and visited who have had a family member that has had a transplant. The stories are amazing and impressive.

Some very old friends and acquaintences tell me that their own mother had dialysis for years and they truly know what it is like. Others reveal that they gave a kidney to their brother or mother. Unbelievable. It is very very humbling to know someone like Bruce K or Doug S who both gave their kidneys to family members.

I am without words when someone offers to be tested. And ask Latte man, I'm rarely without words.

One story I heard involved a transplant at Vanderbilt. A woman my age was in tears by the elevators at the Vanderbilt clinic when she ran into an old boyfriend from high school. The boyfriend always had admired her but they had never been serious. The woman told him her story: her mother was very sick from dialysis and her own kidney wasn't a match for her mother's body. On the spot the man offered to be tested and within a week he was the donor. Two years later, they began to date. Soon after, he proposed at a trip to Disney World.

Comments?

Sirens Make Me Think

2008-12-12T09:15:00.001-08:00

Yesterday was dark and wet. Cold and icy. I kept hearing sirens on West End and Phil called a few times to tell me about all of the wrecks and a death on I-65. I told Tom H about it all and my sick feeling in my stomach that I was going to get the call for the organs.

He said in his funny pretend voice, "Maybe you should go to the scenes of the accidents and ride with the victim to the emergency room. Just to make it all easier."

It is all awful and strange and now that Christmas is so close I find myself making plans with so many friends and family that I am planning in my head that the surgery won't happen until after the holiday. After everyone opens the neat gifts that I got them! After I've gotten to go to the Thompsons' and the Watkin's - Rice's, etc etc. After MamaLott and PapaLott's house and after the Fennell gathering on Christmas day!

But You-Know-Who has His own plan. I've got to remember that. And keep my kitchen clean.

Holiday parties

2008-12-10T21:07:00.000-08:00

Does it count when someone offers you their kidney while tipsy at a Holiday party?

The Movie Sounded Funny This Morning...spoiler alert: bathroom talk

2008-12-04T13:33:00.000-08:00

I think I want Amy Sedaris or Drew Barrymore to play me in the film. I just cannot see Drew with diarrhea for 5 days straight. I'm not sure how that is going to play. Fortunately, I can see Ms. Sedaris making the most of the GI situation. Maybe Drew will be able to make it cute when she has to change her pants twice at the gym. Or the reaction of cute men at the gym to the smell could be a chuckle.

In the movie, Phil, I see as played by Will Smith, though Phil is not black. Cordell is black and Cordell must play Cordell (he has some experience and I must insist that he be cast as a stand in. Dallas ticket sales will pay for the movie alone) Lynnette from Despareate Housewives will be Carlyon, of course. Holly Hunter, Johnna. or Karen. Sally Field could be my mother but must be played more angelic and less neutrotic than the mother she currently plays. Latte, the whole man, the Renaissance wonder, the miracle nurse and sometimes a pain in my tush, could only be played by Steve Martin. I know through his autobiography and short stories that he is a true sensitive.

So this morning my sense of humor mislead me to believe that I could write that screenplay about my life. The long hours of dialysis, the nurses calling daily to make me describe my poop: for some reason I could just see Drew Barrymore sitting on a toilet trying to schedule a house showing for the next day. Yes, it was funny then. But 2 hours later, when I had to change clothes due to the severely strong dose of SORBITOL, my humorous feeling eroded some. When the doctor said I had to DOUBLE UP on the Sorbitol for 5 days straight....Well, I guess I am going to have to get some diapers. Fun.

There was one scene that I replay that is very funny to me. My nurses were all gathered in the little room and fussing over me. I'd broken down a little bit and cried to them for the first time. The 8 hours/day needed for the exchange was too much. The diarreah was getting old. The dietician and the social worker both were trying to talk to me to check it off their list. The dietician had to tell me all about pottasium and calcium and make me sign a sheet that she had gone over it with me. Lucky for me, no potassium flash cards this time. Meanwhile, the social worker had a big whig in the insurance department driving in to meet with me next week about Medicare. What was my schedule? she asked. Through my tears they were all trying to comfort me as well - there were 4 of them, and Toni was preparing to draw my blood. Everyone was talking at once, but when Toni leaned down with the needle and stuck my bare arm, everyone in the room leaned back and gasped, like a Disney cartoon. Really it was funny and I started laughing. I've had my blood drawn there at least 10X but I've never seen this kind of reaction.... They are all lovely women. It makes me feel good that they care that much.

Even though I think some of this is funny, I don't think this will play as a movie. Just to let you know, I had too busy a day to have to run to the potty every 10 minutes. I'm trying to finish my second dose of dialysis now, get my bloodsugar right (it is spiking) and get to a funeral visitation for someoen that I admired and was so fond of. I usually worry about crying at a funereal, but today I will be worried about another kind of leaking.

I told Phil that I had on 2 pairs of underwear to try and get me by. He said that my vagina must be in shock since I usually don't wear underwear. Shame on me for ever telling my biznes.

Video of Peritoneal dialysis

2008-11-25T18:45:00.000-08:00

Here is a link to a video on the type of dialysis I am trying to get ok'd for, overnight PD. The video is 6 min long and boring, but shows what I will be doing at night before bed and in the mornings. http://www.youtube.com/watch?v=Evg0K2hhSx0

Currently I am doing the exchanges manually 4x a day with the same big bags of fluid that you see in the video. The time needed still feels like alot, but I feel loads better and am working and catching up on personal things while I wait.

thanks to everyone for the favors and visits, it sure has made the time pass and gets my mind off these exchanges. I am so lucky. What funny stories I've heard....love you all

Updates on progress....slow going

2008-11-21T12:57:00.000-08:00

Yesterday was not so good, but it wasn't horrible. After spending 3 hours dialysising in the morning I started trying to clean up the staging area. What a mess. I'm missing several things and the way the house looks is an indicator for future lost things.

I don't even remember why, but I ended up in tears in the shower trying to get ready for my noon clinic visits. My insulin pump was alarming, I had a nephrologist's apt after the clincic visit, I wanted more than anything to get in my bookclub meeting and some real estate work! John told me that he couldn't go with me so I started crying, I suppose to make him feel bad, though I hadn't thought about that at the time. I usually don't want him to witness the pity parties, but I didn't care one bit yesterday. Besides, some good crying is supposed to be cleansing or something, and I was taking a shower for goodness sake. And afterwards I had trouble with the pump. But just as I finished refilling it, I realized that I needed to dialysis again. How would I get it in if I didn't do it quickly - before I left for clinic. And if I didn't get it in, I might not get to go to the gym or later night, the bookclub. OH these 4 exchanges are taking too long.

Sure enough, the ladies at the clinic and my nephrologist all say that this is taking too long That the point is for me to have a life. This 8 hours a day is too much. So they sent me to the Xray.

Results don't say anything except maybe try some more laxitives..... Anyhoo, they added 2 more prescriptions, so yippee, I get $60 of free grociers.

I wanted so badly to be the organizer for the Dean & Debby show next Tuesday for a few of the bookclub women. Plus, my mom would love it, Andrea's mom would love it....I just cannot commit until I get these times down on my exchanges.

I must be patient.

The visits sure do help and I had some of the best last night and today. The prayers work. It is amazing. Nick Thompson's mom has some heart issues, so we must pray for her.

Random thought

2008-11-21T12:55:00.000-08:00

I was just thinking today what a daggum shame it is to the woman of Nashville that Tom Amaranti is gay.

Time onDialsis: Working on Patience

2008-11-19T13:01:00.000-08:00

I realize that my optimistic personality tends to want to write here. Sometimes my fearful one. I am coming to understand that this dialysis is going to be a day by day, moment by moment thing. The days are not all good, and the dialysis is maddeningly slow. The importance of the bowl movement, the pain, the diet & the continued sudden tiredness ...everything can be overwhelming. (and the stocking and the set up and the sterilization....)

To maintain a normal day, to continue to work, which I have chosen to do, I have to make plans: meetings & appointments. But this afternoon, I had scheduled a friend visit after our work and my workout. But my dialysis got in the way. After a fast drain -out, the fill bag is just hanging there, taunting me. ARRRRGH. I want off this couch! I got up at 6:30 this morning just to try to get them all in today. I worked faithfully on my real estate by computer here on the couch - now I'm ready to go to the gym! But alas, my bowels must still be blocking the fill bag. Barely any of the dialysiate is going int!!!!! OH MY.

And my friend is taking the time to come sit with me for my 3rd exchange, which will now be delayed another 2 hours. What a pain. well, i'm blessed to have company.

Great Day and Packing List

2008-11-17T20:24:00.000-08:00

This is going to be my wardrobe for the winter: Jeans, sweats & party dresses that I can wear boots with! (my fat ankles or "cankles" will fit!).

The painting to the right is one of Latte's latest.

Ok - I just felt fantastic today! So I'm hoping I get invited to parties again! I think I was 90% of myself today. Highlight of the day was seeing little boy Robert Harrell who broke my heart with his constant grin. Little beetle was divine. I wanted to hold him so much, but his mom Michelle "Hussein" Harrell spilled the beans about a runny nose. I cannot get a cold right now. Let me tell you, not holding that boy took the same discipline as dialysis care. Another thrill was seeing Jeff, who has been an intimate, instigator, invigliator, interloper & an inspiration for over 25 years (gasp).

Someone asked me today how often do I do this and how often do I do that, so I thought I'd write it all down. I never have, even with just the diabetes part. And John wants me to go on trip - so here is the packing list too:

Change Out List and Supply List for Dialysis & Diabetic Care

TO DO
Exchange Fluids - every 4 to 6 hours (this is the biggy - takes 1-2 hours each time)
Sanitize area - 3x a day Glucose check - 8 x day plus more as needed
Adjust insulin - 5-6 x a day
Renegel - every meal and snack
Sodium BiCarb - 3x a day
Enalapril- 2X a day
Norvasc - 1 x a day Restock bags of dialysate, masks, supplies for exchange Record weight -1x a day take blood pressure & record-1x a day take temperature 1x a day
Stool softener - 1X a day or more as needed
Laxative - as needed but impt EPO or Procrit shot - every 2 weeks
Blood draw for transplant - 1X a month
Blood draw for dialysis - every week (currently)
Kinetics test - don't know - once a month? Iron infusion - as needed (had one this week)
PET Test - don't know - just one time, i think.
24 hour urine -1x quarter?
Insulin - changed in pump every 10 days
Batteries - in pump every 2-3 weeks
Batteries - glucose monitor 3-4 weeks Work out or walk or go to YMCA - everyday! Eat good meal.

TO PACK
Insulin pump supplies including: test strips , catheter sets, alcohol swabs, backup batteries, injector, refill cartridges(insurance is very strict about refills and very expensive. I find myself constantly out of these supplies! ugh)
Glucose monitor: test strips and backup batteries (it is a fortune for test strips, yet the technology hasn't really changed in years)
Dialysis supplies: dialysiate, 4 four pound bags for each day and backup, extra bag, blood pressure cuff, thermometer, mini scales for bags, iv pole, masks, gloves, dressing, tape Glucose tablets & Back up meter

Ok, not so bad! Honestly, writing it down helps. Now I have a list for when I go to the hospital for the transplant. Supposedly I am to bring all meds & Never let the hospital staff touch your stomach catheter, according to my training. My old friend Christy is surgical nurse and she says that dialysis patients that are in for other surgeries indeed refuse to let anyone near their cath. Ha.

So I'm tired from a big day of feeling good and working and seeing friends. I'm almost done with my last exchange and I have 1 more work email to do! Caio!

Long hours for now....

2008-11-15T06:40:00.000-08:00

Thank you to so many friends reaching out! I have been delighted by the phone calls and love and hope to return it all.

Dialysis is going a little better everyday. My lord, it takes 8-9 hours a day!!!! Truly unbelievable. Hope to be able to convert to 9 hours overnight by Christmas, but I have to pass a PET & kinetcis tests. The waking hours not on the drain/fill bags are severly limited. And some of that time is prep: cleaning, sterlizing with bleach, restocking & heating fluids, disposal. And the insulin pump/diabetic care continues throughout the day! I now understand why people don't work when on dialysis. Of course, I think I am an expert on time managment so I'm learning do my computer work and work calls, etc, while I am draining/filling. Yesterday was the first day that I sat at my desk during the process. I forecast that I will be doing that from now on. I have a better understanding that my work does make me happy.

The symptoms of kidney failure are so weird and encompass so many systems of my body. I've mentioned ad naseum some of them. They are starting to go away very slowly(John is especially happy that some of the GI symptoms are subsiding), and the best thing I've noticed is a better sense of well-being most of the day.

I was reading in "The Curious Incident of the Dog in the Night" about animals vs. people. Since I am stuck on the couch right now, I'm going to paraphrase; the narrator is describing the difference between dogs that are wounded and people: If a dog breaks his leg and he has surgery and pins in the bone sticking out afterward, he will still happily chase a cat when he sees it, but a person with the same surgery thinks about the pain in his head. The human imagines the bones crushed, the pins in his leg, the days of pain ahead, etc. And this fretting can be a great part of my day. When my stomach hurts or my legs cramp up, I suffer through the pain, yes, but I am worse for the worrying. The stomach aches torment me with thoughts of hospitalization for Peritonitus (common for my type of dialysis) and a canceled transplant. The severe leg cramps that start with wierd vibrations in my leg (like the warnings of an earthquake) threaten to keep me up throughout the night.

I have recently gotten better about relaxing through all of this. I'm letting the fear and worrying go. Luckily, I've had some practice with insulin overdose throughout the years. (I'm one of the only type I's my age that I know that has never completely lost conscienceness.) Tara Brach says that any worrying about the future compromises today. John Lott himself is a perfect example of living in the moment and envied for this by some. I truly want to stab him sometime when he won't partner with me in my occasional anguish over some business something or other. ( I have argued that worrying equals action...! Safety!....what do you think?)

So I actually feel relief this morning and really good and especially nice: No Worries....well maybe just a sqeeky little voice.

Messages from friends

2008-11-11T06:56:00.000-08:00

This came in just now from my friend India, who is traveling in India for a month:

"Salaam from the new Indian Elephant Polo team!!! India is amazing!Just heard you were waiting again - thinking of you and sending love and the blessings of the Hindu god, Ganesh, the remover of obstacles!"

I hope to post the picture she sent!

Studies and research

2008-11-11T06:23:00.000-08:00

Tuesday morning: I am sitting on the couch doing the big switcheroo. Draining the bag and filling the bag. I'm getting the time down to 1 hour for each exchange and am work done while sitting here. I'm returning calls and emails, setting my schedule for the rest of the day. I do want to make this time useful.

I've done more research on the Peritoneal Dialysis, and reading these papers often leaves me more confused than before. For instance, I was trying to find out how much glucose is going into my body and is absorbed, so I can get my insulin dosage correct. This is the third article I read: (skip to the highlighted parts):

Background: Diabetic patients often have reduced insulin requirements when they progress to renal failure. Since peritoneal dialysis (PD) solution contains glucose, the insulin requirement of these patients often increases after commenced on PD. However, the change in insulin requirement has not been studied systematically.

Methods. We study 60 consecutive patients (32 male) with diabetic nephropathy newly started on PD. Their insulin requirement before and 6 months after initiation of dialysis is compared. Clinical factors affecting insulin requirement are explored.
Results. All patients received a standard 6 l/day dialysis exchange. ... The average dosages of insulin 6 months before and after PD were 0.27 ± 0.28 and 0.37 ± 0.29 unit/kg/day, respectively (paired t-test, P < r =" –0.307," p =" 0.017)" r =" 0.284," p =" 0.028)," r =" 0.433," p =" 0.001),">the dosage of insulin increased by 1.5 ± 11.1 unit/day. Each extra 2.5% 2 l exchange results in a 7.5 unit/day (95%CI 3.2–11.8, P = 0.001) increase in insulin requirement.
Conclusion. Diabetic patients have a minimal increase in insulin requirement after initiation of PD per se, but the dosage of insulin increased markedly after exposure to hypertonic glucose solution. Our result provides a basis for the dosage adjustment of insulin in diabetic patients newly commenced on PD.

Did anyone get that? Is there a math babe out there that can help me with that calculation?

The difference between 1 unit and 11.1 units/day is enormous for me. One extra unit can give me severe hypoglocemia. So does a scientific study of this nature really help? Hmmmm

I found another article that demonstrates weight game from 10% to 30%. That is quite a range.

Learning Dialysis on a day to day basis

2008-11-09T08:30:00.000-08:00

Spoiler alert: if you don't want to hear about the bathroom stuff....skip this entry.

John has gone to get me an enema. This is going to be fun.

For the past 2 days, it has taken 2 hours each time that I exchange fluids. Exchanging fluids, draining my belly and refilling it, are the essential procedures of the Peretenal Dialysis. It should take 20 minutes. Everyone seems to think it is the lack of bathroom time - so I'm going for the drastic action as suggested by my very nice nurse. Really, this is nothing, some of my friends do this for fun.

So I'm doing the exchanges four times a day now (starting yesterday) and the time it is taking is testing teaching and showing me patience. I don't know why I said that because if I'm getting tested - I am failing right now.

Ok, I am going to need visitors during these exchanges, I think.

Kim took me on my first walk yesterday with a belly full. I really am unable to put into words how beautiful it was. Kim, the best Safari tracker ever, saw a buck by the water. The sparkling off the water almost hurt my eyes. He was a hunk. I've never seen a buck inside Radnor. And I've got new appreciation for the girl friends that have been pregnant. I'd say my waddle represents about a 4 month pregancy gait. I'm working on the grace that I've seen Tania and others have. I got better-less waddly- halfway around the lake; the pain subsided. But I looked like a duck.

Today I have been hooked up to the pole and drain bags since 7:30am. It is 10:48. I'm a little shocked by the time. I fell asleep for awhile, John went to get me a paper. The drug store run as well. He's the solvenator, he says.

An old friend walked in during a low point yesterday. I was just at the very bottom of a crashing blood sugar and I was particularly uncharming at the moment she walked in. A little private pity party with tears and all - you should of seen her glide in and comfort me. "God draws straight lines sometimes with a crooked stick, " she said. But the thing that stuck with me is what her husband taught her: TRUST ACTIVATES GOD.

It is so true. My very belief in John has helped me be open to his crazy ways. Same with someone working for me or in a friend. A fabo saying, I need to learn embroidery while I'm stuck here on the couch!

Come see me.

FalseSo Alarm

2008-11-07T16:49:00.000-08:00

To Pier & Everyone:

It was a false alarm. Up all night - more about the calls later.

Call for a Kidney

2008-11-06T18:33:00.001-08:00

I was eating a grapefruit, so happy with my little dinner. You'll never know how much you love grapefruit until you know you can never eat one again. I'm not to eat one after transplant.

The call came.

It was 8pm. I was getting ready to watch The Office. The caller said "This is Dr David Schaefer" and I dropped my grapefruit. They have a potential kidney-pancreas for me.

I am to be there at 6am....The emergency room that is.

I was going to relate the long and exhausting week of training to you. I was going to tell you all about the wonderful training nurses and the amazing ways that John and my parents helped me. I wanted to discribe dialysis and the new understanding I have about the process. And that I was more relaxed about the whole transplant thing.

But here I am, about to tell you, my dear friends about how wonderful you are! These past 2 weeks have been full of dinners, debates, tv-watching and lots of love. One dear friend massaged my foot for an hour, then the other friend tried to outdo her. The next day, Pete called to try to get me to say that he had messaged better. I loved the competition.

Even now, my hands are shaking; I'm so excited. But my house is suddenly filled with Kim, Bruce, Amy, Bill & Lorrie. They are cleaning my kitchen and helping me file in a hurry....I am so lucky and blessed.

Second Day of Dialysis

2008-11-04T09:06:00.000-08:00

Well - they sure do pump me full of fluid. My stomach is so full, I labor at breathing. John tried to tempt me with a walk (I usually BEG) him, but I'm afraid I cannot do it. They say I will get used to this feeling....

The dialysis nurse said to John today: "Don't let her lay there on the bed and you do everything!" we got a real big laugh out of that!!! John would be a fantastic high school coach.

First Real Day of Dialysis

2008-11-04T09:05:00.000-08:00

This morning, I'm anxious to take my first shower in six weeks - I cried a little wimpy whimper when I remembered this morning at 5am! I woke without the flu like symptoms that I have had every morning of the last week. Neither my stomach nor my legs hurt! I'm tired; I'm a little froggy (foggy) still - but I feel something like excitement at the new energy I'm going to have. Yesterday was my first day of dialysis. After many many years of dread and self-imposed ignorance, I have learned about this daily procedure and faced the future. I can do it...I know it is not going to be easy (four times a day for the next six weeks...) but I can do it. (even as I write this, I am so emotional because I really am so tired) They pulled EIGHT pounds of fluid off of me yesterday. My kidneys had reached the very end. My BP was so high for the last week; I was sleeping only one sweaty hour at a time. The GI tract symptoms covered every realm of misery. The itch has left me scarred on the back and stomach. And the leg cramps are exhausting! The leg cramps started at 8pm sharp and continued until my little kiddy bath at 8 am. Talk about sharp. Poor John was often woken with a scream, not kidding, when the REMs were extra deep and the cramp was extra strong. (I began to try very hard not to wake Latte man up. I'm such a drama queen, even when I chanted over and over: do not make a noise for John...I prayed that I wouldn't wake him...I still moaned or cried out when struck during sleep) Anyhow, yesterday, the IV bag was about to burst after draining from my periteneal cavity for 10 minutes. John said that my face went from Pumpkin looking to back to sagging - and beautiful. We all laughed, but the nurse said, yes, your face doesn't look swollen! So I was happy. ....EIGHT POUNDS... The wait for the transplant continues. John and I thought I'd go to Vandy over the Halloween weekend. My nephrologist says that the call will come only after this week of training and I get the supplies delivered: "You will take the whole week off for training, rearrange your entire house for the supplies and then you will get the call from Vandy!" Well, TWENTY-SIX boxes of supplies are going to be delivered on Thursday. Hmmm I've had some very nice calls and emails over the last 48 hours. I am again humbled by the prayers and help from others. One friend wrote this morning at the end of her email: "I"d love to spend time with you if you want some company during any of your trips. Just email or call -- I'm around all week and weekend and the weeks after and on and on too." That last part got me. And so it is with my family of friends. And my parents. The hours and hours of listening, especially from those brave enough to be "trapped" on a walk with me, are the greatest gifts to me. The sheer stamina of my friends throughout this past summer - it is amazing to me. The people that continue to call me and send little notes - it kills me. Thank you. You really make my life. So I'm off to the shower. Pictures posted later!

Ballooning in Size: Get this Urea off of me!

2008-10-30T13:39:00.000-07:00

Ah Oh

While I was somewhat prepared for the weight gain and swelling, I had no idea that my shoes would quit fitting. My most comfortable ones don't work today.

I did squash myself into some old jeans and sqeezed the pump into my pocket. You should see me walking.

The leg cramps were fascinating and made me so mad last night. My legs twitch twitch until they cramp like lightening. Drink water, they say. i'm drinking, I'm drinking!

First Day of Real Dialysis

2008-10-29T08:58:00.003-07:00

This morning, I'm anxious to take my first shower in six weeks - I cried a little wimpy whimper when I remembered this morning at 5am! I woke without the flu like symptoms that I have had every morning of the last week. Neither my stomach nor my legs hurt! I'm tired; I'm a little froggy (foggy) still - but I feel something like excitement at the new energy I'm going to have.

Yesterday was my first day of dialysis. After many many years of dread and self-imposed ignorance, I have learned about this daily procedure and faced the future. I can do it...I know it is not going to be easy (four times a day for the next six weeks...) but I can do it. (even as I write this, I am so emotional because I really am so tired)

They pulled EIGHT pounds of fluid off of me yesterday. My kidneys had reached the very end. My BP was so high for the last week; I was sleeping only one sweaty hour at a time. The GI tract symptoms covered every realm of misery. The itch has left me scarred on the back and stomach. And the leg cramps are exhausting!

The leg cramps started at 8pm sharp and continued until my little kiddy bath at 8 am. Talk about sharp. Poor John was often woken with a scream, not kidding, when the REMs were extra deep and the cramp was extra strong. (I began to try very hard not to wake Latte man up. I'm such a drama queen, even when I chanted over and over: do not make a noise for John...I prayed that I wouldn't wake him...I still moaned or cried out when struck during sleep)

Anyhow, yesterday, the IV bag was about to burst after draining from my periteneal cavity for 10 minutes. John said that my face went from Pumpkin looking to back to sagging - and beautiful. We all laughed, but the nurse said, yes, your face doesn't look swollen! So I was happy. ....EIGHT POUNDS...

The wait for the transplant continues. John and I thought I'd go to Vandy over the Halloween weekend. My nephrologist says that the call will come only after this week of training and I get the supplies delivered: "You will take the whole week off for training, rearrange your entire house for the supplies and then you will get the call from Vandy!" Well, TWENTY-SIX boxes of supplies are going to be delivered on Thursday. Hmmm

I've had some very nice calls and emails over the last 48 hours. I am again humbled by the prayers and help from others. One friend wrote this morning at the end of her email: "I"d love to spend time with you if you want some company during any of your trips. Just email or call -- I'm around all week and weekend and the weeks after and on and on too."

That last part got me.

And so it is with my family of friends. And my parents. The hours and hours of listening, especially from those brave enough to be "trapped" on a walk with me, are the greatest gifts to me. The sheer stamina of my friends throughout this past summer - it is amazing to me. The people that continue to call me and send little notes - it kills me. Thank you. You really make my life.

So I'm off to the shower. Pictures posted later!

Ballooning in size...get this urea off of me

2008-10-29T08:58:00.002-07:00

Ah Oh

The biggest shoes I have don't really fit today. I've been preparing for larger clothes and all, but I had no idea my feet would swell to another size. I squashed myself into some old jeans and squeezed my insulin pump into the pocket. You should see me walking.

A note about John as a nurse: He's a dark horse and winning.

Ballooning in size...get this urea off me

2008-10-29T08:58:00.001-07:00

Ah Oh
The biggest shoes I have don't really fit today. I've been thinking about the clothes and all, but I had no idea my feet would swell to another size.

I squashed myself into some old jeans and squeezed my insulin pump into the pocket. You should see me walking.

A note about John as a nurse: He's a dark horse and winning.

Getting Older

2008-10-29T08:58:00.000-07:00

I told my friend, let's call him Rick, about my transplant and dialysis stuff. I love this guy; used to have a bible-study with him in my 20s, the kind of Bible study where sometimes the participants were half-drunk and always laughing quite a lot. We were so poor, there were challenges about how low we'd go for money at that time in our lives. So even though we didn't end up talking about the Bible (except for the first meeting), we at least discussed some great moral questions (was using a fake Krystal coupon a sin?)

So "Rick" says to me: "Now Kim, I know that this is nothing compared to what you are going through. Nothing! Getting old sucks. Yesterday I had my very first (and he paused, then lowered his voice) hemorrhoid surgery. I'm sitting here at the bank (and he whispered this with great emphasis) in a diaper!"

I'm sorry, but I just loved that he shared this. I laughed for two days. Especially when I think about what a snappy dresser he is and that bulky diaper.

Implant surgery, Titans, Halloween

2008-10-29T07:04:00.000-07:00

I'm off to the Y and the Vandy Lab, my second home, it seems. My face looks very unfamiliar, but an hour on the eliptical or whatever that knee-eater is will help. Too bad I still cannot take a shower or I'd def save time and get ready there.

The Titans game was just like I liked it. Tail-gate at the stadium, game time at home with friends. As a fair=weather fan, I am suddenly delighted with the Titan's record. Shawn, my brother ("The Commissioner" or "The Mayor" or "Rooster") assembled a grill the size of John's Prius. He and Tony got to the parking lot at 1:30 to secure great space. The grill had a muffler man on the front, completely welded by my brother, the muffler man. John pointed out later that it was anatomically correct. Above and to the right is Shawn and Vicki - my mom invited us to their party!

John and I showed up in time for a walk over the bridge at sunset - NASHVILLE IS GORGEOUS. There were blue lights everywhere and the Shelby Street bridge sparkled. We stayed long enough to stop by a few parties, eat some delicious food and brag about going home to watch with hot chocolate. There is nothing like picnic food eaten with gloves and a muffler over your face. But home with mom and dad and Bruce and the Pattersons was even better! Bill introduced us to Snyder's jalapeno pretzel sandwiches and PoP Secret Homestyle. I had a stomach later, but worth it.

Saturday night the the Mertz's had a Halloween party. I was on the couch from about 3pm on (after some work) and around 7pm I got up to wash my face and go to the party. I did NOT feel like going... But once in my closet, I realized that I hadn't worn my mother's dress from the 60s in years..or my feather hat. I jumped into it and I immediately felt good. Funny how that happens. As soon as I got my Bubba Teeth in, I knew that this kidney thing is just in my head - I felt great! John was convinced to dress as well and the whole production took 15 minutes. We had a great time: Elvis was there and the Dairy Queen and Burger King. Pac Man came and for some reason (maybe part of the Pac Man thing) there was a large solemn man at the door checking names off a list. He stayed there all night though there were only about 15 people present. A patio man thing? (David Brooks in the NYT) Guard at the door of fancy party? Leftover "excesses" of the early 200s?

Heard a some terrifying stories at the party. A certain realtor there said that he wasn't sleeping: in July he got in a bidding war on a short sale house. He outbid 5 others and now couldn't sell his other personal house. No money coming in. The bidding war had ended at $900. I had seen this house when it was on the market at $1.2. Ah, but for the grace of God, go I. John and I were so lucky to sell our house last July.

There was a "retired" doctor at the party with a free mammogram box on his head. The idea was too place your chest in the opening at his face. The women didn't seem to laugh unless they had liquor on the breath. In my buck teeth and countriest of accents, I was telling stories about which children were in which prison and that I was 36 with 14 grandchildren and that the 7 year old was home babysitting and that John was my fourth babydaddy, etc.

Mr Mammogram was saying that he was a surgeon and could give me implants and I said if my lawsuit worked out that I might come to him.....He then took off his box and told this awful story: It seems when he was bored, his friend the vet convinced him to give his castrated German Shephard silicone implanted testicles. He said "I knew I would never show him; but he was a show dog, and I wanted him to have every opportunity." He proceeded to set up a surgery center in his garage (gated community) and implanted the extra large balls. Everyone laughed but I was a little nauseated. Then he says that the dog developed a reaction to the silicone and he had to remove the balls. Perfect story for 2008.

Answer to "How Are You today?"

2008-10-28T14:11:00.000-07:00

To Mark:

I am doing good. My life is very very full, as my super positive friend says. I always am jealous when she says that, cause mine is full too, and I am so freaking comparative and competitive. (I think this is funny about me and useful, but also limiting!) Well, full is a good way to put it. I have reevaluated real estate and I still love it; I need a nap most every day; I am spending more time than ever with good friends. I especially love helping the nice people with real estate. Help & a positive attitude is what most people need right now and that mostly means pro-bono work. Everything is overpriced; I constantly marvel at Nashvillians who think their house is not affected by the economy. Everyone should lower their prices if they need to sell! I don’t push it…I just try to help. (At the Y: "Hey Kim, my house is ok isn't it, cuz its on Jackson Bvd?" -I've never even been in this nice man's house)

The kidney disease is challenging, but mostly, I feel good. Really.

I have one more week to wait on dialysis – I should’ve started 2 weeks ago, but I have to wait til they have trainers available. They are all booked up. My symptoms are a pain, but I can live. But tell that to my very loving (republican) neighbor who says that we have the best health care in the world. Last night we tried not to talk about it, but he couldn’t help but tell me how other people wait forever in other countries for medical care. And that America has the best care. I also had to wait 2 extra weeks for the surgery to put in the catheter! And now it is six weeks since the catheter implant – and I’m getting sicker in the meantime. My kidney function is at 6% today. And….the transplant center at Vandy got EIGHTY EIGHT applications for dual organ transplant (both kidney and pancreas) just before me, so it took from March until July just to get onto the list. The average wait for just a kidney is 4 years. ( I am trying the riskier dual organ transplant and luckily and high on the list for my blood type. It could be any day. For some heart-warming reason, the south has more organ donors than the north) So tell me about waiting.

But as for the American Health Care system: I don’t know what to think. I don’t want to study it because it is so much info….
Don’t even ask me about Stem Cell research.

My friends working in other countries in health care swear that other countries’ research is starting to outdo America. I need some stats on that.

Ok, enough of my ranting. GoBama

I’m trying to write a blog, but so far have kept it private. It is mostly just thinking & rambling and some of the older posts are more fearful and bitter than I now feel. In fact, I do love life more than ever…I am having a big time between napping, scratching, leg cramping and pooting. (nice)

Nashville is awesome and I only wish I could spend more time with all of the different people I love. I’d love for you and Tom to come over for election night. I have one or two friends that will be here and you’d like each other. Wonder if we could get Holly/Jan over….Anyway, Nashville has so much going on –Recently, I got to go to Robin Williams, a Predator’s game, David Sedaris, a lecture at Vandy and Halloween parties. I get tired, but there is time for a nap beforehand, and I love it.

Today I saw the dialysis doc and the OB/GYN. My blood pressure is very very high and everyone is concerned....but next week's dialysis should help. Latte man stopped by the center and asked that they start earlier. I think my stomach and groaning might've kept him up last night, but he'd never complain.

Tomorrow i go for more blood work at Vandy for the transplant center. I'd rather be selling....get it? I'd rather be sailing, selling? ok, never mind

Hope you are still singing and meditating and eating at Margo’s every Friday. If I get called to the hospital for transplant, I’ll put you on the email list. Tom might even come see me after a few days (since he is there at Vandy…ha!)

Forrest Gump and Obama

2008-10-25T11:30:00.001-07:00

2 weeks ago:

John was on the front row of the debate. Therefore he was on "the TV" about 1000 times. We got calls from Dallas (in the morning paper), NY - Terri Collins told us about the NYTimes, San Fran - he was apparently on "The View" and 100s of calls from Nashville.

Dearest pals came over and Kat stood next to the jumbo screen jumping up and down everytime she saw Latte man. She did finally sit down after an hour. Pete and Karen were just hilarious. We had so much fun! But John was there, trying to get a pic with McCain - but succeeding with Obama. On C-Span we could see him actually following Obama around and wrapping his arms around his shoulder for the picture. Of course, the secret service had strictly told them all not to step onto the stage and definitely not to ask for a picture. John Lott was the first and the rest followed.

He is just like Forrest Gump. Often, I am enjoying myself at the Ryman and John disappears. A few minutes later, you can count on a phone call from backstage. I am in the cheap seats. Same with VIP sections and good parking: Latte man always gets the best.

Waiting for a Transplant; Starting Dialysis

2008-10-25T10:43:00.000-07:00

I am the Bionic Woman.

But I itch. I itch especially on my back, where I cannot reach. I itch around my neck and my chest and the real claw marks are found around my catheter tape. The tape to secure the one foot catheter to my belly is getting old. I want to take it off, like you do a new bra at night or too-tight shoes. The shoes may look good, but you just want to take them off. The truth about how permanent the catheter is is setting in.....But it's not permanent if I get the transplant. Ah the wait. And the composure I need. One day at a time...right?

I've tried not to talk about the itch. Or the GI problems (poor John). Or the other symptoms. I've tried to meditate (it works), busy myself with anything else(it works) But the itch comes back. Now I'm trying to talk about it to beat it. The medications are helping with the GI problems, but the kidney doctor proffered nothing for the itch or the leg cramps. In fact, he says he has no idea why I have leg cramps - maybe dehydration. (On every website about kidney failure, leg cramps are listed as a sympton. The dialysis center staff said to eat salt.)

So I am Bionic - I am strong! I just had the most delightful walk with Laura (great therapy) and I will do the 5.8 with Amy tomorrow. But I am Bionic with an insulin IV coming out of one side of my stomach, and a dialysis catheter coming out of the other. ( I guess I should really be self-involved and take a picture....oh yuck.) The catheter goes all the way through my peritenal cavity and apparently is touching my....get ready for this one...rectum. It feels very very unusual and not in a good way.

My other symptoms include some balance issues (I can handle that so far!) and wanting to nap. I've missed a few dinner parties and great events due to the napping. I wanted to catalog my aches and pains here...for good reason. Though I do complain to John and a few friends, I know it is tiresome and unproductive. So I am pretending like I'm not sick. I want to look back at this, after this risky surgery, and know that I'm better off after the transplant.

Sometimes I think: Why am I risking this surgery - the kidney and the pancreas? These symptoms are not so bad. I can live with gas pain, gas smell, itching, other not so nice GI issues.... But as dialysis gets closer (one week to go) I know that my life is going to change even more. The bandage changes everyday and the saline soaking are nothing probably compared to Peritenal Dialysis four times a day (for the first six weeks - then 9 hours a night).

update on dialysis

2008-10-25T10:35:00.000-07:00

Here is the update I wrote to AG, Peter, India...last week

I’ve had the dialysis surgery 2 weeks ago and have to heal another 2 weeks before I can start. It looked like something I could do while sleeping (9hours every night) but I just found out that I will have to do it during the day for the first 6 weeks. Those will be tough weeks because they will take my entire day almost! (I’ll bet I don’t have to cook this thanksgiving! )

I’ve always loved playing dress up but the mask and gloves required are getting on my nerves.
I am also number 1 on the transplant list. Luckily, I feel great. They cannot believe it, my creatine is so high. They keep asking me if I am dizzy or nauseated….etc, etc. I still want to eat, etc. just a few symptoms that I can live with. (really fun things like itching and leg cramps) I really do think my measly little walk everyday is what helps. My good friends say that I don’t know how tired I am (I must look awful, the way they talk) I do take a nap everyday, and it is usually a necessity.

It is weird to go through the day with customers, etc and wonder when the call is going to come. At any moment, I may need to step out of my life for a month or six. Wild, but I think I’m ready.

food critic

2008-09-23T19:10:00.000-07:00

To my friend the food critic:

OMG
Did we eat a Mexican-Japanese meal or what? Sopapillas, "fish" tacos, tamales AND sushi? "Deconstructed" sushi, no less. Thanks so much from the bottom of my still full GI tract.

You know that eating with a reknown food critic was one of my life goals.

Don’t mean to be too gushy – but what a great Nashville night in "Little Dubai" and you are the funniest. My senses were dulled in the end with the deadly combination of time schedule and fried dough, yet I still had to laugh with you. I loved the freaking weather and time of day too….I”m too tired to go at 8:30 when John is ready! ha The sun started setting and the father daughter team started singing...and it was soooo pretty. It is true; the crappiest band in all of Nashville, TN is equal to the Best Barband in Dallas.

We made a commitment to try and write in our "blog journals."

So go write some private journal that you can publish later on. You should be a writer for a larger audience. It's not fair to deprive the people of Missouri of your humor and so on.

Thanks for thinking of me as the faux food reviewer for one night. The food was awesome. And you can use that in your column. ha

Coco

Humbling Friendships

2008-09-20T13:27:00.000-07:00

What an amazing group of people in my life.

Snickers, the beloved dog next door, is so readily shared with me by my favorite family the Trotmans. This is seriously the best way to own a dog...let it love next door.

Other friends today:

Lorrie took me walking today; afterwards we saw the bench she had made and placed for her father.

He passed away almost 1 year ago. The inscription says:

"He has achieved success who has lived well, laughed often and loved much; who has gained the respect of intelligent men and the love of little children; who has filled his niche and accomplished his task; who has left the world better than he found it, whether by an improved poppy, a perfect poem, or a rescued soul; who has never lacked appreciation of earth’s beauty or failed to express it; who has always looked for the best in others and given them the best he had; whose life was an inspiration; whose memory a benediction."
(Bessie Smith apparently wrote it; but it is often attributed to Emerson because it was published alongside his own essay in a newpaper.)

The bench is raw cut limestone; its dimensions are heavy and organic, chunky modern & strong. On the front in the most simple font that explains how the bench is given to the neighborhood beloved by their father from his children. What a pretty little spot with azaleas and a dogwood.

Lorrie is like him, I'm sure, though I didn't know him. If I could ever have touched someone the way her father touched so many, that is what I hope to accomplish. It is enough to hear Lorrie talk about him and it is an honor to hear her mention him. I love that Lorrie could show it to me. I'm humbled by her offer to help with my dailysis in the future.

Pete spent an hour today fixing my television; Phil came to entertain us at lunch and offered to help me with all the things I keep whining about! He also listened endlessly and with actual interest to my silly ramblings. Doug came to check on me. Mom and Dad called to check in - they my most solid support in life.

Susan & Drew spent hours feeding and entertaining me...and again, listening. What a wonder it is that I have such friends. I have to say it again: it is so humbling.

Pete talked to me about EMDR therapy and spoke in brilliant lay terms for me. He's amazing at describing the usefulness, the physical act of the treatment, the brain function, the way you use dual attraction to focus and many theories about why it worked. Just the explanation and examples of "dual attention" - by using eye movement or tapping - anything to left and right and back again, while focusing on the cause of the anxiety was so simple and brilliant. I encouraged him to write for the average interested person, like Oliver Sachs, but he laughed. Anyhow, it's not the same, I'm sure, but the dual attention reminds me of the intense focus of meditation and prayer in the woods....You are in the quietest setting, relaxed and able to think about being present and acceptance.

ahhh i am blessed

First Dialysis Training: one month ago.

2008-09-18T12:01:00.005-07:00

Just found out that my FOURTH blood work test came back worse. They rechecked 2x last week at the endo's and we were hoping that flushing liquids and basically drinking water like a freaking fish would lower the creatine. Oh well My parents rushed in from the 'burbs to go to prepretraining: We saw a predictable but informative film on the many choices for dialysis with a q and a following. I've got to give it a thumbs down, just for the depressing content. Though they managed to be upbeat and loaded me up w/some info.

My sweet mother asked some of the questions over again; it is all confusing. And she asked lots of questions about traveling....finally, I interupted and attacked my biggest supporter and said like a horrible spoiled child: "Let me just get this out on the table (to the nurse teacher): my mother doesn't want me to travel and it is the love of my life" She cringed, then I cringed myself. How can i be so mean to her!!!! I went on...defending myself, even though she wasn't even attacking me!

Later things were better though I felt like we were driving to a funeral on the way to the doctor's office and coming home w/my parents. Today I'm great because Felipe came to visit (pure humor) and Kitty came by (pure sympathy). I actually cannot believe that I am sick, except for the out of breath when hiking and biking!!! Lordy Need to talk to someone on PD (is it Pera.dailysis? there are 2 kinds) and/or Home Hemo....those are my choices...

Meanwhile, my brilliant and beautiful pro-cheerleader niece, who is also in an elite nursing school and working another job full time (i appreciate her efforts, my god)...is upset because they are only featuring her in a small photograph on some marketing material, and not a full page!!! If she only knew how well she is doing in life....she is amazing. Her brother is the super stealth smarty, he is not the showoff like me, he slides under the radar and is beloved. I stalked him on Facebook (like a crazy old aunt would) and he has 1million cute friends on there, mostly girls.

Real Estate in this market....

2008-09-18T12:01:00.004-07:00

Saturday night a few weeks ago:

Kendall told me that he was quitting real estate. After a 20 year successful career, he's had enough. In front of 10 gay men and Leslie, relaxed by the most beautiful $2.8 m spec house in the Nashville hills, he regaled a summary list of being exploited as a realtor...

He didn't want to be treated like that anymore! With minimal words (I admire that) he summed it all up: it is not worth it...."If you care about your clients at all, then your life is miserable if you also need to support yourself....fine if you have someone else supporting you, but life for a successful realtor is horrible."

He meant that it is more rigorous, less rewarding, and looked down upon more than any other profession. Listen, I know: I come from a long line of car dealers....Realtors are treated like urchin children by many...in some crazy self-flagaration way I must like it.

I love my friend Felipe's comment: "quit complaining, Coco. You've made more money at this than anything else you could do!" He's right; I was "downsized" from so many careers! I mean, we went to real estate school for 3 weeks. (there were however, over 400 hours of continuing ed.)

Mr Wonderful, in a rare frustrated moment said, "you are expected to be an expert on everything." Here are some of my areas of "expertise" in real estate:

All aspects of construction, framing, roofing, drainage, codes administration...* i mean I have had to go referee w/an inspector vs an engineer over Joist Spans. and then I have to explain the calculus to the client...I barely passed calculus
Liability and lawsuits
Marketing & how to get buyers to buy
How to bribe other realtors into seeing your listing
FSBOs - also called "realtor-haters" - how to work successfully w/them
Human nature and subtle implications
Writing protective contracts
There is a whole category for dealing with big egos: country music artists, lawyers & doctors, not nec in that order
managment of staff
latest decorating trends
database managment
contracting repairs in a very very short time period
working on worse deadlines than a daily newspaper (I've been there)
emotional counseling, including, but not limited to: fighting spouses, crying first time buyers,
anger over equity loss, and manic spending (over spending)
babysitting
entertaining including but not limited to knowing who is playing at the Bluebird and what they are famous for
foreclosures: both taking advantage of a good deal for my buyer, and helping a seller with future credit and stop loss
rental markets

Amy Says to me about a friend; this friend Annie had a liver transplant and quit being a lawyer: "Annie B. is just a cool chick. I always meant to send her a note when all that happened but was too caught up in myself... It was awesome to hear someone much smarter and better in Court to say, 'I just couldn’t do it anymore'. Egotistically, it’s always hard for me to admit that. I told her I came to terms with it when cousin Cathy said,

'Who do you think is going to change your diapers, the law firm, or Catherine?'"

Apparently, the woman is thriving as a teacher at the boy's school here and is very healthy and happy....

The reason I mention all of this is because I got the news that I definitely have to go on Dialysis Soon. Looking at all of the options. I feel pressure to decide which way I want to go before I meet with the surgeon. Very upset over the weekend and felt bad. Didn't know which caused which. Was unable to complete anything on Sunday. Computer crashed. My computer guy says i may have lost everything (contracts, photos and most importantly database of 20 years...) i have some backups somewhere, but the very expensive backups system does not seem to be working yet....they are still checking it out...yet really noone is here.
Have lots of work to do for the clients that are grateful. Unfortunately have decided to do more free work for the clinets that not so grateful. I really think that I work just as hard for either type of client.

The "Horse People" decided to go FSBO. This is after the 3 hour consulting I did with them to get the house ready and to price the listing. Another reminder from God to focus on work-life balance.

Neprhologist office day

2008-09-18T12:01:00.003-07:00

Last thursday I went in with the expectation of having blood drawn (for me and for UNOS transplant list). I also had asked Kim - Dr's R's nurse, to help me get home hemo education for home dialysis. Dr. R told me that she would do that 2 weeks ago. When I followed up, she seemed to understand and promised me she would get the 3 other things done. (this was 8 days before my visit)

The shot nurse was surly; she stomped out of the room when I told her (I didn't ask) that I would be pricking my own finger (my needle is sharper than theirs). She was surly when I asked her about the things Kim had promised a week before. She was surly when I told her I didn't think I would take the shot. because my hematacrit (sp?) was 11.6, I didn't feel any low oxygen or red blood cell symptons. I had discussed this w/the dr earlier in the year. She gave me the shot.

By the time she retrieved Kim at my request ("sorry, she's with a patient, you can call later." "i can wait, " i said) I was crying. How can I make a decision about which dialysis w/out the promised "education" and w/out the bloodwork?

I asked her to have Dr. R call me. She made some excuses and told me that I was just upset because I had to go on dialysis....I was, but I was also upset because she hadn't done 3 of the 4 things that I had asked for....twice.

Here is the kicker: Kim handed me a letter from the Procrit (EPO) people and said, "you've had the shot, right? Well, you are supposed to read this, but you'd better not read it today because you are so upset." Frustrated, I said, "Is this the warning about heart attack and sudden death that was all over the paper 6 months ago? That is why I had a meeting w/Dr. R about lowering my own criteria for this shot..."

Sure enough, the letter was dreadful with proven dire consequences for users of ProCrit.

It is enought to make you think: class action. uuuuugh. I need to read a little more Anne Lamott later today...

here is a quote from Ms Lamott, one of my favorites: "Laughter is carbonated holiness. It is chemo. So do whatever it takes to keep your sense of humor. Rent Christopher Guest movies, read books by Roz Chast and Maira Kalman....Reread everything Molly Ivins and Jim Hightower ever wrote. Write down that great line of Molly's, that "freedom fighters don't always win, but they're always right." Tape it next to your phone. Call the loneliest person you know. Go flirt with the oldest person at the bookstore. Fill up a box with really cool clothes that you haven't worn in a year, and take it to a thrift shop. Take gray water outside and water whatever is growing on your deck. This is not a bad metaphor to live by. I think it is why we are here. Drink more fluids. And take very gentle care of yourself and the people you most love."

She was talking about the state of affairs for the country and the election, but as usual, her words seem to apply to me today.

Many thanks to Kat for the beautiful Lamott essay, which led to another one and another...

Pushing through the systems: transplant & dialysis

2008-09-18T12:01:00.002-07:00

OK OK

i heard from Vanderbilt. Note to self: make food to carry to the nurses over there. I've started off with a bonding experience...my nurse coordinator goes to Percy Warner like me!!! They want me to see 2 doctors and get more tests. here is a list of what I am waiting to be scheduled:

See Surgeon for Dialysis catheter implant surgery

Dialysis center pre pre training on Hemo at Home (so I can make ed decision)
renew the stress test
Dual transplant surgeon - never had a meeting, so that is my next meeting.
"Red top" vial of blood w/in a few more days...must get a deadline
Kidney doctor again for EPO test and shot
guess I've had about 25 doctor's meetings and clinic visits in the last 2 months...over 20 vials of blood and about 30 total tests...not so bad. i can do this!

what i've learned. yesterday, when i felt bad and sorry for myself, Amy listened patiently to my list above and said, "all education is good" and I didn't listen to her. I was still hurt and brooding and frustrated! But today I am strong and happy and I know I have to get these meetings scheduled just for the education. I must remember to listen when I feel poorly and if it doesn't sound good to me, which it didn't yesterday! I must remember these words from friends for later encouragement. I have faith that I will feel better and I can handle difficult ideas later.
What else I've learned: a dose of good comedy and better yet, a dear friend stopping by, is the best medicine. Pete came over with Sag Paneer and Arrested Development. Manna from heaven.

Other best gifts: Kim called, Amy,Erica & Kitty, 2 long lost friend....all called today. Wonders, they all are

Rilke poem

2008-09-18T12:01:00.000-07:00

LET EVERYTHING HAPPEN
by Rainer Maria Rilke (1875-1926)

God speaks to each of us as he makes us,then walks with us silently out of the night.

These are the words we dimly hear:

You, sent out beyond your recall,go to the limits of your longing.Embody me.

Flare up like flameand make big shadows I can move in.

Let everything happen to you: beauty and terror.

Just keep going. No feeling is final.Don't let yourself lose me.

Nearby is the country they call life.You will know it by its seriousness.Give me your hand.

(from Rilke's Book of Hours: Love Poems to God,translated by Anita Barrows and Joanna Macy)

Dialysis: More Education Today

2008-09-16T14:33:00.000-07:00

Just got back from a Davita education - it was so much better than the last co that we went to. Felipe went with mom dad and me. John is out of town, but this was such a good meeting. I got a bit sad that he wasn't there, because he sees things very simply and w/out emotion.

Mom, Dad & Felipe were great: every question that they asked was something I would've never thought of. I was floored by the passion of the nurse Toni. She kept saying how much she loved education; how much she loved her job. Her supporting staff were great too; they handed props around and brought in other patients just flat off the floor for me to quiz.

UNFORTUNATELY, noone pushed me toward one kind of dialysis over another. I'm a little more confused about which type to go with: PD or home hemo. Big differences and big pros and cons for each. I"m leaning toward the PD, since I can direct my own schedule. It is crazy that such a small thing can throw me over, cause i can control the schedule somewhat on home hemo...I just have to have a "care partner" here with me during the 2 hours..... PD is NINE hours though....boy.

PD has 4 in or 8in catheter coming out of belly; Home hemo has big lumpy button accesses in the arm. PD has big gallon bags of glucose and dialysate to pump into stomach everyday, thus screwing up the blood sugar and forced weight gain. (everyone says, think 5 months pregnant) I don't want to be vain about this, but my mom is right to help me think about the restrictive feelings during exercise with a really big stomach.

Hemo deals with blood; apparently there are lots of blood supplies to throw away, bloody messes occasionally etc. Home hemo machine is 70 lbs, plus has a big machine under it about the size of a wine fridge.

Both can travel, but not that easily....

PD: everyday, 9 hrs per day (while sleeping, ideally). good for work life.
Home hemo: 2 hrs -3 hrs, 6 days /week (but a trained person has to be there)

PD: training is 5 days
Home hemo: required minimum 15 days. my nephrologist says that you practically have to become a dailysis nurse to operate.

someone help me decide!