Bad News on CT scan

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

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

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"

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

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

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

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

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...

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

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

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....

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

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"

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

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.