A word about Keeping your illness private

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

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

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

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.]"