Skip to main content

CHRONIC TONIC posts on Thursdays at 9 p.m. EST, it is a place to share stories, advice, and information and to connect with others with chronic health conditions and those who care for them. Our diarists will report on research, alternative treatments, clinical trials, and health insurance issues through personal stories. You are invited to share in comments (and note if you'd like to be a future diarist).

Tonight's diary by: Kitsap River

On February 18, 2011, I received a kidney transplant from a cadaver donor at the University of Washington Medical Center. I had been registered on the UNOS (United Network for Organ Sharing) transplant list for over three years and had survived those three years on dialysis, most of that home dialysis of one form or another (there are several dialysis modalities, most of them involving home dialysis). But I haven't dialyzed since I woke up after very little sleep the morning of February 17 after dialyzing overnight. I'd gotten called to come in for a possible kidney transplant at about 11:15 pm on the 16th; who could sleep after that? Not me, that's for certain.

While I was in the hospital on the 17th, I, and later my partner and caregiver Charles, liveblogged much of the wait and then Charles' wait for me to come back from what turned out to be a successful surgery; the link above will take you there if you're interested.

Since I got back to my hospital room on February 18, I've been getting acquainted with my new kidney, named Bimaaji by Aji; it means "giver of life", and that it is. There's a lot to get used to.

For one thing, there's the location where the transplant surgeon installed the new kidney: it's not where my original ones are, which are still both there. It's in front, close to my groin area, and I have an incision at least 6 inches long to show me where. In performing the transplant, the surgeon cut my abdominal muscles, so where I used to have good ab muscles (not good-looking ones, which is a different issue) I no longer do and need help getting up from a lying down position unless I can roll over onto my side. That's probably going to take a year or more to heal. I now have not one kidney, but three; the original two may not be truly functional when it comes to toxin clearing, but there was no good reason to take them out, so that wasn't done. Only in conditions like polycystic kidney disease will they take the original ones out during transplant surgery, and if the PKD is bad enough they will take them out long before the person receives a transplant unless they have a living donor.

I had had a number of offers from people to be tested to see if they could be my living donor; many of them, including my sister S., got disqualified for one reason or another. Most of the volunteers were Kossacks who had read one of my diaries or seen my signature in comments. One of them was in more advanced testing and was dreading talking with her family about this. She was a match, but the cadaver kidney turned out to be an equally good match, with both coming in at 1 out of 6 HLA antigen factors matching mine. The donor was someone a little older than my 51 years, a local who died of massive head trauma at a hospital not all that far away from where the transplant took place and whose family decided to have him live on in others. I think about him and his family every day.

Another thing that takes a lot of getting used to is how often I have to pee now. I got used over three years to peeing not all that much a couple of times a day; it amounted to about 3 cups a day, which is important to dialysis patients because they can add the volume they pee per day to the volume of liquid they're allowed to consume in a day. That fluid has to include everything you need to take your medications, and to drink with meals, and includes things like Jello and ice cream. Well, now I'm trying to get used to needing to pee about once an hour and that does take some getting used to, especially for a dialysis patient who only rarely desperately had to go. Now it seems like it's all the time and I'd better be aware of where all the restrooms are wherever I am. It's true, I do drink a lot of coffee and always have, but that doesn't explain the sheer urgency of need I experience. We had thought that perhaps the transplant team squished my bladder when they put the kidney in, but the physician I saw today at my clinic appointment says no.

Then there's having to keep to a strict schedule for medication. Rather than timing it based on when I eat meals as I had been accustomed to doing as a Type 2 diabetic, or when I had to dialyze in the case of my blood pressure medication, there's a boatload of medication I have to take every twelve hours - or else. If I get too far off schedule, if the level of anti-rejection medications in my system gets too low, I risk a rejection episode, and if I can help it I am not going there. So another thing I've had to get used to is filling my very large mediset, provided by the transplant program, on a weekly basis and carrying it with me everywhere. It may not be convenient to do so, but I have to have it so I can take my medication on time. And wow, is there a lot of medication to take. I'm on most of what I was on before the transplant, with only a couple of exceptions, but getting a transplant added almost half as much again to the number of medications I have to take on a daily basis.

I am still amazed at not having to dialyze nearly every day. The dialysis machine was retrieved via courier by the company that makes it, and next Monday the rest of my dialysis supplies that are stored downstairs and the rest of the equipment lent to me by the home hemodialysis program will be taken back. Some things stay here, things we bought ourselves (like the bathroom scale and my blood pressure monitor) but most things go back, including all of the dialysate. For the first time in over three years, I'll be able to get to my LPs again.

I will never be able to wear a two-piece swimsuit again, as there are too many scars, small and large, on my abdomen, the largest of them the transplant surgery scar. One of the small roundish ones is where the PD catheter was removed; the other two were from bulb drains that were purposefully left in me after surgery, and it took me being out of the hospital for five weeks for them to remove the last of those. It was to drain something called a lymphocele, a source of lymph fluid that just kept coming and coming. Finally it settled down to a miniscule trickle, and at last they took the drain out. For five weeks I had to get used to having that bulb in a carrier outside my clothing, and to either having my clothes get soaked with lymph that came out from around the drain tube or wearing stick-on ostomy bags over the tube to keep my clothes dry. And with that, we ran smack into my allergy to all adhesives. I had to insist that the program's nurse, who was changing the ostomy bag for me at my clinic appointments because the adhesive would degrade and the bag would smell awful, apply Cavilon no-sting barrier film to any place that adhesive would be applied before any adhesive went onto me. If there's no barrier film used, I will definitely get a weeping sore rash.

It's been really difficult getting used to having out of control diabetes because of all the steroids I'm on, especially after a track record of perfect control for years. Prednisone, in particular, is well known to exacerbate existing diabetes and to outright cause it in people who don't already have diabetes. I've been having to supplement my oral medications with insulin, and even that wasn't doing the trick as long as I was on a very high dose of Prednisone. Luckily, the week before last the transplant team's pharmacy guy talked with me about my diabetes, my creatinine now being lower, and the possibility of restarting a diabetes drug called Metformin. I had been on it until my nephrologist took me off four years ago, so now, after talking with my physician, I am back on it and it is working pretty well. I still have readings higher than I would like, but my Prednisone is coming down little by little and so are my blood glucose readings along with it.

And because I've had major surgery, I have had to get used to other restrictions, strict ones, some of those now relaxed or lifted and some still in place. I am now allowed to lift a little more than ten pounds but not by much. I wasn't permitted to drive for a month after I got out of the hospital. And I won't be allowed to garden at all until long after the growing season has ended; Charles is going to have to do it all, though I will be allowed to do some watering. No weeding, though. The transplant program is concerned about life-threatening fungal infections, which would land me in the hospital quickly and probably cost me the transplant.

Other things I have to get used to: my balance is even more shot now than it has been for years and that doesn't seem to be going away any time soon. It may never; I don't know. I still have all the other disabilities I have had for years and always will. All I got was a kidney and a new lease on life, not a replacement neck or a cure for chronic pain or for arthritis or some way to keep my hands functional. Those are still with me. I was used to them before I started dialysis and I have to get re-used to them again. There's a myth among kidney patients that getting a transplant is a cure-all for everything. It is not. I have to get used to the fact that while I am getting a little more energy back, I still tire very easily, I still have low energy, and it may be that way forever. I don't expect to ever get back the energy I had when I was 25 but it might be nice to get back what I had before I started experiencing chronic pain at 44. I am not holding my breath.

But the big thing that profoundly affects my overall quality of life is that I do have a kidney that works, and it's making a huge and very positive difference. My skin color is back to close to what it had been before I got diagnosed with kidney disease. It's still sallower than it was years ago, but, as Charles puts it, I no longer look like a refugee from The Simpsons. Little by little, I'm getting at least a bit of energy back. Later this year I will actually be able to swim and kayak for the first time in over three years. There's a lot to get used to with a kidney transplant, but with all of it, good and bad, I would do it again.

Please note in comments your interest in being a diarist. (We will happily format your diary for you, including links and pix!)

  April   14: Diarist needed
  April   21: DrPlacebo
  April   28: Diarist needed
  May     5: Diarist needed


EMAIL TO A FRIEND X
Your Email has been sent.
You must add at least one tag to this diary before publishing it.

Add keywords that describe this diary. Separate multiple keywords with commas.
Tagging tips - Search For Tags - Browse For Tags

?

More Tagging tips:

A tag is a way to search for this diary. If someone is searching for "Barack Obama," is this a diary they'd be trying to find?

Use a person's full name, without any title. Senator Obama may become President Obama, and Michelle Obama might run for office.

If your diary covers an election or elected official, use election tags, which are generally the state abbreviation followed by the office. CA-01 is the first district House seat. CA-Sen covers both senate races. NY-GOV covers the New York governor's race.

Tags do not compound: that is, "education reform" is a completely different tag from "education". A tag like "reform" alone is probably not meaningful.

Consider if one or more of these tags fits your diary: Civil Rights, Community, Congress, Culture, Economy, Education, Elections, Energy, Environment, Health Care, International, Labor, Law, Media, Meta, National Security, Science, Transportation, or White House. If your diary is specific to a state, consider adding the state (California, Texas, etc). Keep in mind, though, that there are many wonderful and important diaries that don't fit in any of these tags. Don't worry if yours doesn't.

You can add a private note to this diary when hotlisting it:
Are you sure you want to remove this diary from your hotlist?
Are you sure you want to remove your recommendation? You can only recommend a diary once, so you will not be able to re-recommend it afterwards.
Rescue this diary, and add a note:
Are you sure you want to remove this diary from Rescue?
Choose where to republish this diary. The diary will be added to the queue for that group. Publish it from the queue to make it appear.

You must be a member of a group to use this feature.

Add a quick update to your diary without changing the diary itself:
Are you sure you want to remove this diary?
(The diary will be removed from the site and returned to your drafts for further editing.)
(The diary will be removed.)
Are you sure you want to save these changes to the published diary?

Comment Preferences

Subscribe or Donate to support Daily Kos.

Click here for the mobile view of the site