KosAbility is a community diary series posted at 5 PM ET every Sunday and Wednesday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic. There are two parts to each diary. First, a volunteer diarist will offer their specific knowledge and insight about a topic they know intimately. Then, readers are invited to comment on what they've read and/or ask general questions about disabilities, share something they've learned, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be spayed or neutered.
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 I had to pee for the first few months. 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, after I got the transplant, I had 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. It seemed like it's all the time and I had to be aware of where all the restrooms were wherever I was. It's true, I do drink a lot of coffee and always have, but that doesn't explain the sheer urgency of need I experienced. We had thought that perhaps the transplant team squished my bladder when they put the kidney in, but when I asked my nephrologist at my clinic appointment, she said no.
Now almost six months have passed - it'll be six months on Thursday - and I am down to peeing about once every hour and a half to two hours. It's still pretty often, as far as I'm concerned, and a friend of mine who got a transplant a year and a half ago says that it is like that for about the first year. Then you start peeing on more of a normal person's schedule.
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.
There are also a lot of medication changes to keep track of, mostly changes to my transplant medication. At three months, I stopped one medication entirely; at six months or shortly thereafter, I stop another one (the anti-leprosy one). My transplant coordinator just called me a few minutes ago (this was updated Friday) with a change to my tacrolimus, which is an anti-rejection medication; I'm supposed to change the amount I take only in the morning and keep the evening the same. Luckily, these changes will only come once every couple of weeks now, instead of twice a week like they were at first.
The medication changes are made easier in that I only need to remember them once a week, and they're set into my notoriously bad memory by having to pull just the right amount of that medication fourteen times at once. I have a mediset that was given to me in the hospital when I was recovering from transplant surgery; it is 12.5" long by 7.5" high by 1.5" deep and holds an entire week's worth of medication, four dosing times per day. It's big, and I have to take it with me everywhere unless all I'm doing is running a quick errand. It's big enough and important enough that it gets its own transport messenger bag, which ironically has the "NxStage Users" group logo embroidered on the front. (Not that I didn't earn this - the NxStage is the home hemodialysis machine I was on and I am still a card-carrying dues-paid member of the group, and proud of it.)
Some of the anti-rejection medications that are helping me keep this kidney are also harmful to the kidney, and there aren't any better alternatives. Some of what I take - perhaps all of the anti-rejection medications I take - also make me a great deal more prone to getting cancer. Having a depressed immune system evidently makes one much more cancer-prone; it's almost as if you can "catch" cancer. I have to wear ultra-strong sunscreen - factor 70 is what I need and keep around the house - any time I am going to be out in the sun. Any part of my body that might be exposed to the sun has to be coated with that before a single ray comes into contact with my skin. Statistically, if I remember correctly, more transplant patients die of cancer than of any other factor. Of course, more dialysis patients die of cardiovascular issues than anything else, too, and at least I am away from that particular threat.
I also have something called BK Virus, which a lot of transplant patients wind up with; it's common, and undetectable, in just about everyone, but in transplant patients it can take off and become detectable. If you have ever had a bladder infection, you probably have it, and it won't cause you problems if you do. We transplant patients either had it to begin with in our own bodies, got it from the transplanted organ, or both. So far, the transplant program's just keeping an eye on this in case it starts replicating out of hand. It is replicating, that's certain, and may or may not cause problems later. One of the medications I am on causes BK Virus to become more problematic, but there are worse problems with other medications. There isn't a single anti-rejection medication that I take or could take that doesn't have its problems.
I am still amazed at not having to dialyze nearly every day, and not a week of the past six months has gone by when I don't think about it in wonderment and great relief. The dialysis machine was retrieved via courier by the company that makes it, and later, the rest of my dialysis supplies that were stored downstairs and the rest of the equipment lent to me by the home hemodialysis program were taken back. Some things stayed here, things we bought ourselves (like the bathroom scale and my blood pressure monitor) but most things went back, including all of the dialysate. (I do still have a bag of saline, unopened, upstairs. Why, I don't know.) For the first time in over three years, I can get to my LPs again, when I hadn't even been able to see them behind the dialysis supplies.
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 was 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. While my numbers finally calmed down at least most of the way, I still have 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 transplant team's pharmacy guy talked with me about my diabetes, the fact that my creatinine was lower at that time, 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 I'm managing with medication and careful diet, much more careful than I had had to be prior to the transplant. At 7.5 mg, I'm almost down to my long-term maintenance dose of Prednisone, which I'll be on as long as this transplant keeps working. I'm having trouble dealing with one of Prednisone's major side effects, which is an increase in abdominal fat; no matter how little I eat, I still have an increasing abdomen, which really sucks.
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 just about anything within my capability but that's still not a whole lot. 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. Charles even has to be the one this year to harvest the blackberries off the blackberry bushes, since they have thorns and could easily put fungi right into my skin. Again, that would likely land me in the hospital, and my transplant nephrologist has told me in no uncertain terms that I cannot harvest anything from any thorny bushes this year, and must wear a mask for harvesting anything else due to the potential for fungi to be kicked up into the air and inhaled. There are berries I'm allowed to harvest, like huckleberries and salal, but not only do I need a mask, I need a pair of nitrile gloves for the salal because of all the sticky residue it puts onto my fingers.
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. After five months with the transplant, I don't seem to have regained any ground in this respect, so I am not holding my breath.
And my kidney has not been the most stable of kidneys. At least we know for a fact that it isn't rejecting, and the transplant team will be right on top of any anti-rejection episodes. They have me going in once to twice a month and getting labs drawn every week so they can keep on top of things like my tacrolimus (anti-rejection medication) level, creatinine (a measure of toxins built up in the bloodstream), calcium and magnesium levels, and many other things. Labs are complicated and expensive; I saw my lab EOB for mid-July and it was close to $1700. Fortunately, I don't have to pay that out of pocket; because I'm still covered by Medicare, they take care of most of that and Charles' employer group insurance covers the rest. But my creatinine is, for reasons unknown to anyone, up and down, up and down, up and down over and over again, and when it's up, I really feel it. I get more tired, have less energy, wear out a lot more easily, have less emotional strength, etc. than I do when it is down, and a mere tenth of a point is a large enough difference to make a huge difference in my well-being. I have been biopsied, ultrasounded, renagrammed, lab-tested, poked and prodded, etc. and nobody on the transplant team has any idea what is going on.
One thing I am pretty sure will start eventually in the new kidney is stone formation. I form combination stones, and they're always too large to pass. I have never passed a kidney stone in my life. The ones removed from my left kidney in 2000 were an inch and a half long, and an inch long, and they were analyzed. I was told then by my urologist, "usually we tell people what not to eat after analyzing their stones to see why they form them, but in your case, there'd be nothing left that you could eat." Seven months after those stones were removed, there were new stones growing in both my native kidneys, and I suspect it is only a matter of time before this one gets stones in it as well. This will probably shorten the life of the graft. It's just a fact of my life, and one I cannot do anything about, so I have learned to live with it. I have to. My most recent ultrasound didn't show any stone formation in the new kidney, so I'm crossing my fingers and hoping the stones only form in my natural kidneys.
Transplant patients are not the only ones who regard getting a kidney as a cure-all; everybody I know seems to do so, too, at least around here. Every time I turn around someone is saying how much better my color is and therefore betting that I have more energy. My color may be better, mostly because I don't look like, to quote my partner, "a refugee from a Simpson's episode", but it's NOT back to what it was before my kidneys started failing. I used to have a rose-and-cream complexion and I am still more yellow than my partner, who has a much more sallow cast to his skin tone and always has. He hasn't changed, but I haven't changed back, not all the way. And because I don't look like I'm dying in front of everyone's eyes, everyone from physicians to, frankly, myself expects me to be able to do everything. I keep castigating myself for everything I can't do, thinking that somehow I ought to be able to. I don't seem to be able to reconcile in my own mind the fact that I have a transplant with the fact that I'm still disabled (which got proved to me the first evening we were in Minneapolis for NN11, before we rented the scooter, and in a big way).
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. I am actually allowed 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.
KosAbility is looking for diarists! We particularly need writers for the open September slots. If you kinda sorta think you might like to write a diary, ulookarmless and I are easy to find and easy to work with, even if you've never posted a diary before. Here's what the upcoming dates look like:
Sunday Diaries
Aug 21 ramara
Aug 28 don mikulecky
Sept 4
Sept 11 KelleyRN2
Sept 18 theKgirls
Sept 25 Julie Waters
Oct 2
Oct 9
Oct 16
Oct 23
Wednesday Diaries
Aug 17 ulookarmless, plf515: Disability Humor
Aug 24 boatsie
Aug 31 pistolpeteMA
Sept 7
Sept 14
Sept 21
Sept 28 ulookarmless
Oct 5
Oct 12
Oct 19
Oct 26
A special note about the 9/11 diary: When I realized September 11 falls on a Sunday, I reserved that spot. I am looking for one or more disabled first responders to either write the 9/11 diary or, if they don't belong to the site, to allow me to interview them.
Nurse Kelley