Hi everyone. It’s been a while since I last visited Home Dialysis Central forums. I never left the forum as such or had any specific intention of “leaving”, but time flies when you are doing other things and dialysis isn’t a daily presence in your life anymore. As you may remember, I finally got a kidney last year (Aug. 2006) after 4 years on hemodialysis (2-1/2 on conventional hemo at the centre, and 1-1/2 on daily nocturnal hemo at home (with some short daily mixed in now and then).
The transplant has gone well so far. As they say, it’s a treatment not a cure, and it’s not without its own problems. The kidney itself (from a deceased donor) is working great. No problems at all as far as that goes, no need for EPO, no need for BP meds, no need for anything special in terms of diet, etc. No rejection episodes of any kind. I had extremely severe diarrhea problems, apparently caused by Cellcept, during the first 3-4 months, but that eventually subsided on its own. An ongoing problem all year has been a low white blood cell count (neutrophils especially). This too has apparently been caused by Cellcept. My dose was stopped a few times, and dosage was lowered and then re-instated several times. Right now, wbc count seems to be stable on a slightly lower than common maintenance dose of Cellcept. But, it has been unpredictable before, and so, you just never know. I was hospitalized for it a few weeks ago, but only for 3 days.
Well, that’s it for the update, and now for the subject of my post today…
Almost every day someone says to me, “You must feel so much better now”. It’s a question I can never really answer properly without going into a lot of detail that few people are interested in hearing. Truthfully, I have to say that with the transplant, I don’t feel that much better than I did when I was on daily nocturnal hemo. It’s a giant step better than 3 times per week hemo at a dialysis centre, but I’ve found that it’s not that much better than daily nocturnal. Now, I’m talking only by overall health, not about all the extra free time. We all know that home hemo takes up a lot of time in several ways. It’ good dialysis, great dialysis even, but it is time consuming, and it does require a lot of motivation and responsibility.
I was one of those people who was severely affected by low kidney function. My previous athlete-level fitness gradually descended into the worse possible exercise intolerance. I was plagued with extreme fatigue and shortness of breath at the slightest exertion (having chronic asthma and exercise-induced asthma didn’t help). Conventional in-centre hemo didn’t really help much with that. I was able to walk my dog a few blocks at best, on a good smog-free day (not too many of those in the typical little backwater Ottawa summer anymore) – but that was about it. My nice racing bicycle, acquired a few years before I started dialysis, mostly just sat unused. I rode it on good days for maybe 15-20 minutes at a very mild pace. I walked a bit, as I said, but I started being plagued by pain in my feet.
Once I started on daily nocturnal, things started to improve, and, I feel that daily hemo kept me healthier until I finally got the call for a transplant. I started being able to walk and ride my bike farther and farther. It wasn’t dramatic at first, but it was definitely noticeable. But as time went by, this improved more and more. I just had more strength and more endurance.
Now, I don’t know to what extent it would have continued to improve over time if I had not gotten the transplant when I did, but at the very least, I credit daily nocturnal hemo with giving me a headstart that I was able to continue and improve on after the transplant. Over the past spring and summer, I managed to build myself up until by mid-summer, I was easily able to ride my bike for an hour or more each and every day. I sometimes went longer, and I rode as far as 30 km a few times. This would have been totally unthinkable before. On days when I didn’t ride, I walked, for more than an hour at a time (the transplant clinic here likes to see its patients exercise an hour a day if possible). And I don’t mean leisurely walks and bike rides either. I’ve been able to do justice to my racing bike by riding it as a pretty good clip, something that I was never able to do even before I started dialysis. It was for me, the most insanely great summer I’ve had in a decade or more. My level of exercise may not seem like that much to some, but it’s not too shabby for a 54 year old after 4 years of hemodialysis, not to mention 25 years of chronic renal insufficiency before that, 20 years of high blood pressure, and asthma on top of it. To me, it’s almost unbelievable.
As far as general health goes, as I said, I don’t find there’s a tremendous difference between daily nocturnal hemo and a kidney transplant, at least not for me. I wouldn’t give up the transplant, of course, but daily nocturnal was pretty good. If anything, I’ve required way more medical attention since the transplant. On a daily basis, while not actually connected to the machine, I assure you that I felt as good then as I do now with the transplant. This leads me to say that at least for me, there’s no doubt whatsoever in my mind that daily nocturnal hemodialysis is a good substitute for a kidney transplant if you have to be on dialysis (as long as you don’t mind sleeping hooked up to a dialysis machine 5-6 nights per week, and managing your supplies, etc.).
One thing I never expected though, was to have 2 different cancer scares so soon after the transplant. I mean, they warn you plenty about the risks when you are being evaluated as a potential transplant recipient, but you don’t really expect it except maybe in some distant future. I developed some strange-looking skin lesions which the nephrologists thought might be skin cancer, but a referral to the dermatologist determined it is a kind of psoriasis (never had it before though). The second time is still ongoing: suspected prostate cancer. So far, I’ve seen 2 urologists. First one I was sent to by my family doctor after a positive PSA test, and the second one I was sent to by the first urologist after a second even more positive PSA test. Because I’m a transplant patient, I had to be referred back to the hospital’s urology department, and in fact, the very same urologist who performed my kidney tranplant. At this point, I’m awaiting the actual biopsy.
I also wanted to mention something about my old lifeline, the fistula. Yes, I still have it, and it’s still exactly the same as it was on my last night of dialysis. Only difference is that there are now 3 little dot-like bumps where my buttonholes were. They remove the fistula if it’s causing problems, but so far so good. I was sent to see the vascular surgeon about it last July, and both he and the highly-experienced vascular nurse (she is really THE fistula expert here) suggested that it might be a good idea to keep it as long as it’s working. I think I fully agree, because I still think of it as my security blanket. Not that anyone expects this to happen, but all of us with a transplant know that a return to dialysis is always a possibility, and it’s unpredictable. Should that happen, with my fistula the way it is now, I just go back on it and carry on as before (although it might not be on home hemo, at least not for a while since there’s a waiting list). It would be a lot worse if I had to go back on dialysis via a catheter (I’ve never had one, by the way, but I’ve been around plenty of other hemo patients who were forced to use one).
If you are still waiting, patience, you just never know when the phone will ring and it will be a nurse from the hospital telling you they have a kidney for you. I never fail to highly recommend daily nocturnal hemo at every opportunity. As far as dialysis goes, it’s unbeatable, and I don’t care that there are no controlled trials to prove it. The improvements for me once I switched to daily nocturnal were so dramatic that there’s no way it was just chance.
A very special hello to Beachy, whom I had occasion to correspond with a few times over the past year.
Hey, what are you guys doing now that you can’t argue the benefits of Aksys vs NxStage every day? 
Too bad about Aksys. I was on a Fresenius Baby K myself (the pre-dumbing down model, identical to the dialysis centre ones, except not as tall), but I always thought Aksys would be a good choice.