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Revolution and Freedom
14 Jan 2010 19:04 EDT
Evidently some of you have been curious about the results of my one year post-transplant checkup. Your curiosity is heartening! So here we go.
I often like to start these posts with a bit of history in case I’ve got new readers, a useful fantasy that keeps me writing. In brief: umpteen billion revolutions of the Earth ago matter and energy were arranged into a Universe; forty-two-or-so revolutions ago some bits of said matter and energy were rearranged into Me; and twenty years ago bits of Me (namely my Kidneys) decided this arrangement wasn’t for them and staged their own revolution. My new arrangement is that I’ve spent a couple years on dialysis, and through the altruistic goodness of others I’ve received two kidney transplants. Don’t worry, it actually hasn’t interfered with my life as much as you’d think, though it does make for interesting conversation.
Last December my college friend Shark and I arose underwent twin operations; a surgeon removed a kidney from him and another surgeon installed it into me. Read the rest of this blog if you want to know what’s happened between then and now. Anyway, Monday was my approximately one year checkup; now you’re up to speed.
The one year checkup is a milestone in kidney transplant success. If your kidney is working fine after a year with no hiccups, then it will probably work for decades. See: six months after my first transplant, I had a “major rejection episode” that required a hospital stay and heavy-duty immune system killers, and the kidney still lasted 17 years.
The lifetime of a second transplant is strongly predicted by that of the first. If the first one lasts a decade, the second one probably will work at least that. When they were preparing us for this recent transplant, my surgeons told us that this would probably be my last transplant as I’ve known them. What they meant is that either this transplant will last the rest of my natural life; and if not, by the time I need another one they won’t be doing kidney transplants this way any more. Over the next decade or so they expect that technologies like growing kidneys to order from scratch, or kidneys from pigs that are tailor-made for humans, or the like will be commonplace and replace the need for human donation. Prometheus’ revolutionary gift keeps burning today, no?
Now, there’s a great big hulking caveat looming significantly behind all this. The above only applies if you take care of yourself. Most of the taking care of yourself if stuff we all should be doing anyway: watching our salt and cholesterol, eating a balanced diet, exercise, et cetera. You’re all doing that, right? Right. But of course there’s more to it than that. You have to take your megadoses of medicine mutliple times a day: currently I’m taking about a dozen medicines scheduled into four time slots every day. The meds have unpleasant and even deadly side effects. I monitor my weight and blood pressure and temperature because any bad moves there can be an indication of problems. Maybe some of you have read the Chronicles of Thomas Covenant. and recall the warning of his doctors: “Self-neglect might have killed him.” On the more likely bet that you’ve read Harry Potter, then I’ll use Mad-eye Moody’s words: “Constant vigilance!” Yeah, I know, it’s not like I have leprosy or Lord Voldemort on my tail, but facts are facts: at least 10 percent of kidney transplant patients fail to take their medicine and, and non-compliance is a sadly important area of research.
It’s hard, so I’ve made it automatic. I just do it. It’s what I do like breathing, eating, and going to the bathroom. I take my medicine every day. I eat right and I avoid the demon rum. I exercise. When it’s tough, I consider the alternatives. One alternative is dialysis, or as I affectionately like to call that, living hell. The other alternative to living with kidney failure, though, is Not Living. Actual Hell. I’m not sure what being dead is like but I’d rather not find out; I like living a lot even when it’s tough. There’s cool stuff in the world, and some people that I like.
From December to July I returned to the transplant clinic every week to get blood drawn, took my BP 4 times a day and was on fairly high doses of meds. In July it looked like everything was going well so they said I only had to return to the clinic once every two weeks and they lowered my meds some. But the one year point is what my surgeon calls “graduation”.
I’m glad to say I graduated with distinction.
At one year, my blood work is that of a normal, healthy 42-year old male. Maybe my cholesterol’s a little high. The kidney is doing its job perfectly (creatinine of 1.0 for you kidney geeks). There are no signs of rejection and my bone marrow is working like it should. The point of maximum risk has passed and I’m doing great; better than the first kidney, actually. Living donors are always better.
From now until forever, I’ll get my blood drawn just once a month and see a nephrologist every six months…status quo like I had been doing for 20 years already. I no longer need to visit my transplant surgeons since by now it’s obvious that everything’s been hooked up right and the organ’s not going anywhere. “Everything’s still in place,” as he put it.
I had become very sick in the year leading up to this last transplant, and as I now realize, I’d been becoming sick for many years. My last kidney didn’t work at 100% after that rejection episode, and I went for a good decade with about 25% normal kidney function. It did damage to my body: my muscles, my joints, my endocrine glands, even my skin. My body is now undergoing a major rebuild, its own sort of revolution if you will. My muscle mass is increasing — think “return to normal”, though, not “Lou Ferrigno” — although, yeah, one of the meds I’m on is testosterone, to counteract the effects of all the steroids. My joints were once riddled with gout and now that’s pretty much gone. It’s nice to have all this stuff working again so I can get on with my business of life and many more revolutions around the Sun.
I see upon reflection that I’ve shared a lot today, and some of it’s disturbing or at least not-fun stuff. I’m not bringing these things up to gain sympathy, which I need only a
little of. See, things can get tough. In my life it’s kidneys. In other people’s lives it’s earthquakes, or abuse, or mental illness, or what have you. We could all pretty easily feel sorry for ourselves, couldn’t we? It seems like it might be much easier just to let someone else worry about taking care of things, no? Our lives always have a built-in excuse for why we couldn’t do this, couldn’t do that, because it’s not our fault these things happen to us, right?
I learned at the age of 22 that the alternative to a life of suffering isn’t freedom from suffering. It’s freedom from life, which is no freedom at all.
All right, folks, thanks for reading. The checkup went ok.
Ten months, thirty-one days
01 Nov 2009 03:13 EDT
It’s Halowe’en 2009, October 31, and I’ve exercised at the gym for the entire month. In my own personal NaGoGymMo (National Go to the Gym Month) I’ve worked out every day at the local YMCA. To be honest, this would be impressive for me even ignoring the fact that I had my second kidney transplant just 10 months ago. I had never been the going-to-the-gym type; my favored exercises had always been running, swimming, and aerobics — but, as you’ve all heard me complain, my joints haven’t let me run or do aerobics in years. Going to the gym allows me to do two things that are critical to my future health: build muscle and exercise my heart.
Long-term kidney failure had done a number on my muscles and tendons. And not a cool number like 7 or 42, either. More like 13 or 4 or 11630. My muscles atrophied; my joints swelled; I developed bursitis in my knees and my right elbow. This was due to the metabolic changes associated with the kidneys: they regulate electrolytes and protein, and if they’re outta whack, so will be your muscles and joints.
Going into October, I really had no idea what lay in store for my body. I’d exercised about twice a week since my surgery, but I had not been able to handle anything really strenuous. I believed that I needed a challenge in order to see what I was capable of.
So it began. I’m stubborn.
Some days were great, some days weren’t. Overall, the days got better and better. I did 30-45 minutes of strict exercise time each day. I tried mornings, days, and evenings, and settled on evenings as the time that worked best for me — I could come home, settle in, and then sleep the sleep of the sleeping dead. I saw myself get stronger, too; I moved the pins downward a couple slots on most machines. Both Monica and my doctor noted that I gained a lot of muscle; I’d estimate maybe 5 pounds of additional muscle weight, actually. No, really, it’s muscle. Seriously. Really. Anyway.
Aerobic exercise saw the biggest change. Kidney failure is very bad for the cardiovascular system. People with kidney disease are most likely to die of heart disease, actually. I had discovered about a year ago that I have a small scar in my heart muscle; that is almost always a sign of a previous and probably unnoticed minor heart attack. I also have high blood pressure. So aerobic exercise is critical to my health. Eh, yeah, it’s critical to your health too. But my problem had been that I hadn’t been able to move my body hard enough or fast enough to get good results for my heart. Well, that changed this month.
I’m data-driven and fueled by music. I bought a snazzy new exercise heart monitor, filled up my snazzy old first-generation iPod mini. The iPod playlist is heavy with Gary Numan, B-52s, Adam Ant, Siouxsie Sioux, Afro-celt Sound System, Danny Elfman, Devo, The Fixx, Liz Phair, the Raconteurs, and Stevie Wonder right now. Around-the-neck/over-the-ear headphones. Turn it on. Turn it up. Hit the big black button on the heart monitor watch, and go go go.
There’s a downside to NaGoGymMo, though. Even though I was careful to alternate activity types on different days, going daily didn’t allow me time to rest. I also wasn’t taking enough time to stretch. That, combined with my already screwy tendons, put some hurtin’ on me. Right now I’m nursing a right lateral epicondylitis, commonly known as tennis elbow. I’ve also got a real fun case of plantar fasciitis in my right foot. Both of these are tendon-associated degenerative conditions, and in both cases the cure is rest and stretching.
But I figure after 31 days in a row I deserve a little rest, huh?
So the experiment is over. The results are better than I expected. I think that from a physical point of view I’m now just as mended as any other average forty-something male. I’m going to keep it up, of course, though not every single day. Well, maybe next October. And, hey, I’ve got more things to do next month! Have you heard that I’m writing a novel starting tomorrow as part of National Novel Writing Month? Not only that, but as an unemployed-American my official occupation is still ‘looking for ways to make money’. So, yeah, I’ve got more challenges to keep me busy.
But like I said, I’m stubborn.
Thank you to the Central Ohio YMCA Hilliard/Ray Patch Branch, to Polar Electro, to Apple, to New Balance, and to the two wonderful ladies in my life, my mother and my wife, for their implicit and explicit support in this experiment.
Mental Health, or "Hey! If my kidneys are the problem, why do I need my head shrunk?"
25 Sep 2009 19:18 EDT
You may have read my recent references to trying to go off steroids after 18 years. I’ve taken oral prednisone during that whole time, and also had occasional high doses of IV steroids as well. The reason I take steroids is of course so I can compete at a nation level in weightl…actually, no. The reason I take them is because steroids have an anti-inflammatory effect; specifically, they depress the immune system. Normally, depressing the immune system is a Bad Thing, but in my case it prevents my immune system from attacking my donated kidneys. But because of advances in medicine, immune suppression no longer requires steroids; the doctors would like me to discontinue them because they do have nasty side effects like diabetes and osteoporosis, especially over the long run. They also can cause your adrenal cortex to stop working. But either starting or stopping steroids has its effects too, one of which is “the crazies”. OK, you’ve all heard that already.
I spoke with the psychologist at my transplant clinic, who confirmed that, yes, discontinuing steroids can certainly make one cranky. She said that my regular shrink would certainly have encountered this issue before and should be able to handle it. Sure enough, at my psychiatrist appointment earlier this month, we brought this up with him, and he was very familiar with it. Evidently this is a common problem, and patients discontinuing steroids often need adjustments to psychiatric medicines at the very least.
So the outcome in my case was to increase my anti-crazy pills, to take it slow on the steroid discontinuation, and to be patient. It will pass, it will take time. This is excellent news, since with this new kidney, I have plennnnnnty of time 
I’ll editorialize now: this has direct bearing on the current American health insurance debate. Coverage for mental health conditions by health insurance companies is not comparable to coverage for other conditions. But as my example above should show, you really can’t separate the two. Physical health and mental health are so intimately related as to be indistinguishable. The body and the brain are both biology. In my opinion, if it is not medically or scientifically defensible to totally separate mind from body, then it is not morally defensible either:
Diseases of the brain are diseases of the body.
Mental health coverage should be on a 100% par with coverage for other health conditions.
Tags: health insurance, mental health, transplant
Posted by mark beadles in Uncategorized | No Comments »
Posted by mark beadles in Uncategorized | No Comments »
Marky needs a new pair of shoes
09 Sep 2009 03:32 EDT
Fair warning: this post is about my feet.
For those of you still with me, this is a story about changes both physical and metaphysical. Once upon a time my feet walked a lot and liked it. These feet were in 4 years of soccer, 6 years of marching band, and 4 years of the Army. All those years they were size 8 1/2 “wide” (EE or EEE) and pain-free.
Kidney failure can often lead to gout, a particularly unpleasant type of arthritis. It can lead to severe joint damage if untreated. About 10 years ago, or about 7 years after my first kidney transplant, I came down with it. It started to attack my joints, starting with my ankles and feet and eventually spreading to most of the joints in my extremities. The treatments were difficult — one treatment even landed me in the hospital because it completely stopped my bone marrow from working. The bone marrow makes blood, ya know?
(At this point I need to pause to deeply and sincerely thank all of you who have ever donated blood. Over the years I’ve needed a lot of blood from other people. I appreciate it.)
I had even started to walk with a cane a few years ago. Then I discovered that a very specific restricted diet can control gout. My condition started to improve, lost the cane, and took up hiking as a hobby. Hiking is wonderful exercise, but my feet were no longer happy. Enough long-term damage had been done: the bones in my arches were fused, compressed, and inflexible (a condition called pes cavus); and my toes were swollen to the point that my wide shoes were now ultra-wides: 9 EEEEEE. Count ‘em!
The only non-custom shoemaker that sells 6E shoes is New Balance. I am a very happily devoted New Balance consumer. They carry a couple particular models designed for people with problem feet like mine. So I wore my special shoes and hobbled along.
Then, as you probably know, about 9 months ago I had another kidney transplant. The rest of this blog details my remarkable recovery and return to health, but something was bugging me. My feet and legs were starting to hurt often. It didn’t make sense! Everything else was strengthening and feeling better. Muscles were returning; the hair on my head even grew back. I can swim laps and lift weights again. But my feet and knees: oy!
Last weekend I realized what was going on. My shoes no longer fit at all. I had to lace them too tight; they had no support; after exercise or walking I’d have heel and knee pain. I realized that my shoes were hanging off my feet. Wayyyyy too big. Not quite what I expected; I haven’t lost a significant amount of weight. So today I went back to the New Balance store. I told them that I needed new shoes, and that they’d have to size me again.
They sized me with a Brannock Device (yup, that’s what they’re called!) and then checked my gait using a FootDoc dynamic foot impression pad. It shows your arch, pressure points, whether you pronate or supinate, etc. The picture here is a scan of my very two feet!
The results were surprising: My shoe size has changed from 9 EEEEEE to 10 D within 9 months. (I know, I know, I am getting no sympathy from any women in my audience who may have at one time been pregnant. But still. My formerly very high arches are now normal, my toe joints are no longer chronically swollen, and my feet have stretched out, lengthened. No wonder my legs were killing me! I was walking around in entirely the wrong sized shoes.
My formerly very high arches are now normal, my toe joints are no longer chronically swollen, and my feet have stretched out, lengthened. No wonder my legs were killing me! I was walking around in entirely the wrong sized shoes.
I bought a pair of walkers and a pair of cross-trainers today to start with. I need to replace all of my shoes now. They are like new feet, frankly. When I look down at my new shoes, I no longer see stubby, boxy, shoes that are laced too tight. What I see looks like a pair of someone else’s shoes.
But hey, I’ll get used to it. They replaced one organ inside, and the rest of me seems to be changing so much more. Inside and out.
A short update
11 Aug 2009 00:17 EDT
The news after the last update has been rather anticlimactic. My lab tests have revealed that my fasting glucose is indeed impaired, but that it’s not what you’d call diabetes. At least, no one has given me that diagnosis yet. So, I’m proceeding as expected, reducing my sugars and starches and trying to make sure I get enough exercise. It’ll be good for me to do those things anyway.
The condition is exacerbated by the steroids I take. I’ve been taking some level of prednisone every day for about 18 years now. My dose has been small, 7.5 mg, for the past few years. The consensus of all my doctors is that even this dose needs to be gradually reduced and ideally eliminated, and I agree. Long-term steroid use is bad for you, just ask A-Rod.
There’s a drawback to weaning off steroids, though. If you take steroids long enough, your adrenal glands (which produce your body’s own steroids) stop working; they figure, hey, why should I bust my ass makin’ hormones when there are so many around already? Then when you reduce your steroids, your adrenals aren’t there to do the job. This can cause bouts of joint pain, funny pulse and blood pressure, and mood swings.
Pretty damn bad mood swings. From what I understand, chemically it’s similar to premenstrual hormone imbalances. That’s right, I’ve been PMS’ing for the past month.
All kidding aside, my wonderful and beautiful wife and children have had to live with my mood swings and ill temper for the last month. This really bothers me, but I’m optimistic that the mood swings will end as my system equalizes.
That’s all for now, comrades.
Ad astra per aspera!
A tentative borderline curve-ball hiccup (and other mixed metaphors)…
31 Jul 2009 01:34 EDT
One of the things my doctors and surgeons told me leading in to the transplant, right after the the transplant, and at my 3- and 6-month checkups was that one of the possible side effects of steroids and of my main anti-rejection drug — Rapamune (sirolimus/rapamycin) — is Type II diabetes. This is part of the calculus of drug management; often people with chronic diseases have to take medicines to combat the side effects of the other medicines, and then medicines to combat their side effects, ad…um…nauseam. I was aware of this potentiality, but didn’t give it heavy weight in my medicinal scales. I’ve never had even the slightest tendency toward being diabetic. Consider — I’ve had my glucose measured at least every month for the past 20 years, and it’s always been solidly normal. I had a glucose tolerance test in the run-up to my first transplant and passed it with flying sugars. And indeed, I have always seemed to be quite sensitive to insulin. The night before my second tranplant, I had an issue with potassium in my blood (too much). One of the treatments for that involved injecting a bolus of insulin right into my veins. I discovered I was more sensitive than average when the nurse noticed me rapidly losing consciousness. It’s kind of soft, gushy feeling to have a blood glucose of 20.
So in short, it was a surprise when last week my fasting glucose came back at 125.
Now, 125 is high for a fasting blood sugar. It’s not technically high enough to diagnose diabetes; that limit is 126. So I was literally on the borderline.
So they ordered a repeat fasting glucose, and a test called HbA1c. HbA1c, in short, measures your average blood sugar over the last 3 or so months. How it does that is by measuring the percentage of your hemoglobin molecules which have become permanently bound to glucose molecules. Red blood cells have a life of about 120 days, so when you measure HbA1c, you get a “sliding window” view of your current population of RBC’s. The average HbA1c for a first-time diagnosed diabetic is about 10-11%. Diabetics are often encouraged to have a level of 7% or less in order to avoid the long-term damage from diabetes. Normal HbA1c is in the 5′s or less.
So yesterday my fasting glucose was 99: normal, after last week’s borderline 125. And my HbA1c was: 6.2%. A number which is also borderline. Which side of the border depends on which analysis method the OSU lab uses (HPLC or immunoassay), as well as the clinic’s own guidelines.
So I’m on the border of becoming diabetic, due to the effect of two of my transplant medicines.
I have not yet “officially” heard from my doctor on any official diagnosis or recommended course of action. I don’t expect to hear probably until next week: this is not an emergent situation. 
So right now I’m in limbo (which indeed is Latin for ‘border’), but not a bad limbo, actually.
If I am becoming diabetic, it could not possibly have been detected early. In April my fasting glucose was 88 and 91. So the fact that I get my blood tested every week has caught this as early as possible. This also means that it’s not likely I’ll have any different course of action that I’m already on! To wit:
- Continue reducing my daily steroids and ideally eliminate steroid drugs altogether. Long-term steroid therapy has serious side effects. In particular they too can cause diabetes, especially in conjunction with rapamune.
- Continue daily exercise aimed at increasing muscle mass, burning up excess fat stores, and cardiovascular health. My weight is just about fine, so my goal here’s not too lose weight per se.
- Modify my diet by reducing or eliminating simple sugars and “white” foods.
However, based on their own guidelines and patient experiences, they’ll let me know exactly what course to follow. It’ll be no fun if I eventually turn diabetic, of course. From a management perspective, I’m sure I can work that into my life as I’ve done countless times before.
What really bothers me? The long run. That’s how I always think: the long run. Sometimes people even pay me to think that way In this case, I know that the lifetime expectancy for a kidney transplant is significantly reduced in people with any form of diabetes.
To be honest, that makes me indignant. I was initially just out-and-out red-hot call-in-Red-Adair angry, but I’ve moved on to something akin to righteous indignation. But not quite. While modern Christian thought regards righteous indignation as the only form of anger which is not sinful, Aristotle notes that righteous indignation is the Mean between envy and spite, a virtue based on reaction to others’ fortunes, not one’s own. So I’m still working through this, but I’m quite familiar with my own emotional response to this kind of news as well, and I’ll return soon enough to my shifting status quo.
So.
That’s the results, folks. Currently they mean, well, nothing, except for lot of food for thought. Unsweetened, of course.
Excelsior!
Halfway around the sun, and a coincidence?
13 Jul 2009 17:29 EDT
Six months ago, snow was on the ground, the nights were dark, and the Earth was halfway around the sun from where we are now. That’s when I had my second kidney transplant – December 23, 2008, here in Columbus, Ohio. It truthfully seems like a different world to me now.
The full story is elsewhere on this blog, but I’ll recap the highlights of what has come before:
I have a disease called Goodpasture syndrome which ruined my kidneys 20 years ago. I spent 2 years on dialysis waiting on “the list”, then had my first transplant at University of Michigan in 1991. That organ served me well until 2008, when it finally succumbed to the effects of chronic rejection and the medicines. My doctors told me I’d need another transplant, and an old and close friend (“Shark”) volunteered his flesh. I returned to dialysis from September until December while undergoing all the tests required for the surgery. It was performed on my son Paul’s 10th birthday, and I was home by the New Year.
Today was my six-month post-transplant checkup. The checkup itself was not a very intensive visit – they weighed me, drew half a dozen tubes of blood, took my blood pressure, and asked how I was feeling. The blood work is really what gives them all the information they need: the kidney controls most of the composition of your blood. It manages the fluid level, the electrolytes, the acidity, the minerals, the level of toxins, and even the red blood cells. Red blood cells are made in the bone marrow, and the kidneys make the hormone that stimulates the marrow.
We met with my nurse and my surgeon. It went well. The nurse called me “the poster child” for health after a transplant. The surgeon looked me over and declared he doesn’t want to see me again for six more months, and as a matter of fact I could reduce the dose on one of my many medicines.
So here’s the upshot:
- Blood pressure normal. In fact, it’s better than yours.
- Blood tests all normal. Indistinguishable from a human!
- My gout and the associated joint damage (feet, ankles, knees) is rapidly disappearing. The doctor says this will continue to improve. This has been one of the worst effects of my chronic disease, and I’m glad to see it go. I can even run again!
- My anemia, which I’ve had for years, is officially gone. This means normal strength and energy, and that I no longer need to take weekly shots of blood hormones.
- I’m still going to the gym 2-3 times a week, concentrating on building muscle and reversing atrophy. Weightlifting, swimming, and the arm bike!
- My daily dose of steroids has been reduced by 1/3. Steroids have horrible side effects, so this is great news.
- My brain is working at full capacity again. Uremia (the effects of kidney failure) affects every organ system, including the cranio-nogginal system.
- I feel about 110%, maybe 120% now. This is the important number.
My family is ecstatic that hubby and daddy is back, and I’m ecstatic to be back with them. Our lives are returning to the state of barely controlled chaos we call “normal”. This has been a whirlwind for all of us, an extended cyclone of experience that threatened constantly to blow us away. But Monica and I have spent years weatherproofing our lives, preparing for the inevitable gusts of poor health. We were lucky enough to find the eye of the storm: self-sacrificing friends and family; caring and professional doctors, nurses, technicians; great insurance coverage(!); a work environment allowing lots of flex time; and living in a society, country, time, and location which cultivate miracles like this. I’ll drop some names of the otherwise faceless and unsung organizations that nearly always go unappreciated: remember, all are made up of real people. Thanks to Ohio State University Medical Center, DaVita Dialysis Dublin, Riverside Nephrology, Riverside Methodist Hospital, Harvard Pilgrim Health Care insurance, Sophos, Knightsbridge Internal Medicine and Cardiology, and many more that I’ve forgotten.
And thank you for reading this. It really matters, you know? The point here is not really about me, you see; I’m doing great. Just do me a couple favors: Understand, support, and communicate the real-life impact of organ donation. Know and believe that – with love, will, and sacrifice – it’s possible to overcome the seemingly insurmountable.
Excelsior!
==============================================
Addendum: And then, a coincidence happened.
Hey! So I walk into the clinic this morning, and walk up to the receptionist’s window to sign in. I recognize the name above me — our old and good friend Matt B__ (Facebook types, you probably know who this is). And indeed, he was sitting right behind us …. with a potential donor! Matt has been suffering from kidney failure and is on dialysis as well, and like us, he and his wife have three young boys who need a healthy daddy. I’m so excited that a potential donor has stepped forward. Bless her with many blessings! They’re still early in the process, so please send prayers, wishes, vibrations their way. Monica and I met Matt in college, and he read the scriptures at our wedding 17 years ago.
What strange karma that he’s living down here in Ohio and seeking a transplant as well! There are no coincidences.
3 months (or so) post transplant
13 Apr 2009 20:52 EDT
[Our story so far...I have had kidney failure since 1989 due to Goodpasture Disease. I had one kidney transplant in 1991, and a second one on December 23 of last year, this one donated by an old college friend. You will see him on Facebook as 'Shark'. Friend him! He's an intelligent, funny guy, and painfully shy.]
Today was my three month post-transplant appointment with my transplant surgeon. My lovely and intelligent wife went with me, as she usually does. I feel compelled to point out this transplant clinic is one of the most efficient medical organizations I have ever encountered.
My borrowed organ is still working perfectly. My blood levels related to renal function are all well within normal range. I have shown no signs of rejection whatsoever, and I’m whizzing like Secretariat. Surgically, all is perfectly healed and no twinges, no pulling, even when I lift (relatively) heavy objects like my 4 year old. (I still have to be careful there.) My blood pressure — which as you all remember from physiology is controlled by the heart and kidneys — is continuing to improve. This week I’ll be down to 2 blood pressure meds from an original 4.
Really the main medical problems still remaining are the gout and the anemia. For the gout, time is the main cure. For the anemia, I’m now taking megadoses of iron and vitamin C. The doctor was a little concerned about my iron levels, but Monica pointed out to him that since I’m building lots of muscle now, most of my iron is going into myoglobin. To which my surgeon replied, “Hm, good point.” See, that’s what I keep her around for, to be as smart as the doctor.
So I’m working on rebuilding this patched-up ol’ bod of mine into a well-oiled hairy machine (sorry for that image). Many chronic diseases can have insidious effects; I didn’t notice the daily damage that was happening over the years, or simply chalked it up to getting older. I’ve been as active as possible, but with your own body working against you, it is often one step forward and two steps back.
That’s all starting to reverse now. I’m still going to the gym and I’m building significant amounts of muscle. I can tell from my own senses, from Monica’s compliments, and from the fact that I keep having to add weights on the machines I typically walk, do nautilus (except abs), swim, and my new favorite activity, the rowing machine. I’ve had a problem with doing cardio since my knees are absolutely shot; I can’t run, do the fitness bikes, or do the ellipticals/stairsteppers. But cardio is critical for me since the main cause of death for kidney transplant patients is cardiac-related. Then I tried the rowing machine at the Y a couple weeks ago and wow! No joint strain at all. Great cardio, both upper and lower body excercise, and since it doesn’t strain I can go for a long time. Of course, I have to keep close track of my heart rate during exercise, but it’s generally been fine. Just a glimpse into how I modify my fitness regimen for my conditions. Our local YMCA is a fantastic facility, by the way.
As good weather approaches, I’m eager to get back to my favorite fitness activity, hiking. It’s not just fitness: it’s fitness, meditation, stress reliever, family activity, and time communing with nature. I anticipate we’ll be able to get back out doing this by the end of the month.
In other news, I’m mad as a hatter 
and an insomniac to boot, but my shrink likes that since it pays his bills. Seriously, going to a psychiatrist is de rigueur for people with longtime chronic diseases or transplants. Better living through chemistry, in particular (S)-citalopram. I’m also still a shiftless bum self-employed, and Monica is back in school to ultimately get her MS in Chem Eng. The kids are dramatic musical insane energetic argumentative morose creative geniuses. Life is back to abnormal.
Citius, altius, fortius!
Two months!
01 Mar 2009 14:11 EDT
It has been a while since I posted on my post-transplant progress. I’ve been so occupied with other things that I haven’t been too concerned about my progress – which is actually great news if you think about it.
My health situation is frankly wonderful! My new kidney is working perfectly, and its good effects are spreading to all my other systems. The kidneys regulate metabolism in many ways. The list, as I’ve alluded to before, includes red blood cell production, Vitamin D production, calcium and bone metabolism, parathyroid gland control, water and pH balance, protein metabolism, blood pressure control, electrolyte balance, and of course waste elimination. Now that all these things are back in whack, I’m noticing an improvement in multiple ways.
I’m adding muscle at an amazing rate, especially to my arms and legs. I’ve been going back to the gym, and unlike the past few years this exercise is now able to build muscle. My color (such as it is for a Northern/Central European) has returned so I no longer appear to be a sickly albino. My energy level is way up. My fingernails, hair, and beard are growing fast and thick. The most amazing thing is my gray hair is going away! My hair is coming in dark again, my natural color, and my bald spot is disappearing.
I’m not just the president of kidney transplant hair club for men, I’m also a member.
Medically, my tests all remain within the normal range, and seem to have stabilized. My (actually, Shark’s) kidney function is actually better than it has been in 20 years. My blood pressure is so good that my doctor has been lowering my doses of blood pressure meds. So it appears that as long as I keep taking good care of myself, I’ve got a good runway for a few years more of good health. Knock wood.
Of course, since all that’s been going so well, this has allowed me to notice the world around me and its travails. Mind you, these travails seem petty in comparison to the great blessing I’ve received.
Nonetheless, I and my family continue to live in interesting times.
My grandmother died two weeks ago at the age of 89 and after extended illness. She lived a long and fruitful life and lived to see and love all three of her great-grandsons, who all love her in return. She was a talented, funny, loving wife and mother and Tigers fan 
. She taught me to cook, to play billiards, and to play serious card games (pinochle, bridge, euchre, cribbage…). She was a shark at both pool and cards and consistently beat everyone at both She came from a very large family and was raised during the depression and those lessons never left her. So this wasn’t necessarily a sad event, but something that’s been occupying our time the past couple of weeks.
My wife’s uncle died later that same week; he had been ill for many years and seemed to have been kept going only by the sheer force of his wife’s love and will.
Our middle son, Paul, has been going through a rough period in his own life with anxiety, and is seeing a therapist recently to try to help him.
Oh, and me? As you may have heard, I was laid off on Friday from the company I helped start nearly 10 years ago. But hey, 10 years employment as a senior employee at a high-tech startup through a reorganization and an acquisition is actually a damn good run. So I’m examining a number of opportunities and possibilities: similar employment for another company; start another company; consulting; switching careers, even. I’m taking this occasion as an opportunity to set myself up well for the next ten years, so I want to get it right. I’m not upset about being laid off; I anticipated the event and had been re-examining my career anyway. But it’s certainly a stressor.
My response to all these things? First, my recent gift of life gives me fresh perspective and helps me to be much more relaxed about these events. Second, new energy and new perspective allow me to contemplate my situation and look on all these things as perhaps the start of another chapter. Who knows?
7 weeks post-transplant surgeon appointment!
09 Feb 2009 23:53 EDT
Today was the ‘big day’ after the transplant. Customarily kidney recipients have a checkup by their surgeon 6 weeks after the transplant (for scheduling reasons, mine was at 7 weeks). At OSU, the surgeon is also effectively a nephrologist, so he not only covers the physical surgery but also all the medications, the kidney function, etc. He reviews the last 7 weeks of blood tests (I’ve had blood drawn twice a week since the transplant) and of vital signs (I’ve been taking my temperature, pulse, and blood pressure 4 times a day). He goes over medications, symptoms, side effects, etc. This is all in addition to checking the surgical incision, healing, and complications. He also removes any staples or stitches still present, and finally checks out your “pee“.
Everything was hunky-dory, folks. My kidney function remains within normal parameters. In other words, the kidney is serving me just as your kidneys are serving you. My blood pressure is beautiful, probably better than yours! As a matter of fact, the doctor instructed me to lower one of my blood pressure meds; it looks like I need less of it, and it has some unpleasant side effects. I asked the doctor about any activity restrictions such as swimming; he examined my scar and told me no restricted activities. I told him that I am feeling great and have even started going back the gym, which he seemed pleased with.
The only minor downsides are as follows: the blood pressure side effects mentioned above, which we are addressing. A little bit of anemia, which is making me a titch weak but which we are also addressing (yay iron!). A little bit of gout, my painful kind of arthritis, which we aren’t specifically addressing but which is getting better on its own.
His exact words were “You’re doing great”. He doesn’t want to see me for two more months! I am very pleased by this, and still in amazement at how quickly I’m healing and returning to health.
In modern times, miracles are performed through the agency of human actors.
about mark beadles
I write the things you read here. Polymath renaissance redneck. I build software, stories, and young men. More...on the desk
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