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One month post-transplant!

On December 23, 2008 I received a slightly used kidney from my friend Shark. Two fine surgeons and their teams at Ohio State University hospital performed the wildly successful operation. I spent just a week in the hospital. This was my second kidney transplant; the first was in 1991. Today is the one-month anniversary of my second transplant.

Everything is going extremely well (knock on wood)….

My incision is essentially fully healed. I had my staples and stitches removed yesterday. The wound is completely closed, just a little bruising and scabbing left. I honestly no longer feel any pain or even discomfort from the incision or from the extra organ, except sometimes if I twist or bend the wrong way. Even then it never hurts, I can just feel it.

One strange side effect of having had two kidney transplants, one on each side, is that my abdomen from belly button down to my beltline is now completely numb. To some of you this may be confusing; let me explain. No, there is too much. Let me sum up. When you receive a kidney transplant, they do not remove the old kidneys, and they don’t put the new kidneys anywhere near the old ones. They actually place the new kidneys in the lower abdomen in front, just above the hipbone. They go on either left or right, depending on the preference of the surgeon and the anatomy of your veins and arteries. They hook the blood supply up to the vessels serving your leg. I now have 4 kidneys, only 1 of which does anything: 2 in the normal spots, 1 on the left side of my belly, and one on the right. Because of where the transplants have been performed, I have considered getting commemorative tattoos. Note that the image is not to scale.

All my blood tests are normal. My blood pressure is averaging 135/80. My weight is stable, I’m not retaining any water. I can drink all I want (alcohol excepted) and I can eat a normal diet. My strength is returning; my hair, nails, and skin are growing like a man of 25; and my mind is sharp again. Ask anybody who plays Lexulous against me if you don’t believe it

My only remaining restrictions are lifting heavy weights (like my 4 year old), driving, and swimming. I plan on breaking the driving restriction tomorrow. I have about 2 more weeks of my disability leave from work which I intend to use to ensure I’m fully recovered, but I’m feeling pretty much like Mark again. Ready to kick ass and chew bubble gum, and I’m all out of bubble gum.

I’m already starting (in my MIND) to plan out our future activities: the sort of things we like to do are travel, hike, and camp. I bit my kids with the hiking bug a few years ago and they are now severely infected . I’d also like to finally take Monica on that romantic trip to New York I’d been planning before I got waylaid by these demons who periodically torment my innards.

To all of you who’ve been following this adventure, whether publicly or as lurkers, thanks for supporting me and taking the time out of your lives to read this drivel. I’ll wax philosophical now. I am in a curious position as a human being. In a state of nature I’d be long dead. My continued existence depends every day on the society and economy composed of millions of others around the world. Every day I’ve needed treatments and/or medicines that are performed and adminstered by thousands of specialists with years of education and experience, which were developed by thousands of scientists, researchers, doctors, businesspeople, and patients, and which depend on the medical infrastructure created by a chaotic coalition of government, academia, and industry. You see, I don’t hate Big Pharma. I can’t look myself in the face and say that they’re in it just for the money, because that’s just a tautology. When someone’s in it for the money, they call it a business. If money motivates pharmaceutical and medical instrument companies to develop and market the miraculous things they do, I’m good with that. This depends also on the healthy roles of government and academia as well. It’s notable that both my transplants have been performed at major research universities. I’ve been extremely lucky to have been born in a place that has the economy and society that has allowed me to survive and even prosper; places like US, Canada, western Europe, Japan. There are many many places in the world that sadly don’t have this kind of infrastructure and where a Mark Beadles would have been dead at 22.

Okay, crappy armchair philosophy over.

Per aspera ad astra!

Tags: transplant
Posted by mark beadles in Uncategorized | 2 Comments »

"Normal"

Ohio State University has an online service called TransChart. It allows all their transplant patients to view their complete history of lab results. Patients can also input their vital signs (I take weight, blood pressure, pulse, and temperature 4 times a day) so that the nurses and doctors can keep track. They use it not only to communicate with patients but to collect and track massive amounts of data on thousands of transplant patients, their labs, medications, and vital signs. By correlating all this data they gain a better understanding of what techniques, medications, etc. work better and which don’t. It’s the kind of thing that a research university is ideal for.

That’s all in the aggregate, of course. But it has a very personal, even intimate, connection for every individual patient, in particular me.

Over the years my first transplant declined in function. From a medical point of view my body has not been “normal” in a good 5-10 years. What I mean is this: I’ve lived with a certain abnormal level of toxins in my body, with a reduced amount of red blood cells, and with unbalanced electrolytes for a long time. It never stopped me but it was never a good place to be. I had to take shots and get transfusions for severe anemia; I developed osteoporosis even though I’m not an elderly white or asian woman of short stature; I’d get swollen legs; and lots of other not-fun symptoms. This was simply because I had only one partially working kidney and it mattered.

Today I got a most pleasant shock. I accessed the TransChart system for the first time and looked at my bloodwork from yesterday.

Every. Single. Lab. Value. Was. Normal.

Three weeks ago they put a new kidney in me, and three weeks later it has rendered my body essentially perfectly healthy.

I mean, sure, I’m heavily medicated in order to maintain this healthy state. I have to follow the rules, take care of myself, and eat right. But that’s not the point. My creatinine (the primary measure of kidney function) is better than it has been in 20 years. It’s indistinguishable from a person with two healthy working kidneys.

To celebrate, I went out to my first restaurant meal since my surgery. Cheese manicotti and Sicilian chicken soup. Buono appetito!

Tags: transplant
Posted by mark beadles in Uncategorized | 5 Comments »

16 days post-transplant…

I realized today that I feel better than I have in years.

When I first suffered kidney failure in 1989, it happened almost immediately. Within about 2 weeks’ time I went from young, fit Army veteran to dialysis and breathing on a ventilator. I didn’t really have time to feel ill. But the failure of my first transplant I can literally trace over years. The first sign, I believe, was when I came down with chronic gout about 10 years ago. Gradually over time I became less able to deal with minor illnesses, my blood pressure became uncontrolled, and eventually it came to the point that I had to be hospitalized just for the flu. I lost anything resembling an appetite about 2 years ago. I began to experience panic attacks about two years ago, followed by full-on anxiety disorder, insomnia, and depression. It’s been so very gradual, though, that I barely noticed it and/or simply accepted these things as signs of “growing old”.

Then this morning I woke up after a refreshing, deep night’s sleep. I was in no pain. You have to understand that I’ve suffered from chronic pain for the 10 years that I’ve had gout. I also, obviously, just had major abdominal surgery a little over two weeks ago. But no pain today. Normal appetite. Healthy metabolism. Nails, hair, skin growing. Most importantly, brain no longer fuzzy.

So I got up, shaved, showered, dressed, and scooted off to the clinic for my biweekly blood draw. At the clinic, the phlebotomist (who’s seen me every week for the past couple months) commented that I looked well, and asked how I was feeling. “I’m feeling good,” I said, and then upon a sudden epiphany I added, “Better than I have in years, in fact”.

To be sure, I’ve some ways to go. My incisions are still healing. I’m still in danger of certain complications. I have serious work to do to restore my muscles, which have wasted away due to the abuse my entire body’s been through. My heart has also experienced some damage due to my kidney failure. As soon as the doctors let me, it’s back to the Y every day, and back to hiking on the weekends.

But boy do I feel, well, normal.

Tags: transplant
Posted by mark beadles in Uncategorized | 2 Comments »

An unexpectedly pleasant journey…

Today’s Day 13 post-transplant; tomorrow’s my 2 week anniversary. Feeling pretty good, actually. I’ve lost most of the post-surgical swelling now so I can do things like climb stairs and bend at the waist

One of the responsibilities I have as a new transplant patient is to get my blood drawn twice a week down at the transplant clinic at Ohio State University. This includes some special lab draws which absolutely must be drawn within a specific 1/2-hour window. So Monday and Thursday I go in for a blood draw at approximately 10:15 am. Typically I’ve just gone in, got it drawn, and left.

Well, I’ve had a couple other things going on – some stitches that needed to be removed, and the unfortunate recurrence of my gout. So after my blood draw, I went back to the receptionist window:

Me: “Hey, I’ve got some stitches from a previous catheter that Dr X. said should be removed in 7-10 days. It’s day 8. Can I get that done here somehow? Is that something I can arrange?” (thinking that they’ll make me an appointment)

Receptionist: “Hold on one second, let me ask your nurse”. (exit)

Enter Dr. Y., the surgeon who performed my transplant

Dr Y.: Hey, Mark, how’s it going? Give yourself a hernia yet? (This is surgeon humor. It’s funny ’cause he actually thinks the surgery will eventually cause a hernia).

Me: Pretty good, I….

Monica (interrupting): His gout is bothering him.

Dr Y.: Oh really?

Monica describes symptoms.

Dr Y.: Do you have any colchicine? (alkaloid medicine for acute gout) Start taking that at the following dosage. It won’t hurt the transplant.

Me: OK. (Wow, free advice!)

Mark and Monica sit back down in the reception area. Within 30 seconds Mark’s name is called. It’s Mark’s nurse.

Nurse: Come back to the treatment room.

At treatment room

Nurse: OK, we’ve got your blood tests from last week. Everything is fine. We want you to lower your dose of your immune suppression med.

Me: Woo Hoo!

Enter Dr Y.

Dr Y.: Let me look at the stitches. OK, based on the fact that you heal slower than average, go ahead and leave them in for another 5 weeks. Don’t forget to lower your immunosuppressive dose and take your gout medicine.

Exeunt.

And that was it. Let me emphasize that all of the above was done without an appointment and immediately upon request. With zero waiting time and unscheduled, I was seen by a surgeon and a nurse in a private room. This is simply the most amazing medical service I have ever received. This is a class operation.

Tags: transplant
Posted by mark beadles in Uncategorized | 2 Comments »

Day 10 post-transplant: progress…

Today is 10 days after my kidney transplant. I’ve been making what I consider to be good progress.

• My strength is improving; I took my longest walk yet today – only about a block, but the farthest I’ve gone yet.
• My incision is healing well; I still have a bit of (yuck) drainage, but much less than I did initially. The surgeon did warn that I would have some due to the extensive surgery required to install Shark’s kidney. Most of the incision is scabbed over real nice, too. Did I mention I’ve got a bunch of cool staples?
• My swelling is going down rapidly. I had about 10 extra pounds of fluid on me when I left the hospital, almost all in my abdomen. Hence my jokes about feeling pregnant. But since then I’ve been losing 1-2 pounds per day. I think I’m about 5 or so pounds above where I need to be. But it’s easy to lose…just keep peeing!
• My new kidney is working like mad. I didn’t know that Shark was a race horse. I am peeing out a good 3-4 liters every day. And, pardon the expression, the pee looks good! This, of course, is the number one most important measure of how the surgery has gone.
• My blood pressure and pulse are much much much better than they were prior to the surgery. While I was on dialysis, my blood pressure would regularly rise to 200/115 and my pulse was sometimes too fast or irregular. Now both are well controlled, although my pressure is still a tetch high.
• When I first got home, I occasionally developed a temperature which went away with Tylenol. These have stopped and my temperatures are good.
• I’m doing more household activities like eating dinner at the table with the rest of the family, climbing the stairs to take a real shower in my own shower. It’s easier to get around and my surgical site doesn’t really cause me too much pain, just discomfort.
• Psychologically, I’m doing better than my first couple days back home. I attribute this to, among other things, going back to my pre-dialysis dose of my antidepressant, Lexapro. When my last kidney stopped working, the Lexapro would build up in my system since I could no longer excrete it. So after a couple days of my regular dose, I’d be so buzzed I couldn’t sleep. Therefore I halved my dose (with approval of my shrink). Now that I have a working kidney, I’m excreting the medicine normally again. Since I was beginning to feel symptoms of depression, I’ve gone back to my full dose. It seems to be helping.
• I’m sleeping better and pretty much through the night. Except for getting up to pee. Did I mention that?
• My brain is getting less fuzzy. Uremia has the unfortunate effect of making your gray matter work less efficiently.
• I have a ravenous appetite. I haven’t had an appetite in, um, well, years. Another unfortunate symptom of uremia. Now I like food again, which is important to healing.

10 days down, 32 to go until my six-week milestone. So far, so good.

Tags: transplant
Posted by mark beadles in Uncategorized | 6 Comments »