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A tentative borderline curve-ball hiccup (and other mixed metaphors)…

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!

Tags: transplant
Posted by mark beadles in Uncategorized | No Comments »

Halfway around the sun, and a coincidence?

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!

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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.

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