An Unpleasant Interruption, Some Good News, and A Plea


It’s been a while since my last blog post (early last December, in fact), and I’ve even neglected to process comments during the same period.  Why the interruption?  Have I finally run out of things to complain about?  Not a chance!  Actually, what’s happened is that on December 18 I underwent a kidney transplant from a kind living donor who I scarcely even knew before the surgery occurred.  (If you are interested in the back story, you might like to read the newspaper article about it that appeared in the Pittsburgh Post-Gazette last Christmas.)  My condition, primary FSGS, is idiopathic, and has been worsening for about 20 years (an unusually long time before transplant is indicated).  Things finally became acute last year when I was reduced to approximately 10% kidney function, close to the lower bound for survival without renal replacement therapy.  I was deeply humbled by the generosity of numerous people who stepped forward to volunteer to donate an organ to me, some of whom are readers of this blog and are in any case well-known to all of you.  To them I am unable to adequately express my gratitude, but I can try to pay it forward over time.  The donor selection process is largely opaque to the donee (so as to ensure that the donor not being is coerced or bribed), but as it turned out Tony Balko, the fiancé of my “niece”, Marina Pfenning, daughter of my colleague Frank Pfenning, became my donor, and thereby saved my life.

I have spent the last couple of months recovering from the surgery itself, which involved a substantial incision, monitoring my progress and the health of the organ, and adjusting the immune suppressants to achieve a balance between avoiding rejection and inviting infection.  As a pay-it-forward gesture I volunteered to be a subject in a study of a new immune suppressant, ASKP1240, that is being developed specifically for kidney transplant patients.  All this means frequent visits to the transplant center and frequent blood draws to measure my kidney function and medication levels.  The recovery and monitoring has kept me operating at a reduced level, including neglecting my blog.

The good news is that Tony and I have fully recovered from surgery, and I am happy to say that I am enjoying an optimal outcome so far.  The transplanted organ began working immediately (this is not always the case), and within two days I had gotten back ten years of kidney function.  By now I am at completely normal blood levels, with no signs of kidney disease, and no signs of rejection or other complications.  Tony gave me a really good organ, and my body seems to be accepting it so far.  I’m told that the first six months are determinative, so I expect to have a pretty solid sense of things by the summer.

I would like to say that among the many things I’ve learned and experienced these last few months, one is an appreciation for the importance of organ donation.  Every year hundreds of people die from kidney disease for lack of a suitable organ.  If someone is limited to the national cadaverous donors list, it can take more than two years to find an acceptable organ, during which time people often die waiting.  Another complication is that someone may have a willing donor, perhaps a family member, with whom they are incompatible.  There are now several living donor exchange networks that arrange chains of organ swaps (as many as 55 simultaneously, I’m told!) so that everyone gets a compatible organ.  But to be part of such an exchange, you must have a living donor.

Living donation is a daunting prospect for many.  It does, after all, involve major surgery, and therefore presents a health risk to the donor.  On the other hand nature has  provided that we can survive perfectly well on one kidney, and a donation is literally the difference between life and death for the recipient.  The trade-off is, in objective terms, clearly in favor of donation, but the scarcity of organs makes clear that not everyone, subjectively, reaches the same conclusion.  As an organ recipient, allow me to plead with you to consider becoming an organ donor, at least upon your death, and perhaps even as a living donor for those cases, such as kidney donation, where it is feasible.  Should you donate, and find yourself in need of an organ later in life, you will receive top priority among all recipients for a donated organ.  The donation process is entirely cost-free to the donor in monetary terms, but pays off big-time in terms of one’s personal satisfaction at having saved someone’s life.

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7 Responses to An Unpleasant Interruption, Some Good News, and A Plea

  1. Bob, I’m so glad to hear that everything went well. I look forward to seeing you in fine fettle again. And of course +1 for the huge kudos to Tony.

  2. Nice story, nice ends, and even nicer text.

  3. Nick Barnes says:

    Shocked to hear you were so ill, and so glad you have received a transplant. I’ve been on various donor rolls here in the UK for many years, and this prompts me to check that those are up-to-date.

  4. Glad to have you back Bob and hope you have a full and speedy recovery!

  5. Ian Ross says:

    Wow. That’s really wonderful news. Congratulations, and huge kudos to Tony.

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