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An update on my husband, Mike

Hi, all -- In late 2013 I posted to this forum because my husband was about to have a pelvic exenteration for recurrent rectal cancer, asking if anyone had experience with pelvic radiation therapy after a kidney transplant. The doctors strongly advised us to let the kidney go and attack the cancer aggressively. Knowing that he would most likely never be eligible for another transplant, he told the doctors to do their best to spare the kidney. Well, after a really complicated 12-plus-hour surgery (in a pelvic exenteration, the bladder is removed along with the prostate and any pelvic tissue showing evidence of cancer, so the doctors had to construct a urostomy using a piece of intestine to drain urine from the transplanted kidney), the kidney came through. It also survived intra-operative radiation therapy and postoperative radiation therapy, several hospitalizations for serious postsurgical complications, and an emergency operation six months later to address a near-fatal abdominal infection. Mike and the kidney went through every known level of hospital hell. A medical misadventure that nearly killed him by causing a lung infection, hospital-acquired MRSA, you name it. 

Mike is now two and a half years postsurgery and so far all his PET and CT scans show no evidence of cancer recurrence. For that we are deeply grateful to his fantastic surgeons at Johns Hopkins. The kidney, however, has lately shown signs of failing. It has been just over 16 years since that miraculous day in 2000 when I was able to donate a kidney to my amazing husband. It has been a real trouper. I am certain that had we taken the doctors' advice and let the kidney go, he would not have survived all that postoperative trauma while also undergoing dialysis. 

His nephrologist says he may get another six months or so of service from the kidney, but he had a fistula created a month ago proactively. Would like to avoid the chest catheter if at all possible, and it appears the kidney is determined to hang on long enough for that. We are so grateful for the years of quality time that valiant little organ gave us. Mike's friends joke about how often Mike has given the middle-finger salute to the Grim Reaper. His nephrologist said that, given his medical history, Mike will never be accepted for a transplant list, and we certainly understand that. A kidney is too precious to take that risk. But his doctors at Johns Hopkins said that if he is cancer-free after five years, in acceptable health and can find a living donor, they would be willing to transplant him again. Three friends immediately put their hands up.

Many things can happen between now and mid-2019, The cancer might come back. Mike's health may deteriorate in dialysis. His friends may change their minds. But our goal now is to keep him as healthy as possible on dialysis, and to honor all the work that the medical community -- and that kidney -- did to get us this far. 

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Replies

  • you have hold on for so many years :) keep holding on !! and life is living the moment. 

  • Hi Cass,

    I am so sorry Mike and you must deal with these issues at this time.  It is great you both press on,  I applaud the strength you both have (I too, have thumbed my nose at the reaper and will never give up.)

    Concerning dialysis, I would ask your nephrologist if Nocturnal Hemodialysis is an option if required.  These overnight treatments come with less side effects and diet restriction, while offering better clearances.  It is about as close to having a Tx as it gets.

     There is hope, as a new implantable artificial kidney has entered human trials.  Time will tell if this is an option for Mike.  I will hope & pray for a miracle for Mike and you (They DO happen, I have survived two decades with multiple health issues and two Txs and bouts of dialysis.)   God bless you.

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