question about recipients, post-transplant

[MissFrizz]

Today, my GP explained to me that post-transplant life for someone with other health conditions isn't necessarily better than life on dialysis.  The follow up care and procedures, along with the anti-rejection drugs are more complicated than I realized.

Does anyone have any thoughts on this?  Because, I was under the assumption that getting a new kidney would be a real problem-solving experience, when in fact it may be a drop in the bucket for someone in my father's position and offer no great increase in the quality of life after all.

Have any of you donated to a person in their 60s or 70s? 

Thank you.

[Orchidlady]

A GP may not necessarily be well versed in post transplant kidney patients. I think if you asked any post transplant patient, the vast majority would tell you the transplant is preferable to dialysis. My husband was scared of the impending surgery and felt he was handling dialysis just fine, thank you very much!  However, his first comment to me when we got home was that he did not realize how bad he had felt until he started feeling good again. You can live, and live for many years on dialysis. But I think most would agree dialysis is stop-gap measure, and the transplant is a godsend in getting back a normal life.

[lawphi]

My kidney went to a man in his sixties, who leads a very healthy and active life. 

As the wife of a recipient, my 30 year old husband had a poor quality of life with in center hemo compared to home hemo.  A transplant far exceeds any dialysis options.

My paralegal's mother is on dialysis and has other medical conditions that prevent her from medically receiving a transplant.  So much depends on the individual's medical condition that the transplant team is the best source of advice.  Also, transplant centers can lose funding and Medicare coverage if patient safety comes Into question.

[CK]

My recipient is only 47 and his only medical issue was his Polycystic Kidney Disease...but I have to say-it's been 6 weeks since surgery and he feels fantastic, like he hasn't felt in years and years, since his kidney function started failing. He has few side effects from the meds and what he does have are minor (hand tremor, increased blood sugar). He has blood drawn once a week and goes in for a check-up every 10 days.  He's doing exceptionally well...most people go in about twice a week for a few weeks at least.

He was never on dialysis, though he probably should have been. But I don't see how a kidney transplant could not be better, provided the transplant takes well, if only because he won't have to go to the center and his diet won't be so restrictive.

I'd speak to his nephrologist about it.

[sherri]

I agree everyone is different. Many patients do fine on dialysis and others deteriorate so quickly especially if they have comorbidities. Some retired ESRD patients are used to the dialysis and accept it especially since they do not have to worry about fitting it into a work schedule. I had a couple of patients who were adamantly against a transplant. They did not mind the dialysis as they had gotten used to it and did not want to have a surgery which may have complications. They were also not keen on taking the anti rejection medications. These medications put you at risk for certain cancers and fungal infections as they lower your immune system. That being said, the overwhelming majority of recipients are so happy not to have to  go on dialysis or get off it. The key is how does your recipient feel about it? What is his/her prognosis from the nephrologist? If the GP is of the opinion that transplant recipients don't necessarily do better than dialysis patients, is this his/her opinion or do they have evidence based research for this premise. Ask for research studies that have measured the quality of life in patients and also in both younger and older populations. This may have been true several years ago, but now that the anti rejection meds are better and doctors are better at managing patients, is his premise still true. There is no cure for ESRD, only treatments and dialysis and transplant are the only two treatments.

There are no guarantees. Most of the time the surgery is successful, both donor and recipient do well. There is always the risk that the transplanted kidney will not take or there will be a complication. Some donors have a difficult time if the kidney does not work or rejection occurs. Good you are looking into all the aspects surrounding this decision.

All the best,

Sherri

[elephant]

Dear MissFrizz,

I donated to my Dad in May 2011.   He's about 75 years old, and had kidney failure due to the anti-rejection medications used after his heart transplant in the 1990's.  The heart failure was due to viral myocarditis.  That means he contracted a virus that damaged his heart.  Anyway, right now he is the happiest most pleasant person I know.
 
I'm sure his nephrologists and cardiologists would not have considered him as a candidate for transplant if he was not likely to benefit from the surgery.  The outcomes for transplant are much better than dialyisis.  I'm also sure I would not have been accepted as a donor if he was not likely to benefit from the surgery.  We are fortunate that my Mom is in charge of dispensing his many daily medications, it is an important job.

I'm not in the outcome business, so I try not to speculate about the future.  Regardless, when I saw Daddy the day after transplant looking healthy (better than I did at that time!), I figured everything was already "put to paid".  love, elephant

[MissFrizz]

Thank you for all these wonderful answers.  There is just so much to think about.  My gut feeling is that it is still worth it, but I think I need to ask more questions of the transplant staff.

I love this board.  I just don't know where I would be if I didn't have you to bounce ideas off of.

[smudge]

Slightly different take on it.....

My friend looked at testing for her mum at the same time I was being tested (weird but true).  Mum was in her early 70's and had no other medical problems apart from Polycystic Kidney Disease (which is hereditory).  She was doing OK but not great on dialysis.  My friend has two sisters and all three of them have young children.  One also has PKD, my friend and her other sister do not.  So her dilemna was should she donate to her mum when her sister and her sister's children (and possibly her own children - though not sure if PKD can skip generations) could also need kidneys in the future.

It was a really tough call, solved in the end by her mum getting a cadavaric transplant and my friend hadn't even begun the testing process -though did know that as she was the same blood group as her mum that was one hurdle over with.

[MissFrizz]

What a difficult decision.  Thank you for sharing.

I know I am not buying my father extra years in life.  But, I do want him to enjoy what he has left, to be comfortable, to not suffer on dialysis as he has been.  He will still be diabetic.  He will still have heart disease.  But if he can feel better, have a glass of water to quench his constant thirst, or come visit his grandkids for the day, that would be worth it.

[CK]

  So her dilemna was should she donate to her mum when her sister and her sister's children (and possibly her own children - though not sure if PKD can skip generations) could also need kidneys in the future.

FYI, PKD is autosomal dominant...so if you have the gene, you have the disease. If you don't have the disease, you can't pass it on to your children, because you don't have a gene for it.  If you do have the disease, your kids have a 50/50 chance of getting it.