musings on a pre-emptive transplant

[livingdonor101]

Obviously, I only know what's been written, but I'm a little concerned that your brother feels he's being pushed into the transplant before he's ready. Maybe it's simply nerves and a normal fear of the unknown, but I think it's important that his thoughts be heard. Transplant surgeons are quite prone to the "More Transplants Quickly Better" mentality, and everyone wants your brother to be healthy again, so is it possible they (and perhaps you too) are dismissing your brother's concerns?

So much attention is paid to the prospective living donor's autonomy or willingness in making the decision to donate, but very little is given to the recipient. That a recipient wants a transplant, and will put their loved one at risk to have one, is just assumed. And it shouldn't be. The recipient deserves to make the decision s/he thinks is best for her/his care.


Of course, I may be reading more into this than necessary, but it's something to think about.

[kali]

My recipient surgery was also pre-emptive.  Unfortunately it's been almost a year and a half and my recipient is not doing as well as he was before surgery.  Sometimes it is as if the surgeons snipped his soul away.  He is back to work but that is about it.  His energy level is so low he spends most of his time watching tv when he is at home.

I've suggested therapy but he is worried about taking additional drugs.  His kidney numbers are good and steady but his quality of life has not improved.
Kali

[sherri]

Kali,

Sorry to hear that your recipient is not responding to the transplant as both of you had hoped for. Some recipients I guess do better with the immunosuppressants than others.Often the GI symptoms or dermatological flair ups are side effects that may not be expected or understood. People think they will get a new kidney and go back to being "normal". I think recipients have to adjust to a "new normal". Also some ESRD patients get used to dialysis and don't feel like they want to take the chance with surgery and immunosuppressants. I've met several dialysis patients who chose not to explore transplant and are satisfied either with hemodialysis or peritoneal dialysis.

What difficulties and challenges does your recipient face now after the transplant? Is it physical or emotional? Also in terms of therapy, not all therapy requires drugs. Some people do well with cognitive therapy and find ways to reduce stress through alternatives like breathing, imagery, recreational therapy, massage, Reiki and all sorts of non pharmocological methods. Hope things improve.

Sherri

[Fr Pat]

     Some of the anti-rejection drugs have psychological as well as physical side-effects. It is important the the follow-up doctors be aware of the recipient's mental/emotional state and not just the "numbers" from the tests. Sometimes the anti-rejection drugs can be adjusted or changed if they are tending to produce depression or other emotional difficulties.
      Fr. Pat

[jatopa]

Thank you for sharing all of your thoughts and experiences.  In the pre op meetings, we brought up his concerns and they were addressed by the nephrologist and surgeon.  The surgeon spoke well when he said: " You are standing on a cliff.  Could you get closer to the edge before falling off?  Probably, but we don't know how much closer, and we don't want to watch you fall."

Life is full of risks, and there are times when you just have to trust the experts whose help you have sought.  Getting close to countdown, I just have to hope and trust he will feel better a month or so after surgery than he does now. 

[jatopa]

Happy to report that all went very well for both of us.  My brother is surprised at how much better he does feel now. His creatinine was 1.2 when he was discharged from hospital.  It may go up a bit before stabilizing, but still, a victory to be relished.  He is still locked in to frequent visits to the transplant center, but those will decrease in number over the next few months. 

It is such a relief to have the surgery behind us, and both of us doing very, very well!   Cheers!