Caregiver has questions!

[pelagia]

I need some guidance!  My husband's transplant is scheduled for May 14th.  I have been reading various threads in this section for the last couple of hours and they provide insight as to what folks experience after transplant.  But, the more I read the more I realize how much I don't know.  It's starting to feel overwhelming .  I know that his living donor is same blood type (O) and a "good match" chosen from multiple matches, but I have no clue how many antigens(?) match. I also read about shakes and tremors from drug reactions after the transplant. What else should I know?  Can anyone recommend any useful websites?  The transplant clinic gave us a booklet, but the information is very general.  We also watched a presentation, but again, that was very general.  Any suggestions you can provide will be appreciated.

[paddbear0000]

Sorry, I can't offer any help, but I wanted to bump this since no one has answered yet!   

[Romona]

It is confusing at first. The medications are rough until the levels get where they should be. The side effects are scary, but they become manageable. It is major surgery, so it does take a little time. Relax, both of you will do fine. The Transplant coordinators are very helpful and will guide you.

[vandie]

It's not that difficult.   You follow all of the directions when you leave the hospital.   You take the meds at the same time every day.  I use my cell phone's alarm at 8:00 a.m. and 8:00 p.m.  I haven't missed a dose in 9 months.  Yes, there are side effects from the meds, tremors from Prograf and lots of tummy issues from everything else.  Believe me when I say they are a small price to pay for a working kidney. 

Romona is right about meds leveling off.  It took me six months before I finally felt tip top. 

When your hubby starts to feel like he can take on the world, that's when he needs to rest some more.  Nothing worse than a back step when you are healing and taking care of a new kidney.

As for antigen match, really it doesn't matter.  If he has a live donor and you have a date set, focus on the transplant.

You have found the best board on the net regarding anything kidney.  Do searches, ask more questions.  This site rocks. You will do great.  Your hubby is lucky to have you.

[okarol]

You might want to read some of the info in the forum at http://www.transplantbuddies.org

[willieandwinnie]

Hi pelagia. I am also my husbands caregiver and our phone call came in the middle of the night and I could only think of 2 questions to ask the coordinator. Has the kidney been tested for AIDS and Hep. We got one of those booklets when Len first got listed and they are kind of a joke in our book. Write down all your questions and ask the coordinator or the surgeon or better yet, US. All the information you are receiving is right on the mark. The first year is the hardest as they try to adjust medications and the body adjust to the new kidney. There is no questions that are stupid questions. Something that is important to ask at the time of surgery is he getting any kind of induction therapy and what is it? You might also ask about CMV virus, is your husband positive or negative and also the donors status. Make sure you take a pillow for him, my husband appreciated that more then anything. It is also important that he gets up as soon as possible after surgery and walks, not exactly easy when he'll be hooked up to all kinds of stuff and a cath but very important. He'll also need to make sure he drinks enough, our clinic gave us these input/output charts they we had to keep everyday. He'll be on a lot of medications to start with but at 3 months they will start backing off some of them. I don't want to overwhelm you anymore then you are already, but we are here and happy to answer any questions you might have. Take care and I'll be praying for you.  

[stauffenberg]

After my transplant I was on an initial immunosuppressive dose of 200 mg cyclosporine b.i.d,, 30 mg prednisone b.i.d., and 500 mg cellcept b.i.d.  Because of the cyclosporine, I had very slight hand tremors for brief periods each day, but nothing serious enough to interfere with writing or typing.  The very high dose of prednosine made me temperamental and bloated, but since that dose was quickly tapered to 2.5 mg b'i'd., the irriation and moon faced look did not last for long.  The cyclosporine has since been reduced to 175 mg b.i.d., so there are no more tremors.

The main problem immediately after the transplant was the intense schedule of follow-up appointments, which required me to have blood tests at the hospital twice a week, plus numerous meetings with the nephrologist.  Despite all of that, I was able to return to work two weeks after the transplant and hardly missed any official duties at work.

[pelagia]

All of this is helpful - both in terms of getting familiar with the details and for the support .   I went to the transplant buddies site and did some reading and that linked me through to a few more places like kidney.org (National Kidney Foundation).  I am relieved to hear that the tremors may not be a major side effect.  My husband plays guitar for a living and he is very sensitive about his hands.

I will ask about the induction.  Do they do that for most transplant recipients, or is that a procedure reserved for high risk patients?  I could only find medical articles on the procedure.

The CMV - is that herpes?  I don't think he has that, but we will ask.

Stauffenberg - it was great to hear that you went back to work so quickly. 

My husband has not been working for months now.  He is an acoustic guitarist and makes his living traveling around the country and wider world performing.  Since he was on the verge of needing dialysis for months, he really couldn't book any jobs because he couldn't know for sure if he could be there.  Now he's headed for the transplant and has hopes of being able to perform shows locally pretty soon after that.  The clinic told him that he can't fly anywhere for at least 6 months, so we will be driving to a music festival in Kansas in September.  And I guess developing countries are out for good.

Overall it's been a heck of a month - everything is happening so fast.  But, I am happy to have found this community.  And of course we feel incredibly blessed that my brother-in-law (my sister's husband) wants to be a donor and is a good match.

[Romona]

I had my Transplant at UPMC in Pittsburgh. I think Induction Therapy is used for everyone there. They also limit the use of steroids. When I have tremors now, it is barely noticeable. It is not a constant thing. I hope your husband can get back to doing what he loves soon.

[okarol]

My daughter had her transplant a little over a year ago. She has a tiny tremor in her left hand and it's not noticeable until the surgeon asks her to hold her hands out straight. She was only on steroids (prednisone) for the first 3 days following the transplant and hasn't had any side effects from the immunosuppressants.
She's been doing great so far. Three years on dialysis was tough for her, and she's enjoying having a normal life!

[stauffenberg]

Induction treatment for transplant is rarely used since it employs extremely toxic anti-CD molecules, which increase the patient's later risk for developing cancer, especially lymphomas.  It is usually reserved for patients with a high antibody titre to other people's kidneys, typically after they have already had one or two transplants.

A very high percentage of the world's population, about 80%, has been exposed at some point in their lives to CMV.  This is just what the transplant team wants, since it means the recipient has already formed anti-bodies to CMV, so when he gets a new kidney from someone else who has been infected with CMV, he will have resistance to the disease.  The problem occurs when the recipient of the transplant is one of those rare individuals who has never been exposed to CMV, and he then gets a kidney from someone who has been.  This can set off a major CMV infection in the immunosuppressed patient, which in some cases leads to death.  Fortunately, if the transplant team finds that the recipient has not been infected with CMV, they will treat him prophylactically with valcyclovir or similar drugs to reduce the likelihood of infection -- though this cannot be guaranteed to be effective.

The only reason that flying post-transplant is contra-indicated is that the transplant team wants to monitor the patient intensively for the first three months post-transplant in order to be able to treat acute rejection immediately if it appears.  Flying per se is not dangerous.  Three days after my transplant I flew on a 26-hour flight with no problems.