Kidney Transplant question, help!

[SheilaT]

My brother is undergoing kidney transplant surgery (he's been on dialysis for almost four years now due to kidney failure from diabetes) and I'll be flying out to stay with him for a few days as soon as he gets out of the hospital.

He's in his early fifties, never married, retired on disability nearly five years ago when everything went to heck from the diabetes. (He'd ignored the very obvious symptoms for over ten years, so my sympathy for him is somewhat limited.) Since he lives alone and has never had surgery before, he actually thinks that once he gets home from the hospital he'll have no trouble managing on his own. Hah!

Anyway, if anyone here has had experience with kidney transplant surgery and its aftermath, I'd appreciate hearing from you. Either post here of by PM.

Thanks.

SheilaT

[patdem]

1. What are 'obvious' symptoms? Most people are ignorant ...so you

seem harsh in your blame? I am not familiar with the 'obvious' symptoms...and I am sure 80% of the public are not aware of the 'obvious' symptoms? :shrug:

[SheilaT]

6. Constant thirst, unexplained weight loss

are the two biggies and he had them. We, meaning all five of his brothers and sisters, told him in 1989 that we were certain he was diabetic and he of course said no, no, no and refused to get it checked. Yeah, the symptoms were glaringly obvious and I'm not being all that harsh. He's also blind from complications of the diabetes.

Probably the most important thing anyone should be aware of is that any weight loss when you are not trying to lose weight is a bad sign. That's really the main reason a doctor will weigh you every time you make an office visit. There are many disease that first manifest in unexplained weight loss, and diabetes is only one of them. Various cancers are another.

Whenever there's a change in your body you should be paying attention.

[SoCalDem]

2. Actually, once he's released from the hospital

if he can religiously take his anti-rejection meds and has some household help (for the cleaning & cooking), he should be ok.,

I have known two people who had transplants.. The first few weeks were very scary..and the signs of rejection CANNOT be ignored..

Is there anyone near him who can help him out a little??

You might need to talk to his doctor.. maybe they can arrange for a visiting nurse..

[MuseRider]

3. Good luck to both of you.

Unless the surgery has changed since my long ago nursing career I can tell you that he will be quite sore. He will be on lots of meds and have a lot of restrictions for a while, maybe the rest of his life. I do know of one woman who did so well that she was only on minimal meds after a year or so. My info is old so I hate to say more than this. Good luck.

[mitchtv]

4. I have had a liver transplant

Twice. He should be able to do most things. He should not lift anything over 5 or 10 lbs for a while. and may need to be monitored for BP and consistncy with meds. housework should be limited until steri strips are out at least and long periods on his feet should be limiited . But yeah,with a complication free transplant, he will do fine, phyisically.

[demgrrrll]

5. With his permission talk with the social worker at the dialysis unit.

Most states are required to have a licensed social worker
on site and he or she would know what kind of services would
be available in his state post transplant. Some states have
good state renal programs, sometimes there is help available
from AKF or NKF or the Dessner fund. The programs vary from state to state, however home health care is an option if there is a skilled need.
Many people do very well post transplant, he may have few needs but it is always good to make contingency plans.

[SheilaT]

7. Thanks for all the advice.

He does have friends out there who've been helping him out in many ways. He's been unable to drive for five years because the retinal hemorrhages have left him quite blind. But the kind of intense care he'll need for a week or so is almost too much to ask of them.

He's had someone in cleaning his place for years now. Luckily it's quite small. He's never been married, and he's the classic example of a never-married man who doesn't really pay attention to things -- with all due respect to the never-marrieds here on the board.

The essential worry is that he's in Tucson, Arizona, and I'm in Kansas. The rest of the siblings are also here or in the DC area, and I'm the only one who is free to go out on such short notice as this.

I'm glad to do so, and even gladder of the internet (Thank you, Al Gore!) for making it easy for me to get cheap flights, hotel, and car.

Having had major surgery twice myself (C-sections for both my babies) I know that it's difficult to get around after any kind of major surgery. With luck he'll bounce back easily. One thing in his favor, is he is not a complainer. He's actually been amazingly cheerful ever since his vision started to deteriorate and he went from being on his own, working, and independent, to unable to work or drive inside of three months, and then on kidney dialysis six months after that. The dialysis is very limiting, since it takes place three times a week and consumes a good part of the day. I don't know if I'd be as good natured about all that if it happened to me.

[Capn Sunshine]

8. My mom in law just had it done

I can tell you she needed constant attention at first--your bro is in a fantasy world if he thinks he can manage on his own. You will have to hire an at home nurse if there is no one in the family to do it. After a couple of months she was good as new and like her old self though so in that sense its a short recovery curve.

KEY is the meds and taking them at the same time daily; men seem to have a problem with this aspect.

[SheilaT]

9. I have to smile.

You're right about my brother being in a fantasy world. It's good that he's not a complainer, but sometimes he has no clue. It bothers all of us a lot that he's so far away, but he's lived there since he was 12 (he's 54 now) and we'd like to persuade him to be closer to either of the two groups of siblings, but I seriously doubt that will happen. He does have a number of friends who have stuck with him these past years and they would probably be impossible to replace.

I'll have to hit the ground running when I get out there and see if I can make sure he has all the help he needs before I leave.

[SheilaT]

10. Update:

My brother didn't get the transplant after all. He got to the hospital, and the donor had died of brain cancer, and when they looked very carefully at the kidney, it apparently had some cancer cells, so wasn't suitable. He's very depressed about this. His blood type is B+, and apparently is sufficiently difficult to match, that all last year not a single transplant was done of type B blood.

I'm still going out there next week. I'm committed to pay for both the plane tickets and hotel, so I may as well. Haven't been out in three years, so it's about time.
SheilaT

[greatauntoftriplets]

11. I am so sorry to hear that, SheilaT.

Kidney disease is terrible. Best of luck to your brother and you.

SheilaK.

[mitchtv]

12. not to worry

I had several false alarms before the last one. It was a charm.

[Sacajawea]

13. Are you or any of your siblings B+?

I know that this is an extremely radical solution, but I have read numerous newspaper stories about siblings (and even living strangers) donating a kidney to someone, instead of having the person in need of the kidney being kept waiting indefinitely on a waiting list for a kidney from a deceased person.

As I said above, it's a radical solution, but at least here in NY I've heard of it occurring more and more frequently. If I were the same blood type as my sister and she needed a kidney (despite the fact that she's never really been particularly fond of me), I would give it to her without a second thought. Perhaps you could approach some of his friends in AZ and sort of broach this subject (i.e., of being a living donor). But probably it would be more likely if one of his siblings (or perhaps even a niece or nephew who was old enough and willing to make such a commitment) would have the type B+ blood you need. But perhaps you've already considered this and it's not feasible for whatever reason.

Good luck to you and your brother. I hope for the best, of course.

Ronni

[Catherine Vincent]

15. Sorry about your brother. I can only imagine how he feels.

I have a sister that is on dialysis too and is waiting on a kidney. She has been on dialysis for about 5 years. No diabetes just bad kidneys. The same with me too. I found out a few years ago my kidney function has declined. Apparently this runs in my family although both by parents are ok. I am still hanging on to my 15% kidney function but I am trying to cope with the fact that I, too, will need dialysis soon and my doctors advised me to be on the list for a kidney donor.

That was good of you to volunteer to go and take care of your brother. Take care.

[Cleita]

14. My husband is on dialysis and

if there is anything I learned about kidney disease is to monitor blood pressure religiously and that means once a day and even more often if things aren't right. I think this might be the best indicator as to his progress. The digital BP monitors are easy to use.

Good luck and I hope it's a success for him. It will make such a difference in his life from dialysis as long as he takes care of himself.

[SheilaT]

16. Thanks again to everyone.

At least one of my sisters is B+, perhaps the other one also. I'm O+, as are the two other brothers.

None of us are willing to donate to him. It sounds cruel, I know, because I, too, have read those stories, even the ones of people simply deciding out of a resevoir of goodness I certainly don't have, to donate a kidney to someone.

I am a donor upon my death. I want everything usable harvested from me so that others can benefit. But I'm not willing to be a living donor.

DU is great! It's somewhat heartening to read accounts from others that they, or someone close to them has had a transplant or is having dialysis.

Dialysis is the most amazing lifesaver. I recall when it was new, and there were a limited number of machines, and committees had to decide who could get it and who couldn't. Now, I believe, everyone who needs it gets it.