thoughts on a transplant??

[russ9320]

First on all you should know that I am 28 years old. I was diagnosed with iga when I was 16. I started dialysis in June and am now on home hemo. Also I have intracranial hypertension and a herniated disk in my back. The former from spinal meningitis as an infant and the latter from high school sports and years of manual labor.

Well my question is with me having iga would a transplant really be worth it or will the iga destroy the new one??

I am kicking around the idea of waiting for a transplant until I stop urinating. Is that a good idea?? I urinate about 5 times a day. I seem to urinate more now then when i was in my teens.

Please any thoughts would be appreciated. The dialysis clinic isn't much help because most people on dialysis there are in their 60s or older. Thanks.

[coravh]

I have a friend who was on home hemo and did quite well. Apparently home hemo is just about as good as a transplant (statistically), but you do have more freedom to do things like travel. My friend was quite active on the home hemo and biked a lot but his biking capabilities went from about 25 - 30 miles in the summer to over 50 once he had the transplant. From what I understand (I could be wrong) things like Iga and PKD do not affect the new kidney typically. But if they do, you still often get a good  life out of the graft, even if it does get damaged. It's like with diabetes. D can kill your kidneys and will continue to damage the new graft, but it is a long slow process and won't prevent you from getting the transplant. And often other factors will cause the graft failure (after decades) rather than the original disease.

The healthier you are before a transplant, the better. I don't really see why you would use urinating as a cut off to decide whether or not to get the surgery. It won't make any difference in the long run really and will just keep you on the machine longer.

There are pros and cons to both home hemo and transplant. As I said, transplant does allow you more freedom in your life, but just like dialysis choice, it is how you feel personally. I am now 11 years post transplant and am doing very well. Yes, there are potential side effects to the drugs. The list is actually quite scary. But the truth is that the majority of the side effects do not happen. And if they do, they will switch your drug. The only side effect I have that really affects me is continued anemia. So I take some aranesp and I'm fine.

My gut is to say go for it. My friend did not regret the transplant - he did a couple of centuries on  his bike this summer.

[cattlekid]

Another somewhat young one here.  Diagnosed with IgA when I was 30 (who knows how long I had had it at that point), went on dialysis at 40 and got a transplant at 42.  There was never a question as to whether I would pursue transplant, I set up my initial transplant center intake appointment from my hospital bed the day after I got my chest catheter placed (I had to start dialysis on an emergency basis). 

I was also told that IgA can attack the new kidney.  But I look at it this way....who knows how long I had IgA before it was diagnosed?  Now, because I am followed much more closely, as soon as my new kidney starts to go south (if it does), then I can start all of the precautions (diet, etc.) to keep the new kidney kicking as long as it can.  And even if the new kidney does give out, at least I will have had many dialysis-free years in between.

[jeannea]

Have you considered going and talking with the people at the transplant center? You don't have to commit either way yet. Gather information, listen to what they say. Even if you get on the list, it will probably be a few years until a match is available.

I don't know much about your disease. I do know that my first transplant eventually failed. My second transplant has occasional problems. I'm still glad I did it. Give yourself time and keep doing your research. You're still young. (I was 28 for my first one.) A transplant could make you feel great.

[russ9320]

I am using urinating as a transplant point because my medicine for my other conditions cause horrible dry mouth and as long as I am urinating I can drink what I want. I have mentioned twice to my center.that I want to talk to a transplant doc but no reply.

[Ninanna]

I am 29, and was diagnosed with IgA when I was 22.  It's only really been in the last year that my function finally dropped below 20%.  For me whether or not to get a transplant wasn't even really a question.  I see it as something that is much less restrictive than dialysis and will allow me to have a better quality of life.

Often IgA will start up in the new kidney but not always.  However I was told this is almost never a concern because it is a slow progressing disease, and that I would lose the kidney to chronic rejection long before I did to IgA.

If it's something you think you want to do, don't wait.  Especially if you don't have a live donor.  Waiting on the list can take years, so you might as well start waiting as soon as possible.  You can always change your mind later if you decide it's not for you and have yourself remove from the list.

Also has everyone else has said, the healthier you are at the time of the transplant, the better.  Let the doctors counsel you on if your other conditions will be a problem or not.

[russ9320]

The other problem is I smoke... only have for 6 years. I know I need to quit but the stress is too much right now. That is my only vice high and mt dew. Midas has volunteered as a living donor but he is a real bad closet smoker. Maybe we can both quit for the operation.

[Ninanna]

Smoking is a problem for both of you. They won't let either of you do the surgery unless you have quit for a specified amount of time before the surgery. I'm sure the length of time varies from center to center.

[jeannea]

You do need to quit smoking. Did you know that the amount you smoke affects the amount of immunosuppressive drugs in your system? It can be a real problem for you to get the right dose and protect your kidney. I'm sure it's hard to quit. It has to be. If you need assistance from a stop smoking program, I'm sure your doc could recommend someone.

[sutphendriver]

I have iga, was transplanted in 98 bust lost it in 2008 due to  a medical mistake. Was transplanted again in October.  My new kidney is a 6 antigen match.  Doc told me that iga coming back was not a risk even with this high of a match.  He only worries about iga returning if you get an identical match, twin sibling or such.  I use chewing tobacco, my Dr has no problem with it but have never smoked so I do not know what effects it has.