Kidney Transplant question

By Beth75
Posted July 15, 2008 at 1:20 pm · 17 replies
In Adults with nephrotic syndrome

I was wondering, if you do have FSGS it is pretty much a Kidney transplant down the road? If so, do they do transplants before you need dialysis or is that something that happens after?

What happens after a kidney transplant, do you need to take drugs the rest of your life, do many people's bodies reject the kidneys? Can people become pregnant?

One thing I am thinking is that if I actually do have FSGS and have a donor would it be best just to get the transplant? (this may be a really stupid question, but I may be having my colon removed if my last two drug options dont keep me in remission, I know there are huge differences but that is why my train of thought went there).

Just trying to wrap my head around all of this. Thanks.

17 replies

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By carrie63
Posted July 16, 2008 at 4:34 am

Beth, I am absolutely no expert - and I'm in the UK, which may do things differently - but my daughter has FSGS so I have looked in to this. I'm hoping other people will contradict me if I've got it all wrong! This is what I think I know: every case of FSGS is different. It may or may not lead to transplant - some presentations make transplant more likely but no-one can tell you for sure. Some nephs - like my daughter's - recommend transplant as soon as the kidneys start to fail, others believe a period of dialysis my actually benefit FSGS patients (there's some controversial evidence that it may make FSGS less likely to recur in the new kidney - which happens about 30% of the time I think). They're making good progress on the recurrance problem but it may happen. Yes, drugs are necessary for the rest of a transplant patients life, but people tell me it is really manageable. No-one in this country would consider removing a kidney that was still functioning OK. May be different elsewhere. Rejection these days is less of a problem than it was but always a possibility. Pregnancy with FSGS is always challenging but possible. After transplant it's possible too. It all, of course, depends on the individuals state of health. I too am trying to wrap my head round all this. Apologies if I've got anything slightly wrong. Good luck and take care. Sarah.

By Beth75
Posted July 16, 2008 at 10:54 am

Sarah,

Thanks so much, you explained it very well in a way I can understand.

I am sorry that your daughter has FSGS, but she is very lucky to have you as a Mom, you know what you are talking about and seem prepared as much as you can be.

Thanks again!
Beth

By fsgsblahs
Posted July 17, 2008 at 7:57 am

Beth-

From what I have been told, if you have the 'tip leasion' variant of FSGS, it doesn't usually (or always) lead to ESRD. I have the NOS variant, so mine will. Due to the rejection issues, I have seriously questioned even thinking about a trasnplant. For me, I don't see the point in ruining a perfectly good kidney, if it is probable that FSGS can come back within hours. I spoke to the neph about this last week and the problem is, you don;t know if you will have recurrence until you get a transplant...go figure. They said to try it at least once, but I am still thinking.

My first appt. after my biopsy was to tell me that I had this kidney 'funk' and that the goal is to tranpslant before I would need to go on dialysis. Pretty much they said "you are a dead duck, so you will have to get a transplant" .....at least that was all my warped mind could comprehend! lol

You should check out ihatedialysis.com. There are a lot of people on there with FSGS and I know of one who has had recurrence twice and is on the list for a third go around. I know that they say it is a 30% chance of recurrence, but I sure see a lot of people that it happens to and only a few that have been successful. On the other hand, we probably only hear from the ones who do have problems, because the successful ones are not hanging out on kidney support/ forum sites anymore. Kind of like bad news travels much faster than good news...

Since you have such a good neph, ask him all of these questions!! Good luck!

By cks689
Posted July 31, 2008 at 1:17 am

Beth, I was diagnosed with FSGS in 2003 with 15% kidney function and I was told to prepare and start looking for a donor. I tried my best to avoid dialysis as long as I can because I did not want to go through it. I believe dialysis makes you feel weak. I felt blessed because when my nehprologist was pushing dialysis, the transplant institute called me up one Saturday afternoon at home to tell me I may have a possible donor. This was on October 13, 2007. From October 31, 2003 when I was diagnosed to October 13, 2007, I was still quite active and still able to go to work everyday although I was feeling the fatigue all the time. I had the transplant and was back to work February of 2008.
Now I feel normal again and I thank God everyday for His blessings. Of course, I feel some discomforts once in awhile from taking several medications like Neoral, and Myfortic. I am also taking 2 mgs of Prednisone due to my insistence. I refused to take 10 mgs. after taking 25mgs for 3 months after the transplant. I am also taking Metropolol and Bactrim. My co-worker Betty told me "Cynthia you've gone through a lot of pain and suffering". You know, I feel that my very positive attitude and my strong faith in God had really made things easier for me. It seemed that I did not really suffer too much and did not really felt a lot of pain. I wish you the best as you face your own challenges in dealing with FSGS and please be strong and believe that God is real and He will be with you always if you accept Him.

By BridgetL078
Posted July 31, 2008 at 3:35 am

I was diagnosed with FSGS in 2000 and after trying all the drugs available at the time there came a point when we ran out of options and knew that a transplant would be in my future. My dad offered to be my donor so we started the testing process. While he was being evaluated I reached the point of needing to be on dialysis but was only on it for about 3 months before we did the transplant.
After the transplant I had to start the immunesupression meds right away and was diligent about taking time at the right time and never had a problem with rejection. I did start to see signs of the FSGS though right away. I suffered alot of complications and was back on dialysis within 8 mths. Only at that point when I stopped taking the drugs did I started to reject the kidney and had to have it removed. A year later I was transplanted again and that one lasted about 16 mths (thanks largely to plasmapherisis weekly). Once the FSGS started to recur I started dialysis again and that was over 2 years ago. I have been doing well and was once again weekend off the immune suppressing drugs. This time they did it slowly enough that I have not had any problems with rejection.
So you can get a transplant before even starting dialysis and yes you will need to take drugs forever but its not that bad. There are some clinics and doctors that are working on low dose protocols where you dont have to take such large amounts and can eventually be on only a few or non at all.
I have also been told pregnancy is absolutely still an option post-transplant. I was concerned about that considering I had my first transplant at 20. I know it would probably be a bit harder the body because you would only have one kidney but its not out of the question.
If you have anything you would like to ask me about my experience I would love to talk.

By sk1
Posted July 31, 2008 at 7:51 am

Beth, everyone is different. But i definately agree with fsgsblahs as far as wasting a perfectly good kidney. She is full of great research tips. (i can't concentrate long enough anymore) but i did alot of research in the past and so did my 27 year old daughter. She is all about giving me a kidney. When i reached stage 4 my neph had me a piece of photo copied paper "getting ready for hemo-dyalisis". Things to eat and not eat. There is also a web site. If i can find it again i will let you know. It's a talking site. 2 nephs talking about fsgs and how ultimately you end up with kidney failure. Anyway, my daughters are not matches. But what she found out a few years ago is that you can get to the top of the list much quicker by getting involved in this program where you find a family member that is a match for you and you are a match for them. You give them your kidney and they give theirs. Actually i just saw a show about this on the news. They did it at Hopkins and everyone is doing wonderful. They are now all the best of friends. I won't allow my daughter to do this. The chances of fsgs returning are to great in my opinion. I would feel guilty taking my childs kidney or anyone elses for that matter. A kidney is the gift of life. I would much rather see a kidney given to someone that has a better chance of keeping it for a long time.

I'm sure everyone has their own thoughts on this subject, but this is mine. If i wasted a perfectly good kidney i could never forgive myself. That's just the way i think. Some times i wish i didn't, but i can't change that about myself.

On a positive note...hopefully in the very near future if not a cure then a medication will be found to either reverse or control this disease without all of the bad side effects.

Take care Beth and i believe with your positive outlook you will be just fine!!!

By Beth75
Posted July 31, 2008 at 10:21 am

Everyone, thank so much for your responses. You have all gone through so much and I hope to stay as positive as you. You give me hope and confidence!

I am hoping I have MCD (early stages of FSGS can look like MCD) but I have not responded well to the drugs and my Neph wants to try Cellcept and then Cyclosporine and if no remission, then another biopsy to see if I have FSGS. At this time I am just trying to mentally prepare myself for anything and to try to understand the different possibilites.

Thank you!

By carrie63
Posted August 1, 2008 at 4:04 am

Beth, hello again. I just wanted to wish you all the best in getting your head round all this. And, while I can't know anything about your particular FSGS, I can assure you that I do know of people who've lived pretty well with FSGS for years, had a transplant and not had FSGS recur (this I admit has always been my biggest worry for my own daughter), had kids, had a great life. I have MS (autoimmune - so I'm sure there's a link) and can't really get out much but me and my daughter are determined to take one day at a time, have as much fun as we can and not fear the future. Let us know how you go. Take care.

By Jennifer4
Posted August 1, 2008 at 2:48 pm

Hi. Both my twin sister and I have FSGS, a form of secondary kidney disease. We are 35, and my sister went into total renal failure one year ago. I am told that I still have about 30% function left. My sister was diagnosed in 2003 with FSGS and was able to sustain a normal life for 5 years. She failed June 2007 and went to PD dialasys last year, and has now changed to Hemo. Your questions about transplant does depend on the disease. If my sister hadn't gotten pregnant and had complications, we would have never known that we had it. Having babies does weaken your kidney function. I had 2 children and the experts said that I would have more than 30% function if I didn't have children. While my sister waits for a kidney, I have no diet restrictions. I take a blood pressure med, a cholesterol med, vitamin d, and a baby aspirin daily. I take calcium 3 times a week. So far so good. Don't be scared. Your best bet...find the answers for yourself. We are our best advocates. Good luck.
Jennifer

By Jennifer4
Posted August 1, 2008 at 2:49 pm

P.S. I don't think they will transplant you until you have less than 12% function. At least that is what we were told.

By fsgsblahs
Posted August 1, 2008 at 10:52 pm

Jennifer-

That is very interesting that they will transplant until 12%. Where I am going, you can be listed at 20; therefore you can be transplanted at that time. I wonder why they wait until you are on/ or so close to dialysis? Here in KY and IN, they want to transplant way before you need dialysis, if at all possible.

While my mother was recovering from her liver transplant at Indiana University, I met some folks from NY, who had left the Boston program for Indiana's. He waited there a very long time, and due to that, he needed 4 organs transplanted. When he got listed at IU, he was transplanted 24 hours later...liver, kidney, pancreas, and & intestine. He is still alive after 4 years and they moved to Indiana shortly after the transplant. I am sure that he was first listed in NY, then Boston, and finally IU.

I wish your sister a speedy transplant and would love to know why she switched from PD to hemo. I am trying to learn as much about that as possible,

By evag
Posted August 2, 2008 at 12:03 pm

why is colon removal an option, how much do you have to to remove. Be blessed

EvaG

By Jennifer4
Posted August 4, 2008 at 1:16 pm

Hello again, Beth. What you say about MA and different states is very interesting. Although I go through Boston right now, I am not in as critical of a state as my sister who goes through Springfield, MA, where the hospitals and resources are even smaller. She didn't really choose Hemo over PD- in fact, she chose PD a year ago because she thought it would fit her life. PD started not working, and therfore, she kept having increase her exchanges at night until she was almost at 11 hours. It was too much. So, hemo takes her out of the house for 4 hours three times a day. She is going at night right now (4-8), but hoping to switch to days once her son starts school at the end of August. I hope you don't need a transaplant, but if you do, it seems like you are in good hands. Best of luck to you.

By Beth75
Posted August 4, 2008 at 3:56 pm

Hi EvaG - "Luckily" colon removal is an option b/c I don't have Chron's (trying to find a silver lining). With ulcerative colitis the disease is limited to my large colon, they can reattach my small colon internally and create a j-pouch (I wont have anything external). However, there are two major surgeries to go through within 6 months of eachother, the stay at home recovery time is approx 4-6 weeks for each surgery and there are plenty of complications, losing fertility is one of them. Not to make surgery sound awful, there are plenty of other things that are worse but........I'd like to hang on to my colon as long as I can. I want a good quality of life and wont keep my colon just to keep it. I hope to spurt out a couple of kids first = )

I am going to see a specialist in Boston for a 2nd opinion my my colitis.

By Gem1979
Posted August 15, 2008 at 7:15 am

Hi Beth, I'm 28 and I live in the UK and was diagnosed with FSGS 8 years ago. I was found to have 50% kidney function at the time so was put on Lisinopril to help minimise the damage. So far I have led a really normal life although I did have a baby last year which has unfortunately damaged my kidneys further, although I'm not yet ready for a transplant. I spoke with my consultant the other day who advised that he believed that a transplant was inevitable and that they would look to transplant before going onto dialysis. Not sure whether this is just the policy where I live but that's what he's planning for the future when the inevitable happens. However, lets hope your situation is better than mine so you don't have all this to worry about. I'll keep my fingers crossed for you.

By Beth75
Posted August 15, 2008 at 9:30 am

Hi Gem,

Sorry to hear that you only have 50% function in your kidneys. Were you spilling protein when you were pregnant? If so, were you on any drugs at the time? What did your Doc's say?

Thank you for your encouragment. I wish you all the best, it must be very difficult w/a child to be dealing with all of this.

Take Care!

Beth

By evag
Posted August 18, 2008 at 1:42 am

God bless you Beth75

EvaG

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