Got a transplant but FSGS might already be back

[alc1013]

Hey all,
I thought I would update on what's going on. I received my transplant Wed. Aug 27th from a deceased donor at UW Madison. The kidney started working slowly but surely and everything was going good so I was released from the Hospital Sunday the 31st. I have a lot of swelling especially in my legs and left the hospital about 20 lbs heavier than normal (I've actually gained about 5 lbs since being home). We had to go back this last Wed. for a follow up to make sure creatnine was still coming down etc. (it was 3 when I left on Sunday) so we met with the Dr kidney numbers have all continued to improve but they were very concerned about the amount of protein I was spilling already, so much so that I actually had a kidney biopsy that day as they suspect FSGS reoccurrence. We get the results back hopefully today but the plan is that if it is returned I will start Plasmapheresis treatments next week. So I was looking for anyone that has experience or advice that could share if these treatments are similar to dialysis in how you feel etc. Just trying to be prepared while feeling very discouraged. Thanks in advance for any help you can give.

Amy

P.S. I know I don't post much but here is the post to my intro if you want a refresher on who I am
http://ihatedialysis.com/forum/index.php?topic=30716.msg479411#msg479411

[Deanne]

I know how devastating that would be. Have hope though! I spilled protein for a about 3 - 4 months after transplant. They think it was from my native kidneys and/or because I had so much blood in my urine from the stent they put in during surgery. Are either of these a possibility in your case?

[alc1013]

I wish it would be? But the last test it was 4.67 grams or whatever they measure and that had doubled from the last test only 5 days before that. Plus with my other symptoms of high blood pressure, fluid in the legs etc. my hope is dwindling.

[jeannea]

That sounds awful. I don't know much about FSGS. What I do know is the doctors also want your transplant to succeed. They will try to help you. I hope the treatments work.

[MooseMom]

I am so sorry to hear this.  I have FSGS, too, and also got my tx from UW Madison.  I am shocked to hear that FSGS could recur so quickly and so severely.  For how long did you have FSGS before you had to start dialysis?  I'm sorry that I don't have any experience with plasmapheresis.  I hope someone here on IHD can give you some information.

Like jeannea said, they do want your transplant to succeed.  I've had good experiences with UW and hope that you will, too. 

I'd really like to hear what the plan is, once they've made one.  Do let us know, OK?

I know you must be feeling really anxious.  Best wishes to you.   

[Simon Dog]

FSGS sometimes recurs on the operating table before they even close you.  This is determined by massive protein leakage in the new kidney.

Unfortunately, recurrence after primary FSGS is sufficiently common that the odds are that's what's happening.

[MooseMom]

FSGS sometimes recurs on the operating table before they even close you.  This is determined by massive protein leakage in the new kidney.

Unfortunately, recurrence after primary FSGS is sufficiently common that the odds are that's what's happening.

All of us with FSGS know that there is a risk that it will recur after tx, but I had no idea it could happen so quickly!  It's amazing that they don't even know what causes it in the first place.

Alc1013, did UW give you any indication of how much of a risk you in particular would run of recurrence?  FSGS presents itself differently from one patient to the next, so I am wondering if they thought you had a higher risk. 

[alc1013]

I have been very pleased with UW and they seem very proactive and wanting to figure it out and not let it get worse. As far as recurrence I heard the normal percentages that I had read in my research. They told me if it did reoccur that they have experience treating it with plasmapheresis etc.I was diagnosed in '06 and on dialysis in '09 but was likely sped along from a bad cyclosplorine issue so I have no idea how long it would have been without that drug. I held off on a transplant for a long time because of this possibility I did not want to deal with it again and it took awhile for the DRs to convince me to give it a shot. We are still waiting on the biopsy results as I think that will tell them a lot about what's going on and will make the final plans after that. So for now we wait.....

[MooseMom]

Yeah, I had read about your bad experience with cyclosporine and figured that would make it hard to really know how much FSGS on its own contributed to how quickly you went from diagnosis to dialysis.

As SimonDog posted earlier, recurrence does seem to be fairly common, so any good tx center has protocols in place to treat it.  I can understand how recurrence would make you feel wary of tx.  I imagine this is probably traumatic for you, your worst nightmare come true.  I'm really sorry.

Waiting really is the hardest part.  When do you think you might have your biopsy results?

[sheldonp22]

Did they dose you with Rituxamab, IVIG and plasmapheresis  after the transplant? I had my 2nd  transplant on July 19,  2014 and they were extremely aggressive this time around to control my FSGS. First transplant 18 years ago FSGS came back on the operating table and lasted only 1 year. So far no protein and doing very well. They told me they have been having great success with the Rituxamab, even thou they don't know why it seems to work in some FSGS patients. Good luck and keep the faith

[MooseMom]

Did they dose you with Rituxamab, IVIG and plasmapheresis  after the transplant? I had my 2nd  transplant on July 19,  2014 and they were extremely aggressive this time around to control my FSGS. First transplant 18 years ago FSGS came back on the operating table and lasted only 1 year. So far no protein and doing very well. They told me they have been having great success with the Rituxamab, even thou they don't know why it seems to work in some FSGS patients. Good luck and keep the faith

Thanks for posting about your experience with this.  It sounds like there is some hope.  Good luck to you!

[Rerun]

Hope all goes well. 
                         

[alc1013]

We were told we would hear today but nothing yet, this waiting is the worst. I just need to know so we can plan and move on. This is my first transplant so I was not treated for anything besides normal anti rejection post transplant stuff.

[alc1013]

We got the biopsy results back and it was FSGS (Collapsing foot process? is what they said I haven't read the report yet though). So I start plasmapheresis on Wed. and go W, TH & F this week and M, W & F the following 2 weeks so 9 treatments total. I am also am going gluten free as I have read that it does help with FSGS and I'm willing to do what I can to make this work. Glad to have some answers and a plan, just hope it works

[Rerun]

   on the way!

         

[MooseMom]

I am glad you have answers and a plan in place.

I know some people here on IHD have had plasmapheresis but have not really gone into any great detail about what it's like.  If you feel like it, I would be very interested to know more about it and would very much appreciate you posting about your experience....BUT ONLY IF YOU WISH.  For instance, how long does each treatment last, that sort of thing.

Best of luck for tomorrow; I'll be thinking of you.

[Deanne]

I'm sorry. It sounds like they're very on top of it and probably already had a plan for treatment ready to go as soon as they had confirmation. To me, that says they've seen it before and know what to do. Why can't anything ever be easy!?

[alc1013]

I had my first treatment today and your right Moosemom I looked everywhere so I could find out about what a treatment was like, how long etc. and I didn't find much. Anyways they said the treatment time was based on my weight (they used what my dry weight was as my regular weight is very much off due to edema) they were able to use my fistula (had a few problems getting needles in but once they got it running good it was good to go) they used the same needles as dialysis, the machine though was completely different. The blood goes out and spins in this centerfuge (sp?) and the plasma is separated out into this bag in hanging in the back. They replace that with albumin stuff and is brought back in, the treatment was about 1 hr 15 min and I think they processed about 3500 units? (replaced?) afterwards I felt fine totally different from dialysis. The nurse stayed in there the entire time as she had to keep changing the albumin bottles and tracking my blood pressure etc. So overall a pretty easy process. I go back tomorrow and Friday this week then Mon, Wed & Fri for the next 2 weeks.