FSGS girl

[waghappy]

I have FSGS and would like to get kidney transplant. Anyone with FSGS gotten transplant and if so does FSGS come back in new kindney?

[Redoralive]

I cannot speak for FSGS, but I have an immune condition called Scleroderma and I had a successful transplant last December. The chances of my immune system attacking this kidney and causing renal failure again are there, but I have regular checkups, I had a treatment called ATG prior to transplant to completely wipe my immune system out, and the tablets I take everyday got adjusted to make sure that doesn't happen.

I admittedly didn't know what FSGS was so I've had a look and it seems you'd be in a similar boat. You are entitled to have a transplant and the doctors are always careful to keep an eye on you, but if you go into failure and recieve a kidney there is a chance your immune syystem may attack the glomeruli of the new kidney.

But best advice is if you're not sure, consult with your doctor about the concerns.

[blackkat2]

Hi, FSGS girl, I have what my doctors call primary FSGS (where FSGS is not the result of another disease), which has always been fairly slow-progressing. I had a transplant 2.5 years ago. So far so good: no sign that the new kidney is being damaged by the disease. But my transplant team always stressed that "transplantation is not a cure"--it does not rid you of the disease, so the possibility of recurrence is always there.

[waghappy in reply to blackkat2]

Hi also have primary FSGS had bad relapse in May had to go on dialysis. Having problems right now trying to get hemoglobin to go up was in hospital for transfusion few weeks go as it dropped to 6.2. I was diagnosed one and half year ago, probably had it for years unknowingly. I was on prednisone which helped me in remission, but can't take anymore because I have osteoporosis, nephrologist said another round would kill my bones, and I had spine surgery. Were you on dialysis before transplant? What did your GFR drop to before transplant. I have to go to St. Barnabas and see if I qualify for transplant.I would have to get on list, but I understand a living donor is best, especially because I am 71 yrs old. So good too hear your transplant went well. Thanks for your reply and hope to hear from you again, very interested in your transplant

[blackkat2 in reply to waghappy]

Hi, waghappy (sorry I got your user name wrong last time). I was on peritoneal dialysis for a year before my transplant. Before that it was just a long slow progression of the FSGS. I think my GFR was down to about 7 by the time I had the transplant. Good luck!

[waghappy in reply to blackkat2]

Yes my GFR hit 8. Did you like PD dialysis? I really don't like in center dialysis. I am also thinking go hemodialysis at home, but I am single and a lot to learn. Did you do incenter dialysis? Have to go to St. Barnabas two see if I am candidate for transplant.I have to get hemoglobin up though which I am having problems with.

[blackkat2 in reply to waghappy]

Can't say I liked PD, but it did the trick. (Lots of supplies to be stored.) That was about 3 years ago and I understand they've made some great strides even in that short time. You have to have a tube put into your abdomen, and you have to be really careful about infection. (I got infected twice--no fun.) Have heard good things about home hemo but never tried it (at the time, it wasn't approved in my state). And never did in-center dialysis. I'd suggest definitely look into transplant.

[waghappy in reply to blackkat2]

We’re you able to do dialysis right after infection ? That is what concerns me about PD. I am petite with a small stomach. Could I fit all that liquid in stomach? Were you doing at night? I read a little about it

[blackkat2 in reply to waghappy]

If I remember correctly, I didn't stop the PD for very long even with an infection (otherwise, I would have died, of course), and since I didn't have a fistula, I couldn't do hemo. I may have had to do manual exchanges temporarily, laced with antibiotics. As for the amount, I'm fairly small, too, so the normal amount was uncomfortable for sleeping. Instead of 4 normal "exchanges" per night, I did six smaller ones.

[waghappy in reply to blackkat2]

Thanks for quick reply. Good to know you can do more smaller exchanges. I did get a fistula put in as my vascular surgeon said I was so thin I would be better with fistula but could always change. Very undecided right now. Were you uncomfortable for sleeping because of stomach swelling do much? My nephrologist mentioned P D but was not sure if I wanted all that fluid in stomach. I live by myself so it is a lot to learn alone. Did you find it easy? I feel a little alone during all this! I am at dialysis center right now for treatment.

[blackkat2 in reply to waghappy]

The whole thing is a little isolating. There's no clinic community with PD. And yes, a lot to learn, several weeks of training, lots of supplies to deal with. Yes, sometimes the fluid was uncomfortable (my sleep wasn't good in general, but that's also part of the disease). There are definitely pros and cons to each kind of dialysis. Thankfully, they're making strides in treatments all the time!

[Hidden]

I have fsgs and got a transplant in 2008 and my doctors warned me that the fsgs could happen again. 7 and 1/2 years later it did reoccur. I had to get a second transplant. My first transplant was from my brother, a living donor, and they said because our DNA was so close that the fsgs thought it was my original kidneys and attacked them. I got my second Transplant from a cadaver donor and it will be 3 and 1/2 years in August. After the first transplant I still had problems with anemia, so that could have been a sign of the fsgs returning. With my second transplant, no anemia and my creatine is great. It is always unknown how it will go in a transplant, but I wouldn't trade all those years I had with the first transplant and I feel so much healthier now than I ever have! I say go for it because if all goes well, you have a much healthier life after transplant! Good luck!😁

[waghappy in reply to Hidden]

Thanks so m much for your reply. One of nurses at dialysis center said I couldn't,t get transplant until hemoglobin went up, don't know if this is true, but I would think the reason for transplant would to be FSGS in kidney is causing low hemoglobin. Were you on dialysis before transplant? What did your GFR drop to before transplant. I was doing ok on prednisone but had bad relapse of this May was hospitalized for high potassium, and was put on dialysis in hospital. I can't take prednisone because of osteoporosis. I don't have a living donor yet. My twin brother dies almost two year ago and my nieces o not seem interested in donating, busy lives. How long did you have to wait for cadaver donor? Were you on dialysis in between? Would love to hear from you

[Hidden in reply to waghappy]

I was on PD for about a year before the second transplant. Because I had insurance issues before the second transplant, I wasn't listed until late into that year of PD and received a transplant less than three months later. I'm not sure what my gfr was before surgery but it probably wasn't great. My suggestion is to get listed for transplant and your transplant team can tell you what you need to do to get listed. Good luck!😁

[waghappy in reply to Hidden]

Thanks for response. Were you comfortable with PD, is the fluid retention bad in stomach because of sugar in fluid you put in stomach. I did get fistula but PD is still option. I read it can get infected easily, so will take my time deciding. I hope to get appointment in August to get evaluated for transplant. I have to go to St. Barnarbas in NJ for about 4 hr appointment. Social worker said end of August soonest. When you did PD did you put on a lot of weight, I know you have to put a lot of fluid in stomach being small don't want to blow up(just kidding).Did you have deceased donor or live? My nephrologist said a living donor would be better because of my age 71. Thanks so much, feeling overwhelmed!!It is so good to talk to people who have been through this.

[WYOAnne NKF Ambassador]

I have been diagnosed with FSGS in 1992 and had a transplant from a deceased donor in 1999. So, it has been 20+ years since my transplant. My creatinine is stable at 0.8-1.0. I am not diabetic. As of this date, my transplant does not have FSGS. I know they told me that there was a chance that my transplant could also get FSGS, but 20 years later there is no sign of it.

[waghappy in reply to WYOAnne]

I was diagnosed couple years ago probably had it longer not a lot of symptoms.

That is great your new kidney is doing well with no occurrence go FSGS. I am hoping to to transplant center to be evaluated. Were you on dialysis before transplant? Right now I am having hard time getting hemoglobin to go up, Epogen does not seem to be working.That could make not eligible for transplant, but also reason for one with kidney keeping my hemoglobin low. What is your take on that? How long did you have to wait for deceased donor kidney? I am 71 so time is not on my side.I have been in center dialysis for two months and it is veery hard on my body, feel terrible after treatment. Were you on dialysis before transplant?

[WYOAnne NKF Ambassador in reply to waghappy]

I really lucked out and was on Hemo for 2 months when I got called.

[maximina]

Hello my 36 year old son was diagnosed with Primary FSGS in 2014. Presently, he is on the UNOS list waiting for a kidney donor. Started PD dialysis in April 2019 but developed 2 hernias and just had surgery a week ago, he is on hemodialysis now until it heals and he hopes to go back on PD. We were told by the Neph that there is a 40-50% chance that the FSGS may return on the transplanted kidney. Neph also mentioned that they really keep an eye on the transplanted patient and usually a plasmapheresis is done in order to protect the new transplanted kidney. My son says that he is willing to take that chance, and is ready to receive a transplanted kidney when is available.

[waghappy in reply to maximina]

Hi I was diagnosed about two yrs ago. I am also willing to take chance FSGS would come back in new kidney. Is your son on in center hemodialysis or home? I am on in center hemorrhages and it wipes me out after treatment. I have only been on dialysis for two months and still weighing options. I have to go to transplant center to be evaluated then get on list. I am afraid to go on PD because of infections and hernias. Did your son like PD? I know in center dialysis makes me feel wiped out. I live by myself so some options could be difficult. I am suffering from low hemoglobin and Epogen so far is not helping. Does your son have anemia? Would love to hear from you

[maximina in reply to waghappy]

My son started PD in April 2019 at home and it was hard at the beginning, but then he got used to it. 8 hour PD treatment every night. He really felt comfortable with it after a few months. Then he developed two hernias and had surgery last Friday. He had to have a jugular catheter placed for the hemodialysis at a center . He says that it wipes him out, that he would not be able to do that for ever (hemo).........He has anemia, but receives injection of PROCRIT every two weeks plus he takes medication (pill form). His hemoglobin is presently at 11.6. His hemoglobin has been as low as 7.5. I keep a chart of all his stats so that we can keep an eye on his values. Has lab every month and is seen by the Neph, dietitian, dialysis nurse and psychologist (evaluates him) every month. He was diagnosed with Primary FSGS after he had a real bad flu. They had all these tests done on him to find out if it was Primary or Secondary. All tests came back negative, he was diagnosed through a biopsy and it turned out to be IDIOPATHIC (UNKNOWN CAUSE) FSGS.

[waghappy in reply to maximina]

I also have primary FSGS. My hemoglobin is low now 7.2 and Epogen get at dialysis center three times a week is not working. I am going to se hematologist this Friday. I hope they can help me, as the fatigue is terrible with low hemoglobin. I also have a jugglercathereter, but got a fistular put in two weeks ago, still healing.I was just diagnoseda couple years ago but pro ably had it years with not a lot of symptoms. I like your son would like a transplant, but time is not on my side. I am 71. I am also considering PD. Right now new to dialysis, so keeping options open. How long did it take for Procrit to raise sons hemoglobin? my appetite is also bad with Low hemoglobin. Was your sons appetite b ad with low hemoglobin?

[maximina in reply to waghappy]

My son had low appetite and was always tired with low hemoglobin. PROCRIT helped after the 2nd injection (treatment was every 2 weeks). Like with any other medication there is also side effects. We had to go to emergency the first time because his blood pressure raised up, but was controlled. He has not had this episode again. The Procrit is given at the PD Clinic and they monitor his BP once BP reading is OK they discharge him. My son wants to go on PD (home) once he is discharged by the surgeon. He was told that he needs to be completely healed before starting PD again. We hope and pray that there is a donor out there for him. This has been a very difficult journey for all of us. You may write to me at any time. Hope and pray that some day they find a cure for Primary FSGS. Blessings to you waghappy.

[Dotti55]

Yes I gave FSGS and received a transplant. After three years I’m doing wonderfully. I have heard that eventually it does