John's GFR is now at 15 and all his other lab work is looking bad. We were told to notify the neph if his symptoms get any worse. I was wondering what everyone that is or has been at this stage went through. We have prpared ourselves he has already had the fistula placed and we have done all the registration possiable for the dyalisis. We go in two weeks to be evaluated to see if he is a canadaite for transplantation. He has no immediate family that would volunter to donate. Neither does he fill comfrotable asking any of our friends. I have heard of other living donor swaps. Where if one canidate has a donor but that donor does not match that donor can donate to someone else who has a donor but they do not match? Think I explained it right. Has anyone ever done this or know anymore about it?
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complete faliure symptoms? Transplant canadate...Cadavir/living?
- By leigho
- Posted June 15, 2009 at 1:59 pm · 15 replies
- In Adults with FSGS
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- By Boussaar
- Posted June 16, 2009 at 1:57 pm
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Leigho, I do not want to be a spoil sport but my neph pretty much told me to forget transplant when my kidneys shut down. He said too often FSGS would attack the transplanted kidney and I would not be any better off. The day I was scheduled to start dialysis is the day I went home from the hospital. I had gain 50 lbs of fluid and was in really bad shape. The nurses had already prepared me for the temporary port and explained how and where they would put the permanent port. I was so sick it really did not matter at the time. I could not eat and I was so swollen I could not get off the bed without help. The prednisone and cellcept treatments had been started and I received a chemo treatment in my vein and two units of blood. I was suppose to start dialysis on Tuesday, July 3 and that is the day my kidneys decided to go to work. The blood work that was done at 4:00 AM that morning showed a tremendous drop in the creatine and protein levels so the doctor let me go home for a few days to see how I would do. That was two years ago. I am in full remission and have 100% kidney function. I have not taken a lasix in over a year. I do believe in miracles and I will pray for one for you too.
- By leigho
- Posted June 17, 2009 at 8:12 am
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Boussar,
That is amazing I am so happy for you. We have not given up hope and are still praying for a miracle. However, why we wait for that we shall continue to prepare for the worst. Yes we have been told a transplant with an FSGS dx has only a 50/50 chance. With us being in our thirtys and shall we say just begining life. I do beleive we will take that chance given the opportunity. Thank you for your prayers and I will add you to my ever growing list ;)
- By KESMOM
- Posted June 17, 2009 at 11:24 am
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Hi leigho,
My three year old son has FSGS, collapsing variant so I am still pretty new in the research department. I have heard that with FSGS a distant relative or even spouse can donate. They want enough of a match that it won't be regected, but not so much like your own that body attacks again. There are two professional basketball players with FSGS who had successful transplants and went back to the NBA, Alonzo Mourning and Sean Elliot, so FSGS patients can have successful transplants. You are on the right path by praying for a miracle, but also educating yourself. God is not limited to one kind of miracle, he can heal the kidney your husband has, or provide resources for a successful transplant. Keep your faith.
- By magdelena
- Posted June 19, 2009 at 8:31 pm
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Everyone's situation is different. Don't give up hope that a transplant could work. It is true that the FSGS can come back on the new kidney, but then again maybe not.
As far as the donor swap goes, we asked our nephs about that, and they said that usually the reason that people are in the donor swap program is because they aren't able to find donors of their own who match because they have something rare in their blood that makes it harder to match. ( I can't recall what that "rare" element is right now). So unless you had that "rare" element in your blood and would be a match for someone else, the chances of finding someone through the donor swap program that would need your organ (so that your husband could then have their donor's organ) is pretty rare.
However--everything is worth a try!!
- By cks689
- Posted June 22, 2009 at 11:40 am
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Hi, Leigho, I am Cynthia, I was diagnosed with FSGS in October, 2003 for unknown reasons. My kidney function was 15%. After I heard that a kidney transplant was inevitable, I just surrendered everything to out Lord and let Him took care of things and events I have no control and I had absolute faith. I also said if this is your will then thy will be done. I believe in God's great love for us and His ocean of mercy. In October, 2007, I had a kidney transplant with a donated kidney from the Gift of Life. I did not have to go through dialysis. My kidney function then was at 10% and my kidney doctor already wanted me to go on dialysis but I had the transplant before dialysis. Now, my kidney function has been excellent and life is quite normal. Of course, I have to take my daily dose of myfortic, and cylosporine plus metropolol for blood pressure control. My blood pressure as of yesterday was 104/65; will have to call and ask if I need to lower the metropolol as this might be too low. I also have to have a blood test regularly and visit my kidney doctor every 3 months.
Please continue to have FAITH and you might be surprised!! I am looking at the possibility that in 5 to 7 years our scientists might be able to grow kidneys in the lab using our own stems cells and DNAS. With God nothing is impossible. I am sending you my love and prayer that John will be filled with God's love and His healing power.
- By szaluski
- Posted July 3, 2009 at 11:40 am
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My 22 year old daughter FSGS for 4 years was just put on a transplant list. 17% kidney function. WOW! She is OK, I am scared, not scared, sad for her, it is hard to watch your child go through this stuff. I did read about them trying to grow your own kidney in your body.
Cynthia, do you know if you can have children after a transplant? God made the world in 6 days, he can heal our kidneys. I keep waiting for healing. Did anyone every go back up to better kidney fuction?
Boussaar get a different doctor.
Good luck to all, Sharon
- By Jace1983
- Posted July 10, 2009 at 3:42 am
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I have had FSGS my whole life, I went on dialysis (both Hemo and Para) I have all so had a Trans plant in July of 2003. Now it is true that FSGS will affect the Grafted organ, but I fell that a Transplant was the best thing that could have happened to me. The point is that My new Kidney has lasted six years and is still going strong. Just talk to your Docter about it, must kidneys go about 15-20 years before FSGS starts in on them.
- By Jace1983
- Posted July 10, 2009 at 3:46 am
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I went from 6% up to 89-94% after my transplant. The bad news is I was told by one of my friends who all so has had a transplant that She can not have children now. You may want to ask you daughters Doctor about that.
- By Boussaar
- Posted July 10, 2009 at 1:11 pm
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Hi Szaluski, I just saw your post and there is no way I would change nephs. He is honest and direct and that is the way I want my doctor to be. I was in complete renal failure two years ago. I have been in remission for 15 months and have 100% kidney function. My husband is a match and he offered one of his kidneys before we knew my kidneys would start working again. I turned him down flat. I really appreciated his offer but would never take it. If it came to it, I would try a transplant but not from a living donor. If I were younger, maybe. But at my age, I could not endanger someone else for a few more years. As you wrote, God can heal and he can provide us with the tools to heal ourselvles. I count my neph as one of my blessings. He tried something in the hospital that is usually not done for FSGS patients and I think it may have played a big part in my kidneys starting to function again. He also said in my case he thought there was some divine intervention. I think so too. I pray daily for all of us who suffer from kidney problems and pray for a breakthrough that will lead to a cure. In the meantime, I am very thankful for the medicines that we now have and for each day they have given me.
- By juliomexicano
- Posted July 11, 2009 at 3:51 pm
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I just want to say, "are you kidding me!" you are to PROUD to ask your friends to help give you life. Not to mention your family members. I can't believe that not a single family member will help you out, shame on them. I'm sorry but that is just selfish. You can never be scared to ask someone to help you out it has nothing to do with being proud but asking for life. The most that they are going to say is "no" thats not that hard to swallow. I am on Facebook everyday and everyday I put out a message for everyone of my friends and family to please consider helping me out. I tell them that dialasys is no fun. My wife has even posted youtube's on there to show everyone what dialasys patients go through, it's ugly. I have even twitered my need for a kidney and every time I remind all to Donate Life. So far I have two possible donors, one is a friend and the other is a family member(cousin). I also had one of the nurses at my clinic tell me that she would donate also, so there are three people that want to help out. Why you ask, its because I was never scared to ask them for help. Its like asking for a cup of sugar or to barrow the lawnmower or something. It's not hard just ask and if you don't want to I will. Give me their numbers and I will call your friends and ask them to help you out. I AM NOT KIDDING, I will. Leigho don't stop fighting and don't EVER! be scared to ask for help, DO IT before its to late.
I would give you a kidney in a heartbeat but mine range from 21% to 29% GFR, altough in better shape than yours I don't think they have to much longer.
And a comment that was made is unbelievable if I had a Neph tell me they were not going to do a transplant I would tell them to eat horse $!&#. Sounds like a lazy Dr. to me. I was also told that my MGn would or could come back but that is not going to stop my Neph. She is willing to give it a couple chances one of them is bound to take and if not than it was Gods will.
Bless you and if you need something email me direct frankrestovic@comcast.net
- By leigho
- Posted July 11, 2009 at 7:05 pm
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WOW SLOW DOWN JULIO. Let me make myself clear here. He does not want anyone to feel obligated to donate. He leaves it open for them to offer therfore he will not come straight out and ask. Learning to live with dyalisis is going to be hard but not impossible!!! We will never ever give up on him. Our Neph recomends the transplant. I was just questiong the fact of it coming back. We are not to proud to ask for help but we are not going to go around begging either.
- By juliomexicano
- Posted July 13, 2009 at 11:26 am
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I don't mean any disrespect. I am very passionate when it comes to living freely or living on a hose and I don't like the facts of having to live on the hose.
I know down south people are nicer and more giving. I should know I am from Texas I know the mentality in the south, much nicer and pleasant. So I pray that someone comes forth. But were I live now the people are rude and will not help out if you don't ask. So that is why I ask everyone I am not concerned what people think when I ask for help. I am not asking for food or for a ride or to bum a smoke but I'm asking for a better life than the hose.(dialasys)
I have four kids that need me; to take them to school, bball and everything else that they need. I don't have the time to waste in a room for four hours every other day I am a busy person. I would'nt have anyone helping me right now if I did not ask them. I have been dealing with this desease 3.5 years so I have gotten to the point that if I don't ask it won't happen.
I am sorry if I disrespected you; but know that I was just trying to help out. I live each day as if it were a gift from God, yesterday does not matter and tommarrow may never come.
Good luck to you and I will say a prayer for you so that someone will help you out. God bless and sorry.
- By RiverWhispering
- Posted July 14, 2009 at 10:24 am
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I've heard that you can live a long good life doing dialysis and that it's not so awful, mostly just takes up time and that with a transplant you will have other issues that could be more of a hassle and danger then just doing dialysis.
I have so much to learn I guess
Thanks for the posts everyone.... keep them coming
- By kidneybeans
- Posted July 14, 2009 at 7:59 pm
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i had fsgs and had my transplant 6 wks ago from a living donor. I have am an advocate for living donors, only because the chance of rejection is less. And because its a really nice thing to do!
- By chrismedic
- Posted September 10, 2009 at 10:55 am
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hey i am new here but not to fsgs i am 27 now and was diog. in 2001 . unfortunatly when orig placed on meds i felt so bad i quit it all and said forget it little did i know at that point in the dis i was in rem. and when i deciced that my sons and wife needed me i went from 91% to 47 % in 7 months and now i am terrified . i deal with cramps everyday a ton of meds including flexeryl for the muscle cramping which by the way works wonders . the only thing i havnt turned to is god but i am now feeling like its the rite thing to do seeing as how i am kinda giving up on medications since all that they have done for me i think is make things worse ( side effect wise)
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