I was got sick back in March 2001 and was later diagnoised w/ FSGS. I get tested every 4 months or so to see where I am on the progression of this disease. I am around 35pct function right now and my numbers have been staying pretty steady since 2001. I just wish I new how long it would be until my kidney's go to kidney renal failure. Can any one give me some time frames? I know everyone is different but I have read its 5-10 yrs from onset? Is this generally true?
yes and yes.
5-10 years. I have gone from Stage 2 to stage 3 in 2 years. So I am thinking in 2 more years I will be in Stage 4. Then Stage 5 in 2012.
Or it could progress faster than that but I am thinking on the posi side and it is going to go into remission and stay there!! Or a cure will come in the next 4 years before I hit Stage 5!!
Thank you so much for your reply. I am at stage 3 right now as well. They have no idea how I got FSGS and high blood preasure. I spent yrs searching for answers through doctors and the internet w/ not much luck. When I first found out what I had and what it meant longterm, I have found the Dr's really act like its no big deal. I was not sure how to feel about this new news about my life. I really didn't get any kind of support from the medical community and was pretty disappointed. I have now just accepted the fact I have this disease no one really knows about and hope I will live long enough to get my son raised. He is 11yrs old. My ex-husband makes no real attempt to be apart of his life so I am all he really has. (Its such a long story). My ex asked for a divorce right after I got sick w/ kidney disease. Great timing. I just pray to God he will keep me here long enough to see my son raised to a man. I try not to dwell on the disease, but sometimes I get thinking about it and it really makes me sad. Or sometimes it doesn't seem real. I don't know. I have a good kidney Dr., but all of them just treat you like a number. Like this disease is not a big deal. Well they are not the ones who have it. Thanks again for your response.
Actually is that really no cure or recover for FSGS patient? cos actually i am diagnosed as MCD before, and relapse about 3 month ago, yesterday when i went to my dr, he said my patern of sickness change, so probably the MCD is change to FSGS already, but still need to do biospy to confirm that. I heard that FSGS will lead to kidney failure, and that make me so scared and fear.
My test result show my kidney function is still ok, normal and just the protein leak bad, it keep up and down and albumin is low...except from this, my blood presure all is good, normal. so what that mean?? it confuse me a lot.
Actually anyone having the FSGS and in remission?? any information can share with me??
Thanks and regards
Kym
When I was finally diagnosed with FSGS my transplant nephrologist told me, "you have a horrible disease." She said this in 2001 because we didn't know anything about the disease at that time. We still know very little.
I understand your fear about your future. My son was two years old when I was first diagnosed.
For me, I went from having fifty percent of kidney function since age 17 to 35 to zero percent within four months. That was quite a shock. I had never heard of dialysis when I was in the hospital getting a catheter placed so that I could dialyze.
Since that time have had two kidney transplants - one from my wife and one from a cadaver. Both failed due to FSGS. And, I have tried all forms of dialysis.
I also adopted my daughter from birth during that time. There is a lot of life to be lived even without the use of your kidneys.
I now do hemodialysis at home by myself when my children are at school/preschool. My son is eight years old and my daughter is four years old.
My future looks very bright. I hope to see my children graduate and get married. But for some reason if that doesn't happen, I will make sure that the years that we are together are the best ones ever.
On a more practical note, for anyone with a chronic illness it is important to make sure your economic house is in order. Make sure you have a Will. Make sure you a guardian has been selected for your children. This sounds morbid of course, but these are basic things that any parent should take care of. You don't even need to have a chronic illness an accident could happen tomorrow.
Also you can have hope that a the scientific community will learn more about our disease and find a way to put off kidney failure.
But, rest assured, when you kidneys do fail that there are options. If transplant doesn't work, dialysis is a wonderful option. It keeps me alive.
And, daily dialysis may turn out to have outcomes that are better than transplant if you take into account the affects of immunosuppresants.
Don't get me wrong - both sound scary and are very involved. Fear is a natural feeling when having to deal with them. I have had much fear and many disappointments. But, I have gone through the ringer and have found myself on the other end.
I am glad to be alive for me, my children, my wife and my friends. And, I think they like it that I'm here too.
Good luck! Erich
Don't get to scared hon!! To me it is not a death threat if we don't take care of ourselves and our diet.
Get online - do research! Get answers and no the medical community doesn't really care about us right now cause no one dies from this it is the complications from it that take us out. I have had over 406 cholesterol for over 2 years and I wonder WTF is that doing to my heart?? Finally after 6 months of Lipitor it has come down to 289 (i think?) somewhere around there. When this first started i use to write down my BP, Cholest. and weight after every visit. Then after a year I stopped...I lost 35 lbs...on Prednisone. This whole low sodium and low cholesterol I think is saving my life. Well that and taking stress out of our lives!!
But every day I am always so focused on what salt content is this...it changes your whole world. Diabetics can't have sugar? Well salt is in EVERYTHING! I have to read labels on fricking everything to keep me down under 3000. That is my goal every day.
I have been swollen every day since 2005 and still pee bubbles. Hang in there hon! I have 2 jobs and 2 children...one is 21 and the other is 17. don't let it get you down...at least we know what will happen unlike those with life ending diseases.
Message me if you have any other worries or questions I don't mind at all!!
I am 59 and was diagnosed with FSGS last June. I started swelling, feet, ankles and hands late in March and my blood pressure was out of control. This was the first indication something was wrong but my blood work did not show anything until early June.
By June 22, 2007, I was in acute renal failure. I was scheduled to go on dialysis 7/3/07 but the treatments started working and I went home that day instead. In March, 2008 my neph said I was in total remission and my kidneys are functing 100%. I am not swelling and do not take any flluid meds. I am on prednisone and cellcept but both drugs have been cut and I am doing fine. I don't know how long it takes because I was in renal failure within 3 months of the first symptons. I never had any kidney trouble before, not even a kidney infection. My neph says FSGS is unpredictable but I have been very lucky. Hope you will be too.
Have anyone here ever get gout? My right foot, right at the joint of my big toe has been hurting, alot since last summer. I thought it was a bunion, but my Dr says it may be gout due to my kidney disease. So I am waiting for results from my blood work. I have been putting this off since last year, but now I am mad at my self for doing so.
HI. I was diagnosed with idiopathic fsgs last summer, and like a few others here, I am totally confused. The nephs so far are no help and have no interest in helping me understand. When I was diagnosed, I was at stage 3...protein spill= 1.6g; creat.= 1.8, and gfr= 31-33.
The nephs wanted to wait to try treatment, because I wasn't bad enough to risk the meds. Ok, well last week my protein was 1.0g; creat= 2.0; and gfr= 28...now they say it is too late for treatment????? Talk about confusion! Does anyone know what the window is for treatment, if the above is correct?
Boussaar, I would love to know what your labs were when they began treating you, since you went downhill so fast. That seems very hopeful to me. Had you been spilling protein for a long time, do you think?
I know that I had protein in my urine since at least age 17-18, but no one did anything about it. I was just a kid and had no idea it was anything bad....doctors never checked me for anything. As I got older (25+), I started asking doctors what it meant and they just said " It just means you have protein in your urine." That was that...no big deal...and I didn't know any better.
I am not for sure if it is a good sign or a bad one, but if you have had protein in your urine that many years, how am I still going at age 39? Does anyone know what the percentages are for fsgs to come back in transplants? I have 2 willing donors, but if the risk is too high, I am not even going to go through with a transplant.
I have read about the transplants for FSGS and it is 50% chance of stability. High chance that the FSGS will just go to that kidney. I look at it like this if it gets so bad and I really need it then I will go for it but if I can live okay without taking someones kidney then so be it. You know what I mean?
So much stuff comes out of this creepy disease, I hate it.
Mamagemini--I understand completely! My brother has offered, as well as my husband, to donate their kidney, but like you I am very hesitant. I have read some stats saying it is a 30% chance and that is high enough. I believe that if I got one of their organs and fsgs came back, I wouldn't be able to handle the guilt. I also think...what if one of their children ever needed a kidney and I just wasted it? That's a lot to live with.
I believe that I would rather just wait for a cadaver and I would still feel guilty about that, but I wouldn't have to look at their faces everyday. I did read, on another kidney site, that a guy donated to his niece and she is doing great, but he is on dialysis for life. It was not an FSGS case, but still the same thoughts.
Just to show really how unreliable this disease is... I was diagnosed with FSGS in the summer of '86. I was resistant to prednisone and have never been in remission. 22 years later, I'm still at Stage 3. I deal with symptoms on a daily basis, but the worse thing I or anyone else can do with this disease is stress about it! I know it's incredibly hard not to stress, but sometimes you just need to force yourself. If you're constantly worried about going into kidney failure, you'll be miserable and miss what's good in your life. And if yours takes as long as mine to progress, that's a lot of life to miss!
I understand your feelings fsgsblahs. FSGS shut down the kidney that my wife donated and FSGS shut down a cadaveric kidney all within days.
I do feel guilty some of the time. But I take solace in that fact that only the healthiest individuals are allowed to donate. In general 50% (one kidney) will last them into old age. Of course something can happen. But, something can always happen. I have an eight year old boy and four year old girl. We didn't hesitate for my wife to donate because they may or may not need one twenty years from now.
There will always be plenty of opportunity for renal replacement for our children if for some unseen reason they may need one.
Kindey transplants are to help give the person who needs one a better life right now. We have been blessed with a redundant system that allows us to do a living transplant.
As far as FSGS is concerned, you are much better off with a living donor than a cadaver because you can start treatment prior to the transplant. This is impossible for cadaveric transplant since you never know when it is coming.
We all have to make decisions that we are comfortable with. For and FSGS patient who is contemplating a transplant - living is the way to go. If someone is offering their kidney to you it is because they love you. No one should ever make a rash decision about donating an organ.
Remember, if my wife's kidney would have worked I would be working right now and not be on dialysis and would not be concerned much at all about guilt. The good news is I can deal with guilt, it is much more difficult being on hemodialysis 2.3 hours a day six days a week.
Good luck. Erich
I was diagnosed with Gout when I was 17. Shortly there after my kidney function decreased by 50%. It stayed at 50% until I was 36 then went to 0% in four months. A biopsy of the kidney that was donated by my wife indicated FSGS. I never had a diagnosis of the failure of my native kidneys.
Erich
Jenny1....
I am not sure when all of this TRULY started with me. I just know that I was spilling protein, starting at age 17. I didn't develope "symptoms"..High BP and elevated Creatinine until 2006. Had the biopsy in June '07 and was at stage 3 and I have just been bumped up to stage 4. I am relatively new to all of the kidney stuff and it is just overwhelming right now. I do stress out, because I am my mother's caretaker, and don't know who will take care of her when something happens to me.
Riverdude-
I understnad what you are saying completely, but if FSGS is that ruthless about coming back, I don't know if it is worth it. I have not heard of too many transplant stories, concerning FSGS, that have had a good outcome. Matter of fact, I can only think of one. I would have them do in depth testing to see my probability of keeping the organ, before I will seriously consider it.
I have had 2 conflicting opinions, so I am headed up to Indiana University to have my care managed. They are like 4th in the nation for transplants and the doctor that I will see, previously worked at Mayo clinic (nephrology) for 15 years. They currently treat patients clear in California, who fly in for appointments. My mother had a liver transplant there in '04 and the care is out of this world. They are the most available professionals that I have ever seen.
Wow Riverdude! Did she unknowingly have FSGS before she donated? If so, why in the world didn't they catch it? If not, how did FSGS get into the picture?? That is a trip.
My wife didn't have FSGS I did. She is quite healthy and for the past seven years her one kidney is working like a champ.
The FSGS was in me, and when I received her kidney it shut it down, as it did two years later with a cadaveric kidney. There is no accurate blood test to determine whether you have FSGS. My native kidneys were too scarred to get any tissue for a proper diagnosis through a biopsy.
There is a test that Dr. Savin at UW Milwaukee is doing to identify the factor but it is still experimental. Also, my understanding is that even if the factor exists in your blood it doesn't necessarily mean one will be symptomatic.
Also, there is some research that shows that over time the factor which causes FSGS may burn out.
If you have had more than one transplant fail due to FSGS the likelihood of success with another transplant is less than if you have never had a transplant fail due to FSGS. Even with this info, my University of Michigan Nephs indicate that there is perhaps a 70% chance that another transplant will work. They are in the business of doing kidney transplants. They wouldn't list me if there wasn't a decent chance that it would work. They would soon be out of the transplant business if they listed many people with only a 50% chance of success. A 50% success rate would also greatly reduce the number of organs made available through the Gift of Life. People wouldn't be inclined to donate if they felt the loved ones organ would be wasted.
The other thing to remember when contemplating kidney transplant is all things being equal, a living transplant on average lasts much longer than a cadaveric transplant.
Sounds like going to Indiana will be a very good thing for your health.
Good luck! Erich
Trust me, fsgsblahs, I understand completely how you feel. This disease is not an easy one to deal with, and everyone worries about what would happen to others if something were to happen to you. It is stressful, it is overwhelming, and I would like to say that it gets less so over the years, but it doesn't. You just do what you have to do to stay healthy so you can take care of your family. And it sounds like you are definitely doing that. Just try not to worry too much about what could be, or things that you can do nothing about, and enjoy your life as best you can. And know that there are so many people out there that are going through the same things, the same thoughts, the same feelings, etc. Take advantage of that. I find it has helped me this past year and wish I would have known about this forum earlier. And I will do the same - will try to force myself not to stress and worry about things I cannot change (I think I may be slipping towards failure). Good luck with whatever decision you choose to make in the future.
I entered the hospital on 6/22/07 in acute renal failure. I started swelling the end of March, 2007 and until March I did not know anything was wrong. My blood work did not show anything until the first of June, 2007. I don't think there is any way of knowing.
I was being treated for high blood pressure which was off the chart and I was referred to a heart specialist. I never had any kidney problems before, not even a kidney infection. I don't when it actually started but a kidney biopsy confirmed the doctor's diagnosis on 6/28/07. I am in full remission now.
I am on a kidney friendly diet and prednisone and cellcept.
I know my protein and creatine were very high but i do not know the numbers. I see my neph on 5/19/08 and I will ask him. My kidneys are functing 100% normal now and no swelling, no lasix but a low sodium diet, low potassium and no milk or ice cream.
I was scheduled for dialysis and would have been hook up if the treatment had not worked. I was also given a low dose of chemo like cancer patients are given because the nephs thought I had another bad problem but the biopsy showed on FSGS. Prednisone and cellcept and a low of prayer. I was 58 when diagnosed. No prior kidney trouble except a small stone in 7/06. I think my problem may have started sometime in May because I did gain weight but no feet and ankle swelling but all blood work and even blood pressure were OK until 3/07. I will let you know the #s. I have the best neph in the world and he is very interested in FSGS. He got me into a national study that UNC at Chapel Hill is conducting.
My neph does not recommend transplant for me even if my kidneys fail again. He says FSGS will affect new kidney and I would be right back where I started.
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