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Thread: FSGS end stage

  1. #1
    Junior Member
    Join Date
    Nov 2010
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    2

    FSGS end stage

    I was diagnosed with FSGS in 1996 and managed to stay off dialysis until 2004. Prednisone MAY have postponed the inevitable but looking back it wasn't worth it. We did PD dialysis for 3 years with the last straw coming after 3 surgeries and then a seemingly unstoppable abdominal cavity leak. The PD clinic was seldom satisfied with my labs and continued to suggest/pester/nag me to go onto hemo dialysis. I did try the night time cycler but that wouldn't work because the alarm would constantly go off when I went to drain. In order to drain I had to be awake each time while sitting on the edge of the bed.

    We absolutely hate Hemo dialysis but have no alternative. Right now a transplant is out of the question because of many factors not the least of which I can not have a kidney from a relative on account of the FSGS. My opinion is kidney disease help and dialysis is still stuck in the 1950's. I know there are many people worse off than I am but that doesn't make coping any easier. My advice to those going to an on site dialysis center is to remember you have rights. Get to know who are the best nurses and techs and ask for them if you have to. At 61 years of age all I do is dialysis, I have no life and no energy to do anything especially on a dialysis day. All I feel like doing is sleeping and having sex is only a fond memory. Thankfully my wife understands and is always supportive. Whatever happened to the artificial kidney?

  2. #2
    Senior Member
    Join Date
    Mar 2009
    Posts
    153

    Re: FSGS end stage

    Kyle,
    It sounds like you are in another frustrating position. At least we have each other... venting to someone who can relate is helpful.
    I am interested in how you know that a related transplant isn't an option. I'm guessing you have relatives with FSGS, but I was never discouraged from a related transplant. I was diagnosed around 1997.

    I agree that whatever your stage or situation, everyone needs to advocate for themselves and become as infromed as possible.
    Diagnosed FSGS 1998
    Related Transplant 2004
    Unrelated Transplant 2009

  3. #3
    Junior Member
    Join Date
    Nov 2010
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    8

    Re: FSGS end stage

    Hi there....your story is amazingly similiar to my husbands...except he hasn't started HD just yet.

    We live in Paducah (just a hop, skip and jump from you)...he was also diagnosed with FSGS in 1996...and the prednisone therapy did more harm than good (he's lost 60% of his vision in one eye)

    We are frequently asked about if he can have a transplant....and we've been told that with FSGS the disease will recur within 3 years...which doesn't make him eligible for a kidney except from a living donor.

    My husband just had the fistula formation surgery last Friday...and we're not at all looking forward to the time-suck that HD will be. We have a daughter that will be moving back here from Oklahoma City to help out.

    No words of encouragement to give...we also have no one that understands what has happened to our sense of normalcy...at least I found this board.

    Blessings....

  4. #4
    Junior Member
    Join Date
    Jan 2014
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    1
    My name is jane I just found out yesterday that I have fsgs so learning how to eat reading storys please help not sure what stage until I ask tomorrow I wanted cashews no salt at this point I'm scared !! To eat foods !!!!

  5. #5
    Senior Member
    Join Date
    Jun 2012
    Posts
    265
    I was diagosed with PKD in 2002 and after nearly 10 years of regular monitoring of my kidney function, I started hemodialysis via HHD training. I had plenty of time to plan for this and had a fistula placed some 9 months earlier and got listed for a kidney transplant with one program in January of 2011 and a second in October 2012.

    I have posted on these forums extensively about my HHD journey and experiences. I continue to work a demanding up to 11 hour per day full time job that has required short notice overnight travel. The HHD modality is an up to 20 hour per week part time job that I must perform in order to maintain the health that is needed to support my active lifestyle. I just wrapped up 5 consecutive days of treatment comprised of 3X short daily (about 2 to 3 hours each) and 2X nocturnal at 7 to 8 hours each. I now have two consecutive treatment days off with which to pursue an even higher level of activity.

    I am able to do this with the support of my care partner/spouse of 36 years, and the outstanding medical staff at my HHD clinic. I've got under 7 years to go before reaching full retirement age, and have no serious thoughts of considering my employer's generous full disability benefits, preferring to continue to contribute my experience and skills to the workplace and reap the associated psychosocial and economic benefits of employment.

  6. #6
    Junior Member
    Join Date
    Dec 2012
    Posts
    1
    Jane it is scary. It was a year ago in November that I was diagnosed. After much research and talking to my doctor, I have found that fresh and home cooked foods w/ as little (no) salt as possible to be the best option. I'm 46 years old and I am just learning to really cook because of FSFG. I still do not like cooking but I'm beginning to have fun w/ it and learning a lot about food. If it becomes a big challenge schedule a few sessions w/ a nutritionist. It is worth it. Stay active, do whatever light exercise you can do, and my food motto is 'Fresh home cooked meals' . Good luck.

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