Hello from a 3rd time dialysis joiner

[nsdq]

Hello every body!

I've read through this forum since 3 - 4 weeks ago. The forum URL was at first scared me to join, and as some of you, I googled the words "why do people hate dialysis" where it landed me here; finally I decided to join

Here's my brief story.

I'm a 42 year old male. I have been diagnosed with chronic kidney failure in November 1993 where nephrologists couldn't determine the cause due to small-sized kidneys that they couldn't take a biopsy. I went through dialysis for the first time in 1996. In 1997 I've got a kidney transplant that lasted until 2006. The failure was caused by freaking FSGS. After then I went for dialysis again -- I really hate dialysis --
In late 2007, I was gifted with another transplant, where it lasted until the past April; again, the diagnosis was a recurrrring FSGS.

For the first time, I was up in the ladder of the *used-to-be* a successful life, then I fought and struggling to backup through, until of what recently ...

I'm not disparate but sometimes, as most of you, I'm. I know there are so many things in life that are worse than CKD/Dialysis, but as we are humans *social animals* we like to have a life, at least with a partner, with kids, etc.

I wish I can find my place among you to share our experiences and our real-life stories.

nsdq

[MooseMom]

I have no doubt that you will find a place amongst us.  We all have stories to share with you!

I was diagnosed with fsgs in 1992 and am almost one year post transplant.  It is my first, and hopefully only, transplant.

Will you be trying for a third transplant?

Which modality of dialysis do you do?

I'm glad you found us!  Welcome to our community!

[Rerun]

Hi nsdq, And welcome to IHD.  I'm so sorry that your kidneys are stolen by that damn disease.  There are at least a few dialysis treatments that you can choose from.  PD isn't as invasive and you can do it at night.  Not so cool for a relationship I guess.  I do nocturnal in center.  So my home is normal and I just go sleep on the machine 3 nights a week at the center.  My days are free.

Hang there.... I'm glad you joined. 

Rerun, Moderator   

[nsdq]

Thank you for all for the warm welcome.

I do in-center haemodialysis, 3 times a week. Perhaps the dialysis technology has pretty changed, I guess, to the timing of dialysis session
In 1996, it was close to 4:30 hrs a session, at least in the centers were I have be dialyzed.
In 2006, I was close to 4:00 hrs
In these days, it's 3:30 hrs

At first, if I've been asked for a (3rd) transplant, I would definitely say YES, but after I've read about the lifetime of a kidney transplant in recurring FSGS patients, that their average is 5 years, which is the case of my second transplant, I just would give it a some-time of thought.

In the past 5 months I've been struggling with too many infections:
  - kidney function was about 15-20% functioning, but not enough, and going down approx every 7-10 days, mainly also not producing enough blood cells
  - HG was continuously down
  - Immunosuppresant meds weaken my body immune system

The following may not be of interest to some of you, but it may others, so please skip it if you're not interested

In 1-Apr, I've both a UTI candida and a cellulitis in the left leg.
The Neph presribed Deflucan 50mg for candida (1 tablet every 48 hrs) and Cipro 500mg (1 X 2) for the cellulitis,
In the third day, I was great!

In 8-Apr, I've another tests, that showed everything is good, even urinalysis.
In 15-Apr, I started to suffer: a strong desire to urinate but it was very difficult urinate, in almost every hour.
Another 5-day course of both Deflocan and Cipro didn't improve things at all. Blood and urine lab works showed a heavy structure of both a UTI bacteria and body yeast count (candida) over 5900.
The Nephrologist decided for a nephroctomy for the newly transplanted kidney which was in left abdomen ( I still have the first xplanted kidney in the R-side).

@MooseMom, I hope you will and enjoy your new kidney, but you need to make sure that your FSGS isn't recurring as nearly of all patients with FSGS, around 50% of them have a recurring FSGS. So, it's important to check your body doesn't have an recurring FSGS.
There's no blood test for the (recurring) FSGS, only needs a kidney biopsy.
I've read some articles around the Web. An FSGS, if it recurs, it may affect the newly transplanted kidney after a few days (or even hours) of day-0 transplant day.

The bad news there's no medical therapy for the FSGS but the good news there are some medical procedures that reduce its effect on the (tranplanted) kidney.

Some of the  articles' authors suggest that kidney recipients diagnosed with FSGS should do a kidney biopsy within the first year of their transplant.

Hope this info will help you to keep your new *gift* of normal life.

- nsdq

[MooseMom]

@MooseMom, I hope you will and enjoy your new kidney, but you need to make sure that your FSGS isn't recurring as nearly of all patients with FSGS, around 50% of them have a recurring FSGS. So, it's important to check your body doesn't have an recurring FSGS.
There's no blood test for the (recurring) FSGS, only needs a kidney biopsy.
I've read some articles around the Web. An FSGS, if it recurs, it may affect the newly transplanted kidney after a few days (or even hours) of day-0 transplant day.

The bad news there's no medical therapy for the FSGS but the good news there are some medical procedures that reduce its effect on the (tranplanted) kidney.

Some of the  articles' authors suggest that kidney recipients diagnosed with FSGS should do a kidney biopsy within the first year of their transplant.

Hope this info will help you to keep your new *gift* of normal life.

- nsdq

You are certainly correct that recurrence of fsgs is a concern for any transplant patient.

Fortunately for me, it took at least 20 years for me to go from diagnosis to tx, so the general consensus of my tx team is that a recurrence is unlikely and that should it indeed happen, chances are it would take another 20 years for this kidney to fail as a direct result of fsgs.

My center does not do routine biopsies unless labs indicate there is a reason to suspect there is a problem.  Since there is no indication of proteinuria, there is no reason to risk the complications that a biopsy could cause.

That said, I do realize that in many patients, particularly the younger ones, FSGS can be far more aggressive.

[boswife]

Welcome  and glad you found IHD    Its so good to find others with the same  and desire to  ..............      Lots to talk about here, and great friends/family to share with.   

[Poppylicious]

  nsdq!

[CebuShan]

     nsdq!