Recovery of Renal Function - Clock is Ticking! Time Left?

[huxley634]

Hello!

I posted on this board last year when I started dialysis and then disappeared... A lot of things have happened.
In a nutshell, in July 2013, I had contracted black water fever - a rare complication of malaria falciparum - from a backpacking trip in Southern Africa. I was initially treated for acute kidney injury with a starting creatinine of 13. I had also stopped urinating completely. After three weeks of hospitalization, it didn't seem I was getting much better so I returned to the US (I was a study abroad student in South Africa). Upon arrival, I started to urinate again (only half of a cup to a cup a day). I received a biopsy that had shown that I had some signs of chronic scarring (but no indication of when this occurred in my life - I'm 25 BTW). The prognosis was that I had collapsing FSGS (HIV negative) with an estimated renal function of 5 percent.

. Mind you, I had no symptons - no high blood pressure, foamy urine, etc. But I do have a family history of ESRD - grandparents died of diabetes nephropathy and my older brother had gotten ESRD from unknown untreated hypertension at 25 and received a graft five years later. His biopsy also revealed FSGS (non-collapsing) so the doctors automatically anticipated that there was genetic variables involved.

It was found that I had the genetic mutation (APOL1) which from my own understanding predisposes oneself to a 70 percent chance of FSGS from birth.
To add, we are African Americans and this gene is linked to that.

So by now I had been on dialysis from July to late November 2013. My urine output increased dramatically and my creatinine is improving. Both my phosporus and potassium are on the low ends additionally. I end up getting hospitalized around Thanksgiving for a permacath infection where I avoid dialysis for a week. An hour before I am about to get replacement catheter, I ask the doctors to reevaluate how my renal function is. I think I am improving.

Two days later with still no access, I am told my function improved to 26 percent. I am still transplant eligible as they are certain if this is just a temporary spike. My GFR is 14 with a creatinine of 4.12.

The second time I had my renal function assessed since then was this past July, a year after everything came crashing down. My creat was 2.8 (had started linospril a few weeks earlier) with a GFR of 20. My function was calculated to be 37 percent.

I'm now almost at a one year anniversary since my remission and my creatinine is 2.4 now. The improvements are very slow and I am now inactive on UNOS.

It seems like my creatinine will keep improving, although extremely slowly. I have restricted my protein intake severely (transitioning to high raw 80 percent veganism). I know I also might not be able to maintain a pregnancy due to my current renal function but is there anyone on this forum who has had reasonable function and maintained to stay off of dialysis or 5 years or more?

I honestly hope to never need a transplant until I'm older (like in my 50s). I know the demons of them through my brother. I try to stay as optimistic as possible, even though my doctors don't want to give me any hope. They tell me just take it year by year but I know that my body is stronger than that...

[jeannea]

When I was diagnosed, I was 22 yrs old. My creatinine was about 2.5, can't remember exactly. I went on the low protein diet. I got monthly lab work. Because of my disease, we had to work on keeping my electrolytes balanced. Also, with my disease I did not stop urinating. (Medullary cystic kidney disease is an opposite disease. I drank 9 quarts a day, peed a lot, my potassium and magnesium were way too low.) I made it 6 years before I had to have my transplant. I was able to skip dialysis because once I was ready my mother gave me a kidney.

I will be honest. For me those 6 years were really tough. I worked a desk job and lived alone in my appt. i had very little energy. I would go to work, come home, and rest. I had to almost save up energy to clean or run errands.

I hope you can have a few years dialysis free.

[kristina]

Hello Huxley,
Reading your story almost reads like a déjà-vu of my own experiences, except that I have never started with dialysis... not yet anyway...
...I was discovered in a coma with total kidney failure and uraemia in 1971, was first observed in Accident and Emergency
and later put on the transplant waiting list, especially after my kidney biopsy revealed one year later in 1972 (when I was strong enough for a kidney biopsy)
that I suffered from chronic proliferative glomerulonephritis with six months to go until dialysis...

... Then my kidney function began slowly to get better, until it had reached about 40% to 45%.
Over the following years I had no mentionable kidney-troubles, even though I was told by many doctors/nephrologists, 
that my kidneys were as small as a child’s, with lots of scars and I had not long to go until dialysis...

I started a very strict vegetarian diet in 1971, drank only water and the occasional cup of coffee,
no alcohol and nothing that could be slightly difficult to digest, after I was advised by a Professor of Medicine
that I might have one chance, if I don’t aggravate my body and kidneys
and keep very strictly to an easy digestible healthy veggie-diet with fruits.

Then I was told in August 2006 that my kidney function had deteriorated considerably and that I am in end stage kidney failure.
But my kidneys are still functioning in 2014, even though, I now believe that my dialysis-free-days may be very much counted
with 6 – 7 % of natural kidney function left...
Because of former issues with cancer I have to wait to be eligible for the kidney transplant-waiting-list until December 2014
and I do hope to make it with my natural kidney function until my transplant ... without needing any dialysis...

I wish you good luck and I don’t know, whether my ideas of a veggie-diet with healthy fruits might be helpful to you,
but for me it certainly was and still is very helpful and I must have had lots of good luck as well
to have been going all those years without any dialysis...

Good luck to you from Kristina.

[huxley634]

Thank you for your responses. Jeannea: I am currently pretty tired for the most part.
I'm in my first year of my PhD (trying to move on with my life) and I get so tired after being out for a few days that I end up going up and sleeping for 12 hours. Becomes difficult to manage my assignments or studying. I want to start working out; did you exercise during this time period?
I thought it was depression making me like this but clearly not. Are things better post transplant? Earlier this week I saw the transplant nephrologist (registering with a new center... I moved recently).

Kathleen: you are very blessed to have such a long time without dialysis. I hope I can be as lucky as you. The tips from your diet will be overwhelming helpful as I am trying my hardest to have a chance.
My proteinuria is currently 0.5 gram which apparently is extremely low for an FSGS patient, hopefully I can get it lower but I miss meat haha.

[jeannea]

I'm a bad example. I didn't exercise except for climbing to my second floor appt or having to park in the back of the parking lot at work. I was in my first year of grad school when I was diagnosed. I did get my master's but I'm not proud of my work and it took 3 years not 2. I had originally intended to get my PhD (chemistry) but I couldn't pull myself together physically or emotionally. Even many many years later I feel ashamed of myself.

This does not mean the same will happen to you. Will power means a lot. My doctor had never seen my disease before. We learned together how to best treat it. So I think we were always a step behind. No one in my family had ever gone to therapy. We didn't know how much it would help so I didn't get a therapist for years. There was no food labeling then. I had almost constant nausea which never helps. I'm older now and it sounds ridiculous but things were different then. For example, there was no group like this I could turn to for support.

You can do lots of things. Just focus on what is important to you and let the rest go. Try to stay healthy. Take your meds, follow your diet, get good rest as much as possible. Be honest with your doctor. Maybe a different BP med causes less fatigue or whatever. I'm guessing. I hope you can stay well for a while.