Still pre-dialysis

[deckerj]

Hi, I'm 34 years old, was first diagnosed with IgA Nephropathy approximately 12 years ago. Based on some research I have done, I suspect it was triggered by the inoculations I received while on active duty in the Army as the timing of the development of the disease fits very well (I am NOT anti-vaccination though; I personally think such a viewpoint is absurd.) That suspicion is based on this (and other) whitepapers:

http://www.ncbi.nlm.nih.gov/pubmed/2738908

But, of course I can't prove it, and doing so is probably an act in futility, so I'm not going to pursue any VA claims.

My creatinine is currently at 4.18 with eGFR of 17 as of 6-AUG-2016, but I honestly don't put a lot of stock in that figure as I try to stay physically active and currently do about 4 hours worth of strenuous physical activity per week, which means my creatinine will invariably rise without any loss in glomerular function. My next creatinine clearance, which I trust more, is in a few weeks, and has typically shown a much higher filtration rate than my eGFR might lead one to believe.

Anyways, about me: I am a network engineer (I just started working for Banner health's lab division, which is interesting because Banner is the company I've been listed through for transplant years prior to starting my job here.) I'm currently making a decent living, and I'd like it to remain that way in spite of what comes next. Like many here, my fate will likely be dialysis in the near future. As I mentioned, I'm making a lot of effort to both maintain physical fitness AND my job, and I'm coming here to figure out which form of dialysis might be best for me, as my nephrologist has told me that if I opt for hemodialysis then I'll need a vascular access installed now so that I'll be ready when the time comes. The problem is I keep hearing inconsistencies, so I think the best thing is to hear from those who are going through it rather than those who prescribe it. I think what I'm aiming for is least amount of effort, least amount of dietary restrictions, least amount of physical restrictions. I really like swimming but am willing to forgo it if PD is optimal for the three things I listed.

I've had a few people offer to donate kidneys to me, but I've refused because I can't fathom the thought of somebody potentially dying for me (yes, I know the risk is small, but I just can't mentally deal with it. If the situation were reversed, I'd be willing to donate a kidney to somebody else, but I wouldn't donate a kidney to myself, which is something I've told to those who have offered. Yes, I have self-esteem issues; always have.) My nephrologist is urging me to reconsider, and I am, but I'm still not sure if I want to go through with it. I am however listed for cadaverous transplant as that is something I'm comfortable with. I've been listed for 2.5 years now, but I'm type O+ so who knows when I'll ever receive a kidney; my understanding is that it could take a very long time; probably more time than I have.

By the way, I hope my post doesn't sound too negative as that isn't my intention. But it seems appropriate as I'm sure I'm not the only person here to be in such a condition (and mental state.) At any rate, I look forward to an informative discussion!

[kickingandscreaming]

Welcome, deckerj.  Yes, your story rings a lot of bells.  I'm not sure I could accept a kidney from a living donor.  It is so HUGE to do so.  And such a gift.  I think I'd feel better about it if I really thought there was any way to predict whether the donor might eventually need a kidney for themselves.  There are so many people walking around who have NO CLUE that they might be succumb to kidney failure in the future.  As a silent disease that so few are tested for, it's easy not to know.  On the other hand, those potential donors must think very highly of you to offer such a precious gift.  And--at least of some level-- want to give it to you.  Refusing it is also fraught.  Clearly, a very hard decision.  No one has offered me a kidney and I could never ask for one, so I'm just thinking out loud.

As for dialysis, I do PD.  For one thing, I'm needlephobic, so Hemo is not attractive to me.  On the other hand, I'm an independent cuss, so I'd rather be more proactive in my care than to surrender myself to interminable hours in the clinic chair (which I tried for several months). I've only been doing PD since January, and so far it is working well for me.  I have very few dietary or fluid restrictions, can do it in my home, don't have to stick needles in my arm on a regular basis, and live a semi-normal life.  I'm not a swimmer, so that isn't important to me.  PD is known for preserving residual renal function (aka peeing) better than Hemo, so that is a good thing.  On the other hand, PD is time limited.  The pertioneum had functional shelf life and it's not forever.  Eventually it will come down to a choice of switching to Hemo, getting TX or chucking it.

Good luck with all your decisions.

[deckerj]

Really, so there's a limit to how long you can do PD? I've never heard this. Why is this so? Ugh the more I learn about dialysis, the more I don't like it. Ideally I could get a cadaverous transplant and have the graft last just long enough for UCSF to perfect their iRAD, which when I've been reading about how it works (and my understanding of silicon lithography) it seems like it should work; the only thing to sort out is how to prevent clotting, which is quite dangerous.

Also, my other thought is to do in-home nocturnal HD, but I can't find many details about the pros and cons of it compared to PD as most comparisons are about in-clinic HD.

[kickingandscreaming]

Really, so there's a limit to how long you can do PD? I've never heard this.

It's not a fixed limit.  It's a time zone that sort of average on 5 years.  Spending all that time subjecting the peritoneum to the sugar bath that PD uses eventually scars the peritoneum so it' can't function anymore for PD.  There is also the statistical issue of infection.  It's like, sooner or later, you'll contaminate yourself and will get peritonitis.  This isn't always a death knell for the peritoneum, but it can be.

Home HD, whether it daily nocturnal or of the NxStage variety requires fistula, as you noted, and a care partner.  Supposedly, it does a very good job--dialysiswize.

[Simon Dog]

Home HD, whether it daily nocturnal or of the NxStage variety requires fistula, as you noted, and a care partner.  Supposedly, it does a very good job--dialysiswize.

Except in the states of WA where Northwest Kidney center is enlightened enough to let patients run solo, and NY where the state requires remote monitoring of home hemo patients and the clinics consider that sufficient to allow partnerless runs.

[cassandra]

Most countries with Home Hemo do not require a care partner. And it does a very good job, apparently, as I'm still living a semi-normal life.

Love, luck and strength to all, Cas

[Simon Dog]

Most countries with Home Hemo do not require a care partner. And it does a very good job, apparently, as I'm still living a semi-normal life.

The obsession with having a care partner (no doubt coming from the legal team) is probably shortening lives, and reducing the quality of life for HD patients who are not fortunate enough to have a partner.

In the end, it should be the medical team's job to explain the risks, and the patients job to make an informed decision - not have the decision made for the patient.

[deckerj]

But overall is nocturnal HD less intrusive, less restrictive, less demanding on diet, than PD?

I can use my mom as a care partner. She's highly codependent and follows me everywhere, plus she has a CNA. My nephrologist says that he recommends PD, but I have my doubts that he truly understands the ins and outs of dialysis.

[cassandra]

Hi deckerj if you do some more research (like on this site) you'll find articles and journals about the results and restrictiveness of all D's.
To be able to do nocturnal you'll have to do 'normal' HD first for a bit.

And in my experience nocturnal HD is about as restrictive as PD with diet. Intrusive? I couldn't compare. They both need strict hygiene rules, they both intrude on your house with boxes and more boxes and medical supplies.

And in my personal opinion if poss, I would start with PD. (Quite some med. Articles have done research into that)

Love, Cas

[Simon Dog]

My nephrologist says that he recommends PD, but I have my doubts that he truly understands the ins and outs of dialysis.

Wow.

[deckerj]

My nephrologist says that he recommends PD, but I have my doubts that he truly understands the ins and outs of dialysis.

Wow.

Well, let me clarify that a bit: As far as I know, he hasn't experienced it for himself, so I kind of doubt that he truly grasps what life with dialysis is like. I guess an analogy would be the difference between prescribing chemotherapy vs being a chemotherapy patient.

[cassandra]

Oh deckerj you are going to have an awful long time before you'll meet a nephrologist who has experienced any form of D.
That's one of the reasons this site exists.

Love, Cas

[deckerj]

I think pretty much the only negative health effect (other than minor edema) I'm seeing right now in spite of such a high creatinine level (4.13) is the fact that I tire out quickly when I try to exercise, which I'm betting is anemia (I have bradycardia caused by beta blockers too, but it's likely not pathogenic since resting HR is at about 45.) My hemoglobin is at 10.9, has anybody ever had their nephrologist prescribe erythropoietin pre-dialysis?

[kickingandscreaming]

My hemoglobin is at 10.9, has anybody ever had their nephrologist prescribe erythropoietin pre-dialysis?

I started receiving EPO shots a year or two before I started D. 

[kristina]

Hello deckerj and welcome to IHD.
Just by chance I have been reading your introduction and it instantly "spoke" to me, because, like yourself, I could never have imagined to accept a kidney-donation (from my husband) whilst I was still pre-dialysis. Nevertheless, my husband continued to "work" on me until I "gave in" and finally accepted his going ahead with the kidney-donation work-up. It turned out to be very fortunate that I finally did agree with my husband to go ahead with the kidney-donation work-up, because during his work-up he was diagnosed with bladder-cancer, a very silent killer amongst cancers, because there are no symptoms until it much too late. Fortunately his cancer was diagnosed just in time! Meanwhile my husband had two complicated bladder-cancer-operations plus chemo-therapy and fortunately he has been medically put in the clear for now. His next cancer-check-up is within the next three months and we are optimistic and hope for the best. I can imagine that right now you wonder why I write all this to you. The answer is that this example shows very clearly that in life there is nothing ever clear-cut and there is no precise answer to anything either, because most of the time things turn out completely different from what we thought they would turn out. ..
... I do hope you can be pre-dialysis for a very long time and I do hope everything goes alright for you and I send you my best wishes from Kristina.