Premature? Pre-dialysis.

[MrNaturalAZ]

I guess most people here are already on dialysis, and judging from some of the introductions I've read, many had little or no warning. I had quite the opposite; more on that in a moment.

I'm glad to have found this forum for many reasons, not the least of which is that it is an actual "old-school" BBS-like forum like I cut my teeth on even in the pre-internet days. It seems that so many support groups (for whatever issue) have moved to social media in general, and facebook in particular. Also nice to see it running on Simple Machines, probably my favorite of the various popular forum softwares. But most importantly, it contains the collected experience of how many (thousands?) of patients from over the years, who are willing to share the real truth.

Searching the internet for information about kidney disease it seems there are a few different kinds of sites. There's the mainstream ones, run by equipment manufacturers and service providers, who seem to give all the same basic information, mostly in generalities while urging you to consult your own MD, Nephrologist, Dietitian, or other specialist. I'm sure the lawyers tell them what they can and can't say. There's also the sites run by various government agencies, foundations and organizations, very similar to the first in that they seem to toe the line on what they are willing to say, probably for liability reasons. There's also a handful of foreign sites that offer sometimes dangerous and totally bogus "advice" and all seem to have a persistent and annoying chat window. Stay far away from those.

I found the handful of personal blogs to be useful, though each limited to that individual's experience. Then I discovered IHD --  JACKPOT! Thanks for having me.

Anyway... where was I? Oh yes, ten years ago I was hospitalized with pneumonia, and it was discovered that I was anemic and my kidney function was significantly diminished. Various tests and scans later I don't think they ever decided exactly what the cause was, but things stabilized. I did see a neph for a while, who, at that point, really did little more than give me a handout about watching my sodium and potassium and prescribing me Lisinopril. And frequent labs. As it became apparent that this was no longer an urgent, fast-moving situation I stopped seeing the nephrologist.

So, for the past ten years my kidney function has been in slow but gradual decline, with my eGFR now varying from the high teens to low 20s. The closest thing to a real scare I've had was when my potassium was running high for a while - I even got a phone call from the lab telling me I should go to the ER immediately. I asked what the number was, then thanked her, and didn't bother with the ER because it was actually LOWER than it had been the past couple times. Anyhow, I was taken off the Lisinopril (switched to Metoprolol) and my potassium dropped back to normal.

Still, I figure at my current rate of decline, and if nothing changes, I may have a year or so to go. Or not. In spite of the mainstream websites telling me most people don't have symptoms yet in Stage 4, I know I have some. I have very obvious edema in my ankles and feet (often moreso in the left than the right), which sometimes doesn't go away completely overnight, frequent nocturnal urination, and lately I'll have brain fog and a metallic taste in my mouth more often than not. And tired most of the time. Some days are better than others, though.

So at this point I am here to learn as much as I can before the probably inevitable happens. It will be a big change in lifestyle when the time comes. I'm not as much concerned about being dependent upon a machine for my life (actually, technology and I get along quite well), it's the prospect of having to be so dependent upon so many other people, along with all the other (not strictly medical) issues involved.

Well, that's all for the moment.

[kickingandscreaming]

Welcome.  Sorry you need to be here, but being here can offer you a lot.  There are people on this forum in all stages of kidney disease.  I experienced a "slow" decline over about 6 years.  I'm now in PD since January.  Dialysis is like a slowly-ticking time bomb, a siren song that you don't really want to sidle up to.  But here it is! and it's a challenge from any point of view.

I wish you well.
K&S

[Michael Murphy]

A year or more to go, I hope you enjoy the time you have remaining  before dialysis.  Actually I hope you have lots of time.  I fight to remain positive about this but in all honesty the last two years I had before dialysis were some of the best years in my life. The word I would use to describe dialysis is commitment.  There is a diet to follow, fluids to restrict and a constant never ending stream of dialysis sessions.  Is it worth it. Yep.  But it's still a pain in the tucus. 

[cassandra]

Welcome to the site MrNaturalAZ

   


I hope you'll have quite some time before D.


Love, luck and strength, Cas

[SooMK]

Welcome to IHD MrNaturalAZ!

[cattlekid]

Welcome!

I too, thought I had a slow slide into dialysis.  However, it was a little different.  I found out I had kidney disease in 2000 in a roundabout manner.  I actually hurt my back in 1998 and went to a chiropractic college for low-cost treatment.  They saw that I had pain in the kidney area and suggested I go for tests.  Lo and behold I had a raging kidney infection that led to treatment, more tests, etc. which led to a diagnosis of IgA nepropathy. 

10 years passed with stable kidney function...then all hell broke loose right after I turned 40.  I went from a creatinine of 1.2 to 9 in less than five weeks. My nephrologist lost his mind.  Nobody saw it coming.  The only inkling of a symptom was that I had developed migraines but my creatinine had stayed stable.

I wish I would have done more research or been given info on other things I could have been doing to help stave off the inevitable.  I spent 27 months on dialysis and received a deceased donor transplant in April of 2013.  Knock on wood, everything has been peachy since then except this pesky steroid weight gain, which is making a slow exit as well. 

Any questions, fire away! 

[Blake nighsonger]

welcome

[Charlie B53]

Welcome to IHD.

My kidney decline was much like yours.  It was a very long time since I had my first visit with a Neph because of a 'protein leak'.  We watched my kidney function decline very little at first.  Taking so long I quite seeing him.  A great many years went by before my leg swelling became a serious problem.  Even thenm I had not other symptoms of acute kidney failure.

Compression socks helped a lot with the swelling.  Even before getting the prescription support hose I wore JCPenney knee high gold toe socks.  They helped greatly.  But alas, there came the time even they were not enough.

I managed almost 15 years before Dialysis.  It ws only when I decided I was sick and tired of being sick and tired, and swollen, all the time, that I gave in and started PD.  A little over three years already.  It's one of the best decisions I have made.

[DayaraLee]

I hope you have much more than a year before you have to start!! You have a fabulous attitude, and you're so right - this is a great site and community. 

[kristina]

Hello MrNaturalAZ,
i do hope you enjoy a very long time with your kidney function before starting with dialysis-treatment...
Nevertheless, you are here in the right place to learn as much as you possibly can about how to keep your natural kidney-function going for as long as possible with a kdieny-friendly diet etc.
and I wish you all the best and good luck from Kristina.