GFR 10 What can I expect?

[racko]

Right now I only feel weak. What is to follow.

[Michael Murphy]

More than likely dialysis or transplant.

[Deanne]

I saw your earlier message that you weren't interested in either dialysis or transplant. If you're asking about which systems are to follow, then I'm guessing you'll start to feel swollen and get short of breath, and probably be constantly tired. Some of it might depend on your diet. The weakness might be from anemia. If your potassium level goes very high, you could experience sudden death.

[racko]

thanks, that is what I wanted to know.

[Simon Dog]

You might also feel nausea.  When my residual dropped and PD proved inadequate, I had to keep a plastic bag at my desk at work and would sometimes open the door to puke at a red light.   

[Deanne]

I hope you're in hospice and are getting the support you need to remain as comfortable as possible.

[Michael Murphy]

I understand why you would like to skip dialysis, but while I must admit dialysis sucks it ain't as bad as dead.  Simply put I spend About 18 hours a week on dialysis activities.  Commuting, on, holding and again commuting.  That leaves me about 150 hours a week to have a life.  While a never ending stream of dialysis sessions is a major bummer its balanced by a stream of new expeiences in life. After working for 45 years I just retired and I find the lack of work just as fun as I thought it would be.  The one thing I thought I would miss is the social interaction in work.  It turns out it has been replaced by interaction with the patients at the clinic I go to.  It's sort of like being 18 or 21 and starting your work career.  You knew when you started work it would impact your free time and it was constant day in day out grind.  I had a great job for 40 years, doing UNIX systems work.  But it was a unending trudge.  Now I have a 18 hour commitment with more free time.  It also pays,  on social security I would have made less money than I now make on Social Security Disability. This site is a place we can vent about the problems we face on a daily basis as dialysis patients, but I think most if not all would tell you that it's better than the alternative. Thaths why there are 400,000 thousand dialysis patients in the U.S. Alone.  If you haven't been to one got to a clinic take a tour and got to the support groups that they run talk to the people on dialysis and get their view on the process.  Good luck with what ever choice you make.  I know that this is a very hard thing to deal with.

[kristina]

Right now I only feel weak. What is to follow.

Hello racko,
With a GFR 10 it is very unlikely that your kidneys recover again and therefore the best option would be
to have a talk with your nephrologist to find the best way forward  ...
... If you consider, there are quite a few different dialysis-options and I am sure there is one that fits you best...
... Starting dialysis consists mainly of getting used to a new life-routine, but it also opens new ways of what to do during the time...
... In my case I have discovered many interesting books in my public library, which is just round the corner and specializes in real-life Spy-story-books... 
and I very much enjoy reading many different books during "you know what"...
(One of the most shocking books I have read so far is "Hidden Agenda" (How the Duke of Windsor Betrayed the Allies) by Martin Allen
and this book is not recommendable to be read by anyone who still believes the tale about a King who abdicated for love....
I welcome you to the Dialysis-Club and send you all my best wishes and good luck from Kristina. 

[racko]

Thank you for all your kind and informative responses. This is just driving me nuts, the anxiety.

[iolaire]

Prior to dialysis I had irritation in my legs at night that was making it hard to sleep.  It was not exactly and itch but more an odd feeling. My fatigue level had been high for years.

[Michael Murphy]

Racko I have written about this before but as I look back on the beginning of my dialysis adventure I realize my fear of dialysis made the first session into a three stooges event.  I was stupid I avoided touring a center and learning about what I was getting into.  The only smart thing I did was several years before hand I had a fistula created every thing else I was in denial about . My nephroigist was convinced I wasn't going to start till I ended up in the hospital. I on the other hand was waiting for a sign from God, a symptom I was in work one day and after a particularly fine lunch I began to become ill and ended up tossing my lunch in my garbage pail.  So I call my nephrologist and told him it was time to start.  I think he was in shock but he sent me to the clinic that was attached to my local hospital because he thought I would be non compliant. The first day was a night mare not because of the treatment but I was scared spitless.  The clinic is on a main road across from a mall I have been two three or four times a month for Twenty years.  I got lost three times on the way it was miserable, when I finally got to the clinic every thing got better.  The people there took the time to explain every thing step by step. I met other people who were going through this process.  Then it was time to leave and I went to put on my glasses and found out I took my reading glasses and I was blind as a bat with them on.  The more you know the easier this whole process is,  if you read this site you see stories of problems they are the exception,  most of the time for me its get up early drive to the clinic, talk for 20 minutes with my fellow patients, get weighed, sit in a medical recliner, get two needles in my fistula, sleep for a hour, read for a hour, and play games on my iPad for two hours.  Have the needles removed, hold the site for twenty minutes go home.  I don't want to take away from people's complaints but they are the exceptions For  most of us is a boring way to kill four hours.  I know how terrifying this looks to you but please visit a clinic you will find its a better life then you think.  For the first twenty months I was on dialysis I worked full time and it was not dialysis made me retire but the crap at work that had me look at my options. 

[Simon Dog]

I hope you're in hospice and are getting the support you need to remain as comfortable as possible.

Did I miss something?   There was nothing in the original post that indicated giving up or near death.

If you haven't been to one got to a clinic take a tour and got to the support groups that they run talk to the people on dialysis and get their view on the process.  Good luck with what ever choice you make.  I know that this is a very hard thing to deal with.

If your docs's clinic (your nephrologist will be associated with at least one) is doing a decent job of it, you will have a pre-dialysis class where they go over in-center hemo; PD; and home HD.    Some clinics under-emphasize home hemo since they don't offer it, and only a bit under 2% of patients use that option.   If you are of the right personality type (stubborn, self-sufficient, the type who considers it a sign of personal failure if you call an electrician or a plumber) you might find that home treatment makes dialysis a lot more bearable.

I'm on home hemo and, while it is a lifestyle change, I can say that I still really enjoy life.  If I don't get a transplant, I am planning on discontinuing dialysis.   I'm thinking age 85, maybe 87, depending on how I am doing (in my 50's now).

[Deanne]

I hope you're in hospice and are getting the support you need to remain as comfortable as possible.

Did I miss something?   There was nothing in the original post that indicated giving up or near death.

I'm not trying to push anyone off a cliff! racko posted an earlier message that indicated he isn't planning on either dialysis or transplant. The tone of his messages is short and to the point, which I took as "I've made up my mind  and I only want to know what to expect." I hate it when I've made up my mind about something and instead of supporting my decisions, people try to talk me into doing things their way instead. It's exhausting to argue with everyone. This was my mindset in responding as I did.