Hello everyone

[tigtink]

I would like to thank everyone who has shared their stories and knowledge on this site.  I have been reading here for a while and it has helped me tremendously.  At age 53, I find myself in late stage 4 with a GFR of 18 and a brand new AV fistula, only two weeks old and still maturing. I am facing dialysis somewhere in the near future.  I took lithium for 21 years for bipolar disorder, and although I have been off of lithium for 13 years now, the damage had been done and my kidney function has been steadily declining.  I have never had high blood pressure, never smoked or took illegal drugs, and do not have diabetes or any family history of kidney problems, so my kidney disease appears to be solely from the lithium use.  I understood the risks all along--there was supposedly only less than a 1 percent risk of developing ESRD from lithium use--and I probably would not have survived and gone on to have a good quality of life without the lithium, so I did what was necessary to survive.  Still, it is hard to accept needing dialysis or a transplant at this stage of my life.

The AV fistula surgery went well but was more complicated than I anticipated.  I had to have it put in my upper arm because the veins in my lower arm were too small.  They also had to do a vein transposition, so I have a scar from my armpit to the crease in my elbow and ended up staying in the hospital the night of the surgery.  It is healing nicely though, the pain was minimal, and I have a strong thrill.  I had an ultrasound done last Thursday and will have a follow-up appointment with the surgeon next Wednesday.  It was a lot easier on me physically than it was emotionally.  Six months ago I thought dialysis was in the distant future, now it has become all too real for me.  It still may be a while, but I have a lot less time than I thought I did.

I hope I can contribute here and continue to learn and hopefully be of some help to others.  It is all pretty overwhelming, and I'm glad I found this site.  I look forward to meeting you all.

Debbie

[UkrainianTracksuit]

Hi tigtink (Debbie),

I'm new here too but I thought I would say welcome.    I know another lady in your age group that is in a similar situation: lithium causing kidney failure.  Please, take care and keep us updated. 

[cassandra]

Welcome to the site Debbie

     


Take care, Cas

[Poppylicious]

  Debbie.

[Angiepkd]

  Debbie!  So glad you found this site.  Many great people who have experienced it all.  I can relate to the doom associated with the fistula.  Prior to having the surgery, there wasn't such an in-my-face reminder of impending Dialysis.  The good news is that D isn't the end of the world, although it may seem like it before you know what it's like.  I have been doing home hemo with NxStage for 6 months, and it is not so bad.  It is time consuming, and there are days that I dread it, but it has simply become a routine here.  I feel good most days, and for that I am thankful.  I was feeling really lousy as my function got below 10%, and D is a huge improvement.  The needles don't hurt anymore and the time passes quickly watching movies and playing on my IPad.  I hope you keep the function you have left for a very long time!  Looking forward to hearing more from you.  Ask questions and search the boards for answers.  It really does help!  I lasted at 18 GFR for several years.  Wishing you the same!  You can do it!

[tigtink]

Thank you for the warm welcome!!  Angie, I really appreciate your sharing your experience.  I hope I can manage to hold off dialysis for a few years as you did, but it helps to know that you and others have managed to survive dialysis and still live your lives.  A part of me was screaming inside when they wheeled me into the operating room for the fistula surgery.  Boy did I want to tell them to call the whole thing off!!  But now I am getting to a place where I am proud of my "thrill" and glad to have that behind me (though I know there still could be complications).  On the one hand, the big scar on my arm is a constant reminder that I will eventually need dialysis or a transplant.  On the other hand, listening to the bruit with my stethoscope is a powerful reminder of the pulse of life that still flows through me.  Thanks so much for the encouragement!!

[Angiepkd]

You will find much encouragement here, and experience.  For me, the worst part of waiting for the dreaded "you need to start dialysis" conversation with my doc, was the actual waiting.  I hated being in limbo.  It occupied a lot of the time I should have been enjoying my dialysis-free days.  Not knowing when or what to expect drove me crazy.  I couldn't plan anything, and my standard answer when asked to commit to a trip or event was "I can't make definite plans. I may be on dialysis".  Looking back I could kick myself!  Reading other people's experiences on this site helped me so much.  At least I had an idea of what to expect.  When I went for my first training/treatment day, I came home feeling so relieved.  It wasn't bad, and I felt a little better.  The next day, better still.  Don't get me wrong, I have had my share of troubles.  My fistula has had several issues, I have struggled with my button holes, and there have been a couple of times I got sick on my machine.  Even with all of the issues, it beats the alternative!  I am hoping for a transplant, but can do dialysis until that happens, or as long as I need to.  Take care of your access, since it truly is your lifeline!  If you are eligible for transplant, get working on the testing and paperwork required.  Hoping you stay healthy for many years!  Best of luck to you!

[tigtink]

I agree about the waiting.  It is so hard to go on and live a normal life with the prospect of dialysis hanging there ticking away like an alarm clock waiting to buzz.  And the doctors just cannot predict the rate of decline.  I'll try to take your advice and not put my life on hold in the meantime, though it's not easy.

I had my follow-up appointment yesterday with the surgeon.  He is very pleased with the fistula.  I just have to keep doing the exercises and go back in 6 weeks for another ultrasound.  So far so good--no pain or numbness and a good strong thrill.

[Icare]

   tigtink