Slowly getting there - still scared

[graciekycats]

I love this site and really appreciate you guys!  You ROCK!
Just an update on me - scheduled for AV fistula Oct 15.  Had vein-mapping, chest x-ray and EKG done.  I have not met vascular surgeon yet - mostly talk to his APRN.  I was told surgeon would create fistula in dominant right arm above the elbow.  I cried like a baby all weekend (as I've done since getting the "news".)  I went back to APRN and told her  - absolutely not the fistula must go in left arm.  I am totally right hand dominant.  That it would negatively effect my quality of life at least until I start D.  She said she would tell surgeon that and if it can't be done that way she would call me.  Sometimes this mouse has gotta stand up and roar. So far no call.  I am already exercising with a squeeze ball on left hand to try an build up the strength.  I talked to my Neph's nurse and she said my GFR was 17 on last test a week ago.  At beginning of Sept it was 14.2.  Creatine still high at 3.35 and Urea Nitrogen at 39.3.  Both still below recommended level to start D per my Neph.  They only told me low sodium diet.  Everything else is in normal range including sodium.  Looks like hypertension is getting the best of me.  I am on Amlodipine and Clonidine for HBP (148/78) and Lasix as needed.  I cannot tolorate ace inhibitors or beta blockers - bad reaction to Benicar.  Left Kidney had a blood clot stuck in artery that killed it.  So right kidney is now slowly giving up.  Most days I feel okay (not 100%) occasional headache, appetite okay, cramp in left calf now & then.  I do take considerable amount of vitamins like garlic, magnesium, zinc, D3, B Complex, E, Nettle Leaf,  CoQ10, Alfafa, Nattozimes, Serrazimes.  I figure if my labs are okay even if GFR goes down and I feel okay then wait on dialysis.  I am looking to do in-center about 30 miles away (closest).  I really like the idea of PD but I have numerous indoor cats with litter boxes. I try to keep house clean but I know pet hair & dander are no-no.  Not a sterile environment. What do you guys think? TMI?

[kristina]

Sorry graciekycats that I did not see your post earlier ...
I am in a similar situation like yourself in end stage kidney failure,
but I had no fistula and nothing else "put together" as a preparation for the inevitable,
because of my drug-intolerance and alllergies to anything and almost everything:

Whilst I was an in-patient in hospital, I had once a little tube inserted in my arm,
so that doctors and nurses get more blood quicker and easier from my arm,
but the same arm began to swell into intolerable proportions a few hours later,
because of this little tube being inserted...
Since then doctors have become very shy to put anything into my arm
(they still have the record of the aforementioned episode of my allergic reaction in my medical file....)

My only chance left is an eventual kidney-transplant, but I have no direct genetic family to approach ...
And my blood group is not compatible to my husbands blood group, but my husband has offered
to donate one of his kidneys in exchange for me to receive a kidney from a donor
whose blood group corresponds better with my own blood group.
But because if former cancer-issues, I can only be put on the transplant-list in December 2014 ...
Until then I just have to try my best to "hang on" as best I can ...
(unfortunately my kidney function has dropped to 7%, no dialysis)...

I also cannot tolerate beta-blockers and I am on the same medication for my BP like yourself.

I agree with your healthy diet (I  do the same and I am a vegetarian), even though I am not too sure about the garlic,
because I have heard that garlic is very difficult to digest and I am under the impression,
that in end stage kidney failure, the food we eat needs to be very easily digestible,
because the body is so busy to assist the failing kidneys in their difficulty
to go through their struggle to function and keep pre-dialysis...
I have researched and noticed that very easy digestible food is best...
...and that is when a vegetarian diet can assist considerably...
to avoid any distress to our fragile pre-dialysis-body...

Unfortunately I can't give you any thoughts about hygiene and your pet, because I have no pets
(I live in London and life for pets in London is not a very friendly life...
(the countryside provides a much better life and much more fun for pets)
... and I do hope very much that someone with pets who is also pre-dialysis can help you with this.

Best of luck to you from Kristina.

P.S. Perhaps I should also mention that apart from my very strict vegetarian diet
and drinking fresh water plus one cup of camomile tea & one little cup of fresh peppermint tea every day
(I really strictly keep to it and I don't kid myself, because life in ESRF is too short for that...)
I also drink every day at lunch-time one glass of a special drinking water mixed with the juice of half of a fresh lime.
This drinking water comes from a special place and has been used for centuries especially for unwell people,
but because this water is so very costly to buy every month, I can only drink one glass of it every day...
I have no idea what has really assisted me so far to be in definite end stage kidney failure
for over eight years without any dialysis yet...  but I suppose everything little helps a bit...

[Rerun]

I know you got your fistula created and are doing well on the pain meds.

           

[Deanne]

I was on PD with cats and dogs. They all slept on the bed with me (past tense because I received a transplant). My dialysis nurse knew about it. One my issues on dialysis was that one of my dogs often had to go out  during the night, so we talked about the quickest way to disconnect and run for the door. When the dog had to go out, he had to go NOW. If I wasn't quick enough, he'd pee in bed. My nurse told me to make sure the area where I did dialysis (my bedroom and associated bathroom) was clean and to kick the cats and dogs out and close the bedroom door while I connected or disconnected. In reality, that didn't happen. Both dogs were usually on the bed. One under the blanket where she normally sleeps, and the other at the opposite side of the bed. I don't know what would have happened long-term / if this would have been a problem. Luckily, I was only on dialysis for about 6 months. In the meantime, I kept my bedroom clean and made sure I washed all of my bedding, including my bedspread, every week.