on dialysis 22 years

[charmed]

On dialysis 22 years, one failed tx, ABO incompatible. had enough.
I use sauna as a soft fluid remover so nothing to come off once on dialysis. But machine still tries to take off upto 800ml, even when you tell it to only take off 300

[Rerun]

Hi Charmer,

I'm so glad you found us.  I started dialysis in 1987 then got a transplant for 17 years and have been back on the machine for 8 years.

My vascular system is so messed up that the fluid pools in my face and I can't stand it and start to panic.  So I too go the the YMCA Sauna or if it is hot outside I put my car in the sun and sit in it and sweat some of it off.  But, I always at least have a liter to pull during dialysis.  My BP is so low they still can't get it off sometimes.  So I'm on Midodrine to raise my BP.  Sometimes it works and sometimes it doesn't.  I too am sick of the whole dialysis scene.  I don't want to die from fluid overload.  Big fear of that.

Tell me a little more about you.  Is your BP normal?  Why do you use a Sauna?  Do you have a fistula?  What state do you live in or country?

Rerun, Moderator   

[lmunchkin]

Wow 22years!  You have done it a long time. I can only imagine the toll it takes on everybody. Wish I had all the answers. Unfortunately I do not.

Keep plugging away, is all I can say!  And Welcome Charmer!
lmunchkin

[deniferfer]

Hey charmer,

I been doing D now 15 year and it is not easy I know. I did PD for 14.5 years and now I'm on hemo for i hope a short time and to go back to PD. Only advice i can give that helps me is a good sense of humor and trying to stay positive with a not so positive illness. But i can tell you that your in a good place her. I join just over a year ago and i like that you can talk about or ask anything. Those days you need to vent and have had it with the world people here will listen and support you!!

[charmed]

Hi Charmer,

I'm so glad you found us.  I started dialysis in 1987 then got a transplant for 17 years and have been back on the machine for 8 years.

My vascular system is so messed up that the fluid pools in my face and I can't stand it and start to panic.  So I too go the the YMCA Sauna or if it is hot outside I put my car in the sun and sit in it and sweat some of it off.  But, I always at least have a liter to pull during dialysis.  My BP is so low they still can't get it off sometimes.  So I'm on Midodrine to raise my BP.  Sometimes it works and sometimes it doesn't.  I too am sick of the whole dialysis scene.  I don't want to die from fluid overload.  Big fear of that.

Tell me a little more about you.  Is your BP normal?  Why do you use a Sauna?  Do you have a fistula?  What state do you live in or country?

Rerun, Moderator   

RERUN -
I haven't done this before so hope I am posting correctly. So I am on minoxidil ( the sledge hammer of BP tabs) only a little 2.5 BD and Metoprolol Beter blocker for my racing heart, ( not because I am in love) Before I tell you a little about me, have you tried coming off the BP tabs and drying out to lowest possible dry weight? this would have to be done in hospital. I say this because the last time I went into hospital they dried me out, ( I like to run heavy - maybe a kilo or two above dry weight - I have never gone low - under you know what I mean) In so doing my BP dropped and got to a point that I Only needed one metoprolol a day 50mg. I came off the rest.

As for me I am with the Hammersmith trust in London UK, I had a fistula that I needled at home for 17 yrs. during the tx someome put a BP cuff on it a blew a hole in it so when I came round it wasn't working anymore   so got a line in now trying for a new fistula in right hand ( im right handed)

When I go sauna its a hit and miss thing, I go sauna for maybe 15 mins, sit outside sauna for maybe20 mins then steam room 15 mins,  and dry out after. I drink loads: - Somehow I get away with this and only ever have 500mls MAX to come off. I monitor myself so if I feel dizzy I know I am hitting my dry weight.

When I said I had enough I have never dropped off a day but today is my second in 22 yrs.. not coping anymore..
Hope this helps..
tell me if im talking too much.

[Rerun]

No, you are not talking too much.  You are very interesting.  I over heard someone talking at dialysis that a certain patent's blood Pressure gets so low they have to put them on Oxygen ...... wait a minute.... why haven't they tried oxygen on ME for God's Sake I'm struggling every treatment!  Grrrrrr   So I said "why don't I get Oxygen"  they said..  "Oh I guess we could try that.  OMG WHY do I have to ask for it.  I had to FIND Midodrine and now Oxygen.  I think they just want me to just die and be done with me.  I've become too much of a problem and they have to get up from their MOVIE and take care of me.

           

[CebuShan]

     Charmer!
Glad you found us!

[cassandra]

Welcome to the site Charmer

   

Take care Cas