Joined May 2005
Moderator since 2008
Forum Thread
Stage 4 kidney disease no OT
August 29, 2021 at
08:45 PM
in
Question
I have stage 4 kidney disease. It was a surprise...but not really. I have been stage 3 for a long time, and ignored all of the warning signs like a dummy just thinking it would go away or get better. Nope 
I was hospitalized for 4 days recently and I guess damn near died at some point. A lot of it is a blur. I don't even really remember much about how I got there, just waking up and being really confused. It was awful.
I'm home now and feel.....fine? I guess "lived with stage three for years and never really thought about it" level of fine anyway. That is to say: itchy, twitchty, foggy headed and all of the other goofy stuff that comes with KD that you sort of get used to.
So. Stage three to stage 4/5 borderline, 4 days in hospital, pushed back to stage 4, which is where I am now. I am supposed to get my blood checked monthly and visit a specialist monthly.
But. I don't want to do it. I don't want a transplant or Dialysis if it comes to those things. I'm almost 50. Give a healthy kidney to a young person that needs it.
This post is rambeling as all and probably makes no sense. I am just trying to sort my thoughts.
Anyway. Sorry for the no OT thing. I am hoping to get feedback from any other loungers who have kidney disease of any stage, and if you have later stage, how you have been coping with it.
thanks for reading :hug
Edit: a beautiful SD friend Pm'd this to me, and I am adding it in on 10/26
One day at a time?
Mantras?
"I listen to my body and give it what it needs."
"Every cell in my body is alive and beautiful."
I was hospitalized for 4 days recently and I guess damn near died at some point. A lot of it is a blur. I don't even really remember much about how I got there, just waking up and being really confused. It was awful.
I'm home now and feel.....fine? I guess "lived with stage three for years and never really thought about it" level of fine anyway. That is to say: itchy, twitchty, foggy headed and all of the other goofy stuff that comes with KD that you sort of get used to.
So. Stage three to stage 4/5 borderline, 4 days in hospital, pushed back to stage 4, which is where I am now. I am supposed to get my blood checked monthly and visit a specialist monthly.
But. I don't want to do it. I don't want a transplant or Dialysis if it comes to those things. I'm almost 50. Give a healthy kidney to a young person that needs it.
This post is rambeling as all and probably makes no sense. I am just trying to sort my thoughts.
Anyway. Sorry for the no OT thing. I am hoping to get feedback from any other loungers who have kidney disease of any stage, and if you have later stage, how you have been coping with it.
thanks for reading :hug
Edit: a beautiful SD friend Pm'd this to me, and I am adding it in on 10/26
One day at a time?
Mantras?
"I listen to my body and give it what it needs."
"Every cell in my body is alive and beautiful."
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It is about the size of a dime
Thank you Schoobs!! How are you doing?
Right?! I said the same thing
It is about the size of a dime
well, you know the saying about giving an inch and taking a mile, I guess
Thank you Schoobs!! How are you doing?
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thank you two of the coolest of the cool kids! I hope you all are having a good weekend
Hello my sweet friend! Thank you, I have missed you too!
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It was discouraging. There are a few scenarios and they all involve more waiting. I need to gain 40 pounds (I weight 65-70) to be eligible for transplant and/or dialysis. The transplant can be done if I m cancer free (again, more waiting on the 2nd mri) and if I meet the weight and if I can get a donor. A living donor takes three months; a cadaver is 3 years!
The other scenario is sevral different kinds of dislysis all of which require weight gain, lots of needles and just all kinds of yuckiness. I am to meet with a vascular surgeon on the 6th to see about "exapners" in my veins and arteries.
None of these sound appealing. I may just continue my original plan which is to do nothing at all. 2 years ago they told me I would be dead in 6 months and I am still here, so I really am leery of everything they tell me!