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."
786 Comments
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Thank you!! This is exactly how I feel. I am not trying to hurt my loved ones by avoiding all of this treatment. It's just that I would rather have quality of life over quantity. I don't want to be always hooked to needles and machines. I am so tired of being poked and prodded!
I guess I just want to see where the road goes.
I guess I just want to see where the road goes.
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!
You are your own best advocate and you know what's best for you.
I thought I only had to give you 30 lbs...now it's 40...that's ALMOST how much I should lose. Why can't they do a fat transplant? I'd line up to volunteer
I love the down hill ski race to the bottom which is the Lounge!
You are your own best advocate and you know what's best for you.
I thought I only had to give you 30 lbs...now it's 40...that's ALMOST how much I should lose. Why can't they do a fat transplant? I'd line up to volunteer
SD just not would be the same place with out this little corner of the world, would it?
My husband said the same thing
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OMG, HAHAH!! I totally should, just to see the utter lack of comprehension!
I am totally gonna do it!! Might as well have a bit of fun, right?
We want TONS of fun.
We want TONS of fun.
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!
You have this whole big gaggle of goofballs for support.
You have this whole big gaggle of goofballs for support.
Thank you Schoobs! I know you understand and can relate to this
Dr apt is tomorrow at 1.
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Anyhow - I just recently stumbled across this information about you and your health issues. I just wanted to say that I wish you the best and I (like everyone in the thread) hope things turn out great for you. Stay strong and positive. Sending lots of good vibes your way
Take care!
Puf