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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While the news doesn't sound good, at least there are some options to consider. That's better than no options.
Take some time to think about what you want to do and what you feel is best for you and your family. It sounds like it's not something you have to decide today, tomorrow, or even next week. But we're here to listen if you need to WBR.
awww, oh no, poor guy
I'm sorry to hear about someone you know who's transplant only lasted 2 weeks. That's very unfortunate. I hope his next transplant is a success.
#GoTeamFinzz
#GoTeamFinzz
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I hate you're going through this.
I met with a vascular surgeon to discuss dialysis options. I was very much on the fence about it anyway and now more than ever I am feeling a whole lot of "nope". This was my first choice and the one I want to go with.
They want to put a catheter in my belly and be hooked to it forever or until I die. I will need to go into the center up to 8 hours a day 5 days a week. Another option (one that seems even more sucky) is to fit one near my heart (!!!!) or put expanders in my arms for the veins to grow over and it leaves a permanet plastic thing under your skin, very "Aliens"-esque.
So..yeah, no to all. At least right now. I am just scared and tired and confused. Sorry to whine.
ps edit to add this does not even include the whole cancer thing or a transplant. I am more inclined to get on a transplant list but again...oh hell, I just don't know.
So obviously dialysis is pending… I assume you're younger. What about Peritoneal dialysis which is done at home while you asleep. Not easy but an option. Get on transplant list. The science is advancing day by day. Let us know
That's all, I popped in to look for this thread and say hi.
I hope the support around is helping you get to where you want to be in treatment and comfort.
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finzz sighting