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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You are both awesome, thank you so much!
I have been doing ok the past few days and I like that I have had the desire and energy to be on SD!
Happy Father's Day to all SD lounger Dads!
I have been doing ok the past few days and I like that I have had the desire and energy to be on SD!
Happy Father's Day to all SD lounger Dads!
Finzz
Follow up on MRI for kidney cancer scan 6/21 @ 2:40
Appointment with Hemo Dr for scheduling regular blood transfusions August 1st 11:15 am
Follow up with Nephrologist August 29th 2:30 pm
Trying to schedule Dialysis with specialist for ASAP, but we are playing phone tag
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All you needed all this time was an answer? I have that!
A: Finzz
Q: Who is the most awesome?
A: Finzz
Q: Who is the most awesome?
A: Finzz
Q: Who is the most awesome?
Well. The MRI shows the mass has grown by 1 cm since they discovered it in the hospital. They still don't know what it is. They won't biopsy it because they think it will screw up my kidney/cause internal bleeding. So in the mean time...more waiting. I will do another scan in 3 months and try to get on the donor list. Other appts all stand as above.
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Well. The MRI shows the mass has grown by 1 cm since they discovered it in the hospital. They still don't know what it is. They won't biopsy it because they think it will screw up my kidney/cause internal bleeding. So in the mean time...more waiting. I will do another scan in 3 months and try to get on the donor list. Other appts all stand as above.
Hoping for a good report in a few months.