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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To catch up a bit. I was hospitalized about a month ago following another situation like the original back in August two years ago (wow where did that time go?!) and was there for 4 days. The CKD had gone stage 5 again and evened out to 4 after a blood transfusion and a ton of iv meds and stuff. Not fun.
The "blessing in disguise" thing came out in full force this time. When they ran an ultra sound on me in the hospital they found a lesion (probably a result of CKD) and a mass. They don't know what it is. So I went in today for an MRI to have a closer look. They think it might be cancer. So if I hadn't had the CKD, I and been hospitalized, I would have never know about this thing. So, finding it early and getting a scan means that if it is cancer, we can likely treat it quickly before it gets out of control. Weird, wild stuff eh? I get the results back on the 21st, and then go see a hemoglobin specialist after that since my blood count is so low.
Whew! So I'm a mess, but when was I ever not a mess?!
So onto happy news.
My critters are doing great. Dude turned 18 in May and Howard the peeg is now 6!
So tell me some of YOUR good news!!
Thanks for the update Finzz, nice to see you pop in
Fingers crossed for your appt next week.
Thanks for the update Finzz, nice to see you pop in
Fingers crossed for your appt next week.
i'm glad we've had a real spring and every chance i get to enjoy some nicer weather.
aww
Thanks for the update Finzz, nice to see you pop in
Fingers crossed for your appt next week.
i'm glad we've had a real spring and every chance i get to enjoy some nicer weather.
Another bit of good news. A RNP called me today to schedule a time for us to discuss my dialysis options. I have been very much against it and was told at one point I am not even a candidate because I am too thin. Well, I think because of my progression they want me to try it. I am scared but I want to hear what they have to say about it.
Thanks so much! I hope I have good news to report!
Yes! It has been so amazing outdoors.
Another bit of good news. A RNP called me today to schedule a time for us to discuss my dialysis options. I have been very much against it and was told at one point I am not even a candidate because I am too thin. Well, I think because of my progression they want me to try it. I am scared but I want to hear what they have to say about it.
Glad you're getting to enjoy the gorgeous weather and thank you for updating us
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Glad you're getting to enjoy the gorgeous weather and thank you for updating us