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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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Wishing I could cook/prepare something you could enjoy.
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
Wishing I could cook/prepare something you could enjoy.
You are a sweetheart to think of me
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.
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.
I'm wondering, is it possible for you to have dialysis at home, rather than at a dialysis center? The reason I ask is because someone I know had a successful kidney transplant several years ago, but then that kidney started to fail, so right now he's doing dialysis at home. All of the supplies are delivered to his home. And it's a lot of supplies, but at least he's in the comfort of his own home during all those hours of dialysis.
I hope this is an option for you, and that maybe not having to spend hours at a dialysis center every day would influence your decision to have dialysis. It's something to think about. Ultimately, you'll decide what's best for you and what you're most comfortable with.
I'm wondering, is it possible for you to have dialysis at home, rather than at a dialysis center? The reason I ask is because someone I know had a successful kidney transplant several years ago, but then that kidney started to fail, so right now he's doing dialysis at home. All of the supplies are delivered to his home. And it's a lot of supplies, but at least he's in the comfort of his own home during all those hours of dialysis.
I hope this is an option for you, and that maybe not having to spend hours at a dialysis center every day would influence your decision to have dialysis. It's something to think about. Ultimately, you'll decide what's best for you and what you're most comfortable with.
The surgeon told me today that I need to gain weight (they have lowered it to 30 pounds) and that I can't do it from home for at least a year until that happens. They want to monitor me.
It would be nice to do it from home as your friend does! I wish him well
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.
That's a lot for you to deal with and I am sorry.
On the plus side.. you have tons and tons of great friends here to walk with you through it all.
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No, you are never whining here.
The surgeon told me today that I need to gain weight (they have lowered it to 30 pounds) and that I can't do it from home for at least a year until that happens. They want to monitor me.
It would be nice to do it from home as your friend does! I wish him well
Anyway, any dialysis is better than none, transplant is the best. If you have a chance/choice - go for it.
Any questions - feel free to ask, I will be happy to answer. Personal experience.
https://www.youtube.com/watch?v=Ssq8wHA
The surgeon told me today that I need to gain weight (they have lowered it to 30 pounds) and that I can't do it from home for at least a year until that happens. They want to monitor me.
It would be nice to do it from home as your friend does! I wish him well
He never mentioned having to go to a center for dialysis, so I'm not sure if he ever had to go. It seems that he has done peritoneal dialysis from home from the get-go, but I could be wrong. He's doing as well as expected.
I'm sorry to hear that they said you must have dialysis in person for at least a year at first. I'm wondering if maybe at one point, if you're doing well with your in-person dialysis, that they will allow you to do it at home if a nurse is there to monitor your dialysis at home. It may be possible.
like the other said no need to apologize for "whining". we are all #teamfinzz and are here to support you as much as we can, which includes being some friendly "ears".
disappointing news, i know, but take your time to making the decisions that are right for you. we love you!
p.s. i'm very glad you're feeling well enough to wander in here more frequently. continued best wishes!
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.
That's a lot for you to deal with and I am sorry.
On the plus side.. you have tons and tons of great friends here to walk with you through it all.
Anyway, any dialysis is better than none, transplant is the best. If you have a chance/choice - go for it.
Any questions - feel free to ask, I will be happy to answer. Personal experience.
https://www.youtube.com/watch?v=Ssq8wHA
Yessssssssssssssssss
He never mentioned having to go to a center for dialysis, so I'm not sure if he ever had to go. It seems that he has done peritoneal dialysis from home from the get-go, but I could be wrong. He's doing as well as expected.
I'm sorry to hear that they said you must have dialysis in person for at least a year at first. I'm wondering if maybe at one point, if you're doing well with your in-person dialysis, that they will allow you to do it at home if a nurse is there to monitor your dialysis at home. It may be possible.
like the other said no need to apologize for "whining". we are all #teamfinzz and are here to support you as much as we can, which includes being some friendly "ears".
disappointing news, i know, but take your time to making the decisions that are right for you. we love you!
p.s. i'm very glad you're feeling well enough to wander in here more frequently. continued best wishes!
Thank you Aces! I get so much comfort from you all and I appreciate it so much. How have you been doing?
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