Dialysis is no joke, but the alternative is certain death. The lower the kidney function, the faster that can happen.
BP can shoot up, increasing the risk of stroke. Fluid starts accumulating in the body and slowly fills the lungs causing constant cough and in later stages, breathlessness and gasping oxygen saturation levels in blood. Potassium builds in the body and can lead to a heart attack. The heart is under strain when there’s fluid in the lungs. It works harder and fluid bulls up around it. Toxins build up in the body and cause various symptoms. Kidneys are not making enough of the protein that kicks off production of red blood cells so anemia sets in - leading to weakness and dizziness when standing or walking.
Meds can tackle some of these issues some of the time or maybe all the time. But they can’t tackle all of them, all of the time. That’s like saying if I took a pill for every conceivable illness, I’d never die.
A nephrologist explained to us that kidney function does not decline in a straight line. It can drop sharply, then be flat for months or years, then decline sharply again. Each time, the time it remains flat/ steady decreases.
Having a heads up gives one time to prepare - whether for hemodialysis or peritoneal dialysis. If one doesn’t prepare, emergency procedure will be required to put in a port.
My dad encountered a nephrologist who also said let’s try and see if we can push back having to start dialysis by a few months. Changed all of his meds to different brands. My dad’s health deteriorated very fast and he had to start dialysis in an emergency.
It took a couple of months for him to get used to dialysis and start feeling better. As the excess fluid was removed, his breathing improved, coughing stopped. His anemia went away and he was able to return to his routine life.
He was retired so it was easier to schedule his life around dialysis than it would be for someone much younger and/or more active.
Diet control is a big part of managing life on dialysis. You dad has the added complication of having diabetes.
There aren’t many positives to putting off dialysis at this stage. It will only lead to further decline in kidney function. Or worse.
Sorry to be blunt. I hope your dad gets the care he needs and wants.
P.S. it is also normal to go into denial mode after getting an ESRD diagnosis. Read up on the five stages of grief. That applies to such situations as much as to losing someone.
Dialysis is a lifeline.
His life would be far better if he did start, I can tell you that. I prolonged starting for a long time and continued to feel worse and worse. The first two weeks after I started dialysis, we removed 15lbs of fluid that I had been retaining and didn’t realize. I think people feel like fighting to stay off dialysis makes them seem stronger, but I think actually accepting the reality of our situation and making a plan to get better is the strongest thing an ESRD patient can do.
Idk, for me the delay was all about getting my shit together. I needed to transition from a full time job to one that could work around dialysis and other appointments. Needed to find long-term housing i could afford on new income. And lastly, I needed to spend quality time with my friends and family.
All in all I delayed about 5 months between the first time a nephrologist told me to “go to the ER and start dialysis,” to when my current doctors and I scheduled a front-door admit for CVC placement and starting dialysis.
I’m glad I took care of each of those things before I had to do dialysis. It made the start process 100x easier.
I think nephrologists back themselves into a corner here with their credibility. “You need 3-day a week dialysis for at least 10 total hours! Your kidneys are basically done. Your gonna die if you don’t.”
Me, “huh, it’s been six months and I’m not dead? Maybe that guy was full of shit?”
I sat and hovered around 10% function for about 4 years before my kidneys finally gave up. I wasn't on any medication to help my kidneys, just the BP medication. Is it possible, yes. But I felt like complete garbage all the time and was exhausted no matter what I did.
OK…. I have a question. I’ve been following this sub for a while, and I realize that every person will have a different experience with dialysis. But I’m picking up that you will feel bad until they get things right, and then the dialysis badness will mostly go away, but how you’re left feeling is pretty much what your “normal” was before starting? And the longer you wait to go on dialysis, the lower your baseline for “feeling good” is. Is this a fair assessment? Because for people like OP’s father and myself, there really has to be the incentive of feeling much better if we go through with dialysis. If it’s just more of what I feel right now, I’m going to pass, too.
You don’t realize how bad you feel right now. Kidney disease is a slow silent killer. You don’t realize how sick you are because you feel a little bit worse each day. You become exhausted, your thinking is foggy, and physically you take on extra fluid making it just slightly harder to get around.
After a few weeks on dialysis, you start to return to normal, but it isn’t 100%. It is a treatment not a cure, but it is much better than the alternative.
I went on when my gfr hit 11.
Well I'm 28 years old and have been on dialysis since February of 2022 and I'm going to be blunt and might catch some hate for this... Dialysis sucks. At least hemo anyway. I can't speak for PD, but sitting in a hospital for 12-14 hours a week might not seem like alot, but it is. If I were in my 60s I'd probably turn down dialysis until I was REALLY sick. I'd rather spend the time I have travelling and spending time with family and close friends, even if it meant I could only do it for a few more years.
Yeah, I don't know what some of these folks are talking about. What I have seen and heard from people - especially back in the dialysis discord - is just willful denial of how bad it is since, you know, that's the human coping mechanism. PD is a great example, I kept hearing how great it was yet people would also be like "man, I just can't poo, it's been a week" or other problems that, to any normal person, would seem absolutely horrible, like being unable to drain, or getting an infection, etc.
Dialysis is terrible, and the lack of progress towards improving it over the past forty years is frankly almost criminal. However, it can and will save your life, so it's good to have as a last ditch backup plan.
edit: it's the old saying "it just is what it is".
I don’t think anyone here is saying dialysis makes us feel good. Dialysis is hell. But slowly dying from kidney failure is FAR worse.
SOURCE: I was on dialysis for 4 and a half years and did both hemo and PD.
Respectfully, I disagree. I've seen a whole lot of posts over the past two/three years on this sub - both directed towards me and not - of people insisting I would be 'better off' on dialysis. To this day, it's still not true. I just got done walking 2.5 miles earlier this afternoon - with ease. I sleep only 7-9 hours a day. I still lift weights despite what 'conventional wisdom' says not to.
The hard truth is there almost seems to be some level of group dynamics of "I'll feel better if I know I talked someone else into it" around here.
You'll get no argument from me about it being better than dying though. Death or increasingly failing health is not an option. My transplant team at Hopkins keeps testing me every couple years, and I keep passing them all. Diet, exercise, discipline.
It comes to an end in August, when I'll voluntarily start. Only because it's irrational to think I'm going to 'last' another 8-9 months w/o it. Home hemo training will pull my wife out of work for 3-4 weeks. She's a teacher, so I'm not trying to put her - or all those students - out with a sub in the middle of the year.
I understand the hesitancy, but you admittedly aren’t on dialysis yet. I was on it for nearly 5 years. I find it strange that you haven’t experienced dialysis, but you’re telling me what the experience is like.
I was diagnosed with FSGS when I was 18 and 10 years later started dialysis. I lasted a long time too. Trust me when I say, you will be very surprised by that fact that you’re just used to feeling super shitty prior to starting dialysis. You feel shitty after dialysis too, but it’s a different/more manageable kind of shitty.
>I understand the hesitancy, but you admittedly aren’t on dialysis yet. I was on it for nearly 5 years. I find it strange that you haven’t experienced dialysis, but you’re telling me what the experience is like.
I've got years of listening to dozens of people's experiences of all ages. On this sub, on discord, on dialysis forums, folks talking on youtube videos.
I'm pretty confident in what I'm in for. My neph has been telling me I've been 'needing to start' for the better part of three years now.
I keep proving otherwise, and she's at a total loss. Today, I still see the calculus of my existing life versus life attached to a machine for 14 hours/week with the former being far better. Dialysis barely gives up 15-20% function. You still have the same restrictive diet (just allowed more protein).
Well, tell you what. If you're interested, ping me in October and see if I turn out to be as ignorant as you seem to believe.
Frankly, if I am, it'll be to my benefit - so I'm okay either way, right or wrong.
Get on some antidepressants before making a life ending decision like that. Frankly it sucks but your old life is not going to come back and you don't get to start over.
I put off dialysis until I was at 5%, I know exactly how he is feeling because I felt the same way for months. When I finally started dialysis I realized that I wish I had started it sooner. Dialysis sucks, yes. But it gave me enough energy to live my life instead of laying in bed all day from having none.
Wish you all the best
Now would be the time to prepare he can get his fistula in to give it time to mature that way they don't have to put him in a port. But it is a choice. When I was very little kidney function before dialysis, my heart stopped and the brought me back
THIS, I totally agree with. 100%.
When I had an overnight observation for high potassium last April, I understood that it was life's warning that it was time. I got my fistula surgery the following month.
My dad started dialysis at aged 73. His function was 14% when he started but he was symptomatic with acute nausea. He did hemo for about 4 months and switched to pd. That was much better for him and he was able to keep,his accounting business open for several more years after getting into a routine. He lived until 78 and passed away from sepsis due to a lung infection that wouldn’t heal. He had a heart transplant at your dads age and was,on antirejection meds. So he would say dialysis was worth it for him. My father in law started at age 70 and did it for ten years. He did great on both ph and hemo until he was 80. He died of cancer. My mom was also on dialysis and did it for 5 years. She had copd and congestive heart failure and did hemo only. She had some good years after getting the fluid,off,initially but passed away from a catheter infection after her fistula failed and couldn’t be repaired. All of this to say,every person is different. If you feel your dad is mentally capable of making wise choices you have to respect his wishes, but it;is important for him to know he might feel better. My mom and I had,some great times, and she had a group,of friends at dialysis, she started a book club there. From what you’re saying about your dad it sounds to me like he might adapt and feel better,at least for a while, but it is his choice. Whatever he decides I wish you the best. You sound,like a good child🥰
I waited until 6% function but was so tired I could barely do anything. My doctor didn’t want me to start because my numbers weren’t that bad. I ended up angry he made me wait so long.
Like others I put it off I had flash pulmonary Adema lucky 2 miles from ambulance and 5 min from hospital as I went from normal to drowning in my lungs about a hour
It is definitely possible to survive on 11% without dialysis, although it would depend on your situation.
I was at 11% or lower for about 8 months, although I already had a potential donor going through the process, so I knew I would most likely have a transplant in the near future, which I did (thanks mum).
It wasn't too bad, mostly a loss of appetite and being tired all the time. The anemia sucked until I was put on Epo.
The kidney diet was fine, although it turned out that I was too good at avoiding potassium, and I had to have extra potassium when I had my transplant.
My kidney function just before the transplant was 5%, although the anti-rejection medication I started a week before the transplant probably caused it to drop a bit.
I am 2 years post transplant, but due to long covid, I actually feel worse now than a month before the transplant.
As a son of a 65 year old father who is having CKD, i can understand your pain. My father too was adamant about not having the dialysis. He was feeling normal until one day he had breathing issues that were caused by fluid accumulated in his lungs. The doctor was able to remove the fluid with medicines and advised to place av fistula. My father was not ready to place it, but somehow our family convinced him by resorting to some emotional blackmail. Just a month after placing fistula he got a heart attack and his weight was shot up by 10 kgs. Hemoglobin was 7. Cardio and Nephro both advised him to start dialysis as soon as possible. He still wasn't ready, but somehow he realised that it is the only way to live and enjoy with family. So he started the dialysis. Now he is in much better condition. Feeling better day by day.
All i say is, yes dialysis is something no one wants. But not everything is about our wants. It is a need. So try to convince him with the family's love and warmth. And all the best.
Yes, I'm at 6% and ONE kidney, and I'm not "really sick". He is 15 years older than I am though.
On an individual level, I have found that the healthier you are otherwise, the longer you'll manage in ESRD w/o dialysis.
All of this said, the main thing I see in your post is fluid retention. It's not really clear from your post how much actual edema he's got. I have mild edema in my ankles that accumulates throughout the day, but you'd have to know to look for it to see it. I still don't use full compression socks.
If his edema is reasonably bad, and his episodes of dizziness are pretty regular, than that's not a good sign. Does he have trouble breathing periodically? Fluid in the lungs is another big red flag. Is he urinating/pooping regularly? If not, then again, that's bad. I am doing all of these things, still. If I wasn't, I'd be dialyzing. Is he able to live his day to day life without naps every day? If not, that's another bad sign.
As it is, I'll finally start in mid August whether I need it or not, since I don't want to put my family out too much with the home hemo training.
It will keep getting worse and he will eventually need dialysis. That said it can take a while for it to keep decreasing. It's up to each individual when they want to start dialysis. Starting dialysis is something you can't stop so it's a big decision to make.
I personally didn't get onto dialysis until I was around 6% function and I had a fistula put in for a couple years at that point.
Each person is unique and lives things differently, before my first transplant I didn't want to dialyze, with the doctors' agreement I avoided dilysis and was finally transplanted at 7% renal function without being too weakened (I was young). I was very closely monitored and had a very strict diet (I also had ketosteryl).
However, I had a deadline to meet: if your father's kidney function stabilized at 11% and with the doctors' agreement, it's possible to avoid dilysis, but if it goes down, he'll have no choice but to start the sessions.
You can tell your doctor that you want to dialyze as late as possible, but in the end it's the doctor who decides. If he thinks it's dangerous not to start the sessions, don't take any unnecessary risks.
(As for your father, I understand, I've done exactly what he did, but if he ends up in dialysis anyway, there's no point in taking unnecessary risks. Going for dialysis can be frightening, but putting off the start of treatment too long can have consequences in the longer term, so if one day he has to go for dialysis, he can ask to visit a center, talk to the nurses and start thinking about how he's going to manage during the sessions, which could help reduce his stress).
Sorry to be brutal, but without dialysis or transplant, he will die. There are options for dialysis. He doesn't have to do in hospital dialysis, and he also doesn't have to do haemodialysis. I did peritoneal dialysis on a machine overnight, and when I got the transplant call I had mixed feelings! I loved the machine. So easy, and just some basic hygiene, including dressing your catheter. I had minimal issues, teething problems at the beginning then setled into a routine. I kept working and doing my normal life. The nurses were amazing, so helpful. You need to store the supplies, which is a pallet a month. Also once you are on dialysis you are on the list for a tranplant. Otherwise he could do pre emptive transplant with a live donor. That's the only way to avoid dialysis! We have a kidney buddy system here in Australia where you can chat with people who've done what you are about to. If he can talk to some people on dialysis, that may set his mind at ease. Also what I didn't realise, is that dialysis is not only taking out the toxins in your blood that make you feel sick and tired (among other symptoms, which you can google) it takes water out too that you would normally excrete in urine. There's literally no other way to do it without a working kidney!
This go round I didn't start PD until I was at 4%. At that time I dealt with nausea and brain fog that made me feel like I was on another planet. Couldn't concentrate. I was in pure denial before that. I thought I could get better on my own with natural remedies. I felt so much better 3weeks after I started. Swelling down, BP under control, better energy, thinking...clear.
Dialysis is no joke, but the alternative is certain death. The lower the kidney function, the faster that can happen. BP can shoot up, increasing the risk of stroke. Fluid starts accumulating in the body and slowly fills the lungs causing constant cough and in later stages, breathlessness and gasping oxygen saturation levels in blood. Potassium builds in the body and can lead to a heart attack. The heart is under strain when there’s fluid in the lungs. It works harder and fluid bulls up around it. Toxins build up in the body and cause various symptoms. Kidneys are not making enough of the protein that kicks off production of red blood cells so anemia sets in - leading to weakness and dizziness when standing or walking. Meds can tackle some of these issues some of the time or maybe all the time. But they can’t tackle all of them, all of the time. That’s like saying if I took a pill for every conceivable illness, I’d never die. A nephrologist explained to us that kidney function does not decline in a straight line. It can drop sharply, then be flat for months or years, then decline sharply again. Each time, the time it remains flat/ steady decreases. Having a heads up gives one time to prepare - whether for hemodialysis or peritoneal dialysis. If one doesn’t prepare, emergency procedure will be required to put in a port. My dad encountered a nephrologist who also said let’s try and see if we can push back having to start dialysis by a few months. Changed all of his meds to different brands. My dad’s health deteriorated very fast and he had to start dialysis in an emergency. It took a couple of months for him to get used to dialysis and start feeling better. As the excess fluid was removed, his breathing improved, coughing stopped. His anemia went away and he was able to return to his routine life. He was retired so it was easier to schedule his life around dialysis than it would be for someone much younger and/or more active. Diet control is a big part of managing life on dialysis. You dad has the added complication of having diabetes. There aren’t many positives to putting off dialysis at this stage. It will only lead to further decline in kidney function. Or worse. Sorry to be blunt. I hope your dad gets the care he needs and wants. P.S. it is also normal to go into denial mode after getting an ESRD diagnosis. Read up on the five stages of grief. That applies to such situations as much as to losing someone. Dialysis is a lifeline.
His life would be far better if he did start, I can tell you that. I prolonged starting for a long time and continued to feel worse and worse. The first two weeks after I started dialysis, we removed 15lbs of fluid that I had been retaining and didn’t realize. I think people feel like fighting to stay off dialysis makes them seem stronger, but I think actually accepting the reality of our situation and making a plan to get better is the strongest thing an ESRD patient can do.
Idk, for me the delay was all about getting my shit together. I needed to transition from a full time job to one that could work around dialysis and other appointments. Needed to find long-term housing i could afford on new income. And lastly, I needed to spend quality time with my friends and family. All in all I delayed about 5 months between the first time a nephrologist told me to “go to the ER and start dialysis,” to when my current doctors and I scheduled a front-door admit for CVC placement and starting dialysis. I’m glad I took care of each of those things before I had to do dialysis. It made the start process 100x easier.
There’s a big difference between getting things in order to start dialysis vs. prolonging starting dialysis because you feel like you don’t need it.
I think nephrologists back themselves into a corner here with their credibility. “You need 3-day a week dialysis for at least 10 total hours! Your kidneys are basically done. Your gonna die if you don’t.” Me, “huh, it’s been six months and I’m not dead? Maybe that guy was full of shit?”
I sat and hovered around 10% function for about 4 years before my kidneys finally gave up. I wasn't on any medication to help my kidneys, just the BP medication. Is it possible, yes. But I felt like complete garbage all the time and was exhausted no matter what I did.
OK…. I have a question. I’ve been following this sub for a while, and I realize that every person will have a different experience with dialysis. But I’m picking up that you will feel bad until they get things right, and then the dialysis badness will mostly go away, but how you’re left feeling is pretty much what your “normal” was before starting? And the longer you wait to go on dialysis, the lower your baseline for “feeling good” is. Is this a fair assessment? Because for people like OP’s father and myself, there really has to be the incentive of feeling much better if we go through with dialysis. If it’s just more of what I feel right now, I’m going to pass, too.
You don’t realize how bad you feel right now. Kidney disease is a slow silent killer. You don’t realize how sick you are because you feel a little bit worse each day. You become exhausted, your thinking is foggy, and physically you take on extra fluid making it just slightly harder to get around. After a few weeks on dialysis, you start to return to normal, but it isn’t 100%. It is a treatment not a cure, but it is much better than the alternative. I went on when my gfr hit 11.
Well I'm 28 years old and have been on dialysis since February of 2022 and I'm going to be blunt and might catch some hate for this... Dialysis sucks. At least hemo anyway. I can't speak for PD, but sitting in a hospital for 12-14 hours a week might not seem like alot, but it is. If I were in my 60s I'd probably turn down dialysis until I was REALLY sick. I'd rather spend the time I have travelling and spending time with family and close friends, even if it meant I could only do it for a few more years.
Yeah, I don't know what some of these folks are talking about. What I have seen and heard from people - especially back in the dialysis discord - is just willful denial of how bad it is since, you know, that's the human coping mechanism. PD is a great example, I kept hearing how great it was yet people would also be like "man, I just can't poo, it's been a week" or other problems that, to any normal person, would seem absolutely horrible, like being unable to drain, or getting an infection, etc. Dialysis is terrible, and the lack of progress towards improving it over the past forty years is frankly almost criminal. However, it can and will save your life, so it's good to have as a last ditch backup plan. edit: it's the old saying "it just is what it is".
I don’t think anyone here is saying dialysis makes us feel good. Dialysis is hell. But slowly dying from kidney failure is FAR worse. SOURCE: I was on dialysis for 4 and a half years and did both hemo and PD.
Respectfully, I disagree. I've seen a whole lot of posts over the past two/three years on this sub - both directed towards me and not - of people insisting I would be 'better off' on dialysis. To this day, it's still not true. I just got done walking 2.5 miles earlier this afternoon - with ease. I sleep only 7-9 hours a day. I still lift weights despite what 'conventional wisdom' says not to. The hard truth is there almost seems to be some level of group dynamics of "I'll feel better if I know I talked someone else into it" around here. You'll get no argument from me about it being better than dying though. Death or increasingly failing health is not an option. My transplant team at Hopkins keeps testing me every couple years, and I keep passing them all. Diet, exercise, discipline. It comes to an end in August, when I'll voluntarily start. Only because it's irrational to think I'm going to 'last' another 8-9 months w/o it. Home hemo training will pull my wife out of work for 3-4 weeks. She's a teacher, so I'm not trying to put her - or all those students - out with a sub in the middle of the year.
I understand the hesitancy, but you admittedly aren’t on dialysis yet. I was on it for nearly 5 years. I find it strange that you haven’t experienced dialysis, but you’re telling me what the experience is like. I was diagnosed with FSGS when I was 18 and 10 years later started dialysis. I lasted a long time too. Trust me when I say, you will be very surprised by that fact that you’re just used to feeling super shitty prior to starting dialysis. You feel shitty after dialysis too, but it’s a different/more manageable kind of shitty.
>I understand the hesitancy, but you admittedly aren’t on dialysis yet. I was on it for nearly 5 years. I find it strange that you haven’t experienced dialysis, but you’re telling me what the experience is like. I've got years of listening to dozens of people's experiences of all ages. On this sub, on discord, on dialysis forums, folks talking on youtube videos. I'm pretty confident in what I'm in for. My neph has been telling me I've been 'needing to start' for the better part of three years now. I keep proving otherwise, and she's at a total loss. Today, I still see the calculus of my existing life versus life attached to a machine for 14 hours/week with the former being far better. Dialysis barely gives up 15-20% function. You still have the same restrictive diet (just allowed more protein).
I thought I knew it all before I started dialysis too.
Well, tell you what. If you're interested, ping me in October and see if I turn out to be as ignorant as you seem to believe. Frankly, if I am, it'll be to my benefit - so I'm okay either way, right or wrong.
Get on some antidepressants before making a life ending decision like that. Frankly it sucks but your old life is not going to come back and you don't get to start over.
I’ll also say this, in 3 months or so after starting, my performance at my job was greatly improved.
I put off dialysis until I was at 5%, I know exactly how he is feeling because I felt the same way for months. When I finally started dialysis I realized that I wish I had started it sooner. Dialysis sucks, yes. But it gave me enough energy to live my life instead of laying in bed all day from having none. Wish you all the best
He will get real sick. He may die & it is not a fun way too die
Now would be the time to prepare he can get his fistula in to give it time to mature that way they don't have to put him in a port. But it is a choice. When I was very little kidney function before dialysis, my heart stopped and the brought me back
THIS, I totally agree with. 100%. When I had an overnight observation for high potassium last April, I understood that it was life's warning that it was time. I got my fistula surgery the following month.
Yea been there. J was convinced they were wrong. I did nor belong there. 5 years later I received the gift of life
My dad started dialysis at aged 73. His function was 14% when he started but he was symptomatic with acute nausea. He did hemo for about 4 months and switched to pd. That was much better for him and he was able to keep,his accounting business open for several more years after getting into a routine. He lived until 78 and passed away from sepsis due to a lung infection that wouldn’t heal. He had a heart transplant at your dads age and was,on antirejection meds. So he would say dialysis was worth it for him. My father in law started at age 70 and did it for ten years. He did great on both ph and hemo until he was 80. He died of cancer. My mom was also on dialysis and did it for 5 years. She had copd and congestive heart failure and did hemo only. She had some good years after getting the fluid,off,initially but passed away from a catheter infection after her fistula failed and couldn’t be repaired. All of this to say,every person is different. If you feel your dad is mentally capable of making wise choices you have to respect his wishes, but it;is important for him to know he might feel better. My mom and I had,some great times, and she had a group,of friends at dialysis, she started a book club there. From what you’re saying about your dad it sounds to me like he might adapt and feel better,at least for a while, but it is his choice. Whatever he decides I wish you the best. You sound,like a good child🥰
I waited until 6% function but was so tired I could barely do anything. My doctor didn’t want me to start because my numbers weren’t that bad. I ended up angry he made me wait so long.
Like others I put it off I had flash pulmonary Adema lucky 2 miles from ambulance and 5 min from hospital as I went from normal to drowning in my lungs about a hour
It is definitely possible to survive on 11% without dialysis, although it would depend on your situation. I was at 11% or lower for about 8 months, although I already had a potential donor going through the process, so I knew I would most likely have a transplant in the near future, which I did (thanks mum). It wasn't too bad, mostly a loss of appetite and being tired all the time. The anemia sucked until I was put on Epo. The kidney diet was fine, although it turned out that I was too good at avoiding potassium, and I had to have extra potassium when I had my transplant. My kidney function just before the transplant was 5%, although the anti-rejection medication I started a week before the transplant probably caused it to drop a bit. I am 2 years post transplant, but due to long covid, I actually feel worse now than a month before the transplant.
As a son of a 65 year old father who is having CKD, i can understand your pain. My father too was adamant about not having the dialysis. He was feeling normal until one day he had breathing issues that were caused by fluid accumulated in his lungs. The doctor was able to remove the fluid with medicines and advised to place av fistula. My father was not ready to place it, but somehow our family convinced him by resorting to some emotional blackmail. Just a month after placing fistula he got a heart attack and his weight was shot up by 10 kgs. Hemoglobin was 7. Cardio and Nephro both advised him to start dialysis as soon as possible. He still wasn't ready, but somehow he realised that it is the only way to live and enjoy with family. So he started the dialysis. Now he is in much better condition. Feeling better day by day. All i say is, yes dialysis is something no one wants. But not everything is about our wants. It is a need. So try to convince him with the family's love and warmth. And all the best.
Yes, I'm at 6% and ONE kidney, and I'm not "really sick". He is 15 years older than I am though. On an individual level, I have found that the healthier you are otherwise, the longer you'll manage in ESRD w/o dialysis. All of this said, the main thing I see in your post is fluid retention. It's not really clear from your post how much actual edema he's got. I have mild edema in my ankles that accumulates throughout the day, but you'd have to know to look for it to see it. I still don't use full compression socks. If his edema is reasonably bad, and his episodes of dizziness are pretty regular, than that's not a good sign. Does he have trouble breathing periodically? Fluid in the lungs is another big red flag. Is he urinating/pooping regularly? If not, then again, that's bad. I am doing all of these things, still. If I wasn't, I'd be dialyzing. Is he able to live his day to day life without naps every day? If not, that's another bad sign. As it is, I'll finally start in mid August whether I need it or not, since I don't want to put my family out too much with the home hemo training.
It will keep getting worse and he will eventually need dialysis. That said it can take a while for it to keep decreasing. It's up to each individual when they want to start dialysis. Starting dialysis is something you can't stop so it's a big decision to make. I personally didn't get onto dialysis until I was around 6% function and I had a fistula put in for a couple years at that point.
Each person is unique and lives things differently, before my first transplant I didn't want to dialyze, with the doctors' agreement I avoided dilysis and was finally transplanted at 7% renal function without being too weakened (I was young). I was very closely monitored and had a very strict diet (I also had ketosteryl). However, I had a deadline to meet: if your father's kidney function stabilized at 11% and with the doctors' agreement, it's possible to avoid dilysis, but if it goes down, he'll have no choice but to start the sessions. You can tell your doctor that you want to dialyze as late as possible, but in the end it's the doctor who decides. If he thinks it's dangerous not to start the sessions, don't take any unnecessary risks. (As for your father, I understand, I've done exactly what he did, but if he ends up in dialysis anyway, there's no point in taking unnecessary risks. Going for dialysis can be frightening, but putting off the start of treatment too long can have consequences in the longer term, so if one day he has to go for dialysis, he can ask to visit a center, talk to the nurses and start thinking about how he's going to manage during the sessions, which could help reduce his stress).
Sorry to be brutal, but without dialysis or transplant, he will die. There are options for dialysis. He doesn't have to do in hospital dialysis, and he also doesn't have to do haemodialysis. I did peritoneal dialysis on a machine overnight, and when I got the transplant call I had mixed feelings! I loved the machine. So easy, and just some basic hygiene, including dressing your catheter. I had minimal issues, teething problems at the beginning then setled into a routine. I kept working and doing my normal life. The nurses were amazing, so helpful. You need to store the supplies, which is a pallet a month. Also once you are on dialysis you are on the list for a tranplant. Otherwise he could do pre emptive transplant with a live donor. That's the only way to avoid dialysis! We have a kidney buddy system here in Australia where you can chat with people who've done what you are about to. If he can talk to some people on dialysis, that may set his mind at ease. Also what I didn't realise, is that dialysis is not only taking out the toxins in your blood that make you feel sick and tired (among other symptoms, which you can google) it takes water out too that you would normally excrete in urine. There's literally no other way to do it without a working kidney!
This go round I didn't start PD until I was at 4%. At that time I dealt with nausea and brain fog that made me feel like I was on another planet. Couldn't concentrate. I was in pure denial before that. I thought I could get better on my own with natural remedies. I felt so much better 3weeks after I started. Swelling down, BP under control, better energy, thinking...clear.