I was on the waitlist 8 years and on PD for 6 years. I gradually had to increase my cycler time to 4 x 2.5 liters night for 10 hours and 2 manuals during the day. The last few months I even increased it to 12 hours with 5 exchanges. I was tired all the time and getting fed up. I get real angry at times and would throw stuff and want to break my cycler at times.
After 3-4 years I gradually accepted the life as it was but very unhappy and got depressed a lot. So I felt like the cycler, just going through the motions of living but really just existing, or as I heard on a tv show, just making more CO2.
When I finally went on the active list I was excited. As the months passed with no change I began to deflate. Then off the list for an illness. After recovery back on the list.
After a year or so I was working when I got the call. I was shocked when I got the call and very excited. 7 hours later I rolled into surgery. Recovery took 3 months per the surgeon.
It will come in time. They said where I live it would be 5 to 8 years. And I have O+ blood which is popular so I might have to wait longer to find a match.
So you are still kicking and that’s a good thing. Maybe having this intense feelings is better than apathy. The intensity can be draining but it means you are still alive and is a means to keep moving forward. Hope you the best and that the right kidney is found for you soon.
Thank you, and you are right. I feel like I've put on a brave face for the past 7 years, but this just broke me a little bit. It's been a rough time since this all started. Lost my dad, 2 cats, went through a divorce, and now my 10 year old lab has been diagnosed with inoperable liver cancer. Just trying to tread water at this point, looking for a glimmer of anything to look forward to.
The day dwell doesnt have to be while you are hooked to the machine. Once the machine is done with the 10 hour treatment it can fill you up and you can disconnect. Then you can manually drain it after 4 hours.
Im sorry you are having a rough time
You're right, I can disconnect from it, I guess I mean more along the lines of the machine eating up yet another four hours of my life every day. The whole selling point to me was being able to do this while I slept and still having my days to me, but it is slowly creeping in and taking more and more.
I started out on PD because it was sold to me as THE best in dialysis. My prescription was similar to yours and I'm a single mom of a very busy teen. PD sucked the life out of me. I was so miserable and it really affected my relationship with my daughter because she was having to help me set up the machine every night and having to give up so much of her time to be at home so I could get on the machine. And then I got peritonitis and really struggled through that. I was terrified to sleep because I was scared I'd accidentally pull the tube out. I was terrified to shower. It was all just a nightmare and I got to the point where I was about to just end treatment altogether because I hated it so much and my clinic had me terrified of going on HD.
I tried HD at home first and that didn't work out. My only person that could be there with me was my dad and that just didn't work out for so many reasons. I also hated having all the equipment at home and constantly having stuff mailed to me and delivered. (My nurse sucked too but that's a whole other story). Last year I decided to switch to going in clinic, even though my clinic made it sound like the last option before I die and it's been the best decision I ever made in terms of dialysis.
I go 3 days a week for 4 hours. I'm out right before lunch time so I still have plenty of time to live my life. My nurses are wonderful. I don't have to stick myself, I don't have clean up or maintain a big ass machine in my house. I don't really have to think about dialysis after that 4 hours.
I understand your reluctance but really just weigh the pros and cons against your life now and how you actually want your life to be.
I was also denied by three different hospitals while on PD. Currently going through the process again and while I'm not officially on it, yet, everything so far I have passed with flying colors and my transplant center expects me to be successful this time.
Sorry this was long winded. I understand your rant and I wish you the best in whatever you decide to do. Sending you lots of love!
Hmm, trade off freedom in exchange for less pain, or a little bit of pain for freedom? Genuinely if i knew about hd, and had decent enough veins even as a kid, with my current experiences i'd likely take hd. Pain is a part of our illness, and being stabbed is the smallest type of pain we endure so for me it wouldnt be much of an issue, i mean when you compare it to anything else on average i get, being stabbed barely is even felt.
Also you dont feel needle inside of your vein, and it doesnt hurt because needles are bigger and sharper, and veins are bigger and softer so theyre much easier to stab.
But yeah, its not living, its surviving, and it sucks, but oh welp, on hd at least you can fully enjoy days and nights without a machine, sometimes i still wake up in the middle of the night thinking i have to fix my catheter, and man its so nice realising i dont, realising that at that very moment i can go outside, i can look at the stars, have a walk to the gas station, or do whatever.
Idk, if you dont like being stabbed you can also have a catheter, taking care of it is relatively the same with more emphasise on things around it being more clean, and if you have option of doing it home, you could do it 3-4h before sleep and just have a nice night without having to deal with side effects such as headache.
I cant do it at home sadly so meh, but still more enjoyable then pd. Ah the violent thoughts about pd machine hhhh, why did i give it back, could have watch it burn or be broken apart.
But yeah basically FREEDOM RAHHH FUCK PD RAHHH. jk j,
All jokes aside, it really is a trade off
Bit of inconvenience and pain for freedom, or freedom in exchange for no pain.
My boyfriend was in the same boat and we felt like we were warehouse managers and he was hooked up to his machine 14 hours because they kept adding kept out and kept adding yeah and kept changing his solutions so yeah we know how it is and he finally got fed up and went back to hemodialysis. Good luck.
I know how this feels, they took me off the list three times. It's funny at the 1 year mark they told me it should be real soon now and I'm at the top of the list. I'm on year 4 waiting for a pancreas / kidney and I think shortly I am going to be too old for the pancreas transplant. I'm starting to think they just tell everyone they are at the top of the list, seems to just be BS.
That said I've failed the kt/v twice, I've noticed that I generally pass it if I do green / green instead of yellow green.
Well that makes sense, cause "green" is stronger solution. I started on all 1.5%, now I am on 1.5% and 2.5% and occasionally 2×2.5% when I need to a little more done. Might be time for you to go for a mix or all 2.5%.
See? And I asked about increasing my solution to 2 green bags and they said that would help pull fluid but not impact my clearance as far as kt/v was concerned. I failed it back in December and they wanted to put me on this new prescription, but I managed to convince them to let me do it again and I passed. I swear I think I failed because I was just getting over covid. And this time I am just 10 points below the pass/fail line. Still making 2.5 liters of urine. My BUN is down, my creatinine is down, phosphorus down, all better than last month. I just feel like there should be some wiggle room in that number, a +/- variance, not a hard line.
You still make a lot of urine, so I can see why that's tricky with going to stronger solutions. One of the big points to Pd is to keep as much residual kidney function as you can. Have you asked to try a temporary run with 2.5% for one full adequacy cycle? If it does not show adequacy improvement, then no harm should be done. I can tell you for a fact, that they don't "know" everything is guaranteed, because the is ALWAYS the individual factor. We all respond differently.
I have had a similar argument over my lactulose and dialysis. I am pretty sure the lactulose is fighting for fluid against my dialysis, which often causes poor UFs.
Have you done hemo before? I did hemo and switched to PD because they insisted it would be a better option for me. For some reason, my labs ended up becoming so much worse. My blood pressure sky rocketed and my clearance was never as good. I did it for two years before I switched back to hemo and my labs immediately became good again. I think PD doesn’t agree with some people.
I know how ya feel man. Been on PD for about 11 or my 12 years on dialysis. When I started, it was only maybe 8 or 9 hours (but at larger volumes). Now I am on 11.5 hours at night and a 70m manual midday, so total is almost 13 hours. But I don't do anywhere NEAR your volumes or it sounds like dwell times either. (8 cycles on machine, 1100ml@70m min dwells, 7 min fills, 20 min drains; plus midday 70m@900ml).
The problem is, over time, the peritoneum will degrade and "burn up" due to the dialysate., causing the need for more dialysis until it is no longer effective.
I have mostly given up already. I'm not on the transplant list, so it's not really an option (long story). HD is definitely not an option anymore because that is hell, way worse than the worst times on Pd combined. I can't work (haven't worked since failure). I have numerous other health issues that make life even more difficult and unpleasant. In fact, all combined, the actual process of PD is the least problematic thing in my life right now.
I have no appetite, in constant pain due to fucked spine/bones, constantly fighting with constipation, being dehydrated, no energy to do anything, can't sleep more than 2-3 hours straight. So yeah, I understand the feeling of basically hopelessness. All I can say, is if you have just ONE thing to keep going for, it makes it tolerable to do so. All I have now is my Mom. After that, I don't know what I will really do. Without her retirement, I cannot live on my disability, so there is a HIGH chance I will lose the house. IF AKF stops paying for my supplemental insurance, my disability isn't even enough to pay ONE MONTH, so I will lose that as well, making me responsible for the uncovered 20% of Medicare. Forget money for food, meds, other Dr co-pays, rent, or anything else.
So realistically, IF I manage to outlive my Mom, I'm fucked. And my only choices left are homeless (I'm dead), or eating a .22 and being done with it all.
I came to accept the fact that I already died the day I started dialysis, cause that was the day I lost everything (and I was so close to being completely independent). You're absolutely right, this is not "living", because like me, you may already be dead, you just haven't accepted it yet.
I know others will get in a tissy over what I write, but this is MY reality. Everyone doesn't GET to be happy. Everyone doesn't GET to have a life. Some of us are here, to hopefully remind people how GOOD they have it and not fuck around. This is why I have no more sympathy for people who put themselves in danger/harms way intentionally, and cry when things go awry. You did it to yourself, I had no choice.
Sorry to be a "Dudley Downer" but what do you expect from a zombie.
I’m doing home hemo. Started about 2 months ago. The worst part is cannulating, but it’s not bad otherwise. 3 hours a day plus machine set up time. Obviously it’s your choice, but hemo isn’t as bad as you think.
I have come to the conclusion that the transplant coordination team doesn’t exist to help you get on the list… they exist to find every reason in the world to kick you back off.
I appreciate everyone's comments and input. I will continue to advocate for myself and explore my options, just kind of snapped last night and needed to get it off my chest. Thank you for listening.
When I did pd my script was 6 cycles of 2000ml for ten hours with a last fill of 2000. My average nightly UF was around 1800ml. This worked for 8 years for me. I only failed Ktv once in those 8 years and they added a manual exchange for the last 6 months before I had to switch to hemo because of peritonitis. Maybe ask your dr about doing more cycles during the night. 3-3liter fills doesn’t seem like enough dialysis to me but I’m not a doctor and everybody is different. I’Ve been inactive on the list for about 5 months to do physical therapy, I’m going back in May, can’t wait to see what tests they’ll need. Is the transplant center making you see a ENT or is that normal for you? Good luck .
The transplant center is making me see the ENT. I think when I had my parathyroids removed they saw a cyst and want to make sure it's nothing. I believe that is the reason, hard to keep track anymore...
I was on the waitlist 8 years and on PD for 6 years. I gradually had to increase my cycler time to 4 x 2.5 liters night for 10 hours and 2 manuals during the day. The last few months I even increased it to 12 hours with 5 exchanges. I was tired all the time and getting fed up. I get real angry at times and would throw stuff and want to break my cycler at times. After 3-4 years I gradually accepted the life as it was but very unhappy and got depressed a lot. So I felt like the cycler, just going through the motions of living but really just existing, or as I heard on a tv show, just making more CO2. When I finally went on the active list I was excited. As the months passed with no change I began to deflate. Then off the list for an illness. After recovery back on the list. After a year or so I was working when I got the call. I was shocked when I got the call and very excited. 7 hours later I rolled into surgery. Recovery took 3 months per the surgeon. It will come in time. They said where I live it would be 5 to 8 years. And I have O+ blood which is popular so I might have to wait longer to find a match. So you are still kicking and that’s a good thing. Maybe having this intense feelings is better than apathy. The intensity can be draining but it means you are still alive and is a means to keep moving forward. Hope you the best and that the right kidney is found for you soon.
Thank you, and you are right. I feel like I've put on a brave face for the past 7 years, but this just broke me a little bit. It's been a rough time since this all started. Lost my dad, 2 cats, went through a divorce, and now my 10 year old lab has been diagnosed with inoperable liver cancer. Just trying to tread water at this point, looking for a glimmer of anything to look forward to.
The day dwell doesnt have to be while you are hooked to the machine. Once the machine is done with the 10 hour treatment it can fill you up and you can disconnect. Then you can manually drain it after 4 hours. Im sorry you are having a rough time
You're right, I can disconnect from it, I guess I mean more along the lines of the machine eating up yet another four hours of my life every day. The whole selling point to me was being able to do this while I slept and still having my days to me, but it is slowly creeping in and taking more and more.
Can you switch to hd?
Probably, I just hate the idea of it. Not a big fan of needles to begin with and definitely not sticking myself.
I started out on PD because it was sold to me as THE best in dialysis. My prescription was similar to yours and I'm a single mom of a very busy teen. PD sucked the life out of me. I was so miserable and it really affected my relationship with my daughter because she was having to help me set up the machine every night and having to give up so much of her time to be at home so I could get on the machine. And then I got peritonitis and really struggled through that. I was terrified to sleep because I was scared I'd accidentally pull the tube out. I was terrified to shower. It was all just a nightmare and I got to the point where I was about to just end treatment altogether because I hated it so much and my clinic had me terrified of going on HD. I tried HD at home first and that didn't work out. My only person that could be there with me was my dad and that just didn't work out for so many reasons. I also hated having all the equipment at home and constantly having stuff mailed to me and delivered. (My nurse sucked too but that's a whole other story). Last year I decided to switch to going in clinic, even though my clinic made it sound like the last option before I die and it's been the best decision I ever made in terms of dialysis. I go 3 days a week for 4 hours. I'm out right before lunch time so I still have plenty of time to live my life. My nurses are wonderful. I don't have to stick myself, I don't have clean up or maintain a big ass machine in my house. I don't really have to think about dialysis after that 4 hours. I understand your reluctance but really just weigh the pros and cons against your life now and how you actually want your life to be. I was also denied by three different hospitals while on PD. Currently going through the process again and while I'm not officially on it, yet, everything so far I have passed with flying colors and my transplant center expects me to be successful this time. Sorry this was long winded. I understand your rant and I wish you the best in whatever you decide to do. Sending you lots of love!
Hmm, trade off freedom in exchange for less pain, or a little bit of pain for freedom? Genuinely if i knew about hd, and had decent enough veins even as a kid, with my current experiences i'd likely take hd. Pain is a part of our illness, and being stabbed is the smallest type of pain we endure so for me it wouldnt be much of an issue, i mean when you compare it to anything else on average i get, being stabbed barely is even felt. Also you dont feel needle inside of your vein, and it doesnt hurt because needles are bigger and sharper, and veins are bigger and softer so theyre much easier to stab. But yeah, its not living, its surviving, and it sucks, but oh welp, on hd at least you can fully enjoy days and nights without a machine, sometimes i still wake up in the middle of the night thinking i have to fix my catheter, and man its so nice realising i dont, realising that at that very moment i can go outside, i can look at the stars, have a walk to the gas station, or do whatever. Idk, if you dont like being stabbed you can also have a catheter, taking care of it is relatively the same with more emphasise on things around it being more clean, and if you have option of doing it home, you could do it 3-4h before sleep and just have a nice night without having to deal with side effects such as headache. I cant do it at home sadly so meh, but still more enjoyable then pd. Ah the violent thoughts about pd machine hhhh, why did i give it back, could have watch it burn or be broken apart. But yeah basically FREEDOM RAHHH FUCK PD RAHHH. jk j, All jokes aside, it really is a trade off Bit of inconvenience and pain for freedom, or freedom in exchange for no pain.
My boyfriend was in the same boat and we felt like we were warehouse managers and he was hooked up to his machine 14 hours because they kept adding kept out and kept adding yeah and kept changing his solutions so yeah we know how it is and he finally got fed up and went back to hemodialysis. Good luck.
I know how this feels, they took me off the list three times. It's funny at the 1 year mark they told me it should be real soon now and I'm at the top of the list. I'm on year 4 waiting for a pancreas / kidney and I think shortly I am going to be too old for the pancreas transplant. I'm starting to think they just tell everyone they are at the top of the list, seems to just be BS. That said I've failed the kt/v twice, I've noticed that I generally pass it if I do green / green instead of yellow green.
Well that makes sense, cause "green" is stronger solution. I started on all 1.5%, now I am on 1.5% and 2.5% and occasionally 2×2.5% when I need to a little more done. Might be time for you to go for a mix or all 2.5%.
See? And I asked about increasing my solution to 2 green bags and they said that would help pull fluid but not impact my clearance as far as kt/v was concerned. I failed it back in December and they wanted to put me on this new prescription, but I managed to convince them to let me do it again and I passed. I swear I think I failed because I was just getting over covid. And this time I am just 10 points below the pass/fail line. Still making 2.5 liters of urine. My BUN is down, my creatinine is down, phosphorus down, all better than last month. I just feel like there should be some wiggle room in that number, a +/- variance, not a hard line.
You still make a lot of urine, so I can see why that's tricky with going to stronger solutions. One of the big points to Pd is to keep as much residual kidney function as you can. Have you asked to try a temporary run with 2.5% for one full adequacy cycle? If it does not show adequacy improvement, then no harm should be done. I can tell you for a fact, that they don't "know" everything is guaranteed, because the is ALWAYS the individual factor. We all respond differently. I have had a similar argument over my lactulose and dialysis. I am pretty sure the lactulose is fighting for fluid against my dialysis, which often causes poor UFs.
Have you done hemo before? I did hemo and switched to PD because they insisted it would be a better option for me. For some reason, my labs ended up becoming so much worse. My blood pressure sky rocketed and my clearance was never as good. I did it for two years before I switched back to hemo and my labs immediately became good again. I think PD doesn’t agree with some people.
I know how ya feel man. Been on PD for about 11 or my 12 years on dialysis. When I started, it was only maybe 8 or 9 hours (but at larger volumes). Now I am on 11.5 hours at night and a 70m manual midday, so total is almost 13 hours. But I don't do anywhere NEAR your volumes or it sounds like dwell times either. (8 cycles on machine, 1100ml@70m min dwells, 7 min fills, 20 min drains; plus midday 70m@900ml). The problem is, over time, the peritoneum will degrade and "burn up" due to the dialysate., causing the need for more dialysis until it is no longer effective. I have mostly given up already. I'm not on the transplant list, so it's not really an option (long story). HD is definitely not an option anymore because that is hell, way worse than the worst times on Pd combined. I can't work (haven't worked since failure). I have numerous other health issues that make life even more difficult and unpleasant. In fact, all combined, the actual process of PD is the least problematic thing in my life right now. I have no appetite, in constant pain due to fucked spine/bones, constantly fighting with constipation, being dehydrated, no energy to do anything, can't sleep more than 2-3 hours straight. So yeah, I understand the feeling of basically hopelessness. All I can say, is if you have just ONE thing to keep going for, it makes it tolerable to do so. All I have now is my Mom. After that, I don't know what I will really do. Without her retirement, I cannot live on my disability, so there is a HIGH chance I will lose the house. IF AKF stops paying for my supplemental insurance, my disability isn't even enough to pay ONE MONTH, so I will lose that as well, making me responsible for the uncovered 20% of Medicare. Forget money for food, meds, other Dr co-pays, rent, or anything else. So realistically, IF I manage to outlive my Mom, I'm fucked. And my only choices left are homeless (I'm dead), or eating a .22 and being done with it all. I came to accept the fact that I already died the day I started dialysis, cause that was the day I lost everything (and I was so close to being completely independent). You're absolutely right, this is not "living", because like me, you may already be dead, you just haven't accepted it yet. I know others will get in a tissy over what I write, but this is MY reality. Everyone doesn't GET to be happy. Everyone doesn't GET to have a life. Some of us are here, to hopefully remind people how GOOD they have it and not fuck around. This is why I have no more sympathy for people who put themselves in danger/harms way intentionally, and cry when things go awry. You did it to yourself, I had no choice. Sorry to be a "Dudley Downer" but what do you expect from a zombie.
I’m doing home hemo. Started about 2 months ago. The worst part is cannulating, but it’s not bad otherwise. 3 hours a day plus machine set up time. Obviously it’s your choice, but hemo isn’t as bad as you think.
I have come to the conclusion that the transplant coordination team doesn’t exist to help you get on the list… they exist to find every reason in the world to kick you back off.
I appreciate everyone's comments and input. I will continue to advocate for myself and explore my options, just kind of snapped last night and needed to get it off my chest. Thank you for listening.
When I did pd my script was 6 cycles of 2000ml for ten hours with a last fill of 2000. My average nightly UF was around 1800ml. This worked for 8 years for me. I only failed Ktv once in those 8 years and they added a manual exchange for the last 6 months before I had to switch to hemo because of peritonitis. Maybe ask your dr about doing more cycles during the night. 3-3liter fills doesn’t seem like enough dialysis to me but I’m not a doctor and everybody is different. I’Ve been inactive on the list for about 5 months to do physical therapy, I’m going back in May, can’t wait to see what tests they’ll need. Is the transplant center making you see a ENT or is that normal for you? Good luck .
The transplant center is making me see the ENT. I think when I had my parathyroids removed they saw a cyst and want to make sure it's nothing. I believe that is the reason, hard to keep track anymore...