Hi all,
Hope everyone has been doing okay-I haven't been here for awhile!
My creatinine is up to 3.5 and my potassium is high, so I have been put on a low potassium diet and given a potassium-reducing medication to take one time.
It has been so long since I have had to mess with all this stuff-I'm kind of in a daze right now!
I feel pretty good, except for fatigue and occasional nausea-but nothing severe. Transplant is getting a little long in the tooth and wearing out.
If and when I need dialysis, I am wondering how peritoneal dialysis ranks in terms of how you feel, how much time it takes out of your schedule and all the rest. When I was first diagnosed, hemo was the only option, so even though I'm a veteran renal patient, I've never had to deal with any type of renal replacement except hemo and it made me horribly sick. If I can stay away from it, all the better!
If anyone could fill me in a bit on PD, I'd appreciate it! I'm not too down about this setback right now...I am just wondering about the "new" stuff so I can weigh my options-things sure have changed in 37 yrs!
Thanks, guys!
Pam
Right now, I am sitting on the fence
Moderator: administrator
Right now, I am sitting on the fence
32 yr cadaver transplant recipient, now on peritoneal dialysis with the help of Audrey, my Homechoice machine... as of 4/3/09
Romans 8:28
Romans 8:28
Pam - sorry to hear that your tx is 'wearing out' but it gives me hope when I hear about how long other peoples transplants have lasted, as it can only be good news as drugs etc get more refined over time.
It probably won't be a huge suprise to you if you have read any of my posts that I am a HUGE fan of PD. For me it enabled me to have control of my life and live without 3 times weekly trips to the hospital (though when it looked like I would have to have HD I was aiming to be the fastest switch ever to home haemo).
It does take some time out of your day, and it is every day, but especially if you are a fast drainer (I actually wasn't) then it can be as little as 15 mins/exchange, 3 or 4 times a day. On APD you just hook yourself up when you go to bed and sleep through it. As many others will tell you, if you are on CAPD you can literally do an exchange almost anywhere and you have freedom to fit your treatment in with your life and not the other way around.
I love to travel and could never have done either my job, or the holidays I have had without being on PD as I have been to many places where HD either was not available, or I would be nervous about doing it there.
I could go on at length about it, and will happily answer any questions (either via the BB or PM) but I know I can be a bit evangelical about it (I have also done a couple of predialysis talks to new patients) so I will leave it there for the present!!
It probably won't be a huge suprise to you if you have read any of my posts that I am a HUGE fan of PD. For me it enabled me to have control of my life and live without 3 times weekly trips to the hospital (though when it looked like I would have to have HD I was aiming to be the fastest switch ever to home haemo).
It does take some time out of your day, and it is every day, but especially if you are a fast drainer (I actually wasn't) then it can be as little as 15 mins/exchange, 3 or 4 times a day. On APD you just hook yourself up when you go to bed and sleep through it. As many others will tell you, if you are on CAPD you can literally do an exchange almost anywhere and you have freedom to fit your treatment in with your life and not the other way around.
I love to travel and could never have done either my job, or the holidays I have had without being on PD as I have been to many places where HD either was not available, or I would be nervous about doing it there.
I could go on at length about it, and will happily answer any questions (either via the BB or PM) but I know I can be a bit evangelical about it (I have also done a couple of predialysis talks to new patients) so I will leave it there for the present!!
Ive been doing PD for 4 years now. Its great i move the times around to suit me within the limits i take the stuff with me. I havent had any problems other than abit of constipation no pertonitis or anything. I feel great most of the time. If my HB goes down or that i feel poor but it wont matter what dialysis your doing if that happens yull fee poor. I only go the hosptial once a month fo r bloods and clinic every 3. Did hemo for a while when i was first diagnosed and had to get 'fitted out' for PD. I wouldnt want to go back.
APD i havtn tried because the manul way suits my lifestyle so much. if you have the time at night nad it suits i know lot of people like it. Im the only oe at my unit to do manual PD everyone else is on the machine so they tell me.
But the choice must suit you dont be pushed one way or the other for anyoe.
Tom
APD i havtn tried because the manul way suits my lifestyle so much. if you have the time at night nad it suits i know lot of people like it. Im the only oe at my unit to do manual PD everyone else is on the machine so they tell me.
But the choice must suit you dont be pushed one way or the other for anyoe.
Tom
Pam,
Very sorry to hear about your transplant not working properly.
Before my transplant and almost had to start dialysis, I was going to do PD,as I like to travel and medicare will not pay for treatments of HD
outside the US. However, the company(Wellbound) I visited , was very excited about their, home hemo program.
I still think about dialysis, ever so often and think the freedom with PD would my choice. Good Luck from Jane
Very sorry to hear about your transplant not working properly.
Before my transplant and almost had to start dialysis, I was going to do PD,as I like to travel and medicare will not pay for treatments of HD
outside the US. However, the company(Wellbound) I visited , was very excited about their, home hemo program.
I still think about dialysis, ever so often and think the freedom with PD would my choice. Good Luck from Jane
Thanks, guys!
I did the home hemo and although it was better than being at a unit, I still had a lot of problems with it, so I am glad to hear some positive information about PD!
Mandy-about the op to put the tube into your abdomen for PD...how painful is it? My sis was on PD for a little while and she said it was quite painful after surgery and she felt like she had to go to the bathroom (not urine).
How much storage space do you need? I have heard that there are tons of supplies!
How restricted is your diet and fluid intake?
I appreciate your answering my questions and for telling me about your experiences!
Pam
I did the home hemo and although it was better than being at a unit, I still had a lot of problems with it, so I am glad to hear some positive information about PD!
Mandy-about the op to put the tube into your abdomen for PD...how painful is it? My sis was on PD for a little while and she said it was quite painful after surgery and she felt like she had to go to the bathroom (not urine).
How much storage space do you need? I have heard that there are tons of supplies!
How restricted is your diet and fluid intake?I appreciate your answering my questions and for telling me about your experiences!
Pam
32 yr cadaver transplant recipient, now on peritoneal dialysis with the help of Audrey, my Homechoice machine... as of 4/3/09
Romans 8:28
Romans 8:28
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Helen Rambaut
- Posts: 745
- Joined: Mon Feb 13, 2006 11:34 pm
- Location: London
Hi Pam. As to how painful after the op to insert pd tube I think everyone is different. I was told it depended on how I reacted to pain. Caused a laugh in the office: badly said one of my colleagues. For me when I called in after the weekend I told my boss "now I know why dogs dont like going back to the vet!" But that was the first op I had ever had. I was sore but within a week it had got better. On the other hand MandyV didnt stay in overnight like I did and felt it was fine. But she can tell you herself.
I think you get used to things becos after the tx I thought I had cracked it. The secret was not to move and I didn't use too much of the painkiller on the first night. Then the sister in charge said "no wonder she isn't mobilising!"
On PD I was given a diet to suit me: ok on potassium but not ok on phosphate. Great tip was being told that the nutrician didnt believe in "nevers" so I avoided the undesirables by not eating them at home and if I encountered them I could have some occasionally. I restricted my fluid to what I wanted to drink and this seemed to be ok because I drained out more when I drank more. Seemed to drain out less at weekends or on holiday when there were fewer trips to the kitchen for drinks.
Like others who get on well with PD I chose it because it suited my lifestyle. I didnt want the needles. And it worked for me. But if you read golightly's blog you would get a different impression of haemo than I had.
Helen
I think you get used to things becos after the tx I thought I had cracked it. The secret was not to move and I didn't use too much of the painkiller on the first night. Then the sister in charge said "no wonder she isn't mobilising!"
On PD I was given a diet to suit me: ok on potassium but not ok on phosphate. Great tip was being told that the nutrician didnt believe in "nevers" so I avoided the undesirables by not eating them at home and if I encountered them I could have some occasionally. I restricted my fluid to what I wanted to drink and this seemed to be ok because I drained out more when I drank more. Seemed to drain out less at weekends or on holiday when there were fewer trips to the kitchen for drinks.
Like others who get on well with PD I chose it because it suited my lifestyle. I didnt want the needles. And it worked for me. But if you read golightly's blog you would get a different impression of haemo than I had.
Helen
Pam - I personally didn't find the tube a problem; I had it done on the ward in a side room. I assumed that meant that I could leave immediately afterwards. Gave the nurses a bit of a shock when I said as soon as it was done - 'right I'm off'! They did persuade me to wait for an hour but I went home thereafter - I didn't feel like doing much more than lying on th sofa watching TV but don't recall anything else.
I did have a good dose of LA for the process and it was a bit strange as you could feel the doc pushing hard to get the tube through the peritoneum (mine is particularly tough apparently). I don't recall it being painful afterwards really either. I didn't think that I had a particularly high pain threshold but perhaps it is a bit higher than average?
I also never really had any diet or fluid restrictions; it is very person dependent. I never needed EPO or iron either until my failed tx and despite being given a few units of blood then I never really managed to get back to normal Hb until my recent tx. My doc let me inject monthly because I hated it so much for a good deal of the time - but after my recent tx I had to daily inject clexane so I am quite used to it now!
I did have a good dose of LA for the process and it was a bit strange as you could feel the doc pushing hard to get the tube through the peritoneum (mine is particularly tough apparently). I don't recall it being painful afterwards really either. I didn't think that I had a particularly high pain threshold but perhaps it is a bit higher than average?
I also never really had any diet or fluid restrictions; it is very person dependent. I never needed EPO or iron either until my failed tx and despite being given a few units of blood then I never really managed to get back to normal Hb until my recent tx. My doc let me inject monthly because I hated it so much for a good deal of the time - but after my recent tx I had to daily inject clexane so I am quite used to it now!
Pam,
My tube was done under a genral. I was in hospital overnight and left the day after the op. i was sore for a couple of days but it passed quickly.
As or supplies i get one omnths worth at a time. the bags of fluid fit ina a space about 3 feet by 4 feet by 5 feet. which is rouhly the size of my understairs cupboard i keep my caps sheild etc in th room i do the dialysis in the bottom of a wardrobe. The little bits and pieces hydrex and hibscrub gauze etc dosnt take up much space and yur going to want them close at hand.
Tom
My tube was done under a genral. I was in hospital overnight and left the day after the op. i was sore for a couple of days but it passed quickly.
As or supplies i get one omnths worth at a time. the bags of fluid fit ina a space about 3 feet by 4 feet by 5 feet. which is rouhly the size of my understairs cupboard i keep my caps sheild etc in th room i do the dialysis in the bottom of a wardrobe. The little bits and pieces hydrex and hibscrub gauze etc dosnt take up much space and yur going to want them close at hand.
Tom
hey Pam,
Sorry to hear you're facing dialysis-- but 37 years of a transplant= wowee!
I loved PD a lot and am a great advocate for it as I lived an almost totally normal life including holding down a demanding full time job and travelling abroad.
Buuut... you are the only one who can decide and PD doesn't suit everyone. Have a think about your lifestyle and weigh up the negatives/positives and take it from there. I remember seeing a PD vs. HD calculator somewhere- I'll have athink and get back to you
Lots of love,
Sorry to hear you're facing dialysis-- but 37 years of a transplant= wowee!
I loved PD a lot and am a great advocate for it as I lived an almost totally normal life including holding down a demanding full time job and travelling abroad.
Buuut... you are the only one who can decide and PD doesn't suit everyone. Have a think about your lifestyle and weigh up the negatives/positives and take it from there. I remember seeing a PD vs. HD calculator somewhere- I'll have athink and get back to you
Lots of love,
You had yours done..............with a local..............in a side room..............fully awakeMandyV wrote:Pam - I personally didn't find the tube a problem; I had it done on the ward in a side room. I assumed that meant that I could leave immediately afterwards. Gave the nurses a bit of a shock when I said as soon as it was done - 'right I'm off'! They did persuade me to wait for an hour but I went home thereafter - I didn't feel like doing much more than lying on th sofa watching TV but don't recall anything else.
I did have a good dose of LA for the process and it was a bit strange as you could feel the doc pushing hard to get the tube through the peritoneum (mine is particularly tough apparently). I don't recall it being painful afterwards really either. I didn't think that I had a particularly high pain threshold but perhaps it is a bit higher than average?
I also never really had any diet or fluid restrictions; it is very person dependent. I never needed EPO or iron either until my failed tx and despite being given a few units of blood then I never really managed to get back to normal Hb until my recent tx. My doc let me inject monthly because I hated it so much for a good deal of the time - but after my recent tx I had to daily inject clexane so I am quite used to it now!
I'm speechless, there was no way I could have gone home in an hour, I was in hospital for 5 days after mine was done, in agony and couldn't move. There was no way I'd ever let them do that again while I'm awake.
Removal was even worse as literally had to dig my tube out, so spent another 3 days in hospital afterward then 2 weeks of having the wound packed every day.
I still wouldn't do hemo if it came to it again though!
You're very brave
Numero Uno
Head Honcho
Top dog
Head Honcho
Top dog
Oh my gosh, Mandy! I don't think I could have a surgery like that without being totally out! It even sounds painful!
Thanks, guys for all your information and experiences-it really helps when you are in uncharted waters to have people who have gone before you...and I really feel like I'm in those waters!
I am feeling more and more positive about PD thanks to your advice! It sounds like it would fit my lifestyle and I really like the idea of the more relaxed diet and fluid restrictions.
I am going to try and learn all I can to make an informed decision before the time comes...thanks again!
Pam
I don't think I could have a surgery like that without being totally out! It even sounds painful!Thanks, guys for all your information and experiences-it really helps when you are in uncharted waters to have people who have gone before you...and I really feel like I'm in those waters!
I am feeling more and more positive about PD thanks to your advice! It sounds like it would fit my lifestyle and I really like the idea of the more relaxed diet and fluid restrictions.
I am going to try and learn all I can to make an informed decision before the time comes...thanks again!
Pam
32 yr cadaver transplant recipient, now on peritoneal dialysis with the help of Audrey, my Homechoice machine... as of 4/3/09
Romans 8:28
Romans 8:28
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Rachel in NY
- Posts: 650
- Joined: Fri Apr 23, 2004 1:11 pm
- Location: NY, USA,
Hi Pam!
No advice for you here as I haven't done PD, but sorry that it has come to this for you
I'm sure whatever decision you make will be thought out well and hopefully it'll all work out.
Good to see u again, although not in this context.
bye,
Rachel
No advice for you here as I haven't done PD, but sorry that it has come to this for you
I'm sure whatever decision you make will be thought out well and hopefully it'll all work out.
Good to see u again, although not in this context.
bye,
Rachel
"When life keeps giving you lemons, get to work and make a tall frosted pitcher of icy cold lemonade."
Pam,
Please keep posting!!
I was never on dialysis and I will be terrified when my transplant fails.
You seem to be "fairly" relaxed about it, I mean, you know what is ahead for you. I was on the transplantlist for 5 y. and never knew I was on a "list" for an old kidney. Had no idea there was a separation like that
I will be lucky if mine lasts for 10 years!!
Best Wishes from Jane
Please keep posting!!
I was never on dialysis and I will be terrified when my transplant fails.
You seem to be "fairly" relaxed about it, I mean, you know what is ahead for you. I was on the transplantlist for 5 y. and never knew I was on a "list" for an old kidney. Had no idea there was a separation like that
I will be lucky if mine lasts for 10 years!!Best Wishes from Jane
Hi Rachel!
It's good to hear from you, too-it's been a long time! How are you doing? Hope all is very well!
Jane, how long have you had your transplant? What type was it-a deceased donor or living donor? Was the kidney you received from an older person? I just was wondering because you said "an old kidney"...hope you don't mind my asking. I have heard of a woman who had a transplanted kidney and donated it to another person when she died....I don't think that is too common though.
Jane, I don't know a thing about PD either! Hemo I know, but the last time I was on hemo was in 1977, so I'm sure a lot has changed since then-hopefully for the better.
I'm not terrified, just a bit nervous at the thought of PD, but have heard a lot of positive things about it, so that takes away some of the "mystery"and fear. I'm sure when the time comes for the op and all, I'll be plenty nervous!
I don't suppose there are too many people who have gone straight to a transplant without dialysis-I've only heard of a few. In a way, it is good that you don't have to mess with dialysis, but in another way, not so good because you don't know what to expect. I hope that time never comes for you, but if you ever do need dialysis, the folks on this board have so much information and are more than willing to lend an ear (or shoulder). I feel fortunate to have such friends!
The more you know about something, the less power it has to frighten you-at least that is what I have found to be true!
Pam
It's good to hear from you, too-it's been a long time! How are you doing? Hope all is very well!
Jane, how long have you had your transplant? What type was it-a deceased donor or living donor? Was the kidney you received from an older person? I just was wondering because you said "an old kidney"...hope you don't mind my asking. I have heard of a woman who had a transplanted kidney and donated it to another person when she died....I don't think that is too common though.
Jane, I don't know a thing about PD either! Hemo I know, but the last time I was on hemo was in 1977, so I'm sure a lot has changed since then-hopefully for the better.
I'm not terrified, just a bit nervous at the thought of PD, but have heard a lot of positive things about it, so that takes away some of the "mystery"and fear. I'm sure when the time comes for the op and all, I'll be plenty nervous!
I don't suppose there are too many people who have gone straight to a transplant without dialysis-I've only heard of a few. In a way, it is good that you don't have to mess with dialysis, but in another way, not so good because you don't know what to expect. I hope that time never comes for you, but if you ever do need dialysis, the folks on this board have so much information and are more than willing to lend an ear (or shoulder). I feel fortunate to have such friends!
The more you know about something, the less power it has to frighten you-at least that is what I have found to be true!
Pam
32 yr cadaver transplant recipient, now on peritoneal dialysis with the help of Audrey, my Homechoice machine... as of 4/3/09
Romans 8:28
Romans 8:28
hey Pam,
just to add that the thought of PD is far worse than the reality. It was a bl**dy pain in the arse in the early months, but two years later and it had really jsut become like brushing my teeth, as part of my daily routine that it barely registered that I had to do it anymore
I tried to think of being on PD like getting a new dog -- it is a new daily responsibility, you have to look after it, and its a major change to your life and routine... but you eventually develop a new routine around it and it just becomes part of normal life, and is something you just 'do' rather than defining your life.
I was really happy on PD and was glad I chose it, though I remember the feeling well of being nervous of starting it-- but once I got going I thrived on it
Starting any form of dialysis is a major psychological battle-- the trick is to remember that it is just a small part of your life.... someone once tod me that you dialyse to live, rather than live to dialyse and that phrase helped me win my psychological battles with it
Jen x
just to add that the thought of PD is far worse than the reality. It was a bl**dy pain in the arse in the early months, but two years later and it had really jsut become like brushing my teeth, as part of my daily routine that it barely registered that I had to do it anymore
I tried to think of being on PD like getting a new dog -- it is a new daily responsibility, you have to look after it, and its a major change to your life and routine... but you eventually develop a new routine around it and it just becomes part of normal life, and is something you just 'do' rather than defining your life.
I was really happy on PD and was glad I chose it, though I remember the feeling well of being nervous of starting it-- but once I got going I thrived on it
Starting any form of dialysis is a major psychological battle-- the trick is to remember that it is just a small part of your life.... someone once tod me that you dialyse to live, rather than live to dialyse and that phrase helped me win my psychological battles with it
Jen x