Hello! I'm new here!!
I'm 22 and have recently found out that my kidneys are broken! I have already had a heart and lungs transplant as a child so I thought I'd had my lot, but oh well!! Looks like I need a new kidney too!! I wondered if anyone could advise me on which kind of dialysis is best? At the moment I have been told to think about which one I would like the most but I'm not sure. Does anyone know if one makes you feel better than another? Or if one is more painful than the other? Any feedback would be great, thanks!
I'm new, please advise me!
Moderator: administrator
I'm new, please advise me!
Even with your eyes closed, may you see the light at the end of the tunnel
Hi Vicki,
Sorry to hear about your kidneys, I can't imagine how you must have felt after all that you must have been through! I have heard of heart transplant patients having renal failure before due to the high doses of immunosuppressants (not sure if I spelt that right?) used which can cause it.
There are various pros and cons with both kinds of dialysis. I am on PD which was my first choice but I had problems getting them to allow me to do it as they wanted me on HD. My brother is on dialysis as well but he is on HD.
The two types are:-
Continuous Ambulatory Peritoneal Dialysis (Shortened to CAPD or PD)
&
Haemodialysis (HD)
Have a look at the animations on this site which explain how they work at http://kidneypatientguide.org.uk/site/dialysis.html
I preferred PD as I am working full time and I didn't want to have to spend 4 or 5 hours at the hospital 3 times a week but when you work the times out I actually spend longer per week doing my exchanges than if I had been on HD anyway. It takes approx 30-40 minutes to do an exhange and you have to do that 4 times and a day.
You may be suitable after a few months of PD to move to APD which is basically the same but the exchanges are done by a machine overnight which leaves the whole day free which I think is the best option although I have some reservations about sleeping properly.
As far as the least painful that depends on what you are like with needles probably? HD involves an operation to create a fistula usually in your arm but can be placed in your leg if no suitable location on your arm is available. I haven't had that op although I am supposed to be having it as a backup but I can't tell you if that is painful or not?
I did find the operation for PD to be very painful BUT from what I was told before the op a lot of people didn't find it too bad. I think that it was worse for me as when I was waking up after the operation I had a bad coughing fit and I think that caused that.
The actual process of PD is not painful apart from you tend to feel a mild pain towards the end of the drain but it seems to fade with time and you can just reduce the flow by turning the twist clamp to reduce it anyway.
I can't speak for the level of pain on HD but I'm sure someone here will be able to advise you.
PD does carry a much higher risk of infection than HD but as long as you are careful and dont do anything to put yourself in any risk you shouldn't have a problem with that. (I have had 1 exit site infection but that was shortly after the op and my exit site had not properly healed at that stage). There are people who have been on PD for many years without ever getting an infection.
Are you in the UK or US? As from what I understand in the US the perferred option is HD and some people find it difficult to be allowed to do PD but it is the other way around here in the UK as there are not enough HD machines so you would probably find it difficult to get HD.
hope this is of some help
Mike
Sorry to hear about your kidneys, I can't imagine how you must have felt after all that you must have been through! I have heard of heart transplant patients having renal failure before due to the high doses of immunosuppressants (not sure if I spelt that right?) used which can cause it.
There are various pros and cons with both kinds of dialysis. I am on PD which was my first choice but I had problems getting them to allow me to do it as they wanted me on HD. My brother is on dialysis as well but he is on HD.
The two types are:-
Continuous Ambulatory Peritoneal Dialysis (Shortened to CAPD or PD)
&
Haemodialysis (HD)
Have a look at the animations on this site which explain how they work at http://kidneypatientguide.org.uk/site/dialysis.html
I preferred PD as I am working full time and I didn't want to have to spend 4 or 5 hours at the hospital 3 times a week but when you work the times out I actually spend longer per week doing my exchanges than if I had been on HD anyway. It takes approx 30-40 minutes to do an exhange and you have to do that 4 times and a day.
You may be suitable after a few months of PD to move to APD which is basically the same but the exchanges are done by a machine overnight which leaves the whole day free which I think is the best option although I have some reservations about sleeping properly.
As far as the least painful that depends on what you are like with needles probably? HD involves an operation to create a fistula usually in your arm but can be placed in your leg if no suitable location on your arm is available. I haven't had that op although I am supposed to be having it as a backup but I can't tell you if that is painful or not?
I did find the operation for PD to be very painful BUT from what I was told before the op a lot of people didn't find it too bad. I think that it was worse for me as when I was waking up after the operation I had a bad coughing fit and I think that caused that.
The actual process of PD is not painful apart from you tend to feel a mild pain towards the end of the drain but it seems to fade with time and you can just reduce the flow by turning the twist clamp to reduce it anyway.
I can't speak for the level of pain on HD but I'm sure someone here will be able to advise you.
PD does carry a much higher risk of infection than HD but as long as you are careful and dont do anything to put yourself in any risk you shouldn't have a problem with that. (I have had 1 exit site infection but that was shortly after the op and my exit site had not properly healed at that stage). There are people who have been on PD for many years without ever getting an infection.
Are you in the UK or US? As from what I understand in the US the perferred option is HD and some people find it difficult to be allowed to do PD but it is the other way around here in the UK as there are not enough HD machines so you would probably find it difficult to get HD.
hope this is of some help
Mike
I'm new, please advise me!
Dear Vikki:
Welcome to the club! You have come to the right place for help. Feel free to ask anything you want and remember there is no such thing as a stupid question.
Which dialysis to use? It's a personal choice, although sometimes you have to fight to do the one you want.
HD requires a fistula operation which takes several months to "cure" before you can use it. I don't have a fistula but I have read on this board that many clinic nurses are less than competent at sticking the needles in the fistula. Some people even do their own stick. You will be in the HD clinic 3 times per week for about 4 hours per session. Afterwards, you will probably feel tired for a while, but then you are done with dialysis for 2 days. There is also a fairly strict fluid restriction and dietary concerns. Individual clinics vary and different people have different comments about comfort aqnd noise level. Try and spend some time in the clinic if this is going to be your choice.
PD, which I do, requires manual exchanges several times per day, every day. How many exchanges depends on how well your peritoneum filters out the waste products and excess water. There is not much pain involved, except some people feel a pain in their abdomen when they have drained out all the fluid. If you are working it can be a hassle trying to find the time and place to do your exchanges. You need a large space at home to store the approximately 24 cases of dialysate that will be delivered each month, plus the ancillary items (scale, bandages, clamps, mini-caps, etc).
APD (automatic PD) uses a cycler to do several exchanges while you sleep and seems to be the most preferred among PD patients, although I can't use it as I don't drain well lying down. It allows you to have only 1 manual exchange during the day and gives you a lot more freedom. You do have to be in bed about 9 hours per night, which is more sleep than I've had in one night in the past 50 years. You still have the problem of
equipment storage plus having to have a place for the cycler and associated supplies next to your bed.
Solicit other opinions on this board (and others), talk to as many patients as you can, talk to your neph and dialysis nurse and make the choice which best fits your life style.
Good luck. Keep us informed.
--Bruce
Welcome to the club! You have come to the right place for help. Feel free to ask anything you want and remember there is no such thing as a stupid question.
Which dialysis to use? It's a personal choice, although sometimes you have to fight to do the one you want.
HD requires a fistula operation which takes several months to "cure" before you can use it. I don't have a fistula but I have read on this board that many clinic nurses are less than competent at sticking the needles in the fistula. Some people even do their own stick. You will be in the HD clinic 3 times per week for about 4 hours per session. Afterwards, you will probably feel tired for a while, but then you are done with dialysis for 2 days. There is also a fairly strict fluid restriction and dietary concerns. Individual clinics vary and different people have different comments about comfort aqnd noise level. Try and spend some time in the clinic if this is going to be your choice.
PD, which I do, requires manual exchanges several times per day, every day. How many exchanges depends on how well your peritoneum filters out the waste products and excess water. There is not much pain involved, except some people feel a pain in their abdomen when they have drained out all the fluid. If you are working it can be a hassle trying to find the time and place to do your exchanges. You need a large space at home to store the approximately 24 cases of dialysate that will be delivered each month, plus the ancillary items (scale, bandages, clamps, mini-caps, etc).
APD (automatic PD) uses a cycler to do several exchanges while you sleep and seems to be the most preferred among PD patients, although I can't use it as I don't drain well lying down. It allows you to have only 1 manual exchange during the day and gives you a lot more freedom. You do have to be in bed about 9 hours per night, which is more sleep than I've had in one night in the past 50 years. You still have the problem of
equipment storage plus having to have a place for the cycler and associated supplies next to your bed.
Solicit other opinions on this board (and others), talk to as many patients as you can, talk to your neph and dialysis nurse and make the choice which best fits your life style.
Good luck. Keep us informed.
--Bruce
Hi Vikki.
Welcome on board!
What a bummer! You've had more than your fair share that's for sure.
I notice that you are located in the Stoke on Trent area and I too am looked after by the Stoke renal team.
They are a magnificent bunch and will help in any way they possibly can.
Periodically they have renal "open evenings" for clients, like yourself, who are needing to make decisions regarding the preferred method of dialysis - We are lucky really as options are not offered to everyone, everywhere.
I would strongly advise you to attend this evening - while it's not the social event of the year, it does give you the opportunity to speak to patients who are on dialysis and you get an opportunity to meet the staff too, as well as watching a patient undertake a fluid exchange and a browse around the haemodialysis unit.
I had leanings toward P.D. and attendance at this evening confirmed my decision.
Good luck with it .
Welcome on board!
What a bummer! You've had more than your fair share that's for sure.
I notice that you are located in the Stoke on Trent area and I too am looked after by the Stoke renal team.
They are a magnificent bunch and will help in any way they possibly can.
Periodically they have renal "open evenings" for clients, like yourself, who are needing to make decisions regarding the preferred method of dialysis - We are lucky really as options are not offered to everyone, everywhere.
I would strongly advise you to attend this evening - while it's not the social event of the year, it does give you the opportunity to speak to patients who are on dialysis and you get an opportunity to meet the staff too, as well as watching a patient undertake a fluid exchange and a browse around the haemodialysis unit.
I had leanings toward P.D. and attendance at this evening confirmed my decision.
Good luck with it .
Hi Vikki
Hello Vikki!I'm 28 now and was only 20 when my kidney's failed so I can relate!
Sounds like you've had much more than your share-not fair-think they should spread illness around fairly so its not alwys us getting everything!!
As for dialysis, as I'm sure the others have said, it just depends n you as an individual, I had hemo through a tube in my neck as an emergency for about 14weeks and that made me feel v poorly, plus I didn't like the sound of the fistulla and all the needles so I opted for CAPD (not that I liked the sound of a tube in my tummy either!!) I was on that for about a yr and a half and although it wasn't pleasant it made me feel as well as possible and cause you weren't tied to the hospital as much you could do a bit more.
Please feel free to ask any questions or send me a private message if you wana talk. This board is great-you'll find the people v supportive and helpful!
Good luck,
Nikki. xx
-
JMan
- Posts: 3473
- Joined: Fri Apr 23, 2004 10:21 am
- Location: Lives in a slightly weird bit of Shropshire called Telford!
Aah the age old Q...
The decision should be made on the following (IMO):
Medical suitability
Your lifestyle
Your personal preference.
take a look at the archives of various boards
http://groups-beta.google.com/groups?q= ... a=N&tab=wg is a goodish place to start and try searches for 'hemo or PD' or 'which type of dialysis'.
Ask LOTS of Q's of everyone including the good folks here..
Personally I did pretty well, (stable & able to go to university ) on haemodialysis but then I know those who have done the same on PD.
Just my 2p's worth
The decision should be made on the following (IMO):
Medical suitability
Your lifestyle
Your personal preference.
take a look at the archives of various boards
http://groups-beta.google.com/groups?q= ... a=N&tab=wg is a goodish place to start and try searches for 'hemo or PD' or 'which type of dialysis'.
Ask LOTS of Q's of everyone including the good folks here..
Personally I did pretty well, (stable & able to go to university ) on haemodialysis but then I know those who have done the same on PD.
Just my 2p's worth
"Dialysis! What is this? The dark ages!"
L. 'Bones' McCoy, ST"
Read my blog:)
Live to Fly
http://www.flickr.com/cybercast
L. 'Bones' McCoy, ST"
Read my blog:)
Live to Fly
http://www.flickr.com/cybercast
Hi Vikki, it is really down to your preferences and lifestyle. I have been on HD since last May. PD was not really an option for me due to the disease that destroyed my kidneys (Henoch-Scholines Pupora, or HSP as its known) It was felt I would be at a high risk of peritineal ulcers if I made that choice. I am fine on HD and work full time although its a bind commuting to clinic 3 times a week. I am lucky that I drive myself to and from clinic as I know many people are peeved off at the waiting game with the transport arrangements. I usually feel quite well after my dialysis. I now put in my own needles and have less problems than when the nurses put them in. I think this is because I can feel my veins better than the nurses could as they are quite deep on me.
Good luck and remember if your first choice does not prove to be working for for you for whatever reason you can try one of the alternatives.
Good luck and remember if your first choice does not prove to be working for for you for whatever reason you can try one of the alternatives.
Hi Vikki,
Welcome. A lot of advice has been given already, but I personally I went for pertioneal dialysis. I do this for 9 hours every night and for no time during the day.
It suits me with no being tied down for 3 afternoons a week at the hospital plus longer if like a lot of people (my self included when I was on it for 6 months) you feel crap afterwards - basically ruling out nearly 3 days of the week.
Also the main thing for APD for me was the diet restrictions. People on haemodialysis tend to have a restricted diet (fruit, vegetables, etc etc), whereas I am relatively free to eat whatever. I can also drink more that I would be able to - I manage fine on 1.5L + per day now, but it used to be half that on heamodialysis.
I am also a young 'un (23) and trying to finish my degree, so its good to have the freedom. I have also been able to go abroad to New York / California / Spain as the supplies are delivered for you and you just take the machine with.
Good luck, feel free to PM me.
Hal.
Welcome. A lot of advice has been given already, but I personally I went for pertioneal dialysis. I do this for 9 hours every night and for no time during the day.
It suits me with no being tied down for 3 afternoons a week at the hospital plus longer if like a lot of people (my self included when I was on it for 6 months) you feel crap afterwards - basically ruling out nearly 3 days of the week.
Also the main thing for APD for me was the diet restrictions. People on haemodialysis tend to have a restricted diet (fruit, vegetables, etc etc), whereas I am relatively free to eat whatever. I can also drink more that I would be able to - I manage fine on 1.5L + per day now, but it used to be half that on heamodialysis.
I am also a young 'un (23) and trying to finish my degree, so its good to have the freedom. I have also been able to go abroad to New York / California / Spain as the supplies are delivered for you and you just take the machine with.
Good luck, feel free to PM me.
Hal.
When I first went on dialysis over six years ago I was given the option of HD or PD but the advice was heavily slanted to PD [because, I believe, this is much cheaper for the hospital and places less strain on their resourses]. But when the time came for the insertion of a stomach catherer I was too ill for the op and was given temproary HD which decided me that that was the way to go. Having had several friends who were on PD and, because of subsequent infection, had to eventually go on HD I am now glad that I opted for HD. As I live within 15 minutes walking distance of my hospital it is very convenient and as I do dialysis in the evenings I have all day every day free to pursue normal [or what passes for me as normal!] activities and, best of all from my style-conscious point of view, I don't have to turn my apartment into a factory storage area. So I am quite happy with my choice of HD.
Hi vicki
Im in the same situation as yourself and Rather than start another thread I'd just join yours. Was told I had 'Goodpastures Syndrom' on xmas eve so santa got me a dialysis machine for chrimbo. . I've had an emergency line put in and am on hd for now amd face the same questions as yourself. It is a bit tiring nut thats all the effects I've noticed. Being 23 myself and pretty much at the same stage of tryin to find things out i thought you might be interested in sharing whatever cause we're both going to come across a lot of opinions when trying to decide what type of treatment to chose
Im in the same situation as yourself and Rather than start another thread I'd just join yours. Was told I had 'Goodpastures Syndrom' on xmas eve so santa got me a dialysis machine for chrimbo. . I've had an emergency line put in and am on hd for now amd face the same questions as yourself. It is a bit tiring nut thats all the effects I've noticed. Being 23 myself and pretty much at the same stage of tryin to find things out i thought you might be interested in sharing whatever cause we're both going to come across a lot of opinions when trying to decide what type of treatment to chose
-
Julie
Why my husband chose PD
My husband chose PD for several reasons:
1. He is terrified of needles - the thought of having to have needles stuck in his arm 3 times a week frightened him almost to death.
2. He saw an HD patients fistula - a lump under the skin and which buzzed. He didn't like the idea of it. I understand that they aren’t all lumps, but the one we were shown was definitely a lump - I think it depends whereabouts in the arm they are.
3. He didn't want to spend 4 hours, 3 times a week sitting with a bunch of “sickâ€
1. He is terrified of needles - the thought of having to have needles stuck in his arm 3 times a week frightened him almost to death.
2. He saw an HD patients fistula - a lump under the skin and which buzzed. He didn't like the idea of it. I understand that they aren’t all lumps, but the one we were shown was definitely a lump - I think it depends whereabouts in the arm they are.
3. He didn't want to spend 4 hours, 3 times a week sitting with a bunch of “sickâ€