I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: Swee_tone on March 30, 2009, 01:36:14 PM
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It's probably been covered here, but I would love to hear some personal viewpoints, the reasons for the decisions, and the outcomes.
I've read alot here, but would like to have have a personal decision well in advance.
Thanks guys.
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No choice was given to me. No discussion at all, just hemodialysis.
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My hubby couldn't do PD because of abdominal surgeries and an open abdominal wound for 4 1/2 years. We did in center for a little over a year and then switch to home Hemo. He had a transplant 18 months ago. :waving;
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Well for me... I originally started out on hemo (wasn't my choice, failure came out of the blue) and it never went well. I had a lot of problems with the perma-cath not working and was sick all the time due to inadequate dialysis. So when I was given the choice of hemo (getting a fistula) or PD - I decided on PD for a few reasons. I didn't want to be stuck in the center for hours and hours at a time, I'd much rather be in my own home. At least I'm comfortable and can sleep here if I want.
Another issue is I have trouble sitting still, I don't like to be confined to a chair or a bed for a long period of time. Although PD is more work in the beginning (the first month of manual) - it's not consistent. You do it for 20/30 minutes and then get a 3 hour break. I also feel much better on PD than on Hemo (again, could just be that I didn't get adequate dialysis) but I always felt horrible walking out of the clinic and it didn't get better til it was time to go back again. They say PD is a more natural way to get rid of the toxins and is easier on the body. I also didn't want to have a fistula scar on my arm for life... because hopefully this dialysis is temporary. The PD catheter scar is small and can easily be covered up by a shirt.
So there's a few of the reasons why I made the decision I did - make sure you do all the research and understand fully what each one entails. Neither of them are going to be peachy.. this is dialysis after all but it's better than the alternative. Everyone is different so make sure to make the best decision for YOU - I wish you luck in deciding!
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I was twenty when I finally got sick enough to begin dialysis. I had been sick for years. For me personally, being young and having a boyfriend and wanting to wear bikinis in the summer, I did NOT want any tubes in my stomach. It was just a no brainer for me. I was not thrilled about needles but what can ya do? I would rather go to dialysis a few times a week and not think about it or have to do anything the other days, rather than having to do something daily or a few times daily.
It is a personal choice and many people feel differently about it.
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I started out on Hemo, my wife was having to take me to and from cinic's her work place was not happy about that. So I went with CCPD at night so she wouldn't miss any more work.
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For us PD was chosen by the doctor because of our geographic location to the nearest center. the doc also decided noctural over continuious which I'm very happy for.
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I started home hemo training three weeks ago and I have had nothing but one problem after another. I am still definitely going to stick to it though because I want to do it at home and I also don't want tubes hanging out of my stomach. The needles are a walk in the park. Not nearly as bad...not even bad at all....as I was expecting. Everyone is so different. I am a bit of a control freak so I am really happy to be doing it myself. It is such a personal choice. When the time comes, you will choose what is best for you. xx
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I didn't want to be stuck in the center for hours and hours at a time, I'd much rather be in my own home. At least I'm comfortable and can sleep here if I want.
You do it for 20/30 minutes and then get a 3 hour break.
They say PD is a more natural way to get rid of the toxins and is easier on the body. I also didn't want to have a fistula scar on my arm for life... because hopefully this dialysis is temporary. The PD catheter scar is small and can easily be covered up by a shirt.
Thanks to everyone for their replies.
I can see why you would like to be at home.
Kristi, have you decided not to do the PD at night?
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I started home hemo training three weeks ago and I have had nothing but one problem after another. I am still definitely going to stick to it though because I want to do it at home and I also don't want tubes hanging out of my stomach.
Here in Canada, I believe the NX stage is not available, and i'm uncertain of any others available for home hemo.
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No nxstage is not available in Canada. There are a couple of different machines that are used for home hemo ( nocturnal included). Hubby uses a Fresenius 2008H for nocturnal. Another fresenius is the 2008K. There are also Gambro machines that are used. Those are the 2 types I am familiar with. There may be others.
What part of Canada are you from swee_tone?
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I didn't want to be stuck in the center for hours and hours at a time, I'd much rather be in my own home. At least I'm comfortable and can sleep here if I want.
You do it for 20/30 minutes and then get a 3 hour break.
They say PD is a more natural way to get rid of the toxins and is easier on the body. I also didn't want to have a fistula scar on my arm for life... because hopefully this dialysis is temporary. The PD catheter scar is small and can easily be covered up by a shirt.
Thanks to everyone for their replies.
I can see why you would like to be at home.
Kristi, have you decided not to do the PD at night?
Firstly, Oh my God! Your avatar scared me half to death! I tried to kill the bug then I was like "he's in my screen!!!" and started panicing then I scrolled up for some reason and he moved... tricky tricky >:D
Secondly, no - I definitely want to do it at night! But you have to do manual for a month in the beginning to prove that you know how incase there were a power outage and you couldn't use your machine. 2 1/2 more weeks of manual for me! I can't wait!!
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I have done both pd and hemo, and feel that pd gave me better dialysis and more flexibility. You can travel very easily on pd and your time is not dictated by a dialysis schedule. Also, I felt better on pd, no ups and downs and no dialysis hangovers. Your diet is less restrictive on Pd as well as your fluid restriction. I also liked being able to take care of myself at home. I find the dialysis center very depressing.
I am have to be on hemo right now, but if I could I would go back on pd in a second. :bunny:
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Firstly, Oh my God! Your avatar scared me half to death! I tried to kill the bug then I was like "he's in my screen!!!" and started panicing then I scrolled up for some reason and he moved... tricky tricky >:D
Secondly, no - I definitely want to do it at night!
2 1/2 more weeks of manual for me! I can't wait!!
Sorry about the bug! I thought he was a cute little guy just wandering around, so please dont try to squash him! Glad to hear things are going better in a couple of weeks, thanks for the reply.
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I have done both pd and hemo, and feel that pd gave me better dialysis and more flexibility. You can travel very easily on pd and your time is not dictated by a dialysis schedule. Also, I felt better on pd, no ups and downs and no dialysis hangovers. Your diet is less restrictive on Pd as well as your fluid restriction. I also liked being able to take care of myself at home. I find the dialysis center very depressing.
I am have to be on hemo right now, but if I could I would go back on pd in a second. :bunny:
Sounds like a lot of good reasons for the PD. Thank-you.
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I'm a control freak, I admit it. If anything is going to go wrong, I want it to be my fault not at the whim of someone else. I chose PD. I can do it when I want, where I want, and I don't have to dress up and leave the house!
On an aside, that bug is extremely annoying (at least to me).
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I like the bug, then again many people say i get under there skin and bug them??
I am predialysis but will be doing PD for all the above reasons. Until i found IHD i was unaware of PD. My Main reason for choosing this is from what i gather more people on PD feel good enough to work full time. Not as many ups and downs. And i would rather be home with Karen then in a center with strangers.
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I've done it all..... PD, Home Hemo, In center Hemo, Transplant, Nocturnal.
Transplant was the best of course. Then came PD because I could do it myself and my own schedule. They didn't have the cycler back then but I bet it is nice. Then I liked Nocturnal which I still do. Then in center Hemo, then home hemo last because I didn't like to see my house turn into a hospital. My house is my space and I don't want to think about dialysis. PD I could lock it up in a closet.
Just my :twocents;
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I've been doing in-center hemo since October 2008 and I have been wanting to switch to PD. Going to the center 3 days a week is inconvenient but tolerable. But the hemo kicks my butt most weeks and while I know it is keeping me alive, I feel lousy most of the time. I tried going back to work but that lasted just 2 weeks. Just didn't have the energy.
Since I just got word that I will be entering the transplant process and on dialysis "long-term", I have a consult this week with a surgeon to get a PD catheter inserted in the next month or so. Everyone I have talked to is telling me that PD is the way to go (less restrictive diet and fluid restriction, not as harsh on your body, etc.). So I hope it will be a more positive experience.
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I have a transplant now but my first choice when I first started was home hemo which gave me flexibility and good quality dialysis. The second time around, just recently, I did 5 days a week, 2 and a half hours at a time, in a self-care clinic. For me personally, PD was never an option, because I felt that it would be too disruptive to my sex life, which I've been lucky enough to hang on to through all this ESRD stuff. However, I didn't find the needles awful and I have spoken with some people who managed very well to work around their PD catheters and fills when it came to their sexuality so, like so many aspects of this illness it comes down to what works for you individually.
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Ok , well this has been very informative. Thanks very much for your replies guys.
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No nxstage is not available in Canada. There are a couple of different machines that are used for home hemo ( nocturnal included). Hubby uses a Fresenius 2008H for nocturnal. Another fresenius is the 2008K. There are also Gambro machines that are used. Those are the 2 types I am familiar with. There may be others.
What part of Canada are you from swee_tone?
Apoligies for missing this...I'm from British Columbia , Del. I will do some research on the machines you have named. Thanks!
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Can you start PD right off the bat or do you have to start with hemo first? I think I would like PD right away if I could do it that way. As much as I would love to let someone else do all the work. I couldn't be away from home for long periods of time without it being a major problem down the road. If I can avoid putting my kids in to day care I want to. So I mean if I could wait until they started school that would be perfect cause then it won't matter so much. But that means I have to stay where I am at for a year. And although I hope that happens who knows. Just want to be as ready as I can when the time comes.
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Can you start PD right off the bat or do you have to start with hemo first? I think I would like PD right away if I could do it that way.
I hope your situation works out for you, i'm sure things will fall into place.
After talking to a friend on PD and the discussions here, I think that would be best suited for me. I'll fill you in on the details when the time comes.
Thanks for the help! :beer1;
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Manda yes you can start PD right away. The operation actualy heals much faster then if you were to get a fistula.
As for the kids you can do it while you sleep :thumbup; and have your days free.
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Sween_tone that would be wonderful :thx; and you asking this has actually helped me more then you will know. I asked a little bit when I first got on the site but this helped a lot more.
And Thanks Paul.Karen. I have been meaning to read up on PD more. I still have some links to go to. I just have been to lazy to do it. Eh. But yeah thanks
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Hi Swee Tone I originally chose apd because I work full time and my residual kidney function was such that I didn't have to carry fluid during the day so it could all be done while asleep. I had the usual teething problems but these resolved themselves after a couple of weeks. Had I known how painfull peritonitis could be I would have thought a bit harder about doing it.
I contracted peritonitis in December last and it was such a bad strain of bacteria that I had to have the catheter surgically removed in order to get rid of the infection completely.
However many pd patients go for long periods with no problems and some have been doing pd for years without ever contracting it. Also for most patients who do get it, it is usually one of the less virulent bacterias and usually clears up with antibiotics within 48 hours without infecting the catheter. Dialysis can then be continued without the need to remove and replace with a new catheter.
I decided that knowing my luck, if I had my catheter replaced and continued with pd I would eventually get the same type of peritonitis again. I didn't want to risk that so for the last 3 months I have been doing in centre haemo. Although studies have shown that pd gives just as good a dialysis as haemo, some patients fare better on pd and vice-a versa.
For me although I thought I felt well on pd, after under going haemo I am now experiencing the kind of energy levels that I must have forgotten it was possible to have. If I'd known then what I now know, I would have chosen Haemo from the start because Ifeel so well on it. Hope this has been helpful but you must try to get as much info as you can about the two modalities of dialysis so that when the time comes you can make the right choice for you. Good Luck.
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Another thing you should know about PD is that in some people it does stop working and you can become really sick. Hubby's peritoneum (spelling) stopped working after about 2 1/2 years. Fluid wasn't being removed or any toxins. He became very sick. Some people are lucky and this doesn't happen but some people have no choice but to change to hemo or have a transplant. For the people that it does work for it is a good choice if they want freedom from gong to a dialysis center. Another dialysis option of course is home hemo. You have to choose what would be best for you but you need to keep in mind the pros and cons of all types of dialysis.
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ok thanks guys. I think there are positives & negitives to anything, but I guess it's good to see in advance the difficulties people have had. ... which makes it a tough decision. I'll do more research, I have some time yet, but wow! this is difficult stuff!