I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Home Dialysis => Topic started by: malaka on December 20, 2011, 02:52:28 PM
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My treating nephro told me I'd likely start dialysis in January sometime. My debate is PD or home hemodialysis.
For me, potential relative contraindications to PD are: type 2 diabetes controlled with insulin and history of abdominal surgeries for hernia and for appendectomy.
Potential relative contraindications for home hemodialysis are dislike of thought of forced inactivity, nephrotic syndrome which sometimes swelling makes it hard for even the pros to stick the needle in for blood samples,
dealing with all the hardware when I want to travel to a vacation cottage via car (forget long distance jet travel for now).
I know I can't get the medical answer here, but I am hoping to get some Quality of Life information from those on either type of dialysis. What are the positives and negatives of these alternatives in every day life?
I probably won't continue to work as I'm close enough to retirement age to apply for SSD until age 62 and can't really continue my job if I'm there part time -- I'm self-employed and would end up paying for the privilige of working if I were to continue.
All comments are gratefully sought.
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That's a really tough question. For me it was PD since I don't like needles and I live alone. Some people say home hemo makes you feel the best. I like PD although it isn't perfect. It takes a lot of time and you have to wear elastic waist pants. Both need some storage space at home.
Good luck!
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Wait, what does your nephrologist say? This person is telling you that you will be starting dialysis in January (in a matter of weeks??) but you have not yet chosen a modality? Were you going to start hemo incentre with a catheter, or do you already have an access placed?
If you have a history of abdominal surgeries, it does not sound like PD is even an option. Has a doctor said otherwise? Have you had vein mapping done?
I cannot answer your quality of life questions as I never did home dialysis. Home hemo is generally what doctors on dialysis choose or say they would choose if they were to find themselves in renal failure if that helps. Also, as you may already know, PD is not something that can be performed indefinitely, so depending on how long you think you will be on dialysis, hemo may be inevitable. Good luck.
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I have had major abdominal surgeries and have managed with no apparent problems to have a PD catheter installed.
CAPD was my first choice years ago when dialysis was obviously down the track. I have only been on PD for a week, and I'm very pleased with the way things are going so far.
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I have been on PD for 14 months, I have never had abdominal surgery, so I can't speak to that, But I am Type 2 diabetic. I only use 1.5 and 2.5 solutions. I start with the 2.5 and end with the 1.5. I really do try to watch what I eat. Right now I only use Levimir for my diabetes. I saw the endo today and she was well pleased with how well I am controlling my sugar.
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I had two major abdominal surgeries and one minor abdominal surgery......2 C sections and a tubal litigation.
They told me when I was considering PD that just because you've had abdominal surgeries, does not mean you can't have PD cath.
I was told they'd assess, surgically go into my abdomen but it was not a guarantee until they opened me up and scoped around.
I did not choose PD, in the end, but that is what I was told when I went to the clinic to learn more about it.
In the end, I chose to stick with in center hemo.
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I've been on PD for 1.5 yrs. Work about 55 hours a week. Racqutetball twice a week. Spinning class once a week. And I still have energy to mow the lawn on weekends.
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I can't personally speak for my wife but from what I can tell she likes the home hemo over anything. Luckily her neph doctor at the time recommended the fistula knowing she was going to be ending up with end stage failure. She always tells me how it is more sanitary to do it at home compared to the centers and how she would rather be the one cleaning and sticking herself rather than someone else. I can't blame her. She enjoys being able to sit in our house in a comfortable lazy boy watching the big screen while doing treatment. Traveling with the NxStage machine wasn't too bad. Other than it being bulky and pretttyy heavy the airlines took care of it very well. And when we got to the hotel all the supplies we needed were waiting at the service desk. You will definitely need a storage area for all the supplies. Cartridges, drain lines, sac's, hanging bags, and usual medical supplies like gauze, alcohol pads, etc.
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Potential relative contraindications for home hemodialysis are dislike of thought of forced inactivity, nephrotic syndrome which sometimes swelling makes it hard for even the pros to stick the needle in for blood samples,
dealing with all the hardware when I want to travel to a vacation cottage via car (forget long distance jet travel for now).
1) There's no forced inactivity if you do nocturnal. You're asleep anyway and your days are your own.
2) Don't know anything about nephrotic syndrome, but I do know I'd rather do my own needling. You know your body and your access better than any technician and needling yourself allows you to 'feel' your way in.
3) If you do NXstage then yes, you're going to have a lot of hardware to drag around. If I want to travel, I just have my center make arrangements with a center near my destination and I don't have to take anything with me at all. I just show up.
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once you start dialysis, you will be able to control the swelling that comes from not being able to eliminate fluids from your body.
I am not diabetic, but after 8 years on PD, and having to continually increase the number of exchanges, I gained weight and believe I was beginning to experience some problems with my blood sugar. I would think that hemo would be better for a diabetic. (of course i'm no doctor, so that's just my opinion) Having said that, I really enjoyed the freedom of PD. Perhaps if you can learn more about the details of each therapy yo will be able to make a more informed choice for your own body and needs. Good luck to you!
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Thanks to all. I'm getting evaluated for PD this week, but today's nephro visit resulted in me being told that I'll have to start hemodialysis at least temporarily. If PD is out, then I'll be trained in home dialysis.
As Roseann Roseanna Danna used to say: "if its not one thing, its another."
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Roseann Roseanna Danna was a very wise woman. :2thumbsup;
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Roseann Roseanna Danna was a very wise woman. :2thumbsup;
I love it! :beer1;
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I miss Roseanna Danna. I really liked the ole SNL back then.
lmunchkin
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I wanted to just add that I had past abdominal surgeries, 2 PD cath placements including one 2mths after my open bilateral nephrectomy which was a huge abdominal surgery(65 staples) and PD works for me.
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I've done both forms of dialysis, and i'm currently on 'nocturnal' hemo (i use 'nocturnal' loosely because i don't do that anymore, the machine I have is wayyyyy too loud at night to sleep).
I'll be brutally honest and say I hated both forms of dialysis, it boils down to which one sucks less. And if i had to choose, I'd say home hemo sucks less - but not by much.
PD - if everything goes right, manual exchanges should take about 30 min or so. I enjoyed the fact that traveling is much easier, I only had to contact baxter 2-3 months in advance to let them know where I'll be staying. However, i did manual exchanges during traveling, and I found that I was busy looking at the clock worried about my next exchange than enjoying myself. I eventually went on the cycler, but the machine is noisy, when it move fluid from the cold bag to the heater bag, it makes alot of weird, inconsistant sucking noises, and in a quiet room, you notice it. I eventually banned the cycler from the bedroom to the living room (you can connect up to 2 patient lines, so that is how I got to move the cycler to the living room while I slept in the bedroom).
Everyone is different here, but when I sleep I hate being attached to anything as I toss and turn alot at night. Being connected I had to conciously make sure that i don't roll over the pd tube or else the machine will alarm.
Since you aren't going to work, that will help, if you do work it makes it tricky to do your exchanges. But if you go on the cycler, then that isn't bad as it gives you the whole day, however, it also prevents you from staying out late as the whole exchange will last 8 hours - I used to get hooked up at 9 pm so I'd be done by 5 am the next day.
Depending on your peritoneal membrane, your diet maybe restricted. Mine was low average meaning it took forever for the bad stuff to dialyze out so I was on the renal diet despite being on dialysis.
I also hated the catheter, I found it looked awful, plus I had to use 2 L fills so now my abdomen is somewhat disfigured from having that much fluid in there for such a long period of time.
You mentioned you're diabetic, PD solutions range in sugar content, so you may have to be careful there.
Hemo - I do mine at home, 7 days a week. At first I was scared to needle, but after a while you do get used to it - though i'm not sure if anyone can get fully used to jabbing themselves with a horse needle. Since I do dialysis everyday, my diet has expanded. I can now enjoy foods that I had to put on hold for years, like orange juice and milk. I can enjoy a big bowl of fibre cereal because I know I'll be dialyzing the phosphourous and potassium out later that day. Plus the fibre is good for the bowels.
We don't have the nxstage up here, I am using the bellco formula and this machine is extremely noise (I only use one needle, but the machine is setup for double pump). Because it is double pump, the clamp opens/closes constantly and that is the main source of the noise. Not to mention the machine is extremely sensitive and alarms if you look at it funny.
it is also alot of work to setup the machine, and then when done, to strip it down. At times I like to go to the unit to dialyze because the nurses setup the machine for me.
As for traveling, you can travel but you do have to make arrangements yourself with the dialysis centre. Some are good, went to seattle last year and the people at northwest kidney centre were fantastic.
both forms of dialysis requires a large amount of supplies, so you'll need space to house all the supplies, plus the garbage it generates is enormous. There is alot of boxes for both. Home hemo also increase your electricity and water bill too. But I do like the fact that the travel time is only the time it takes to walk from the living room to the spare bedroom.
As you can see, the main reason I give home hemo a slightly advantage is the diet (for me anyways), you can enjoy a wider range of foods plus drink a tad more fluids.
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I have done it all except nocturnal. I did PD for 8 years before my 2nd transplant. When I lost that, I thought I will just go back to PD. Nope, too much scar tissue in my abdomen. I now have no choice but to do hemo. Right now I just finished my 1st week of training for home hemo. PD is easier, however, so far this isn't as hard as I thought.
The noise of the PD machine never bothered us, with the fan usually going they kind of blended together. There are a lot of supplies, but we just got used to having them around and I found it very easy to travel especially if it was a weekend get away.
We plan on going to Yellowstone at the end of summer, I will have to report my Nxstage experience.
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I've done both forms of dialysis, and i'm currently on 'nocturnal' hemo (i use 'nocturnal' loosely because i don't do that anymore, the machine I have is wayyyyy too loud at night to sleep).
Two words: ear plugs
I had to use them at first but now I've just gotten accustomed to the machine. And if there are alarms you can still hear them loud and clear.
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My first Baxter cycler was very loud making all sorts of weird whining, sucking, ticking, and buzzing noises,
I got a second cycler and now it is very quiet. The difference is amazing. So I think just the mechanics of these machines can make a difference. If a machine is too loud then I'd request a replacement.
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My first Baxter cycler was very loud making all sorts of weird whining, sucking, ticking, and buzzing noises,
I got a second cycler and now it is very quiet. The difference is amazing. So I think just the mechanics of these machines can make a difference. If a machine is too loud then I'd request a replacement.
I'd forgot all about it, but my first machine sounded like a giant electrical transformer. We were so upset because it didn't sound like that in-center and we knew we could never sleep with that noise. Turns out it was just a part needing replacement; the tech swapped it out and the noise stopped.