feeling some peace of mind

[texasstyle]

Hello everyone. As you may know my husband is thinking of home dialysis. Possibly peritoneal. After reading about it and learning here by reading other posts, I was still feeling it might be all a little over whelming to do. Well, today I had a talk with a new neighbor and it turns out she has been a nurse involved with dialysis treatment since the 70's. She has trained people how to use home dialysis. According to our discussion, peritoneal is much more gentle on the body, and the "exhausted" feeling after a clinic treatment is lessoned as well as the cramping. I believed you had to sit with the fluid in you several times a day but she said you can even go out. Sometimes you may feel pressure or refereed pain in the shoulder though. I had just read here today about the swimming with the cathater and she brought that up. She spent her time explaining that creatinine is released from the muscles, and the BUN is reflective of the renal diet. After our talk I think I feel more like I could handle being the partner of a peritoneal patient. I guess once you getthe swing of it it gets easier. I would so much appreciate it anyone can elaborate on anything I've said. Trying to learn all I can about the diet. My husband totally neglects it. Scares me. Keeping my usually good spirits up, Carolyn

[Hanify]

I do PD at home with a cycler.  I was doing manual bags for a while first, but they changed me to the cycler.  I have 2liters of fluid in me all day, then I hook up to my machine at night when I go to bed, and the machine goes for 9hours.  Initially I found it difficult with the machine, nothing physical - just felt weird being hooked up.  But I'm so used to it now I can't imagine going back to manual.  I will be doing manual while I'm on holiday (tomorrow), so will let you know how I go.  When you do manual wou usually do one 'exchange' in the morning when you get up, one at 12 one at 5, then one when you go to bed.It only takes about 40mins for an exchange, and I have done them in all sorts of places - work, home, friend's places, even the pub!  I have travelled with PD to Australia, the US and tomorrow am off to Samoa!  I have travelled more since I started dialysis that I did before.  Hope some of this helps.  Keep asking.

[KICKSTART]

If you want to be in charge of your own life and dialysis then PD is for you. If you dont like attending hospital every other day then PD is for you. The downside is you will need plenty storage for all your supplies.You usually do 4 manual exchanges every day (no days off) You dont mind looking like you are pregnant (the fluid) You will be told not to bath , showers only and no swimming. The upside you are in control , dialysis is gentle and steady. You can after a while go on to a cycler ( a machine that does all your exchanges for you during the night) so your days are free! Believe me ive done PD for years but now its stopped working ( it doesnt last forever) and now im on hemo and i hate it !

[paul.karen]

Texasstyle,
I just started doing PD about2 weeks ago.  It is very easy and all you were told is true.  And your liquid and food restrictions Generaly are not as strick as they are on hemo.
I went straight to the cycler.  I did two manuals at my clinic just n case of a power outage or other circumstance.  One of he main concerns with PD is getting peritonitis (bugs in the body so to say) which can be painful and even lead to not being able to do PD.
I still work so to me i couldn't do exchanges during the day.  Also the easiest way to get peritonitis is during Hooking up and unhooking.  Which you do on manual ( times a day 4 hookl-up four unhooks.  As where on the cycler you only hook up and unhook once per day.
I was suppose to carry liquid during the day but it decided to stray north and absorb so i have since started being dry during the day.
My main issue is being on a leash at night.  But im getting use to it.

Best of luck on your decision.

[sico]

Texasstyle, PD is way more gentle on you than HD. Just got to be real clean with things. I am on the baxter cycler every night and it leaves me with 1lt during the day. I hardly notice the fluid or the catheter is there.

[peleroja]

I also do PD on the cycler and carry 2500 ml all day.  I have traveled more in the past 6 years than ever before.  I have done my dialysis on a ship to Alaska, on trains, buses, in airport bathrooms (shh, don't tell my nurse!), etc.  If you keep your wits about you and really think about what you're doing, you can do PD pretty much anywhere.  In fact, the only time I got peritonitis was due to an abdominal hernia that got infected, not due to lack of cleanliness on my part.  Good luck to you and your husband, and be sure and check back with us and let us know how it's going.

[Jenabcd]

Hi Texasstyle;   I also do PD, so thought I'd put my 2 cents worth here too, just to show that every person is different, even if using the same type of dialysis.  I also use the cycler, but I still have to do one exchange during the day also, so there is that one extra "hook up/un hook" thing goin' on.  Like the others say though, I focus on what I do, do it cleanly (is that a word?), and all has been working for me for 8 months so far. I do carry 1500 in me during the early part of the day, and then after my afternoon exchange and the rest of the day/night, it's 2000 ml.  I am actually loving the diet.  Pre-dialysis I could not eat Potassium (among other things).  That was the hardest for me... I am a tomato girl!!  lol  Well, the PD does take out the potassium.  Many PD patients are fine and have no problem with that.  For me, it takes out more than I can handle.  I eat potassium like crazy now, but still have to take potassium supplements to keep it up there.  I've been in the hospital for the last few weeks (not peritonitis!), and they even put potassium in my dialysis bags!  Everyone is different.  Take it all in, learn, and you'll do fine.  :-)   Oh, I have traveled also...  went to Mexico several months ago!  Baxter delivered the bags -- awesome.

[CCStan]

Hi Texasstyle;   I also do PD, so thought I'd put my 2 cents worth here too, just to show that every person is different, even if using the same type of dialysis.  I also use the cycler, but I still have to do one exchange during the day also, so there is that one extra "hook up/un hook" thing goin' on.  Like the others say though, I focus on what I do, do it cleanly (is that a word?), and all has been working for me for 8 months so far. I do carry 1500 in me during the early part of the day, and then after my afternoon exchange and the rest of the day/night, it's 2000 ml.  I am actually loving the diet.  Pre-dialysis I could not eat Potassium (among other things).  That was the hardest for me... I am a tomato girl!!  lol  Well, the PD does take out the potassium.  Many PD patients are fine and have no problem with that.  For me, it takes out more than I can handle.  I eat potassium like crazy now, but still have to take potassium supplements to keep it up there.  I've been in the hospital for the last few weeks (not peritonitis!), and they even put potassium in my dialysis bags!  Everyone is different.  Take it all in, learn, and you'll do fine.  :-)   Oh, I have traveled also...  went to Mexico several months ago!  Baxter delivered the bags -- awesome.

Jen, When you traveled to Mexico, did you take cycler with you?  What part of Mexico did you visit?  My husband was on cycler but, now has gone back to manuals becuase the cycler just wasn't pulling the fluid off.  We have tried the cycler for months but just kept getting negative UF's.  He landed in hospital twice with fluid overload.  The hospital would get the fluid off with frequent 4.25's.  He would come home  and back to cycler first with very low UF's and then negatives. 

After, much "discussion" with neph's we have been Ok'd for Extraneal and will be trying that for the 1st time tonight.  Keeping our fingers crossed it works !!!  If it does and and we can get his UF's stabillized.  We would love to travel to Cancun,Mexico.  So would really be interested in your experience with traveling to Mexico.  We are also with Baxter.

   CCStan

[Jenabcd]

Hi CCStan,  Yes, we did bring the cycler with us.  It all went so good!  We also brought a couple of manuals.  We had a note from my dialysis nurse, and they let us right through...no questions asked, including the liquids.  We also had to bring our supplies (tubing, caps, etc)  A little inconventient of course...but so worth the trips.  One note... in Mexico, there are THREE bags of solution per box.  Obviously we had way too many, since we assumed it was 2 bags, like it is here.  Wasteful I know, but what could we do. We went to Cozumel, and loved it.  Good luck!   Oh, also...at the airport, at the gate, we told them ahead that we have this dialysis machine, and they let us on first, so we could get a spot for the machine.  Another note: We bought a small mattress pad that is like a big egg carton sponge (know what I mean?).  We cut that to size and put it all around the machine just for added protection.

[texasstyle]

Hello everyone. I know about the swimming but no bathing or showering either? I guess that means a life of sponge baths. If you tape & dress the cathater up real good is a bath possible then? And what if it's taped up with duct tape? That's got to work after all it does have 1001 uses. My husband ignores the renal diet. the only thing he does is not put extra table salt on things. He eats tomatoes, potatoes  & cheese all the time.Pretty much everyday and no the potatoes aren't soaked. The diet deal scares me. Since you can be more liberal with the diet on PD I think he'd like that a lot more.From what I've read, he renal diet only allows for consumption of cardboard  lol. I hope everyone enjoy their weekend.

[Jenabcd]

Hi again Texas;  do you live in Texas?  I do!  Anyway, no baths with the PD catheter.  SHowers are ok though! Just make sure to dry and clean the exit site real well when you're done.  Many PD patients are told that they can swim in a private pool that you know is kept up. (Again, dry and clean exit site when done.)  Some also say that the ocean is safe; personally I've been to the ocean and didn't want to chance it.  Some parts of the oceans on shore actually look FILTHY!   Yes, the renal diet can be tough, but the Davita website has lots of good recipes;  there are also books out there.  It does get much easier on PD.  I can't say I love dialysis, but I always try to look at the positives, and the diet is the biggest! 

[texasstyle]

This is going to sound silly but no, I don't live in Texas. My sister does though lol. Allen. She says it's about 30 miles from Dallas. I simply had Texas on my mind and as a music lover, a lot of people I like hailed from Texas. I have a friend in San Antonio & McKinney. The closet I've gotten to Texas is watching Austin City Limits. One day I'd like to get to Austin.I'm going to start looking for some really good information on the diet. Thanks for the tips. (from PA)

[KICKSTART]

Showers are fine , you can even cover your exit site with a waterproof dressing , but deffo no baths!!! You really need to get your husband to sort his diet ,hes not doing himself any favours and could end up with a shorter time on pd and having to do hemo instead. Cheese, tomatoes, etc not brilliant to eat everyday. Just everything in moderation , cheese once a week etc. I found the pd diet easy to stick to , i had whatever i fancied , but never in large portions , or the bad foods more than once a week. I dont think i really had to give anything up diet wise ,i never used salt to start with, but of course you have always got to watch your fluids !