The Doctor is Pushing PD!!

[thegrammalady]

...and a transplant. so i gave him my reasons for not wanting a transplant and he said while he didn't have all the answers new someone who did, so i guess i should go find out about it. maybe?? as for the PD he said he felt i had been given bad information and had misconceptions. he said he only had one patient in the last 10 years who had any problems. (my thinking is most of his patients don't talk to him.) my other thought is "if it's not broke, don't fix it" but i have been looking around at all the threads on the subject and can't really find the answers i'm looking for. but i know you guys will have them things like gaining weight? reabsorbing fluid (dr says that doesn't happen)? infections? etc. i know this has all been discussed before but, well.......help!

[st789]

PD is for self-care and privacy at your own home instead of at the clinic.  But infection is the major concern.

[paris]

This is the decision I am making also.  Everyone at my docs office say that PD is the way for me to go.  At first, I was very hesitent.  But, it would give me more control, better quality of day to day living, less dietary restrictions, and I can still travel and go places.  I have been to a couple of information classes and talked to two patients of my doctor who do PD.  And then there is the resident expert, Goofynina! 

Why not go ahead with the transplant evaluation?  Gives you time to learn and make decisions. Even if you get the "call" you can always say no if you feel it isn't right.   Rerun told me to lose all the weight I can and then put it back on with PD!!!    You just have to weigh all the pros and cons.  Let me know what you are thinking and keep asking questions here!

[KICKSTART]

Give us a list of things you want answered , then we can all tell you our experiences. Each one of us is different and have different things happen , but that way you can look and see if we all say similar things! Sometimes i think doctors just study books/notes and if it doesn't mention that something happens , well then in their eyes it mustn't!

[thegrammalady]

what i really want to know is all the problems everyone has. i don't believe the doctor when he says he's only had one patient in 10 years that had problems with pd. i do however believe him when he tells me that i'm the only patient he has who questions everything he says. i'm the biggest pill at the dialysis center. i expect them to do it right and am going to let them know when they don't. when i first started the director told me i couldn't tell them that a certain tech wasn't coming anywhere near me. she sent the social worker over to try to talk me out of it. needless to say she's never tried that again. when she doesn't resolve problems, i go to her boss. anyway the doctor says i have misconceptions about pd. what he is saying translates to me that there are no problems with pd. i don't believe it. so lay it on me. i want to be able to continue this discussion with him with a armload of amunition. his points are, i don't have to see him as often, i will have more free time. my numbers are great and i am extremely complient so i won't have any problems. my  concernsare, i weigh to much alreadty, 185 lbs and i'm only 5'3" and i can gain weight walking across the street from a bakery. my daughter and i currently only have one car and if i'm not going to the dialysis center i'll never leave the house. i currently travel and have had no difficulties with other centers (although i'm sure there will be a first time) again my thoughts are "if it ain't broke, don't fix it"

[KICKSTART]

There is no easy answer here , everyone at some point has problems whether they do PD or Hemo. Is there anything in particular you want to know about ?

[Red from Canada]

Grammalady, As one gramma to another, you would be fine on PD  I am215 LBS and 5 foot one.  I love my Baxter cycler.  I hook up at about 11PM and 9 hours later, after a good nights' sleep, I unhook and am free for the day.  We travel a lot in a motorhome and I just take everything with me.  The first 2 or 3 weeks, I had some drain pain, but after that.....no problems.  Only drawback with carrying fluid during the day is you feel pregnant, but at my age, I don't care.
     Give it a try.  You'll be amazed at the freedom.....and NO needles.!

[angela515]

I absoluetly LOVED pd when compared to hemo, for myself.

Here are my positives (for myself not anyone else.): I liked the fact I could do it in my home and not have to go to the center. I liked being able to hook up to my machine and be doing dialysis while I was asleep at night and have my days free for whatever. I liked the fact that I did it everynight, so I had less diet restrictions than on hemo, and could drink more fluids. I liked being able to shower, and not have a cath in my chest. I liked not having to worry about finding a new spot for a graft and then if I got one, worrying about clots and declots and all of that crap. I liked how I only had to go to dialysis clinic once a month.

My negatives: I got peritonitis 3 different times. (However, you get a short supply to start the initial dosage until you can go to see the doctor of antibiotics to keep with you if this happens (at least at my clinic) and you can start putting them in immediately and the pain (for me) went away within 15-30 minutes.) I didn't like having to drain my bags, and setup the machine again and get all the garbage put away and so forth everyday.

For me, my pros outweighted my cons. Maybe as someone suggested, you should weigh yours.

Oh, and as for the weight- I gained about 10 lbs the whole year and however many months I was on PD, but I also wasn't eercising and so forth even mildly due to my ankles.

Oh again, about the absorbing fluids. Until you get your prescription correct, you might, but that should be told to your PD nurse or doctor so they can adjust your prescription until it no longer happens, because it should NOT happen if your prescription is correct.

 

[Katonsdad]

When I first started , my Doctor pushed PD for myself also .  I was working full time and led an active life.
He also pushed me to get a transplant as soon as possible . He told me though to wait for a Kidney/Pancreas
transplant to get the job done ,
I learned about PD and had the surgery for the cathater . Boy was that bizarre. Have the tube hanging out of your
midsection ended my days in the pool . I am not a vain person (I don't have the looks to be vain) but keeping the
tubes out of the way was a pain in the fanny .  Showering , getting dressed , etc. 

But with that there was the freedom of not being in Center . I started with manual exchanges , and was able to do them at work
There is a lot of equipment and you will need space for it.  Traveling was easy . I got married while on PD and traveled for
the honeymoon.
Prior to that though . I had a major health crisis and needed a Quad heart bypass. This was done at the Heart Institute in
LA and the nurses did not know much about PD and the Doctor set a PD nurse to visit every other day.  Between that though
the other nurses did the exchanges and I contracted a Staff infection that ended up recurring every 28 days.   Just
do to a lack of experience by the nurses caused this.  The PD got me through the wedding and honeymoon
and I started Hemo 8 months after I started  PD after having my 6th bout of Peritonitis.
My PD nurse even wrote out a Sick protocol to give to a hospital if I needed to go to the ER . I was actually able to teach one
Hospitals ER staff how to react to the illness with great outcomes .

Given the choice if needed I would do PD again , It was way better , a little more natural for your body . and you normally
feel much better , having gotten the toxins cleaned out every day .

I also would say try for the transplant .  I have been transplanted for 8 years now and am doing very well . My labs
are still very good (according to my doctor)   There is a lot of testing that goes on   My kidney and pancreas came from
a cadaver donor and are working good .  I do however have to take medication for the rest of my life but as a Diabetic
Kidney patient  I was doing that already anyways.

There are pros and cons with both choices and they must be weighed with your personal feeling and beliefs .
You doctor should be presenting both sides to you with information , not just pushing you in one direction .
Though he must feel you are a candidate for a transplant if he is suggesting that you go out and be tested .

Good Luck

Katonsdad

[rookiegirl]

what i really want to know is all the problems everyone has. i

Grammalady,

Have you had the chance to look at my thread under "New to PD"? I shared all my ups and downs that I experienced.  I started PD on 10/22/07.

[KT0930]

Gramma, probably the reason the doc has only had one patient who had a problem is because the patients all talk to their PD nurses about their specific problems, since they know more about the process than the neph.

The main problems I've had is pain during drains and filling, but keep in mind, I've had six abdominal surgeries, so I probably have a lot of scar tissue that's getting in the way.

Storage of the supplies is kind of a pain. I keep most of mine in the garage, and it takes up about a third of one bay of a two-car garage (I'm on a Fresenius cycler).

I've gained about 20 pounds in just over a year. However, I don't exercise at all and I needed to gain about 10-15 pounds before I started PD.

The only time I've reabsorbed fluid was this summer when it was so hot and I wasn't drinking near enough (I know, some of you hate me now, sorry!). I still urinate, so fluid is a very delicate balance between taking enough in, am I urinating it out, am I swollen, etc. It's a trick, but like anything, you learn your limits and what your body needs.

On the bright side, travel is not a problem at all. I went to Disneyworld a couple of months ago and just took everything for a week (including the cycler) with me. I'm going to Mobile, AL next month to visit family and yesterday made arrangements for Fresenius to deliver everything to their house ahead of time.

As for the transplant, I've had two (from my parents) and am currently on the list for my third. Having lived most of my life (23 out of 33 years) with a functioning transplant, I can't imagine living the rest of my life on dialysis when transplant is even a remote possibility. Taking meds everyday is going to be a part of life no matter what, and with a transplant you can "almost" forget you have kidney disease.

Hope this helps. Let us know what other questions you have. We're here to help each other, right?

[goofynina]

I cant say enough GOOD things about PD, I would'nt even know where to begin, but i can tell you one thing, while i was on hemo, i was severely depressed and damn near suicidal, now, on PD, i am so happy to be alive    If you want to know anything, and i do mean anything   please dont hesitate to ask, honey, i am an open book when it comes to my life (and only people over the age of 18 can read it)    

[del]

Hubby had a REALLY bad experience with pd.  He almost died. His peritoneum stopped working and he retained fluid and build up toxins. He went blind for a while because of so much fluid. Thank God he switched to hemo in time and everything pretty much came back to normal.. Pd works well for some people but not for all.  Don't worry about questioning the doctor .  It's YOUR life and you need to be in control.  Hubby questions everything.  If it wasn't for his persistance he would have died on PD!!  Neph told him most of his problems was in his head!!  I refuse to repeat what he said to her .  Wasn't nice!!

[thegrammalady]

 ....... Don't worry about questioning the doctor .  It's YOUR life and you need to be in control.  Hubby questions everything.......

never fear, i question absolutely everything, especially from doctors and nurses. my neph just likes to play devils advocate. i'm just looking for ammunition to counter the "i think you're misinformed about pd" comment i got last time i saw him. i'm quite comfortable with in center hemo and i don't think it's necessary to muck with what's working well. if it ain't broke, don't fix it!!!!!!! my doc is the first one to tell you he doesn't know everything. and there isn't anything i can't ask him. if it wasn't that way the first thing i would have done when i got out of the hospital the first time was look for a new doctor. luckily that wasn't necessary. his point is i take good care of myself and understand what's going on so there is no reason i shouldn't do pd. i could go back to work then. but who wants to, i'm having too much fun playing with my grandkids. but i am toying with the idea of going back to school and becoming a dietition, at my age no less, lol.  anyway thanks for all the info, i'm prepared to give him an ear full next time i see him. i shouldn't be so gleeful   

[rimbo74]

Once when I got past the fullness of PD, it was pretty easy and not so bad.  You will get the machine alarming you at night sometimes but other than that, its not bad.  I never had an infection or any of the things bad happen to me.  I would get red around the catheter but they just gave me some bacterim cream and it would go away in a day.

[Ken Shelmerdine]

Grammalady, I've been on PD for 14 months now and I've gained about 7lbs. having said that, I use the weakest fluid (1.36) and I am dry during the day up to now. I always do a stand up manual drain in the morning because in a lie down position the cycler does not drain me completely and leaves about 250mls undrained so this way I get all the fluid out of me for during the day.

For those who have to keep daytime fills as well I think must absorb some fluid as the dwells are longer than night time cycler therapy.

Also from what I've read on this forum the internal positioning of the catheter is crucial to avoid pain while draining. The fact that  quite a number of people experience pain from draining would suggest that sometimes the the end of the tube is positioned too near  internal body tissue and the syphoning action of the draining process actually sucks and pinches internal body tissue. It would seem that catheter placement is not the exaxct science that it should be.

On the plus side you do have much more control of your dialysis and therefor your life. You are less restricted on fluids and PD is a much more gentle form of dialysis. No more feeling washed out after treatment and crashes etc.

If the catheter is placed correctly and you can get used to carrying fluid during the day, then I think you'll find a big improvement in your life. Most of the time I actually forget I am on dialysis. Thats how unobtrusive to your life it can be

[Black]

It appears to me that most of the posts refer to the choice between PD and incenter, which is not accurate.  The initial choice is between home dialysis and incenter.  Then the second choice is PD or HD.

The first choice in almost all cases should be for home dialysis.  Don't worry about not getting out of the house as you will feel so good you will be going everywhere!

There are various problems with both modalities, BUT the life expectancy of HD patients is higher.  I'm guessing due to the complications from the higher infection rate in PD patients.

Of course there are patients who use a chest cath for HD, which has a high infection risk rate, for years and have no problems.  So make your best guess, go with your instinct, and you can always change your mind later.

Not letting your doc make the decisions is wise and your questioning everything will keep you alive longer and give you a better quality of life.

[Ohio Buckeye]

I have actually lost weight on PD.  In the beginning I gained and it was
because I was doing longer dwells and absorbing fluid.  Then I went to shorter dwells and started
losing weight.  It has worked so well for me.  Wash access site eeryday amd put antibiotic cream on it and I keep my covered with small
gauze pads.  Wash hands thoroughly with antibiotic soap before starting anything to do withPD.  Also I use the antibacterial gel often.
I clean my table with clorox cleaning cloths.  I am grateful I can do PD.