what to expect with pd?

[Brian]

So here's my issue.  I've gotten real sick all of a sudden, and my doctor has decided to start me on pd.  Honestly, I've never even researched it that much and don't know much about it.  I have my appointment with the surgeon this coming wed, and have no idea what to expect!  So it would be great if someone could walk me through this.  How easy or hard is the surgery for the access?  How soon can I start dialysis after getting it?  Will there be a limitation on how much weight I can lift?  How will pd make me feel?  I'm 34 and wondering if I'll be able to keep working at my current job.  It's very demanding, lifting a lot every day, in a not so clean environment.  Also, what do you do with this tube hanging out?  How big is it?  I'm completely lost and really need someone to walk me through it.  Thanks.

[PaulBC]

I have heard it varies a lot by individual, but I can tell you how it went for my daughter. Recovery from surgery took at least 4 days in the hospital, and it was a lot more painful than placing a chest catheter. She had trouble eating and lost weight. After that, it took about 3 weeks before she could stop HD and move to PD exclusively. There was some pain at first, but it became very routine. A lot of the pain of surgery and PD itself is related to constipation (exacerbated by pain meds after surgery).

Don't leave the tube hanging. You can get a belt to hold it in place. My daughter is able to play softball like this. She can't dive but does other things. As long as the exit site is protected, you are probably OK in your working environment, but I'm not sure about lifting.

[Charlie B53]

My surgery was a piece of cake.  Little to no pain, but I think that I have a pretty good pain tolerance.  Placement of the exit has a lot to do with working comfort later.  Generally, historically, the hose would exit the body somewhere in the belly.  Mine was brought out in my chest almost nipple height and about 4 inches left of center.  Works great as there is no problem bellying up against anything.  Talk to your surgeon about exit placement.  I think chest is far better than belly exit.  If so, then there will be another couple of very small incisions, but really small, unlike the three inch cut needed to place the catheter inside the intestinal cavity.

Healing time you can figure a minimum of 4 weeks for any incision to heal enough to hold the dialysis solution.  Training depending on how fast you learn, can be accomplished in a week, so figure maybe 6 weeks from surgery before you start PD at home.

Do you know if you will be doing manual exchanges or using the cycler?  I imagine since you plan on working that the cycler will be best as you can set it up, plug in and go to bed.  Get up in the morning, disconnect and get on with your normal routine.

It is common to fear the unknown, but PD has been great for me.  Not really a big deal, and I am NOT sick any more.

Just be sure to keep your exit site clean, protected from bacteria, always clean your hands and be certain you are always careful when making connections and you should really have a problem.

I'm 2 years now and no infection, yet.  And I hope to keep it that way.

Take Care,

Charlie B

[cassandra]

I really think every body is so different, it's nearly unreal. My tube was inserted (not much pain), and they started me straight away, as I woke up with a lot of bloody dialysate draining into a bag. I could leave the hosp when the dialysate came out completely clear. Took about 2 weeks. I was taught all the ropes during that time.

I was not allowed to lift anything at all for a long time, and never much for as long as I was on PD, so I would definitely check that with your job, and surgeon.

I felt great on PD, hardly any diet/fluid restrictions. You will look a bit pregnant though.

I had my exit site next to my bellybutton and kept it taped in place there.

Love, and luck, Cas

[Bambino_Bear]

My Husband had the surgery on an outpatient basis and was home the same day.  He had some post surgical pain, but it did not last long and they gave him pain meds.  We started training about two weeks after the surgery.  The training is fairly simple and our nurses went over it until we were comfortable.  There is a home visit where they make sure you are not a hoarder (lol) and have working utilities.  Justin was a little freaked out by the tube, but I assured him that it did not gross me out or make me think he was unattractive.  With the extension set it is about 12 inches in length.  He tried the belt but did not really like it.  We just tape it up and out of the way.

We started off doing 4 manual exchanges a day.  We then moved to the cycler.  The cycler is AWESOME.  It is easy to use and does all the work while you sleep.  Justin is hooked up for 9.5 hours a night.  He hooks up about 8pm and we use the 25 foot patient line to sit in our "game room" and watch tv or play video games.  The cycler does all the work once you set it up (set up takes about 15 mins).  We then go to bed about 11pm.  We wake up at 6:30 and the machine is done.  He unhooks and we go to work.  He has not had infections or had any pain at all with the cycler.

If you want you can go back and read my first thread in the introduce yourself section.  It kind of details what we went through. 

I hope this info helps! 

Here is the link to the thread.  http://ihatedialysis.com/forum/index.php?topic=29602.0

[Charlie B53]

With my intense fear of needles, and especially after seeing the SIZE of those used for Hemo,  I find it hard to understand why more do not chose PD.  Unless there is a definate medical reason why PD is not a good option.  I understand that the membrane is NOT so good at transport after one or more abdominal infections.  This may be why I am soo careful with my site and during all connections.

[marlinfshr]

I had the tube placed as an outpatient 18 month's ago. it did hurt for a few days but I fished a major offshore tournament the following week.

Last year I tried going back to work some on an offshore charter boat and did fine. But that was cut short last August because of heart issues (totally unrelated) and a quad bypass in which I am still recovering.

However, now I have returned to work again doing boat detailing and boat bottom painting which involves many uncomfortable positions while handling a rotary polisher. I will return to fishing this season which begins here in about a month.

As far as lifting, be careful and don't over do it. Being a mate on a sportfish puts me in the front line for landing any heavy fish such as tuna. If it is over 50lbs I have no problem asking for assistance. Likewise I may pay a bit more attention and think things through a bit more before lifting if possible. I don't want a hernia. I have also joined a gym for cardiac purposes and have even started a tad on the weight machines, though I will avoid anything that has to do with working out my abdominal area so I am trying to concentrate on arms and shoulders. Again, I am paranoid about getting a hernia because my manual PD is letting me have the life I thought I had to leave a couple of years ago.

Now, my activities are done while empty as I only do a couple short exchanges a day so perhaps I would do things a bit different if I needed to be full all the time.

As far as the tube, I keep putting off ordering a few belts for some unknown stupid reason so I just use an island dressing a 2" paper tape. I'd be lying if I said I don't notice it as I do. And yes, I have to pay attention some when trying to position myself in tight quarters but I have learned to deal with it. Perhaps that is why I haven't ordered any belts yet? Because I have learned to deal with it as is.

[PaulBC]

This was discussed in another thread a while back, but does anyone have thoughts about swimming with a PD catheter? Our nurses say it's OK in a chlorinated pool that meets regulations, such as any public pool. On the other hand, PD has been working out so well for our daughter that we don't want to take any chances. She used to swim year round and knows all the competitive strokes.  She would really like to get back to swimming (though not at the old pace). I'm a little divided, but would like to know if anyone has direct experience.

[cassandra]

I never took the risk. Just think of how many people get ear infections, or other minor things in chlorinated pools.

Love, Cas

[Bambino_Bear]

Our nurses say no swimming. 

[Charlie B53]

Besides the NO swimming in lakes and rivers, which I miss terribly being a retired boat mech, if I felt a little too warm I'd simply 'fall' overboard.  No more.

Our house uses a well, no chlorine, no fluoride, nothing but natural water, and minerals.  My PD Nurse was a bit apprehensive about contamination during showering and gave me some 'patches'.  I ran out within the first month and never told her that I needed more.  That's been almost two years now.  Anyway, these 'patches' were about 5 X 7 inches, durable clear plastic, peel and stick with a pretty decent adhesive.  I mean they stuck.  I would curl my cath hose in about a three inch circle, center it on the exit site and stick this patch over it all.  It sealed everything off well enough I could scrub in the shower, hot as I could stand it, for a long time and not get anything wet.

I don't remember the name of the product, and I don't think I would risk using it in the dirty lakes and rivers, but a chlorinated pool it just may be a solution.

I have my monthly clinic appt this coming Monday.  Let's see if I can remember to ask about them and see if I can get a name.  No guarantees, my short term memory left me a great many years ago.  Maybe something to do with the HUGE quantities of that green 'tea', yeah, that's it, tea, that I used to smoke.  It's a wonder that I can still spell.  Oh, right, I can't, I just have a pretty good spell checker.

[PaulBC]

Anyway, these 'patches' were about 5 X 7 inches, durable clear plastic, peel and stick with a pretty decent adhesive.  I mean they stuck.  I would curl my cath hose in about a three inch circle, center it on the exit site and stick this patch over it all.  It sealed everything off well enough I could scrub in the shower, hot as I could stand it, for a long time and not get anything wet.

Thanks. That sounds like a useful thing to know about. How hard is it to get them off afterwards?

[Charlie B53]

The patch just peeled off like a very good band=aid.  Didn't take any skin off.

These things are kinda like those things they use in surgery.  They had these self-adhesive sheets, about the same size as a sheet of paper.  After the betadine scrub they lay this sheet down, it sticks, then the incision, chest or abdomin, is made through the page/sheet material.  Afterwards they just peel it off and throw it away.  It may be something they use to protest the edges of the incision from any further damage, other than the incision itself.

Either way, I'll try to remember Monday to ask my PD Nurse, if they have some I'll try to get it soIll have a product name.