2 questions about PD

[kickingandscreaming]

My first question is if anyone know how long one can go on PD. It seems that everyone assumes it is time-limited.  I realize that some get hernias, others damage themselves with peritonitis and others scar the peritoneum with the glucose dialysate.  But doesn't anyone know the statistics about the longevity of the process?

My second question is what is the proper height relationship between the position of the cycler and the person in bed?  I have yet to start APD, so I'm trying to set up my space.

Thanks in advance.

[Charlie B53]

Good question.  I'm not so sure that there is any 'carved in stone' answer.  The rate of transfer through the peritoneal membrane is the determining factor.  Some pass slow but are still able to use PD successfully.  There are a number of problems that can reduce this transfer rate.  Like you mentioned, infections, the use of high % solutions are the two most common.  Both can be easily reduced by careful attention to clean technique and watching your diet and fluid intake so as to keep you daily water intake within reasonable limits.

I've been on PD for 2 1/2 years so far.  And with my paranoia of needles, especially the huge ones used for Hemo Dialysis, I am quite careful to ensure that PD stays viable for me.  This is no absolute guarantee that something won't go amiss, but so far so good.  I'm not going to fret about it, I much rather spend that energy making sure that I am doing all that I can to stay stable.

If 'Fate' steps in, then I'll have to learn how to deal with it then.  Until then, it isn't worth wasting my time thinking about it.

You ARE absolutely Religious about keeping your site clean and bandaged as taught by your team?
Same with your hands, mask, and procedure to making connections?

These two are THE most critical. Any sloppyness with either can directly cause a life threatening infection.  If that threat to your life isn't enough. Any one, or more, of those infections can damage the peritoneall membrane and reduce transfer rate to the point that PD is no longer viable.  Then your only choice for life is Hemo.  If possible, transplant.

PD is working very well for me.  I will continue to exercise due caution to ensure it remains viable.

[Charlie B53]

I totally missed your question about the position of the Cycler.

I have mine on an old fishtank table. An IV pole alongside to hang the other two bags.  This leaves me over half the top for my laptop, ice water, pillbox with that night and morning pills. and my snack.  The lower shelf has the casw of cassetes, case of Ico, case of patient extension hoses, and of course a box of caps.

I don't extend the drain hose to the bathroom.  The Wife thinks it creates a 'smell'.  So I use a 5 gallon bucket.  Drilled a 3 inch hole off to one side of the lid.  Double tape the drain hose into it.  PD Nurse taught me ALWAYS use TWO pieces of tape to secure the drain.  If one came loose the other would prevent a big wet mess.  Three times I have had my morning routine interupted such that I forgot to drain that bucket.  Needless to say, the next night it overfilled and made that wet mess.  I clean the bucket a couple times a month.  A small squirt of Tidy Bowl or whatever she has in the bathroom.  Swish it around with the toilet brush, rinse it at least twice with hot water.  I don't smell a thing.

One of these days I'll clean the excess clutter off that table, take a picture and post it in that thread showing setups. 

[Vt Big Rig]

If 'Fate' steps in, then I'll have to learn how to deal with it then.  Until then, it isn't worth wasting my time thinking about it.

Great Line Charlie.  A statement that should be the mantra for all of us.

Or as Next Stage tries to train us ..."Keep Calm and Carry On"

[stayingalive]

Agree with Charlie on the first part.  Second part....from what I've learned and read was the cycler needs to be within a foot of the height of the patient on the bed.  I.E. it can be either lower or higher but within a foot.

[kickingandscreaming]

Thank you Charlie and Stayingalive. 

[Simon Dog]

One hint - ask your MD for an emergency antibiotic kit in case you get peritonitis.   (In my case, it was one vial of vanco and two of ceftaz).   If you get an infection, you'll be told to rinse yourself with a few fills/drains (keeping the first drain for analysis) and get to the ER.   Having a kit won't save you a trip to the clinic (if open) or ER, but it will allow the antibiotics to start working immediately rather than a few hours later when the ER staff decides they have time for you.  I never used my kit when I was on PD (hemo now), but it was nice to have - particularly when traveling where I was not familiar with the clinics and ERs.

[kickingandscreaming]

Thank you, Simon Dog.  That's a good idea.

[Charlie B53]

That is a great point Simon.  I have clinic Monday, I'll have to remember to ask again.  If I remember, last time my Nurse denied it, said I am one of the few that can get to the clinic in a timely manner.  Day or Night, the always have someone within minutes of the Clinic and would be there before I IF the need every arise.  I'll have to remind her that this time of year the Wife and I ALWAYS go to Daughters house for Christmas.  Not so much for the Christmas part, that's just an added bonus.  Daughter Birthday is Christmas Eve.  I haven't missed one for over 45 years.  Any more and I would be telling her age, and since she is not so much my Baby Girl anymore, like many women she still doesn't admit to her actual  age.


Oh, and my Cycler is about perfect level with my heart while I'm   Draining into the bucket may allow a little siphoning which may assist the machine pump.  Filling while laying there again there may be a slight 'siphon' assist to the machine.  So far it has been working perfectly.  Drains and fills are far quicker than they were doing manuals.
sitting on the edge of the bed.

[Simon Dog]

If I remember, last time my Nurse denied it, said I am one of the few that can get to the clinic in a timely manner.

I was very near the clinic and had no problem getting a "yes".   I also took the kit with me when traveling.   But, I had to ask - nobody offered.

I'd ask directly "Is this a medical decision or a cost decision?".    Also, ask if they will send someone to the clinic in the middle of the night.    The hassle saved by starting treatment and getting to the clinic or your MD in the morning as compared to waiting around in an ER for hours to start is significant, if only from an anxiety/comfort perspective.

My instructions were to never use the kit without calling the on-call RN for instructions  but, since that's available 24x7, it was not an unreasonable requirement.

[stayingalive]

I had my kit given to me by my clinic and it came with written instructions and the nurse also went through it with me a couple months in a row after I received it.  Just to make sure I knew what to do.  I still take it out once or twice a month just to refresh my memory.  In fact now that it was mentioned I better check expiration date on vials...may need a new kit   If I feel I'm infected, I drain what will come out, save that for analysis at hospital, inject meds through cath, call on-call nurse, then go straight to an ER.

[Simon Dog]

If I feel I'm infected, I drain what will come out, save that for analysis at hospital, inject meds through cath, call on-call nurse, then go straight to an ER.

I was told that the procedure would be to save the first drain, rinse a few times (fill/drain); add the Rx to a solution bag and then fill with that.  But, specific instructions from various docs may differ.  I was also told to call the on-call RN before starting the procedure and, that if it happened when the clinic was open, I would be instructed to go there to start the treatment - the emergency kit was for after hours/out of town only.

[stayingalive]

apologies to all....   I contacted my clinic yesterday and Simondog has it about right for me also.  I really made a mistake saying inject myself thru cath..I AM NOT TO DO THAT..shame on me ....I am to contact on call nurse then I  drain, save it,  then inject meds into solution bag and fill then off to an ER..only on days my clinic is closed or I am away traveling.  If I am at home or close by I contact my on call nurse or clinic first then they will instruct me as to what steps to take after that. Let me say this though.....I hope I never get to that position.  Its a good thing I have others here in IHD to keep me straight and thinking.

[Simon Dog]

I  drain, save it,  then inject meds into solution bag and fill then off to an ER

Ask if you should rinse yourself out with a couple of bags before filling with the one with antibiotics.

[stayingalive]

Thanks Simon....am going to do that when I get to home later.  I want to be sure on it all.

[Charlie B53]

Qwap!  Clinic yesterday and I FORGOT to ask abouot the anti-biotic kit.  Maybe I'll remember next month.