PD Update

Today is the beginning of Week Four of dialyzing at home.  With the increased freedom comes a lot more responsibility; as such, this has become a lot more than a change in modality.  It is, in fact, another holistic change.  when I was on hemo, I worked dialysis into my life; now I must work my life into dialysis.  PD dictates when I get up, when I eat, when I do my chores, when I can run errands, when I can work out, and when I can sleep.  These are all changes that I gladly make, as the potential upside is tremendous!

Last week I did my first exchange away from home while I was attending a MARC Medical Review Board meeting at a hotel in Arlington, VA.  I did the exchange in an unused meeting room, and washed my hands in a restroom down the hall.  My PD nurse would not have been pleased with the conditions, but I did my best to use the aseptic techniques I learned during training, and improvised the rest.  I'm glad I did it, because I showed that it could be done.  I won't let kidney failure keep me from rejoining the work force and the mainstream, and continuing my successful career.  I have a lot more to do....

This Thursday I have my kidney transplant evaluation at Johns Hopkins Hospital.  I've been through this all before at Georgetown Hospital, so the procedure won't be daunting this time around.  I will, however, have to drive to Baltimore and be where I need to be by 7AM that morning.  I'll also have to perform at least one exchange while I'm there.  Another day, another challenge.  Challenge accepted!

I have to keep track of my supplies constantly to ensure that I do not run out of anything necessary to perform exchanges at home.  Most supplies are delivered; I simply have to order them two weeks in advance.  I had twelve cases of dialysis solution delivered on Wednesday to help tide me over until October 4, the next delivery date.  On Wednesday I was bemoaning all the boxes in my bedroom; by Saturday evening I was counting them again for fear of running out before the next delivery!

All in all, I am pleased and anxious in a good way about the way things are going.

Snapshot/Update

It’s been a REALLY long time since I posted anything regarding my kidney situation.  That’s because I’ve been busy getting things done!  Before I start with this update, I have to go back and read my last update so I know exactly where I left off.  Back in a jiff…

OK, I’m back.  So it would appear that, although I’ve posted some items in the interim, I haven’t really done an overall update since March of 2012.  For starters, back then I weighed 106 kilograms; I’m down to 97 kilos (about 215 lbs.)  I lost the weight by eating a little less and exercising a lot more.  Hmmm...what else has changed in the last 17 months?  Well…  get ready for some disjointed stream-of-consciousness real-time catching up!

8/27/13 3:54PM:  I’m about 90 minutes into this dialysis session, and the time is dragging even more than normal.  That’s okay, because thanks to planning and a little luck this might be my next-to-last hemodialysis session for a while - or ever!  I’m scheduled to start at-home PD (peritoneal dialysis) on Friday or Saturday.  I am psyched!

8/31/13 12:00PM:  Last day of hemo!

Today I brought my iPod nano, smartphone, Kindle and Chromebook!  No TV.  I’ve come a long way from my first day when the only activities available were reading and sharing crappy TV shows with other patients.  Truthfully, reading wasn’t an option either because I hadn’t gotten my reading glasses yet….

After almost four years, I’m one of the patients who’ve been here the longest.  I’m co-chair of the MARC Patient Advisory Committee.  I’m on one transplant waiting list and will be evaluated to get on a second list next month.  I’ve gone from hoping and praying for miracles to leading my own recovery.  And I can’t wait to see what lies ahead.

Things I won’t miss about hemo:  stinging pain in arm; getting stuck; getting buttonhole scabs removed; having needles removed; automatic blood pressure readings; cramps; feeling crappy afterwards; dialysis hangover; scheduling my day around hemo; sharp pangs at odd moments in the night; dressing for dialysis; eating in the waiting room

9/3/13 8:25PM

Most of my blogging is re-typing stuff that I wrote a day or week or month ago; this section is free-form.  I promised myself I would write tonight as a release.  In the previous paragraph I listed a bunch of things I wouldn’t miss about hemodialysis.  I must now note that I won’t miss two of them because I’ll still be doing them (scheduling my day around dialysis and eating in the waiting room).  I know this because I did both of them today.

This is my third and final week of peritoneal dialysis (PD) training and my first full week of dialyzing at home.  At the start of PD, I have to do the procedure manually four times a day with 4- to 6-hour intervals.  Each procedure takes from 50 to 60 minutes.  My speed may improve as time progresses, but right now the emphasis has to be accuracy and attention to detail.  If I screw up the procedure I can do damage to my body - perhaps permanent damage.  Ironically, I am even more of a slave to my schedule now than I was when I was doing in-center hemo.  This should change when I move to automated overnight dialysis in a month or so, but in the meantime it is tough to keep up. Waking up early every day has not been as enjoyable as I thought it would be.  I’m hoping that this changes as I get used to the new schedule.  I’m hoping.

There’s a LOT of new stuff to learn with PD!  This is right up my alley, but as I am exposed to more and more new things it sometimes looks a little daunting.  Today I learned that I will probably have to eat a  little more protein (good), eat more potassium (great!  potatoes!  bananas!  tomatoes!  marinara sauce!  orange juice!), and that the dialysate that is in my peritoneum all day will add about 500 calories to my daily total.  This means that I either have to cut out 500 calories daily or exercise a lot more.  My prescriptions are changing, as well.  And I meet with my new nephrologist (kidney doctor) tomorrow to go over my situation.  I’m sure I’ll do fine.  I’m also sure that something new will be added to this mix.

I’m going to have to focus hard on absorbing all this new information, because adjusting to my new daily regimen is in itself a full-time job at the moment.

Oh, and just in case enough hasn’t changed in my daily life:  the gymnasium in my building, the one that has been an integral part of my recovery for the last two and a half years, has been closed for repairs since my July 22 surgery.  The last storm did significant damage to the ceiling and plumbing, and the gym is closed until further notice.  I’ve had to adjust my workouts accordingly:  more running, and not as much of anything else.  My conditioning is OK, but I’m starting to lose muscle tone in my arms specifically.  So I need to figure something out.  I will, of course, but the timing is less than optimal, as my plate is kinda full at the moment.

But all of this is happening for a reason.  When the smoke clears, I’ll be dialyzing at home and ready to go back to work full-time, or earn a living some other way (nothing illegal, of course.  something spectacular?  I hope!).

How could I forget?  Today I was asked to be my dialysis center’s Patient Liaison to MARC, the same organization that I already do so much with.  Of course, I said yes.  Since I work so much with MARC already, I have a good idea of what a Patient Liaison is supposed to do -- but I have to go see exactly what I am supposed to do.  Be right back….

It’s even worse than I feared.  “Patient Liaisons are very helpful in sharing information with their peers. Patient Liaisons help to educate other patients in their facilities about the Network and its activities, as well as serve as mentors to new patients.”  There’s even a booklet I have to read.  I’m cheezed off for two reasons:  (1) this is a lot of stuff that I didn’t ask for (yes, I could have said no, but it would have looked bad); and (2) after four years at the center, I can say without equivocation that the majority of the patients don’t give a damn about anything but getting out of there as quickly as possible.  And I can't’ say that I blame them.  But given that, how gassed am I supposed to be about this new title and task list?

How can I turn this into a win-win?

So I got home early from PD training today -- a little after 3PM.  To the best of my recollection I relaxed and decompressed until about 4:30PM, when I did my third of four dialysate exchanges for the day.  The exchange took slightly less than an hour.  When done, I checked the Internet and started this blog entry, then had dinner, then relaxed some more.  It’s now 10:59, time for my final exchange of the day.  Even if it’s only for a short period, this is going to take some getting used to.  At the same time, I can see where it is going to be an excellent discipline-builder once I get the hang of it.

With any luck, this is the last bit that I’ll write for the day, because when I’m done with this exchange I go directly into next-day mode.  A little rest, another early wakeup, another round of exchanges, training, and efficient behavior.

9/4 6:45AM:  I woke up about 15 minutes ago.  Physically, I feel pretty good.  My weight is 99.2 kilograms, down from 99.3 yesterday.  I’m still getting used to carrying around 2.5 liters of fluid in my peritoneum, but this morning it doesn’t feel weird at all.  I’m looking forward to breakfast, which is a good sign.  I think I’ll have homemade pork sausage and two pieces of french toast.  The dietitian’s mantra is ringing in my ears:  eat a little more protein each day; pound the potassium; shave 500 calories daily.  I’m going to have to check that last number!

My attitude at the moment is “let’s do this”.  I’m feeling slightly less overwhelmed.  I’m going to dive into the day now, and I can’t wait to see how I feel when I continue writing.

9/4 4:21PM:  Arrived home about 10 minutes ago.  Clothes off but not yet hung.  Half of my Subway Meatball Marinara foot-long is heated and ready to eat.  Today was another short but intense day of PD training.  I met my nephrologist and she gave me a thorough intake and briefing.  In addition, I practiced IP medication (injecting meds into the dialysate bag).  This meant that I had to learn to use a syringe needle.  I have never in my life even held one, so that was challenging, stressful and cool all at once.  Oh, and we scheduled lots of shit for the next couple of weeks.  I usually would have typed “sh*t” or used another word, but this is free-flow blogging right here, and sometimes swear words go with the territory.

I’ve had my catheter for about seven weeks, and I’m already something of an expert in its care and use.  That’s the way it has to be, otherwise people end up in the hospital.  Today I was asked to show my catheter to someone who was being briefed about PD while I was finishing my training.  I was briefing and educating someone who is right where I was about two months ago.  My, how things can move quickly at times!  

An hour ago, my head was spinning from the latest dose of information, requirements, and appointments.  Now it’s not spinning quite so quickly.  I am back in get-it-done mode.  To that end, I’m going to pause here and beat up on this sammich.  Then I’m going to do an exchange.  Then I have to unpack the PD table that arrived yesterday.  Then….I dunno yet.  But I’m sure I’ll be doing something or thinking about doing something.

I’ll be back.

6:40PM:  I polished off a late lunch and did exchange no. 3 for the day.  I think I’ll relax for a few minutes, then tidy up my room a little.  I gave it a good cleaning a couple of days ago, but I see that a major reorganization is in the offing, and that the more items I can get rid of, the better off I will be.  Signing off for now.  

9/5 7:57AM:  I just weighed in at 100.3 kilograms, a 1.1 kilo increase over yesterday morning.  This is directly attributable to the fact that I only removed 950 ml of fluid yesterday.  I do feel bloated.  So much for breakfast this morning.  Fortunately, PD nurse _____ is visiting today; we can go over my numbers and routine to pinpoint what’s going on.

I just re-read what I’ve written so far, and it is 100 percent on point.  I see that one thing has changed that I wasn’t counting on:  my diet.  I can see that with lesser dietary restrictions, my diet went right to meatball marinara sandwiches (which I wrote down) and potato chips (which I didn’t).  Potato chips are just about the worst thing that a PD patient can eat because of all of the sodium.  Sodium will make my body retain water, which means that I won’t take off additional liquid when I dialyze, which leads to bad results like yesterday’s, which leads to “what the ____” moments like the one I had when I weighed myself this morning.  The safest thing for me to do right now is cut out the potato chips.  They need to return to being a rare guilty pleasure, just like they have been for the last three years or so.

I haven’t eaten yet today, and plan to eat only once (dinner).  I’m not hungry yet, either.  This is another change.  My appetite was predictable before; now, not so much.  I am going to have to monitor my diet even more than before.  This is the last thing I expected with the change to PD, but them’s the breaks.  It will all work out for the best in the end.

3:53PM:  The PD trainer has come and gone.  I passed the survey/inspection with flying colors, and am now officially a PD patient at the clinic.  I have to visit the clinic tomorrow to learn how to administer epoetin injections into my dialysate solution bags (epoetin helps stimulate red blood cell production).  Hopefully after tomorrow and Monday, I won’t have to visit until the 20th (another visit with nephrologist).  Like I said, there’s a lot more to this switch than I anticipated, but it should be well worth it in the long run.

10:12PM:  Dinner was delicious.  Steak with onions and bell peppers, zucchini with mushrooms and onions, and a little stuffing.  And half a piece of cake.  Well worth the wait!

I think I’m done with this update.  There’s so much I didn’t cover, but whaddyagonnado?