My Year on PD

Hello! My name is Dave White, and I’ve been a dialysis warrior since late 2009. I live in Prince George’s County, MD with H____, my wife of 13 years. I currently do in-center hemodialysis on a Tue Thu Sat schedule (1st shift), and I also did in-center nocturnal dialysis for two years, as well as one year of peritoneal dialysis (sometimes called PD). This essay covers the good things, bad things, and surprises I experienced during my year as a PD patient.

Here's some background: In Spring 2013, I had grown weary of the extra time in the dialysis chair that nocturnal dialysis required (six hours in my case, as opposed to 4.25). I also longed to return to a “normal” wake/sleep schedule. I had only been listed for a kidney transplant for about a year at the time so, since the chances of receiving a kidney in the near future seemed slim, I started looking at peritoneal dialysis (PD) as an option. 

Right around that time, my dialysis facility had a Baxter representative visit to talk about home PD with any interested patients. During the presentation, I asked the rep and two current PD patients all the questions I had, and by the end of the presentation I was 95 percent convinced that I would try it. The facility social worker provided me with the remaining 5 percent by reminding me that if I didn’t like PD, I could always switch back to hemo. With that in mind, I made the necessary arrangements for surgery and training. I had my PD catheter surgically implanted in early July of 2013, and started my training about two weeks later. I had my last hemodialysis session on July 31, and started doing PD at home the very next day.

In early April of 2014, an abscess developed near my catheter tunnel (the area between where the catheter attaches to the peritoneum and the catheter exit site), and the abscess was surgically removed a couple of weeks later. The abscessed area was not treated with antibiotics post-surgery, and unfortunately I developed peritonitis three months later. When I was advised that my catheter would had to be removed to completely clear the infection, I decided to remove the catheter permanently and return to hemodialysis. The catheter was removed on July 31, and I restarted hemodialysis the very next day, having spent exactly one year on PD.

Here's what I discovered during my year on PD:

The Good:

No more long needles!

Dialysis center visits dropped from about a dozen per month to twice monthly (once for bloodwork and other tests if needed, and once to review the results and meet with the care team).

I had a steadier energy level, and no longer had that washed-out “dialysis hangover” feeling three times a week.

Travelling out of town was much easier, because there was no need to coordinate dialysis times with another clinic (although a nearby center was notified in case of emergency). 

There were fewer restrictions on my diet. I could drink orange juice, eat bananas, and eat tomato or tomato products much more often, and also could drink more fluids because, since I was dialyzing more often, I didn’t have to pull off as much fluid during each session. I freely admit that I made the most of this opportunity!

Lastly, the home environment was preferable for a bunch of reasons: it was more comfortable, I didn’t have to sit near other patients whom I might find objectionable for any one of a variety of reasons, and I had all the creature comforts of home within reach.

The Bad:

I am alive and productive thanks to dialysis, so I don’t want the following to read as being ungrateful. This is meant to be a summary of my year on PD, so I listed everything that I could think of. 

Three outpatient surgeries, each of which left me in considerable pain for about a week.

Every three months, when I visited the facility for bloodwork, I was required to bring the previous day’s used PD solution and filtrated liquid so my dialysis adequacy could be measured. The liquid weighed about 40 pounds and, since I had to use mass transportation to get it to the center, I dreaded this day!

Being connected to the cycler overnight was inconvenient, as I couldn’t roll and thrash around in bed as I normally would, and I couldn’t lay on the side where the catheter exit site was. The alarms that the cycler would sound every night were annoying and a little frightening as well.

The time commitment was burdensome: nine hours overnight, one hour during the day, and an hour of daily setup and teardown meant that I spent eleven hours a day doing dialysis-related stuff.

In addition to the time commitment mentioned above, I spent a significant amount of time every day scheduling activities so they would not conflict with my dialysis schedule. At times, it felt as if I was spending the whole day either dialyzing or thinking about dialyzing. The delivery of PD supplies had to be coordinated every month as well.

I’m 6 feet 3 inches tall, and weighed 97 kilograms (about 214 pounds) when I was on PD. Generally speaking, larger people need more time dialyzing on PD to clean the bloodstream of toxins, and may also have to carry more fluid in their peritoneum during dwell periods. I had to carry around up to 3 liters of PD solution, and even more towards the end of each dwell. Carrying that amount of fluid would sometimes be extremely uncomfortable.

Sometimes, “drain pain” (it usually felt like a cramp on one side) occurred when draining. The only solution that worked for me would be to stop draining and resume when the pain subsided, and that would take anywhere from five to 15 minutes. This would add time to each exchange of fluids.

Supplies took up a lot of space. We live in a modest two-bedroom apartment, and I had to get really creative to make all the equipment fit in my bedroom. I had to make room for about 50 boxes of PD solution, a cycler, an IV pole, and various other PD necessities. The PD solution boxes were each about the size of a toaster oven, and weighed 25-30 pounds.

Speaking of supplies, used supplies had to be disposed of properly. There are two aspects to consider. First, the packaging materials have to be discarded regularly because they take up space; this wasn’t too much of a problem for me, but it might be a huge issue for others depending on local governmental regulations. Secondly, the PD solution contains dextrose, so if you just dump it down the sink, a nasty clog situation will eventually develop. I found it necessary to pour boiling water down the sink after dumping used solution.

The PD catheter creates a new orifice in the human body that has no natural defenses to protect against infectious agents and organisms. As a result, exceptional care must be taken when performing exchanges. A protocol called the “aseptic technique” must be followed; it isn’t very time-consuming, but it is very exacting. If at any point the protocol is violated, the patient may have to start the procedure all over again, and is expected to self-report any contamination of the catheter and take immediate action to prevent infection. This can involve antibiotics, a trip to the dialysis facility to get examined, a trip to the hospital emergency room, or any combination of the above.

Sometimes infections occur even when all precautions have been properly taken, and when this happens, peritonitis - inflammation of the peritoneal cavity - can occur. As I mentioned earlier, this is what turned me off to PD permanently. I had to take antibiotics, had a stomach ache that wouldn’t go away, and was generally miserable for over a week.

Last but not least, the relentless routine was disheartening. Hemodialysis patients get four days off a week. Many PD patients get no break at all -- it’s either do an exchange, or do an exchange, day in, day out, 24/7/365. This, along with the constant planning and scheduling, got to me every so often.

The Surprises:

After a few months, I found that I was drinking a lot more fluid than recommended. I was able to do this because I could choose how much fluid to remove on a given day. My nephrologist could tell how much fluid I was removing by looking at the reports generated by my overnight cycler; she didn’t reprimand me, but she let me know that she knew. Over the long term, I could have damaged my peritoneum by using higher concentrations of PD solution in order to remove more fluid during each exchange. I knew this, and could have done a much better job of managing my fluid intake while on PD.

This is why I was shocked when my “drink more, pull off more” mentality stopped dead in its tracks when I returned to hemodialysis three times a week. I really can’t explain it other than by saying that the control that I had over my therapy while on PD transferred over when I returned to hemodialysis. (Then again, it could be fear of cramping.) I’ve picked up a few tricks to limit my fluid intake since returning to hemo (like substituting fruit for liquid at meals or not refilling my glass), and those tricks help, but I think that a change in mindset has been the main reason.

Another big surprise is that I don’t miss PD at all. I think the biggest reasons are 1) the changes at home that were necessary to support the PD lifestyle, 2) the constant scheduling, rescheduling and thinking about scheduling exchanges, and 3) fewer opportunities to exercise during a typical day. I re-check the feeling of not missing PD regularly by asking myself whether I miss it at odd moments, like when waiting for the city bus that takes me to dialysis at 5:15am in inclement weather, or when patients near me on the center floor cough and sneeze without covering up or wearing a surgical mask, and even when my fistula arm is sore; the answer is always a resounding no. The bottom line is that when I was on PD, I didn’t miss hemo one bit, and now that I’m doing hemo again, I don’t miss PD at all.

My diet has improved thanks to PD. One disadvantage of hemodialysis is that I usually don’t feel like cooking dinner the evening after a session; this was definitely the case that first year of hemo. Back then, I would eat more fast food and take-out or delivery food as a result. The steadier energy levels that PD gave me meant that I could cook more of my own meals, and that’s what I did. 

Two changes in my habits resulted. The first was that I mastered the art of cooking for one. I did this by cooking for two and eating the leftovers a day or two later. (My better half loves my burgers and shrimp, but that’s pretty much it.) The second change resulted from developing the habit of eating supper while on the cycler; I had to wash the pots and pans before eating, because doing it afterward was not an option. Both of these habits continue to this day.

The “aseptic technique” of sterilizing and sanitizing PD equipment before and during each exchange required the use of liquid antibacterial soap. Not only do I still use it to wash my hands, but I use something similar in the shower as well, and I no longer use bar soap at all.

The folks at Baxter wanted the cycler back when I stopped doing PD, but I was allowed to keep everything else. This was great until I learned that no one wanted the month’s supply of PD solution (almost half a ton’s worth) that was just delivered. I forget why Baxter didn’t want it, but I remember clearly that my dialysis center didn’t want it because they would have had to pay $100 to return it to Baxter or something like that. I couldn’t understand why all that unused solution should go to waste, but the upshot was that I had to dispose of it myself. I spread the task over four or five weeks and, when done, was delighted to discover that my bedroom space now looked like a normal living space, thanks to 1) the PD supplies no longer being in the room, and 2) all the things I had to move or dispose of to make room for the PD supplies that were no longer there. My clothes had room to breathe in the closet again!

Finally, thanks to PD, I discovered two great dialysis-related Facebook groups: Dialysis Discussion Uncensored, and Home Dialysis Central. I still find them to be tremendous resources, and review them and a few other dialysis discussion groups constantly.

That sums up the highlights, lowlights, and surprises of my year on PD. Would I make the same decision to switch if I knew what I know now back then? You would think that I would run away screaming - but it's not so simple! I really like my life right now, and my year of PD is a big reason for that, so I think that I'd make the same decision!

Vital Signs

While I was taking my blood pressure and weight this evening (as I do every evening before starting dialysis) I has a moment of clarity:  I am one hundred percent in charge and in control of my weight and my blood pressure.  As such, I am one hundred percent responsible for my numbers.  All I have to do is continue to do what I have been doing.

I'm sorry that I haven't been updating my blog recently, but that's because I'm doing other things, and that in itself is a triumph!

I hope to return in -- well, who knows?  :-)

Fitness is its own reward.

Staying in shape while on dialysis is a tremendous challenge, but it's worth every grunt and groan and drop of sweat.

Moving Right Along...

I'm finishing up my fourth month of PD now.  I've been a dialysis patient long enough to be tired of writing about it.  My transition from hemo to PD is about 90 percent complete.  All the procedural changes have been completed; all that remains is for me to keep hitting my marks, and to do everything on my end to stay in "active" status on my kidney transplant waiting lists (Georgetown and Johns Hopkins).

The last six months have been fraught with change.  The changes have all been positive, but have also all been challenging.  I realize that this is not a phase; this is how my life is now and will be going forward.  My health must be addressed daily, and I must be equally proactive in all other areas of my life in order to maintain the momentum that I have created.

It goes without saying that I expect to expand upon 2013's achievements in 2014.  My list of New Year's resolutions for the coming year is daunting, but so was last year's.  I anticipate similar success.

I've listed thirteen resolutions for 2014, and writing is not one of them, as I expect to be doing loads of situational writing this coming year.  As a result, I do not anticipate adding entries to this blog on a regular basis in 2014.  My energies will be, as they were in 2013, directed elsewhere.  I will return every now and again to record my progress.

A Happy New Year to you and yours!  May it be rewarding and challenging!

And that's how it goes....

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?

Beyond Dialysis! Speech Notes (6/19/2013, Red Horse Restaurant, Frederick, MD)

 

 

I would like to thank DaVita Dialysis, the National Kidney Foundation, and all of you for giving me the opportunity to participate in this “Beyond Dialysis” event.  I’m pleased to be here -- mainly because it got me out of the house today!

The name “Beyond Dialysis” resonates with me because that’s exactly what I want to do:  get beyond dialysis.  It’s a huge part of my life.  I want to move forward, but I have to respect it every day.  The first step in getting “beyond dialysis” is embracing dialysis.  If you don’t do that, it will always be a roadblock.  I want to turn the roadblock into a challenge, a step in another direction.

My name is David White.  Everyone calls me Dave or “Mr. White” or “Sir”.  Even when I was in my 20s people called me “sir”.  It used to bother me, but now it doesn’t because I’m 51 years old and the staff at DaVita K Street call me “Mr. White” three times a week whether I like it or not.

I’m New York City born and raised, and have lived in the DC metro area since 1999.  I currently live in Prince George’s County with my wife Hilva who moved here in 2002 to be with me.  I’m in my fourth year of in-center hemodialysis and my second year of nocturnal dialysis.

In Fall 2009 I was diagnosed with Stage 5 renal failure along with anemia and malnutrition.  I was 47 years old with no job and very sick to boot.  I learned the hard way that I was not indestructible.

I relocated to DC from New York as a Big Law IT manager.  Great job, great salary, great life.   I did the math one year and realized that I was working an average of eight hours a day every day, weekends and holidays included.  To make a long story short, I burned out and quit my job in the summer of 2005.  I wanted to take a break, and take a break I did.

When I started looking for work again in 2007, it was recession time.  I had no luck finding work and we went through all our savings paying rent and paying bills.

Flash forward to 2009, please.  I was still looking for work.  We moved from our pricey digs in the District to a smaller apartment in PG County.  While adjusting to the new surroundings that summer, I noticed that I was getting weaker and getting short of breath more easily.  I thought that this was because I had stopped working out.  I was terribly wrong, yet more stubborn than ever.  Years of not visiting the doctor regularly had taken its toll.

In October of 2009 I was admitted to GW Hospital, where three terrible weeks tried to make up for years of neglect.  I was diagnosed with Stage 5 renal failure, anemia and malnutrition.  To make matters worse, I had no health insurance at the time.  Though my situation was bleak, my wife, my family and the good Lord had my back during the scariest moments, and even in my darkest days I was determined (a) to survive and (b) to live.  From that point, there was nowhere to go but up.

I did dialysis the first five or six times in the hospital, and the day after discharge I did my first in-center hemodialysis at Davita K Street in downtown Washington DC.  I wrote the following about a year and a half ago regarding my first in-center hemo session:

***

I was not a pretty sight when I entered the K Street dialysis center in November of 2009 for my first in-center hemodialysis session.  I was still very sick, but well enough to leave the hospital.  EVERYONE thought I should stay a little longer, but after three weeks I just couldn’t stand another day in that place.

I was almost turned back by the center that day because my catheter (inserted about two weeks prior for dialysis purposes, then re-inserted because of excessive leakage) was still leaking blood.  When the nurse practitioner attempted to send me back to the hospital, I said “no %$!@ way!”  After a quick conference with the nephrologist on call that day, she relented and my treatment began.

The session started around 12:30PM, and ended around 5:00PM.  I wasn’t scared and wasn’t really nervous; I just wanted to get the session over with so I could get home.  It’s over three years later and, to this day, that sentiment rings true every time I walk through the dialysis center entrance.

Around 2:03PM I decided to stop watching the clock in the hope that the time would go faster.  I watched some TV and closed my eyes and thought positive thoughts.  When I thought at least 15 minutes had passed, I took a look at the clock.  The %$@%^?# thing read 2:05.

Since that day a lot has changed and a lot of things have remained the same.

Dialysis is still uncomfortable and tedious, and I’m still upset that I was the “lucky winner” so to speak.  And my condition still dictates many of my daily decisions.  But there have been some positive developments.  I am stronger than ever (80 consecutive push-ups last week!).  My cholesterol is now an impressive 177.  Thanks to packing a “dialysis bag” three times a week I am now an excellent packer.  I’m more determined to succeed at every endeavor, am relentlessly optimistic about my condition and our future, and am taking steps every day to make that future happen.  One of those steps is memorializing my experiences so I can learn from them and not make the same mistakes a second or third or fourth time.

***

[Life as a sick dialysis patient]  So I settled into the unhappy routine of being a dialysis patient.  Getting to and from dialysis was no small task.  We no longer had an automobile, and the dialysis center was over six miles away.  At the time, I was too weak to use mass transit, so I had to take a cab both ways; after a couple of months I was strong enough to use the Metro and bus system, but there were many  days when I used travel difficulty as an excuse to miss my dialysis sessions.  My attendance record in 2009 and early 2010 was terrible.  I used the “3 strikes” rule to its worst, and I had to be re-hospitalized twice.  While I thought that I was “getting with the program”, the truth is that I was as hard-headed as ever, if not more so.

One of the big turning points in my life with dialysis was a planning session at DaVita K Street with my wife and the DaVita staff.  It was a serious wake-up call.  Each person (social workers, dietitian, nurse practitioner, and my wife) went into specific details on how I was failing to live up to my end as a dialysis patient, and I finally saw the big picture.  I was my own worst enemy, and I had to do better in all areas if I expected to make any progress.  This was a bitter pill to swallow, but sometimes the truth hurts.  Fortunately, DaVita provided me with an action plan that was chock full of tasks and deadlines and had my name all over it.

[Step One - no more missed sessions}  Challenge Number One was to stop missing sessions.  No more excuses!  Even when I missed a session, I would make it up the next day.  It had finally sunk in:  missing dialysis appointments was a terrible idea.  And wouldn’t you know it, I immediately began feeling better.  Or at least I wasn’t feeling terrible all the time.  After a few months, I was Joe Regular at the center.

One of my measures of how I was doing was how often I felt like crap.  Moving from feeling terrible all the time to feeling terrible only part of the time was a huge improvement!  Over time, I realized that my really bad days weren’t as bad as they used to be.  Next step - on some occasions I actually felt good physically!  The physical improvement combined with my positive mental attitude spurred me on to do more and more.  2010 was the year that I decided that if this was my life, I was going to be the best dialysis patient I could be!

[Step Two - Do more]  By the time 2011 came around, I was feeling well enough to take the next step.  After getting the OK from my doctors, I started exercising again.  New Year’s Day was the first day I started exercising.  Guess how many push-ups I was able to complete?  Any guesses?  Zero.  I was shocked, but I was not dismayed.  I did a few more exercises that day in my apartment and called it a day.

Oh yeah --- New Year’s Day 2011 was also my first day without a cigarette, and I haven’t had one since.  I had smoked a half-pack to a pack a day for over 32 years.  The patch did not work for me; I built up to quitting step-by-step, and it took about seven or eight tries, but everything came together at the same time that everything else in my life started coming back together.

One reason that I seized on exercise is that it was a positive choice that I could control.  Ditto smoking.

[Smoking - gradual cold turkey]

[Exercise - two questions]  Every morning I asked myself two questions:  (1) Do you have time to exercise?  The answer was usually yes, unless I had an appointment.  (2) Are you physically able to exercise?  If the answer was yes, I got in a workout, no questions asked.  I tracked how often I exercised on my calendar, and also tracked particulars like how many push-ups I did or how far I ran.  I set goals for myself constantly.  Some goals I didn’t reach; others I reached or exceeded.  I learned to really listen to my body, as it would tell me when to slow down a little (or when to stop completely).  In late 2010 our apartment complex opened a pretty nice fitness center that was included as an amenity.  Great timing!  Even without the nice gym, I was determined to start exercising, though.  

[Push-up particulars]  A big help in my push-up project was a program called “100 push-ups” that I found on the Internet. I don’t want to bore you with any particulars here, but I would like to brag a little!  On New Year’s Day 2011, I was able to complete zero pushups.  Today I can easily do 50, and have done as many as 83 at one time.  In 2011 I did over 8,500 pushups, and since then I average well over 1,000 push-ups every month.  I can do more pushups now than I did when I was in the Army 30 years ago.  A lot more.

[Running particulars]  Running also became part of my exercise routine.  As usual, I set my goals high and targeted a marathon run in 2012.  But that hasn’t worked out as well as the push-up regimen did.  I can, however, run a mile or two with bad intentions, and that isn’t bad for a guy who could barely walk a year or so earlier.

[Results -- ability to run; no more high blood pressure]  There were visible results.  My high blood pressure was a thing of the past!  At one point I needed two high blood pressure medications -- one for my heart rate, and one for my pressure.  I think it took about year for me to work my way off of both of them.  And my limp was no more!  

[Catching a train]  I recall running to catch a train on the way to dialysis one day.  Three amazing things happened:  (1) I ran to catch the train; (2) I caught and boarded the train; and (3) I was breathing normally afterward!  I remember that like it was yesterday.

[The 51 Stairs]  My Metro train station is elevated.  There are three ways to get to the train platform:  the elevator, the escalator, and the stairs (51 stairs, to be exact).  In my early dialysis days, I took the elevator whenever I could and couldn’t dream of taking the stairs, but as I got stronger the stairs stopped looking like an obstacle and started looking like a challenge.  I accepted the challenge and started using the stairs whenever I could.  As usual, it took months of hard work, but I can now run up and down the stairs just like all the other Metro riders do (or can).

[Diet and fluid]  Controlling my diet and fluid intake took years.  Scales and lab reports don’t lie, and I eventually got tired of seeing my poor results and tried harder to improve.  Diet was and is a lot more frustrating than fluid. I sorely miss being able to drink as much fluid as I could handle, though.  There are some high points, though:  every month I get to eat an entire pizza!  I currently go for a large chicken alfredo with gyro meat and banana peppers.  It takes me two or three days to work through.  And as long as I have it a couple of weeks away from lab time, my numbers are good.  Moderation is more important than ever for dialysis patients.

[Slip-ups are OK]  It’s tough to be good all the time!  Slipping up is part of the human experience.  Each slip-up meant that I was a step closer to the goal.

Move to nocturnal dialysis; joined MARC PAC] By the end of 2011 I was strong enough to want to do more.  One day at the dialysis center I read one of Network 5’s Patient Advisory Committee leaflets and saw that new members were welcome (with approval, of course).  I applied and was accepted, and started working with the group in the Fall of that year.  Being a member of the Patient Advisory Committee has helped me learn a lot about issues that affect all dialysis patients and caregivers, and given me the opportunity to contribute to kidney disease awareness by advocating on a regular basis.  I attend meetings and occasionally help as needed by sitting on focus groups and working on special projects.  [LAN; this meeting].  As of a month or so ago I was selected to be a committee co-chair -- not too shabby for a guy who three years ago was one of the worst overall patients in the entire Network!

Around the same time that I joined the PAC, I switched from daytime dialysis to nocturnal dialysis in the hope of landing daytime employment.  It’s a six-hour session as opposed to four hours.  I enjoy having my days free for exercise or whatever.  One interesting development is that I’ve started turning off the television for long periods during dialysis, because I find it easier to focus on my work (writing and studying) there than I do at home, where distractions are many.  Now if I can figure out a way to get paid while I’m in the dialysis chair, I’ll have it made!  But with all that said, I’m still tiring of hemo in general, and am looking at peritoneal dialysis as an alternative.

[What’s next?]  That’s my story!  What’s in my future?  Hopefully, more MARC activities and advocacy.  I can help and advocate for others by living a productive life.  Definitely more studying!  I plan to obtain Microsoft and Cisco professional certification by self-study, and then enroll in university to earn degrees in information technology and possibly music!  After that, who knows, I might look into local political activities.  Oh, and did I mention that I would like to return to the workforce?  I have been working with Maryland’s Vocational Rehabilitation program since December in search of employment.  And I hope that a kidney transplant is in my future as well.  As of two months ago, I am on Georgetown Hospital’s transplant waiting list; with luck and a can-do attitude, I hope to get on Johns Hopkins’ waiting list as well.  Other than that, I plan to maintain, maintain, and maintain.  No more slipping back, and no more plateaus in general.  As soon as I accomplish something, on to the next challenge.

[Closing]  I’ve learned that it’s okay to ask for help when you need it.  Many times the resources you need are there for the asking; you just have to ask!  There’s no shame in admitting that you need help.  There are good people and organizations out there that are willing and able to lend you a hand when you need it.  If you don’t ask, how will they know?  Speaking of good people and organizations, I would like to thank the people at DaVita K Street, my mom, and my wife Hilva for taking care of me when I could not take care of myself.

I’ve also learned that change is a constant and has to be addressed all the time.  As soon as you think that your ducks are lined up perfectly, something will pop up to change things.  A perfect example is in-center hemo.  Just when things get routine, there’s a rule change, or a schedule change, or a people change.  I know how I react to changes:  very badly!  I’ve learned to throw my first reaction out!  Life is about change.  Embrace it -- don’t let it control you.  And remember that change can be good, and that you can be a positive agent of change.

In closing, I’d just like to wish all of you the best on your journeys.  Don’t ever give up hope.  Keep pushing beyond dialysis!  Thank you.