Notes for Feb. 2011 PAC Conference Call

Is there a need for orientation binders or pamphlets for new patients?

After two-plus years I am still learning things.

Busted

4:50AM a couple of weeks ago:  I get on my bus to go home after dialysis.  There are usually one or two other passengers in addition to the driver, but today it was just the two of us.  I take my usual seat and settle in, and after about two minutes the unmistakable smell of weed hits my nose.  Not the cheap ish, either; this smelled like that sweet sticky stuff.  Brother Bus Driver had apparently lit up not too long ago - or some bus drivers had been partying on the bus just before he checked it out for the first run of the day.

I had two immediate thoughts: (1) If he gets into an accident, I'm suing for millions; and (2) apparently you have to pass a drug test to get the job, but once you're in it's the Wild West.

Notes from 12/6 Session

After consulting with nurse practitioner Sherrie, my dry weight was increased to 105 kilos (231 lbs).  This combined with my suddenly found ability to drink less liquid is making for much more comfortable dialysis sessions and recovery periods.  I actually felt good after this session.

Everyone is being super-careful with me.  It might be because they know that I am on the Patient Advisory Committee.  Whatever.  It becomes a little tedious at times, but I'll take it.  It's better than being an afterthought.

I sense an invisible hand at work doing good things.

Notes from 12/4/11 Session

Question for Dr. Raj:  At this juncture, I don't plan to pursue a kidney transplant.  Would it make sense to get evaluated for one anyway?

12/1/11:  due to a cancelled appointment, I was downtown around 7PM with nothing to do and about 3 hours to kill before dialysis.  I decided to go directly to dialysis and see if I could get put on earlier than normal and get off around 1:30AM so I could catch the last bus home.  The idea worked like a charm.  I just had to put up with the usual long-winded speech from Lakshmi because I was only on the machine for 5 hours instead of six, and sign a waiver.  No problem.  The beautiful part was that I had only gained 2.6 kilograms between sessions, which minimized the impact of the shortened session.  I normally put on 4.5 to 5 kilograms between sessions.  Drinking less liquid does pay off in the long run.

One anomaly I noticed on 12/1 is that patients who normally get off their machine after I do (after 4AM, that is)  are getting put on @ 8PM instead of my usual almost-10PM!  What's up with that?  Do they need to go at a slower pace?  Are they putting on more liquid?

Notes for next MARC PAC Conference Call

1.  This week in dialysis was plagued by illness.  Not mine, but the people around me.  The technician was fighting off a cold for the whole week.  He had enough sense to wear a mask, but it was still unsettling when he was coughing right over me.  And on top of that, the guy next to me kept sneezing and coughing all night the last two sessions.  Are there any guidelines for this kind of thing?

2.  I switched to nocturnal dialysis about three weeks ago, and must note that the staff pays more attention to detail than the daytime staff.  I understand that the day-time staff has to deal with a much more diverse (read much less manageable) patient population; with that said, the difference is astounding.  My new schedule creates a scheduling conflict which will cause me to miss up to the last 30 minutes of each conference call going forward.  I would suggest that nothing be done on either end to ameliorate this condition for the moment.

3.  Fire drill on 11/8 at 11:45PM.  Unintentional - the cleaning crew in the parking garage set off the alarm.  I was pleased that a week prior Lakshmi had walked me through the emergency disconnect procedure at my insistence.  Of course, that was the first thing that I practiced in my mind.  We did not have to disconnect.  Again, I must note that Lakshmi gave me the option to do so if I wished.  Staff kept us informed to the best of their ability every step of the way.  I have to say that I was pleased with the way it was handled.

4.  Thanksgiving scheduling seems to be a bit of a clusterfock.  Every option presented was a bad one.  All parties involved are looking out for their own best interests.  Patients want Thursday off.  Staff wants Thursday off.  Admin wants to toe the budgetary line.  I just want to be dialyzed in routine fashion.  So far this is a huge reason for me to get off of the hemo machine and consider other options.

Notes

(1) At the end of one of my last afternoon dialysis sessions, the nurse in charge informed me that my high heart rate at the end of the session was an issue.  She explained that that meant that too much liquid was being removed from my body too quickly, and that that was putting unnecessary strain on my cardiovascular system. The remedy is to have longer sessions to lessen the stress.  Fortunately, I did not have to pursue this issue, since I have transferred to nocturnal dialysis sessions, which are much gentler on the system because they are 6-hour sessions.  I have, however, noticed that my heart rate is still high at the end of the session.  I am not going to pursue the issue now, but wanted to note it for future reference.

(2) Paperwork should be brought to patients' attention at the beginning of a session, not at the end.  At the end of a session, all I am thinking about is getting out of that room.  Again, my personal issue with this has been ameliorated by my moving to the nocturnal dialysis shift.  To be honest, the shift is much better controlled.  Some of that is out of the staff's hands, as nocturnal patients are expected to adhere to a somewhat more restrictive and cooperative set of rules, and that makes them an easier group to manage.

Notes

Continuous Ambulatory Peritoneal Dialysis looks interesting; I would like to see the entire procedure from A to Z.  Is it a do-it-yourself solution?

Dialysate is the solution used to transfer waste materials from the body during dialysis.

Peritoneal dialysis - blood is cleaned inside the body
Hemodialysis - blood is cleaned outside the body

Peritoneum - peritoneal membrane

** PD is looking good. **

Rough Week at K Street Dialysis

I am in a transitional period with my dialysis treatments. I’m in the midst of switching from sharp to dull needles for my sessions at the K Street dialysis center. The dull needles don’t hurt at all; they just feel a little weird when inserted into the fistula blood vessel. I reached this point by technician Sheila’s use of the “buttonhole” technique to stick my arm for three weeks or so. “Buttonholing” means using the same exact spots to insert the two needles for about a dozen consecutive sessions, very much like piercing an ear.  The end result is safer and less painful insertions going forward, and a lesser chance of developing skin keloids -- the arm looks better.

The transition from sharp to dull needles can be messy at times; in my case Monday was the messy day.  Both needle insertions leaked, and I was so uncomfortable as a result that I ended the session early – something that I practically never do.  On Wednesday, the dull needles could not be inserted because my holes had closed up, much like an earring hole does, I guess (I wouldn’t know), and Sheila had to use sharp needles to stick me for my session.  Among other things, I was in what I thought was excruciating pain for the first hour or so, but I have a pretty high tolerance for pain so I toughed it out.

Then came Friday.  All that pain tolerance/tough guy crap went right out the window as I experienced the most excruciating cramps I have ever had in my life toward the end of my session.  I was really uncomfortable for some reason, but couldn’t pinpoint the cause.  The reason started becoming self-evident when I had one short cramp in my calf.  In my case, my hands and feet cramp a little towards the end of each session; if they cramp a lot, it is a sign that too much liquid has been removed too quickly and a saline IV is offered.  Until Friday, I never asked for an IV.  But the top part of my left foot in front of the ankle started cramping and wouldn’t stop for what had to be at least 20 minutes.  I trust that you all know what cramps feel like; I would guess that these were as bad as any you may have experienced.  The worst part was that if I tried to adjust my body my hamstrings and quads threatened to start to cramp up on their own, so I couldn’t move around; I had to sit there and take it.  I was sweating, grimacing, praying, and trying not to make too much noise and scare the other patients.  After what seemed to be an interminable amount of time, the cramps slowly subsided.  I sat there for a good half hour before I even thought about getting up; we then concluded my session and I went home.  Daymn!

Apparently, I gained a couple more pounds over the past couple of weeks, and it all hit the fan during yesterday’s session.  As a result, I had to take one for the team, and found out the hard way that my dry weight (how much I weigh after a dialysis session) needs to be increased yet again, from 104 kilograms to 106 kilograms (about 233 pounds).  I’m still putting on meat and muscle, which is great.  A little advance notice would be appreciated, though!

More change comes next Tuesday evening, when I start a two-week trial period of nocturnal dialysis sessions.  My sessions will now end first thing Monday, Wednesday and Friday mornings.  I’m making the change so I can go back to work on a normal full-week schedule.  I certainly hope that all goes well.

The Weeks.

Getting better takes time.  A lot of time.  I had weeks where the whole week was

Dialysis; recover and rest; dialysis; recover and rest; dialysis; weekend (recover and rest)

for week after week after week.  And I was very happy to do it.

Among other things, this recovery process has taught me patience and persistence.

Wednesday, September 14: There's Change Afoot

There’s change afoot at the dialysis center today (Wednesday, September 14).  I walked in at the usual time and there were patients in the waiting room who are usually seated by the time I arrive.  When I walked into the big room, there were almost no empty seats (out of about 24).  Many seats had brand-new faces.  There were the same personnel in the white coats plus new white coat people (or guests) and a few upper-management-looking dudes.  What’s up?  My first guess is that a nearby center has ceased operation or been shut down.  In hindsight, I think that we were participating in a disaster recovery exercise. 

I had to wait about half an hour to be seated, and had to “press” for that.  (If you don’t “press”, you might wait in the waiting room for an unnecessarily long time.)  I will curb my curiosity for the moment and see whether this “change” is permanent before investigating.  In the meantime, I like it when the staffers who normally only run at 85 percent run at full blast.

Two or three months ago, I realized that I have to be prepared for anything when I walk through that dialysis center door, and I always keep in mind that my one and only goal is to walk out of there healthier than when I walked in.  This mindset has been a tremendous aid in making this stage of my life and recovery more tolerable and less worrisome.

[Author note:  On Friday, 9/16, it was business at usual at the center.]

Unusually Low BP Today

I forgot to take my blood pressure early this morning.  I usually take it between 6am and 7:30am.  This morning I didn’t take it until I had completed a tough one-mile run followed by a stop at the supermarket where I loaded up on protein and an uphill walk home.

9:35 am:  89/26/99

9:55 am:  163/65/107

10:18 am:  94/68/102

Blood pressure is too low.  Hydrate.

2:02 pm:  123/80/89

Tough day for a nice guy

Yesterday@2:23PM:  I want to hit something.

I was tested all day long from the moment I got in the dialysis chair until I got off the train.  My number was definitely up yesterday.  The good news is that I stepped up to the challenge and did not let anyone get the best of me.

Update - August 3, 2011

Update

I’m sorry, but I have more good news to report!  J  This morning, I am not training for fear of overtraining and injuring myself, as opposed to not training due to being sore or injured, or weak or dizzy, or not waking up early enough, or just not feeling like it.  It is 5:32AM as I type this, and I’ve decided to catch up on some paperwork (writing, recordkeeping, etc) instead of taking my one-mile run this AM.  I worked out like a beast yesterday afternoon; among other things, I did 61 consecutive push-ups, a new high.  I definitely over-did it a little on the leg press because I can feel it in the back and sides of my knees this morning.  The feeling definitely says “running is not a good idea”, so I am listening to my body and taking full advantage of the morning off.

Overall, training is progressing nicely.  Push-ups are on schedule; sit-ups are coming along (although I have not focused on them the way I need to just yet); and my running is improving – which is to say I am actually running now.  My times are  way removed from where I would like them to be in October when I re-take the Army physical fitness test, but I am making slow and steady improvement, and that is all I can ask.  As long as I train hard and often, I am confident that the numbers will come along in time.

This confidence is brimming over into other areas of my life.  While dialysis on the whole is still a scary endeavor, I now trust that every time I go that I will leave the center healthier and feeling better than when entered it.  In addition, I feel much better once I get home and overnight.  My demeanor is still very chipper and positive.  My writing is finding a more steady pattern; my biggest concern recently is finding time to write!  I actually even take an occasional trip outside for leisure purposes only instead of “having to do this” or “having to do that”.  Everything seems to be coming back together slowly but surely. I am grateful and remain humble because I know that it can all be taken away from me again in a second; this makes me appreciate everything that much more.

More good news is on the way.  I can feel it; now I just have to go out and do it!

Healthy with a Bullet

If I only get to experience the way I feel right now for another 24 hours, it was worth every bit of the hard work involved.

Some things have changed.  Sweating, for example, is quite interesting.  My inability to urinate has put a new perspective on sweating.  All of a sudden, it's not such a bad thing.  That said, I seem to be sweating less, even on the hottest days.  That may have something to do with my weight being down to a more manageable 225 - 230 lbs. as opposed to 270-300 lbs.

My workouts have not increased in length, but have increased in variety and quantity.  I've broken my runs out into a separate workout, and I travel to my old stomping grounds, the Southwest Waterfront, for my runs.  The land is flat there (as opposed to all uphill or downhill), and the boardwalk measures exactly half a mile from end to end, which makes measuring my training runs very easy.  Treadmills are a great training aid, but they are no substitute for actual running.  In addition, my apartment building has added some nice new equipment to its gymnasium.  With a couple more amenities, it will almost be a complete fitness center.

The schedule is challenging at times, but so far is manageable.  The warm weather is making it easy.  I look forward to re-taking the Army physical fitness test in October, and to whatever else the fall season brings.

A Brief Moment In the Dialysis Center

In the dialysis center, the patients usually have a clear view of the half of the center that they happen to be sitting in.  On this particular day a young lady was sitting about five or six chairs away from me.  I watched as five, now six, technicians hovered over her.  Being assisted by one technician is normal.  A patient feels lucky and special if two techs tend to their needs at the same time.  If more than two techs are present, this generally indicates a problem of some sort.  Four techs will make the patient worry.  Five or six or more will make everyone in the room worry.  The next step is a visit from EMS and/or the police department.  I have been witness to all of these levels, and have also occasioned all of them except for police participation.

As I watched, I thought to myself “I’m glad that isn’t me.”  I then immediately said a couple of prayers for the woman.  Fortunately, after a couple more minutes the gaggle dispersed and the patient went back to watching television.

Dave's Blue Jeans

My jeans:

-         fit perfectly when my wife purchased two pair for me in Amsterdam in 2002.

-         Were way too small when I tried them on in November 2005 in hopes of wearing them in NYC over the Thanksgiving holiday.

-         Were too heavy to wear in Summer 2008.

-         Were ridiculously large when I started wearing them to dialysis in 2010.

-         Fit perfectly today.

Through it all, my jeans haven’t changed much, but I have gone through at least three revisions.  And I currently wear them on all but the hottest days.

The $2.00 Samosa

Upon exiting the Metro today on my way to dialysis, I decided to walk through the local food court instead of bypassing it (no pun intended).  The very first shop features mostly Mediterranean fare, and the cheapest item on the menu was a $2.00 samosa.  Samosas are delicious little deep-fried pockets of veggie goodness.  Unfortunately this version, like most, contained peas and potatoes – two renal diet no-nos.  Today I decided that I was tired of walking by the stand empty-handed and that it was time to find out what a $2.00 samosa tasted like.  (I wasn’t going to eat it until I got home later in the day.)

The counter guy rang up $2.20, took my three dollars, put my samosa in one of those clear wax-paper pseudo-bag things, and started to make change.  I asked him if he had an actual bag to put the samosa in.  He said he didn’t have any small bags.  I explained that I didn’t want to eat it until I got home later in the day; he was still unwilling to assist.  I said “Okay, may I please have my money back?”  He briefly hesitated, and I thought to myself  “Oh boy, here comes one of those Curb Your Enthusiasm-type moments”.  I was not excited about it.  Fortunately, Mr. Counter Guy bought a vowel and handed me back my $3.00.

As I got the hell out of there, I thought to myself that a higher power, knowing what was good for me when I did not, intervened to make sure that I did not walk away with that samosa.  The kicker is that that afternoon I needed that $3.00 to pay for a special medicine delivery at the dialysis center.  I anticipated having to pay cash to the messenger, and brought along $4.00 for that purpose.  The delivery cost $2.79; I gave the messenger $3.00, and advised him to keep the change.

Thanks for looking out, Powers That Be!  You know who you are.

Quick Update

Two changes to my routine:

1) My dry weight has been increased yet again to 100 kilos (220 pounds).  Me big boy again!!  Knock wood, there's no end in sight for my weight gain.  As long as it isn't fat or water, I will go along happily.

2) I've changed shifts from 3rd to 2nd, which means that I show up for dialysis at around 11:30AM and am on the way home around 4PM or so.  Schedule-wise, the change is much more in my wheelhouse because I'm up at the crack of dawn most mornings.  The only downside so far is that I have to commute home during the rush, and that is no picnic.  I was quickly reminded of man's inhumanity to man on the Blue Line in particular, but during the entire trip home in general.  Noo Yawkers have nothing on Washingtonians when it comes to lack of common courtesy.

That's it!  Well, I could write more but I don't want to.  It involves blood, and the blood ain't mine.

A Dietary Winner: Authentic Texas Chili

My diet presents a daily challenge.  Due to my kidney failure, there are a host of food products that I cannot eat or have to watch my consumption of like a hawk.  Some that come readily to mind are junk food, dairy products, tomatoes, potatoes, cheese, and bacon.  Oh, and don’t forget chocolate!  This means that I can almost never eat on a whim, and that I have had to give up a slew of foods that I love.  These include pizza, french fries, meat sauce/marinara sauce, ice cream, M & M’s, and double cheeseburgers slathered in ketchup.  It’s a tough road to hoe, but I do the best that I can day after day.  Every once in a while I slip up, but the monthly report I receive from my nutritionist slaps me back into reality.

One of my big no-no foods is lasagna.  This presents a problem because I make a damn fine four-cheese sausage-and-chopped-meat two-pan lasagna, and I absolutely refuse to compromise on the ingredients.  For my money, there’s only one way to make lasagna:  the right way!  So I only make it about twice a year, doctor’s orders be damned, and I eat it like it’s my last meal.

Chili presents a different issue.  Chili is to me more of an everyday food, and I eat it a lot more often.  It’s comfort food goodness that is great over rice, hot dogs, or nachos, or all by itself.  Problem is, the way I make it contains tomatoes and beans – two foods that are explicitly forbidden from my diet.  And I have insane chili cravings every now and again.  Until recently, I dealt with this dilemma sort of like I dealt with the lasagna issue – by damning the food gods.  Bad idea.  I eat chili a lot more often than I eat lasagna, so “just doing it” is not a good solution.

I then remembered from a cooking show – most likely one of those excellent chili cooking contests – that “authentic” Texas chili does not contain beans.  Tomatoes?  I wasn’t so sure.  A quick bit of Internet research provided a most agreeable answer:  authentic Texas chili contains only beef, onions, chili peppers or chili powder, salt and a little animal fat (like lard or bacon grease).  Touchdown!  All the ingredients are part of my already-truncated food list.

Once I tried cooking authentic Texas chili, I was even happier, because it is one of the simplest recipes known to man.  Making a good burger from scratch is more difficult.  You simply render the fat, brown the beef, add the onions, add garlic (optional), and add chilies, chili powder or a combination thereof.  Simmer and stir on very low heat for two to eight hours (depending on how much time you have) while adding salt and pepper to taste, and you’re done!  You’ve brought an inexpensive, healthy, stick-to-your-ribs batch of chili into the world.  And any chili aficionado will tell you that this is only the tip of the iceberg.  Authentic Texas chili can be the starting point for a multitude of variations on the original recipe; the only limitations are common sense and, in my case, diet.  A cook can also take the opposite tack and work on refining the original recipe – a little more heat, a little less onion, a little more liquid, a different cut of beef -- until it comes out just as they like it.

I look forward to spending many hours refining my own authentic Texas chili recipe and sharing the results with friends and family – and my readers, too!

Bad Flashback

Bad Flashback

I’m sitting here in “the chair” closest to the dialysis center patient entrance/exit.  It’s 3:40PM; I’m almost a half-hour into the 4.25-hour session.  As James Brown (a former St. Albans resident, by the way) would say from time to time:  “I Feel Goooood!”  I’m accepting the changes that come my way, and sticking with the program when things get “slow.”  Just chatted with the medical staff who agree that all my numbers are looking good.  Dr. Patel even suggested that I contact the National Kidney Foundation about having them sponsor my athletic quests – if I’m serious, that is (and I am!).  I even applied for two more jobs - - this time, government admin (non-IT).  In short, all systems go.

Then I remember:  this is the chair/location I was in when I had The Nosebleed Session.

I had suffered from a lingering nosebleed all weekend long.  The problem wasn’t that it got worse; the problem was that it wouldn’t stop.  I’d gotten used to having nosebleeds from time to time because they would eventually stop.  Not this one.  It just kept leaking through the weekend.  When I looked at myself in the mirro on Monday morning, I knew that something was wrong.  My nose was mostly red and starting to swell a little.  My wife and I discussed whether I should just go straight to the hospital instead of going to dialysis that afternoon.

This is a tough story to write.  But it falls within my three rules, so I am going to try to finish it.

[Author’s note:  Odd coincidence:  the dialysis machine alarm, which indicates that a nurse/technician should check the machine “just in case”, did not go off once during this entire session.  This has only happened once or twice before in the 19 months I have been doing dialysis.]

[5/27/11:  I still don’t feel like finishing this.]

[6/2/11:  This subject is too depressing to write about.]

Quick Update

I have not posted anything on this blog in a while for a bunch of reasons:

1) Much of what I write on this blog is, for lack of a better word, depressing.  No one wants to read about sick people and their ongoing illness(es).  I know that I don't want to write about it.

2) I've concentrated my writing efforts on my "Dave's Odds and Ends" blog (http://www.oddsendsandriffs.blogspot.com/)

I'm posting an update now because over the past few months I have started to memorialize my thoughts in other areas, so I may as well do the same with ESRD.

This past week has been exciting in a bad way; lately my dialysis sessions have been about as exciting as an oil change.  Not this week!  On Monday my tech had a devil of a time getting a needle inserted properly, and my arm smarted for most of the session.  On Wednesday I asked to have too much fluid removed, and as a result started to cramp like a #@#$&$@# and asked to be taken off the machine a half-hour early.  That was followed by two early doctor's appointments the next day, so I was feeling a bit bedraggled by the time I got home yesterday.  I actually slept through my TNA Impact wrestling show, which is on from 9 to 11PM Eastern.  Today I feel fine, but on looking at myself in the mirror I discovered that I have a broken blood vessel in my left eye.  It's not so bad and hasn't gotten any worse since this morning; it's just an indicator of the rough week, I guess.  Today I'm supposed to see a movie with Hilva after my session; I'll call her in a couple of hours to see if she's still up for it.  I definitely am; I need a change of pace.  If not, no big deal.  I can spend the money on some fish.

I thnk that my dry weight needs to be bumped up yet again - from 95 kilos to 97.5 kilos.  Over the last three months my dry weight has been bumped from 84.5 to 90 to 92 to 95 kilos, and I fear that I am still growing.  I say "fear" because I would truly like to stay at my current weight (approximately 220 pounds).  I would rather remain wiry and fast than become big, bulky and slow.  I may have to modify my exercise or eating habits to slow down my growth.  We shall see; in the meantime, I realize that I am blessed to be in good health, and I'm not trying to fix anything that isn't broken.

That's it for now.

Not much else to say but --

OUCH!!!

(Bad needle day)

Day of Empowerment

What an interesting day!  Thursday is supposed to be one of my days off, as I am a Monday-Wednesday-Friday dialysis guy, but I went in today to have an extra session.  It seems that I have been gaining too much weight too quickly.  As it turns out, not only did I not need dialysis to remove extra liquid, but I had to drink three extra liters of liquid today to get my system right!  My weight gain is all muscle.

My stick got hard just typing that last sentence.

I spent the entire afternoon at the emergency room at George Washington University Hospital confirming the fact that there is nothing (else) wrong with me.  And yes, you better believe that I enjoyed every moment.  I’ve been to the hospital so many times in the last 18 months that I knew to stock up on food and water before checking myself in.  I got a foot-long from Subway and cookies, pretzels, Doritos, Wheat Thins, and a liter of water from CVS on the way in.  While waiting for this and that in my “private” room, I scarfed down half of the foot-long, ate a couple of cookies, drank all the water, ate all the Doritos, and drank 12 ounces of apple juice that the hospital provided.  And this was after devouring my usual dialysis lunch of cookies and a sandwich!  I might regret eating and drinking like a trencherman tomorrow … but it sure feels good right now!!!!

On the train ride home, I did my best to collect myself and let this all sink in.  I wanted to thank the Lord for taking such good care of me when I needed it most; as such, I asked the Lord to point me toward a prayer of thanks.  It came to me immediately.

Our Father

Who art in heaven

Hallowed be thy name

Thy kingdom come

Thy will be done

On earth, as it is in heaven

Give us this day our daily bread

And forgive us our trespasses

As we forgive those who trespass against us

And lead us not into temptation

But deliver us from evil

Amen.

And let me not forget to thank my beautiful wife Hilva for keeping me alive.  Thank you, my dear!  Thank you.

The Nutrition Adventure

Part of my dialysis treatment is having blood drawn once a month to test for pretty much everything under the sun.  Every time I start feeling cocky, my blood work comes back from the lab and slaps me back into reality.  Today is the day!  My weight is within the acceptable range; my blood pressure is OK; I feel stronger than I have in a while; and I even got a smile from the – well, why blow that?  So I fully expect my blood work to bring me down a peg or two.  The usual suspects are albumin (protein), phosphorus and potassium.

Here comes “Lou”, my nutritionist, with the results:

JJJJJJJJ

Happy happy!!!  FINALLY!!  YAY!!  I did good.  YAY!!!!  Good marks all around!

So now what?  Patience and moderation, my boy!  Cut back on the Chobani yogurt to once a week or so.  Eat more salmon and tuna. Yogurt notwithstanding, maintain dairy intake (sorry, no ice cream or pudding).  No corn chips.  Continue to eat lots of veggies (broccoli, asparagus, experiment with others).  No whole wheat.  No nuts.  No chocolate, That’s right, no chocolate.  And, of course, no potatoes or tomatoes.

I am looking forward to my birthday, when I can have two forbidden foods!  Right now, I am leaning toward chocolate fudge cake with dark chocolate icing and vanilla ice cream on the side.  We shall see – oh boy, we shall see!

And in the meantime, they don’t call me Cookie Monster for nuthin’….

Weird Stuff Part One: Veins and Fistulas

About six weeks after I started dialysis, my veins started “popping” or becoming visible just under my skin.  It started with my forearms.  One night I woke up to find my left arm asleep; when I looked at it, a vein was zigzagging its way from my wrist to the elbow and all the way back to the wrist (at least it looked that way).  This started a complete and total fascination with my blood vessels – veins in particular – that continues to this day.

Veins are actually very weak muscles that transport oxygen-depleted blood back to the heart.  They vary in size, thickness, length, angle of vector or curve, elasticity, and in far too many other ways to mention here – and that’s just taken from the few veins that are visible.  At a couple of places (wrist, crook of elbow, neck) you can actually see movement of the vein as blood is pumped .  My calves have really intricate vein layouts, and they look to be completely different on each leg.

When my fistula was built in my left arm, I was completely freaked out by the entire idea.  A fistula is the result of a grafting procedure in which a vein in the patient’s arm is grafted to an artery, increasing the blood flow in a specific area to make the dialysis procedure faster and more effective.  It’s quite visible on the arm, in my case as a intricate vein/artery structure on the upper inside of the lower arm and a huge artery/vein that runs along the top outside of my left bicep.  Fistulas look different on some people; some are relatively unobtrusive; some appear as odd bulges; some look really bad.  Dr. Nakki, the person who performed the surgery, says that this is mainly because people keep using the same spot on the arm vein to insert the two needles that are inserted at the beginning of each dialysis; this causes keloids, scarring and sometimes infection.  Knock wood, I think Dr. Nakki did an excellent job on my fistula.  It’s my understanding that a well-tended fistula can last for decades; here’s to mine doing just that. 

At first I was alternately fascinated and horrified by this half-natural, half-manmade grouping of veins and arteries.  The blood flow is extremely strong; it feels like one of those “joy buzzers” if you touch it in the right spot.  And just like the rest of the body, the fistula veins don’t all become visible at the same time; it’s a gradual process that takes month to complete as the fistula matures.  So every once in a while, I would look down on my arm and say “holy crap what is that?”  Now things have calmed down down there, and so have I.  I’m as used to this thing as I’m going to get, I guess.

Liquids are driving me to drink -- I wish!!

Many if not most kidney failure patients suffer from the loss of the ability to urinate.  In my case, the sensation is still there.   What little urination there is generally occurs when I poop.  Every once in a blue moon I pee a halfway decent stream and think that I am on the mend; I realize that, barring a miracle or a transplant, this is not the case.  (I'm not too keen on the idea of a transplant right now because there is always the chance that the transplant will fail, leaving me right back here.)

Anyhow, this leaves my body with the following methods of dealing with whatever liquid I drink:

• sweating it out (my workouts are just starting to make me sweat -- I look forward to running in warmer weather);
• pooping it out (a decidedly unsavory option);
• putting it in my tissue structure or my cardiovascular system (one is uncomfortable, the other is unhealthy); and
• removing excess liquid through dialysis.

The goal is to keep my weight as close as possible to my "dry weight" (what I weigh after a dialysis session - currently 90 kilos or 199 pounds).  To make things easier all the way around, my doctors recommend that I only drink a liter of liquid per day, and less in emergency situations -- for example, if I have to miss one or more dialysis sessions.  This is not easy.  Try limiting yourself to a liter of liquid today.  Suffice to say, it can be done, but it isn't any fun.  Ice cubes count; ice cream counts; the cream in your coffee counts (not to mention the coffee); fruit pops count; the water you may swallow in the shower or while brushing your teeth counts.  Even when I intially gave it a good effort, I was pounding two liters a day or more.  I tried to justify this with the "I'm a big guy" defense; I can still see my nutritionist Lou giving me that "fish-eye" look when I mentioned this.  Lou broke it down for me into terms that I can work with:

1.  I can drink a cup of liquid with every meal; this leaves me with one cup for the rest of the day.
2. The "rinse and spit" technique helps a lot.  Of course, this can't be done at the dinner table, but since I can sip and swallow during dinner it never comes to that.
3. Sucking on ice cubes (or drinking the melted liquid from them) is much better than drinking down a glass.

I also find that a piece of candy can help resist the urge, and that taking a tall glass with a cup of liquid and filling it with ice cubes makes it look like I'm getting more than just a measly cup of liquid.

Even after all this, sometimes the urge to drink a liquid -- any liquid -- will be there, just like I'm dealing with the occasional urge to smoke (two months smoke-free and counting, by the way).  This is where my long-lost buddy Will Power saves the day.  And when I am tempted to imbibe, I call on Will's friend Common Sense.  I'll have a shot or a small mixed drink every once in a while.  No beer, though -- I won't take that chance.

All right!  The clock just struck 12 noon.  Time for lunch -- today I'm going light.  Yogurt and toast I think.  I'll make up for it at dinner; tonight it's oxtails with onions and asparagus and zucchini on the side.  And maybe a few onion rings.

Hilva

This is the section about my wife, Hilva.

This is more than likely the only time that I will mention her by name in my writings, because that is the way she wants it, and I respect the hell out of that.  At the same time, writing about my experiences without mentioning her would be like baking a lasagna without using the kitchen:  it can’t be done.  She kept believing when I stopped; she kept pushing when I quit.  She kept that last little spark of hope inside of me from going out.  She is the one who signed most of the medical forms and releases, so her name is on all of the bills.  She is the one who had to clean up after me when I could not clean up after myself; she washed and cooked for me when I could not do so. Perhaps most important, she convinced me that it it okay to ask for help if help is needed, that you can’t do it all alone, and that you won’t get help if you don't ask for it.   I could never live long enough to repay these debts; all I can do is give my eternal thanks, and be the best husband I can be for the remainder of our time together.

Dialysis - Initial Challenges

When I left the hospital (for the first time) and started outpatient dialysis sessions, I felt weak and dizzy all of the time.  The dialysis procedure basically sucks seven to ten pounds of moisture out of the body.  While under "the spell", simple things like walking become difficult.  Washing clothes is an ordeal; cooking a simple meal is tortuous.  I pushed through this to the best of my ability because I wanted to be as little of a burden as possible to my wife  Unfortunately, I was not always successful, and still proved to be a big burden to her at times.  It pained me to see what she had to endure.

The logistics of getting to and from dialysis were burdensome as well.  My dialysis center is a block away from George Washington University Hospital where all my doctors are, but is miles away from home.  Since driving was not an option, I had to either take a cab (quite expensive) or use mass transit (not the easiest thing to do in my current condition).  Since my wife was at work, I had to fend for myself on a daily basis.

As a result of the above challenges, I did not make all of my dialysis sessions as I should.  Some days I couldn't afford the transportation; some days I was physically unable to make the trip; some days I just didn't feel like it.  In retrospect, I see that the only people who suffered from this were me and my wife, as insufficient dialysis simply lengthened the healing process.

One of the biggest hurdles to clear was getting used to the duration of each session -- in my case, four hours and fifteen minutes.  Sitting in "the chair" is the worst kind of slow torture; it's like standing in a jam-packed subway car with elbows, umbrellas and God knows what else poking into you.  For four hours.  At first, my only relief was sleep; then I enlisted my iPod to do some heavy lifting.  Food was and is a great relief and a flash point in relation to "the chair".  There are signs all over the place prohibiting eating, but the rule is flouted with regularity (just like the "no cellphone" rule, which is ridiculous).  Every once in a while, the staff (read certain staff members) would take great delight in enforcing the no-food rule.  It was done without fairness or equanimity, as I can attest.  I like to kick and scream and rail against authority in these situations, but prudence and logic dictated that I wait this situation out.  Sure enough, slowly but surely eating in the chair has become "accepted" by the staff.  Last holiday season, all dialysis patients were given one of those freezer-to-microwave-to-plate food containers -- complete with a knife, fork and spoon.  On the same day, they gave us Chinese food; I used the container to take my food home, ate the food, washed the container out, and put it away in the cupboard.  I haven't used it since -- but I can't wait for the next no-food crackdown!

OK, where was I -- oh yeah, the long dreary dialysis sessions.  It's not so bad now -- let's say it's tolerable.  The addition of individual TV sets has helped immensely, as has the relaxing of the house rules.  Most importantly, my body has healed to the point where I can sit and take those 4.25 hours of dialysis without being in too much discomfort.  The last hour is still the worst, though -- freaking interminable.  I remember my very first dialysis session in the center; somewhere in the third hour I swore that the clock actually did not move.  It was about 2:05pm; I went into one of my daydream sessions and came around thinking "Wow, that should have killed some time."  The clock read 2:07.  Well, yeah, it did kill some time....

The main thing I've learned from these challenges is that the moment you think you've mastered them all, another one pops up and pees in your Cheerios.  The thing to do is keep everything in perspective -- keep a 10,000-foot view, as it were -- and realize that, in time, all challenges shall be met.

Introduction

My kidneys failed (stage 5 renal failure) in October of 2009.  I went to the hospital because, frankly, my wife insisted that I do it.  I honestly thought that I was getting weaker because I had stopped working out, and ignored all the other things that were wrong with me (dizziness, shortness of breath, lack of balance, loss of appetite, etc.).

Anyway, my wife and I got into a cab and we went to the emergency room at George Washington University Hospital.  I figured that I would just be there for a few hours; I did not see home again for three weeks.

The toughest - but not most painful - part of my hospital stay was learning that I had ESRD or End Stage Renal Disease, which is the fifth and final stage of Chronic Kidney Disease (CKD).  The only options for me were:

• death; (um, no thank you)
• a kidney transplant; (odds of this are really low in light of the 90,000 or so individuals ahead of me on the recipient list)
• dialysis; or
• a miraculous recovery (not happening, but there's always hope)

In case you're interested, the most painful part of my hospital stay was having a catheter shoved all the way down my penis into my bladder for urine recovery.  They say that it hurts going in, and they are right!  For the record, they also say that it doesn't hurt when it's taken out, and that is a damn lie.  Irt hurts just as bad.

Dialysis is the procedure by which excess fluids and "poisons" are removed from the human body when the kidneys no longer function as they should.  There are different methods; the method I chose was three times a week (Monday-Wednesday-Friday) at four hours per session (actually, my sessions last 4.25 hours).

From the beginning I was very hard-headed about the whole procedure.  I fought the process and the staff every step of the way.  It took an entire year for me to get with the program.