ASN and AAKP: Forging Relationships on Capitol Hill

ASN and AAKP: Forging Relationships on Capitol Hill

Just the Stats, Man!

This is a quiz question from my Introduction to Statistics class:

“You and your roommate are arguing about whose turn it is to clean the apartment. Your roommate suggests that you settle this by tossing a coin and takes one out of a locked box he has on the shelf. Suspecting that the coin might not be fair, you decide to test it first. You toss the coin 80 times, thinking to yourself that if, indeed, the coin is fair, you should get around 40 heads. Instead you get 48 heads. You are puzzled. You are not sure whether getting 48 heads out of 80 is enough evidence to conclude that the coin is unbalanced, or whether this a result that could have happened just by chance when the coin is fair.

Statistics can help you answer this question.”

I have a few questions of my own:

• Why would I flip a coin 80 times?
• Why would I ever agree to live with a lazy, paranoid slob?
• And how many people have gone insane trying to answer questions like this one?

First Day of Summer School - and - Two Surprises

A few months ago, I started taking online courses at UMUC (University of Maryland University College) to earn a degree in Healthcare Systems Management. Today marks the beginning of the summer term, and I’m taking two classes: Introduction to Research and Introduction to Statistics. I kicked butt last term (4.0 GPA), so I shouldn’t be anxious.

I’m anxious anyway!

I just spent three hours getting in the term’s first round of study. Instead of reaching for one of my headphone sets to listen to music in the bedroom like I usually do, I went into the living room to study, and used my iPod as a music source instead of my phone. Not only was studying very productive, but I also had two pleasant surprises:

1. I played my iPod’s music through our stereo, and quickly realized that I forgot what it feels like to FEEL BASS. You feel it all over your body. It is a very good feeling.
2. My iPod’s song list (over 2,000 titles) hasn’t been updated in many months because my phone is my main music source. I shuffled the playlist and listened to rock, hip-hop, R&B, classical, jazz, reggae, and Latin tunes that I haven’t heard in a long time. Earth, Wind and Fire, Tito Puente, Rush, Mozart, Black Star, The Police, Kool and The Gang, Jay-Z, Beenie Man, Monica, The Roots, David Bowie, Prince, Red Hot Chili Peppers, you name it, you get the idea.

That’s it….The sun is out today, too! It’s time to run an errand or three!

Reducing Catheter Use in Dialysis Patients: Appearance on Lifetime TV's "Balancing Act"

The Balancing Act, March 10, 2016

Getting On: Dialysis on HBO

One of my favorite shows is HBO’s “Getting On”, a passive-aggressive comedy about life in the women’s long-term care unit of a California hospital. The cast includes comedy veterans Laurie Metcalf (“Roseanne”, “Desperate Housewives”, and “The Big Bang Theory”), Alex Borstein (“Mad TV”, “Family Guy”), and Niecy Nash (“Reno 911”). The show gets good reviews, so I was surprised and disappointed when I learned that the show’s third season would be its last. My disappointment turned into excitement when Season Three’s first episode revealed that Dawn Fourchette’s (Ms. Borstein’s character) kidneys were only functioning at 10 percent, which meant that she needed to start dialysis immediately - just like I did.

“Excitement” is a weird word to use because I wouldn’t wish kidney failure on my worst enemy. But if dialysis and kidney disease get more exposure because of this and other shows, they will get discussed more by everyone, and that gets me excited.

Season Three’s second episode shows Dawn getting dialysis at work; I thought “Wow, they’re showing a real dialysis machine on TV!” Seeing it also brought my dialysis days right back to me for a moment - and that did not feel good.

I’m looking forward to watching the series’ final four episodes to see how dialysis changes Dawn’s life, and how accurately the experience of being a hemodialysis patient is portrayed.

Post-Transplant Notes

[I wrote the following about a week after my kidney transplant. At the time, Hercules had not started working yet.]

Post-Kidney Transplant Thoughts:

Now I can turn off my phone at night.

I smelled a little pee pee on myself yesterday, and I almost didn't mind.

I look forward to paying it forward.

I should be asleep right now, but I am back in full Dave mode. The new one, not the old one. I'm going to try to get some sleep anyway....

No more post-dialysis naps. That's ten hours back every week.

If this all goes to shit, I did the best I could every step of the way. And I found love and support when I needed it.

The rest of me works just fine!

It's easy to say that it will all have been worth it when I'm peeing again. But what if something goes wrong and I end up with a third nonfunctional kidney? Will it have been worth it then?

I've gained about 30 pounds in seven days because of the water weight gain and weight gain induced by steroids. The swelling has moved from my hands to my ankles, feet, scrotum, thighs, and face. I'm not totally freaked out because I went through something similar when my kidneys failed. I'm in much better physical condition now, and I look forward to regaining my original physique and then some.

I have grown tighter with the Renal community.

I now know who my true friends are.

Life doesn't give two craps about my new kidney and the challenges that it brings to my life. Life just keeps on as if nothing has changed. This means no rest, no breaks, no slips, no time for sleeping.

Rejection, but not dejection

Tuesday, 10.6.15, around 11am: About 30 minutes ago, my transplant doctor told me that Hercules, my transplanted kidney, was showing signs of rejection, and that there was nothing to be alarmed about, but I would have to check back into the hospital for treatment. I've done enough research to know that this is common and is fixable, and I'm glad that it was detected early, thanks to my 90-day protocol biopsy.

OK. Now that that's out of the way --

My first reaction wasn't devastation, it was "oh crap" - more bad news, here we go. Losing Hercules would be a big disappointment, but I would get over it in time, and pass on what I've learned to people who could benefit from it. My mom would be upset, and so would my wife. But one of the things I've learned since the transplant is that life couldn't give a rat's ass about my kidney; bills still have to be paid, the trash still has to be taken out, people still have to eat, and the seasons still change.

My next thought was that I am really tired of being in the hospital. I thought about it a little more, and what I'm really tired of are the constant disruptions to my life and plans. Since I got the call that a kidney might be available for me, it's been one thing after another - some related to my transplant adventure, and some not.

I'm writing this while riding the bus home from weekly clinic, and am now distracted by the scenery, thank goodness. I'll be back to finish this - or maybe not! I feel better already.

One more thing: I know that this is happening so I can help others.

Same day, early evening: I'm headed back downtown via the Metro. I'm about to check into GWU Hospital for the second time in seven days.

822pm: I'm all checked in and as comfy as one can be in this situation. You know you're a hospital veteran when checking in is smoother than checking into a hotel. Comfortable clothing is a must, and long sleeves are good because the rooms get cold. The only clothes I needed to bring are the warmups I'm wearing, a wool cap, and a few pair of underwear. I didn't even have to answer any insurance questions!

You're also a hospital veteran when most of the staff's faces are familiar, and you know many of their names. It's comforting to see the same faces for a lot of reasons; one important reason is that it is a sign of low turnover.

Wednesday, 10.7.15, 559am: I walked a few laps around the hospital floor this morning. (You wake up very early in the hospital, whether you want to or not.) If you are ever hospitalized and are able to do this, I recommend it. Walking around will keep you from getting stiff. And, if you’re like me, you’ll get to observe a lot of stuff.

After my walk, I was informed that I'll be here at least until Friday. I have to take three intravenous steroid infusions - one each night - and then see where things stand on Friday. My numbers look good, but since there is evidence of rejection, we're taking no chances. I'm glad that this was caught early!

Medical Terms

PCA - patient controlled analgesia. Push a button, get a shot of painkillers instantly through your IV. I don't have this because I'm not in any pain, but I remember using it a few times after my transplant. Dosages are very carefully controlled.

Incentive Spirometer - I have one at home. It helps a person build their lung capacity. Here’s what one looks like:

I was given this one when I checked into this hospital in late June for my transplant. Back then, I could fill my lungs with 3.5 liters (3500ml) of air with no problem, and occasionally reached the device’s limit of four liters (4000ml). Immediately after my transplant, I couldn’t reach the 2000ml mark, and today am only back up to 2500ml. Fortunately, my transplant doctor cleared me to resume cardiovascular exercise two weeks ago!

530pm: A couple of hours ago, a nurse lent me The History of Love, a New York Times bestseller, to read. I'm enjoying looking up the German words that come up every page or so; it refreshes the little German I still remember from the Army and Yale. This will be the second hardcover book I've read in a month. Almost all of the books I've bought or read in the last five years have been e-books.

I just looked up a German phrase on my phone, and tried to switch back to the book. After about five seconds or so of bewilderment, I realized that the story I was reading was sitting on a chair about two feet away from me, not on my phone. That was a nice reality check.

Today has been a good day.

Thursday, 10.8.15, 11am: Walking more laps. Just passed a gentleman patient who was wearing a yellow hospital gown instead of the normal blue gown; since he was accompanied by a mobility specialist, my guess is that the color indicates a fall risk. There is a huge emphasis on no falls and no pain for patients.

4pm: There are certain hospital sounds that you don't hear anywhere else. I spent the last four or five minutes listening to one. It's the alarm that sounds on an intravenous setup when something is wrong with it.  Beep beep, Beep beep, Beep beep, Beep beep, Beep beep, Beep beep, Beep beep, Beep beep, Beep beep, Beep beep, you get the idea. Same tempo as a truck backing up, with a higher pitch. Trucks, however, usually don't back up for fifteen minutes. This damn alarm will beep until the Second Coming unless someone comes and turns it off.

Every evening, I get hooked up to a similar machine for an hour or so to get my steroids. Last night, my setup alarmed, so I called the nurse to turn off the alarm. When she did so, I watched her so I would know how to do it in an emergency. So, after listening to the same alarm in a nearby room for almost five minutes, it occurred to me that I could walk over there and turn off the alarm. I decided not to do it because I knew that it was not the right thing to do. A couple of minutes later, a nurse came by and cleared the alarm. I did the right thing, but for the wrong reason. I might have put someone's life in jeopardy if I went over there. I should have alerted a nurse immediately.

422pm: I was going to write about watching the lady in the neighboring room take her final walk out of here (she arrived two days ago, and was barely walking yesterday - modern medicine works wonders), but I was distracted by the second most irritating sound in this hospital - it just went off again - those GD cellphones! Every staffer on the floor has one. Each phone has three different ringtones to choose from (a hospital technician told me this months ago), but only one or two people on the entire floor have changed the ringtone from the default, which sounds like a five-year-old beating on a xylophone over and over again exactly the same way each time. Different phones are issued every shift, so it's easier for everyone to just leave their phone as is. I asked a nurse if she hears that sound in her head at home. She told me that she had to ask her sister to change her ringtone at home because it sounded exactly the same.

531pm: The same IV alarm goes off again. This time I don't even think about getting up to turn it off, mainly because I'm too tired to care. (I'll tell you why I'm so tired shortly.) At 533pm someone's phone also started ringing outside my room, and I laughed it off. Someone turned off the alarm at 536pm.

I’m tired because this was Crazy Steroid Day. Yesterday, I felt my heart beating a little harder than usual sometimes, but nothing else. Today, the full effect of the ‘roids kicked in right after breakfast. The best way to describe it is a productive buzz. I did a scary amount of work online the rest of the morning and early afternoon, and after lunch did a light workout in my room (including squats) and then walked a bunch of laps. I’ve done lots of walking since the transplant, but I haven’t done squats in over three months, so my legs felt the burn for hours afterward. Thankfully, the ‘roid effect started wearing off while I was writing these notes. The experience would have been a lot scarier if one of the nurses hadn’t told me what to expect. Since I realized what was going on, I was able to make the most of it and didn’t freak out.

A quick word about the staff here - they are great! Everyone is friendly and helpful. The unit manager and clinical supervisor both came over to introduce themselves and make sure I was doing well. Special treatment? Whatever, I’ll take it!

Friday, 10.9.15, 842am: I feel great right now. I just finished breakfast and the second chapter of The History Of Love. After the morning vitals check and blood draw, I stretched, walked ten laps, and did twelve more squats - the best all-around workout I’ve had since my transplant. (I have moved a boatload of furniture around at home these last few weeks; those were good workouts, but only one of them came anywhere near being fun.) All signs point to my going home later today. Until then, my time is unstructured.

Right now, I just want to enjoy the moment and be grateful for everything!

1110am: I said my goodbyes and walked out of the hospital under my own power and in no pain.

Saturday, 10.10.15, 754pm: I am enjoying every moment of being home.