Transplant Athlete

Thursday, July 03, 2008

P.S. My official diagnosis was Renal Failure and Congestive Heart Failure, but I'm better now.

I'm not the type of person who likes to waste my time
And when I'm on the mic I just say my rhymes
Because I'm out on bail the check is in the mail
They can sentence me to life but I won't go to jail
I'm cool calm collected from class I was ejected
Just me, Mike D., and M.C.A. we're rarely disrespected
I got all the time that I need to kill
What's the time? it's time to get ill
-Beastie Boys

Link ¶ 10:01 PM

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Echoes Of Wolf Creek Pass

I woke up yesterday morning (around 5:30am) and had a bit of difficulty breathing. It felt a little like climbing a high Colorado Pass or that time I had pneumonia. When my surgery was canceled last week, the nurse at my nephrologist's office told me that if anything changed to get myself to the Emergency room. Well, difficulty breathing was new and also accompanied by some tightness in my chest, so I panicked and hopped in my car and went to the ER at Reston Hospital. I drove about 6 blocks and felt like I was going to pass out. I dialed 911 (but didn't hit send) on my phone just in case and started thinking about where an ambulance could meet me.

I took a moment and said to myself, "I'm going to make it to the hospital." I took some deep belly breaths and calmed down as much as was possible. I made it to Dranesville Rd and knew that I wasn't far from 7100, which would take me right to the Hospital. I considered flagging down a police officer that blew by, but traffic wasn't really conducive to it. I ignored the no right on red sign and breezed on to 7100. I was pretty desperate at this point; since I didn't know what was wrong, I was afraid I'd pass out at any moment. I made it to the hospital, parked, and walked to the ER. I flagged someone down in the lobby and told him I was having trouble breathing and he called a nurse. She took me right back, drew blood, blood pressure, pulse ox and immediately put me on oxygen, then a nebulizer treatment. I'd been peeing every two hours all night long and was still peeing every two hours at the hospital. By the time they figured out that I had too much fluid on board, I had already gotten rid of a lot of it and was breathing better.

Dr. Chen was very concerned about my lab results and was thinking that I should start dialysis immediately. There was fluid in my lungs making it hard to breath and fluid around my heart. The fluid around my heart had strained it a bit, so a BNP test suggested that there had been some excessive stretching of the muscles.

Because of the issues with the Heart they moved me to the Progressive Care Unit (PCU). They slapped a wireless portable EKG on me to monitor my heart while I was there. It was really a plot to keep me on the floor. The wireless monitor had a limited range, so once I left the floor, my monitor would flatline; I was lojacked.

I met with a Nephrologist, Dr. Shumburu, and I agreed with everything he had to say. There was no reason to go on dialysis, there was still plenty of life left in the kidney. The extra fluid could be purged with diuretics. The alternative was to get a permacatheter surgically implanted in my chest and several hours of dialysis every day for three days straight. They'd release me from the hospital on Friday. No way was I going to go through that.

They ran tests all day, X-Rays, and echocardiograms, and blood work, oh boy did they draw blood. They drew so much blood, my hematocrit dropped from 19.6 to 15.6. After seeing that, Dr. Chen and another nephrologist were lobbying hard for me to get a transfusion, but the problem with a transfusion is it could make it hard to get a transplant later. The body builds up antibodies to this foreign blood and it makes it harder to match the mix of antibodies for the next transplant.

I made the mistake of calling my parents and letting them know I was in the hospital and they drove down from NJ. My wife came down from Frederick, MD with Baby TG.

I spent the night at the hospital because I had a renal ultrasound scheduled in the morning. I was supposed to be NPO ( Nil per os) nothing by mouth after midnight. I found out this morning my test was scheduled for 11am, that's kind of a long time for me to go without food, so I was getting a bit cranky. My nurse kept pushing me to have a transfusion, and I wasn't happy about it. No means No, dude. I think I may have even resorted to the old parent standby 'because I said so,' when he kept pestering me. I could feel the Prednisone pushing me hard to the Dark Side. When Justin showed up with a gurney to wheel me down to Radiology, I told them I was walking. There was no way I was getting on that stretcher. They started quoting rules, and Justin told me he'd get in trouble, but I didn't care. When I got down to Radiology, the head of the department came in to reiterate that the rules were there for their protection and I should take a wheelchair back to my room. I told him I'd consider it, which I did, the whole time I was on the table. I came to the conclusion that the health benefits of me walking outweighed the legal risk to the hospital. When I got back to my room, my nurse, Alex, was updating my parents on my condition. I wasn't happy with him for pushing the transfusion and I was afraid, he'd start in on my parents about the transfusion, so I asked him if he had written permission to disclose my medical records to my parents. He looked at me with that "but they're your parents" look and I looked back at him like a pissed off 36 year old who makes his own medical decisions.

He obviously didn't have written permission to disclose my records, so he shut up. I figure if he was so concerned about me following the Hospital's rules about walking off the floor, he'd be concerned about the Federal Government's rules about privacy. I just checked the Hospital's privacy statement and if he believed they were involved in my care, then he can disclose the information to them, but if I ask him to stop sharing the information and he agrees to comply, then he must stop. By this time, it was apparent to me what the medical issue was, excess fluid, and it had been solved. The hospital staff however were concerned about solving my kidney problem and all of the associated side effects, which I didn't need, and they wouldn't be able to do anyway. I've been living with this disease for a long time now, I had a treatment plan worked out with my doctors, I didn't want to change that plan after meeting with an Internal Medicine specialist or a hospital nephrologist who knew nothing about me and my long term care for all of 5 minutes.

Another issue, was that they were giving me drugs willynilly to combat the problems as they saw them. Like all the blood draws that dropped my hematocrit to dangerous levels, these drugs have side effects and the side effects could make my bloodwork look abnormal, necessitating more drugs to combat side effects...you get the picture.

I was getting antsy to leave, I knew I was healthy enough to leave, I was worried they'd draw more blood and drop my hematocrit further (requiring me to get a transfusion), and I didn't think they could do any more for me at that point. They were sniffing around my white blood cell count, which had increased, indicating I may have an infection (tell me something I don't know) and I was afraid, they were going to run more tests to track the infection down.

When they finally let me go, I blew out of there pretty fast.

¶ 7:55 PM

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Monday, June 30, 2008

The Rock Cried Out I Can't Hide You

Wow. I'm shocked. What would be an appropriate title for this post? My first thought was some reference to "American Pie", maybe "The Jester stole his thorny crown", but nothing really appealed to me. I then thought something Depeche, but nothing seemed depressing enough (imagine that) as well as appropriate. Nina Simone's "Sinnerman", seems a bit more apropo, "Sinnerman where you gonna run to?"

I honestly believed Landis was going to squeak by the Appeals Board. Sports Illustrated has just released the news. Guilty

Did he dope or didn't he? According to the evidence I've seen, I don't think the Lab work was accurate enough to decide whether he was guilty or not; but according to the arbitrators, he's guilty of doping regardless of how sloppy the lab work was. Hopefully, the lab will get its act together for future cases.

Hopefully, Landis will take his suspension, and come back to the sport and prove that he can win. Clean.

Link ¶ 10:23 AM

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Wednesday, June 25, 2008

I'll Bloody Well Walk Out Of Here

I very nearly spent the night at the hospital and didn't get the surgery. I had blood drawn first and then went back to model the latest in hospital attire. The nurses were all expressing concern for my well being, above and beyond what I would normally expect. As I was getting an IV put in, the anesthesiologist explained why...My hematocrit is 16. No, there must be a

OUCH

Are you using a larger needle than normal for that IV?

Yes...In case we need to give you a transfusion.

Basically, they wanted to admit me to get my blood work back to some semblance of normal. I didn't want to stay at that hospital, it's an hour away from my house. The anesthesiologist said he'd get me an ambulance to transport me to another hospital. I had my HIGHLANDER moment...I walked in, I'll walk out.

In the end, they discharged me with instructions to take 2 doses of Procrit today, then follow up with Aranesp next week and for the next couple of weeks. After 4 weeks of blood boosters, I should be able to have the surgery.

¶ 4:57 PM

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Tuesday, June 24, 2008

AV Fistula

Surgery tomorrow 2pm. The surgeon will create access for dialysis. He's going to connect an artery in my arm to a vein. Over time, the vein will increase in diameter and when mature will provide access for dialysis. I'll post pictures.

¶ 10:06 PM

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Monday, June 23, 2008

Team Type 1

I had the opportunity to talk with two members of Team Type 1 after my rider DNFed. This is for Maggie and John.

Labels: diabetes, RAAM, Race Across America, team type 1, type 1

Link ¶ 7:33 AM

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Saturday, June 21, 2008

Deanna Adams RAW

This is video I shot in Blythe, California of Deanna Adams. She described herself in a forum post (link) as a 19 year old vegan suffering from Epilepsy. She showed amazing spirit every time I saw her during the race. Late in her race, when my rider was grumpy and saying he didn't need any crew, he could make it across the country without us, Deanna pulled into the time station and danced a happy little jig. I would definitely crew for her if she needed it in the future.

Labels: Deanna Adams, Epilepsy, RAAM, Race Across America, Race Across The West, RAW

Link ¶ 11:52 AM

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