Sunday, March 25, 2012

Weekend Fun

Quick update from my world:

First, I am fine and am feeling good. Second, my hospital has finally updated its telecommunications systems to allow for reliable and continuous internet access (though the TV lady going room to room)!

I've been in the hospital since Friday afternoon being treated for level 3 rejection.

About two weeks ago, some regular blood work I do to detect possible rejection (called allo mapping) showed that rejection was likely present. I had a biopsy on Thursday morning, which confirmed the highest grade of rejection - level 3.
Rejection is not uncommon and I've been very fortunate to avoid it for a long time, but at this level it requires inpatient treatment, which is why I'm here in my old stomping ground.

I was told I'd have three infusions of high dosage steroids Friday, Saturday and today (Sunday) to suppress my immune system and quickly stop it from rejecting my heart. I have tolerated the first two infusions very well, with leg pain being my worst complaint (a wonderful thing!). The third is coming soon and should be no different, so the the plan was to go home this evening.

At the same time, we have been adjusting my oral immunosuppression meds to make sure my body doesn't go back to rejecting the heart once the steroid treatment is complete. For some reason my body is reflecting even lower levels of these meds despite the higher dosages, which has allowed me to maintain my status as the most bizarre and perplexing patient ever.

I hope it's just a temporary fluke but I have to stay another night with higher dosages and see what my blood shows tomorrow. If my levels look right, I will be able to go home tomorrow. If not, the hunt for answers will continue.

The best news of all is that I have shown no signs of reduced heart function, so it doesn't appear the rejection has been present long enough to cause any damage. I'm optimistic that the treatment will be effective and will know for sure after I have another biopsy within the next week.

Saturday, March 17, 2012

Reason #73

Reason #73 to wear your Donate Life bracelet: you’re ready for St. Patrick’s Day 365 days a year! Piper and I ventured out to the dog park today, where a lot of people were rocking their green. Fortunately, our support for organ donation prevented us from being pinched. It didn’t prevent her from being molested by a big bully, but that’s a different story for a different day…
A lot of people are celebrating St. Patty’s Day today. I’m not (though I’m a bit envious of the green-beer drinking twenty-somethings), but I did find reason for celebration when I read the paper this morning. With an MBA, it seems, comes an implicit obligation to read the Wall Street Journal. I only partially fulfill my WSJ quota by receiving the Saturday paper…and I even read it most weeks.
Last week I was enraged to come across an article entitled “What You Lose When You Sign That Donor Card” featured prominently. The title alone alarmed me, but the content was truly outrageous. I was so disappointed that such a highly respected business periodical would publish such paranoid, biased and largely untrue words. The article was designed to feed the fears and uncertainties of organ donation critics, and I’m quite sure it was successful.
The reason for today’s celebration was discovering a letter to the editor today in response to the article. It was written by two physicians and the President and CEO of the New York Organ Donor Network. The words were carefully chosen and the message crystal clear: shame on you for publishing such misinformation. My only regret is that many more people read last week’s prominently placed piece than found this important response buried deep inside the paper.

We Must Encourage Organ Donors
“Dick Teresi’s ‘What You Lose When You Sign That Donor Card’ grossly misinforms the public about both the medical determination of brain death and the organ donation process in the U.S.
“First, there has never been a documented case of patient recovery after a properly performed determination of death by neurological criteria. Ever.
“Second, the diagnosis of brain death requires extensive neurological examination, irrespective of a patient’s organ donor status or the family’s support for donation. Electroencephalography is generally no longer used because it’s outmoded, not because physicians have something to hide. When donation is an option, the organ recovery agency must verify that all clinical testing has been done and all legal documentation is in the patient’s chart.
“Organ donation saves lives. Eighteen Americans will die today waiting for a life-saving organ. We hope that Mr. Teresi’s misinformed comments do not add to that number.”

Eighteen people. TODAY. Let’s see what we can do to address this solvable problem, not make it worse. Shame on you, Dick Teresi. And shame on you, WSJ.