Sunday, June 20, 2010

I've Come A Long Way, Baby...

As much as I don't feel great right now, I'm doing a heck of a lot better than I was in October. I rediscovered a couple of pictures my dad took on my cell phone when I was still in the CCU and thought I'd share them, along with a much more recent picture from a few weeks ago. I still don't feel or look great, but the pictures illustrate the vast improvement I've made.

I was lucky enough to have my dad here again this weekend. He is a good sport and flies back and forth as often as he can to be with his two girls. We enjoyed having him and we look forward to his next visit. The next visit is scheduled for July 10, but we hope have a reason to see him sooner... Happy Father's Day, Dad!

Friday, June 18, 2010

Ready, Set...Not Yet

Well, you have probably gathered by now that my premonition did not come true. I really thought and hoped my birthday would bring a healthy new heart, but it looks like I’ll have to wait a little longer. So that confirms that I do not have psychic powers – damn. If you are wondering if you need psychic powers to know when I do get a heart, the answer is no. Many of you are on an e-mail distribution list, and my good friend Marguerite is going to post something here on my blog when the time comes. We’ll see if her grammar and wit hold up under pressure.

Every day of this wait for my new heart makes me more passionate about organ donation. Only 37% of the US population is registered to donate organs. Why isn’t it 100%, or at least 50%? Thousands of people die every day in this country. Most are not eligible to donate organs anyway, but many are. 18 people die every day waiting for an organ transplant. This is a solvable problem. We all wish there were cures for cancer and AIDS and MS and diabetes. Unfortunately, there aren’t yet. But there IS a cure for the shortage of organs – more donors. Please encourage your friends and family to consider organ donation. has answers to any questions you may have about organ donation.

As of June 11, there are 32 people waiting for heart transplants in New Jersey. Ten of these (myself included) are my blood type and my status or above. Maybe I’m next.

I wonder why they call sick people “patients”. This patient ain’t patient.

Sunday, June 13, 2010

Pity...Party of One?

The metaphorical restaurant hostess is constantly calling out to me in my mind, inviting me to be seated. I resist most of the time, but sometimes it’s easier just to raise my hand and say – yep, that’s me: the Pity party.

I know I’m lucky to be alive. I know I’m fortunate to be awaiting a heart outside of the hospital. I appreciate that I can work and socialize and maintain a relatively normal life during this ordeal. But sometimes looking on the bright side just requires too much effort. Sometimes I just want to feel sorry for myself. Sometimes I just need to throw myself a pity party.

I’m tired. I’m tired of carrying around a pump for my 24-hour IV meds. I’m tired of waking up early every morning to change them. I’m tired of feeling like I need to wear long sleeves to cover the site. I’m sick of hurrying through my showers so I can reconnect myself to my medicine source. I’m tired of twisting myself up in my tubing while I sleep.

Aside from the IV, I’m just tired of being tired. On the weekends, I sleep about fifteen out of every twenty-four hours. During the week, I’m awake for about two hours each day when I’m not working or commuting. I’m sick of dreading social gatherings because of how exhausting they are. I’m tired of taking the elevator to my second floor office.

Even as I write this, I know it could be so much worse. A friend and coworker lost her battle with breast cancer about a year ago at age 32. Soldiers are injured and killed in Iraq and Afghanistan every day. Plenty of other heart patients are hospitalized or stuck with ventricular assist devices, which are far more cumbersome than my IV pump and defibrillator. Most of the time, I can maintain this perspective and be grateful that I’m alive. But occasionally, I allow myself a brief pity party.