The donor

A few people have asked if I know who the donor of my heart is. I know very little. I was told the heart was local (so I'm guessing it was harvested in Boston) and the donor was very young. Due to privacy laws the information shared between a donor and recipient is limited.

The New England Organ Bank encourages recipients to write a thank you note to the donor family. I'd like to give the family time to grieve before sending a letter, so I'm going to wait until after the holidays and send it at the start of the new year. NEOB facilitates the written correspondence between the donor family and myself and all communication is kept completely anonymous. They will review my letter, black out any information deemed as a breach of confidentiality and forward it on to the donor family.

Here is what they suggest to include in the letter:

• About myself - My job/occupation, family, hobbies and interests
• About my transplant experience - My condition that let to transplant, how it has improved/changed my life and the role the donor family has played in making this happen
• What has happened since transplant - Activities I can now participate in since transplant, celebration of a birthday or anniversary, marriage or birth in the family, return to school, pursuit of a new venture or any any other future plans. No pressure here.

It is unknown if I'll get a response. I'm disappointed at how impersonal the exchange has to be but apparently if there is significant communication between both parties it sounds like they loosen up and will allow a face to face meeting.

I've gotten to know a few other females that are about my age that are listed for transplant and waiting for a heart. The New England Region and especially Boston is well known for it's medical care so the transplant list is very long in this area. It seems like you have to be a 1A status to even have a shot. When I was at UC Hospital in Denver they said that with my blood type and size that I would be transplanted as a status 2 in their area. It would be very unlikely for me to be transplanted at a 2 status in Boston. Some patients in Massachusetts will relocate to another part of the country to get transplanted faster or some are able to get listed in another area (patients can be on multiple lists) in order to get a heart sooner.

Every 10 minutes someone is added to the waiting list and 22 people die each day waiting for transplant. This year 122,364 are listed on the waiting list, 12,340 transplants have taken place and there have been 5,976 donors so far. It's crazy how many people are in need and the limited amount of donors available. Recently there was a great story told on Radiolab called Gray's Donation that tells a story about a mother who had donated her son's body. A few years after his death she followed up to learn how the body was used. If you have 25 minutes to listen in the car, while making dinner or getting ready for work it's an amazing story. Tissues recommended.

When my immune system is up and I'm able to be around more people and places I plan on getting more involved with NEOB. Hopefully I can encourage more people to get listed as a donor so that others will have the good fortune that I have. On the sidebar to the right I've added the Donate Life widget where you can easily register or learn more about ways to help. My donor saved my life and has allowed me to do things that I was too sick to do - like hiking.

At the beginning of my hospitalization I blogged that I would go hiking with Christian once I had a new heart and could physically do it. We went to Bar Harbor over the weekend and ventured into Acadia National Park to hike. I'd actually categorize it as more of a nature walk based on the intensity...but it is a start!