Livin' la vida loca

It's been crazy! A good crazy. Here is an update...

For the record - Greg (my brother in-law) and Emily (one of my BF's) received their Snickers bar as a prize for guessing the July 1st transplant date.

Cooking - I've been working through my Make Ahead cookbook (steering clear of the dessert section!) and will post my recipes soon.

A special email - Ina Garten emailed me. Yup. My initial reaction was total panic. I thought I was going to get in trouble for posting recipes on the blog but it was just an incredibly nice message. Ina's message said that she learned that I was blogging about Make Ahead (my friend contacted her - how nice?!) and how I've been through a challenging time. She wished me luck with my blog. The email came from a simple email address that I couldn't find anywhere on her site and there wasn't any fancy signature line - just xxx Ina. I think it's legit. Even if it was her team that wrote it I'm going to believe it was her. Like the time my parents went to a Boston Celtics game when I was a child and they brought my pendant for the players to sign. I was ecstatic when they returned with autographs of my favorite players. I almost died of happiness. Years later I learned it was really my Dad's John Hancock...but I wouldn't have changed a thing.

Lady heart friends- I've been able to connect with a few ladies in their 30's who have had a very different and much harder journey than I, but are still waiting on a heart. One is seen at Tufts and the other at Brigham & Women's. I mentioned a while back that it's tough to find young females going through this and it has been really nice to finally connect with someone who understands what you are going through. We may try to establish a support group so other young patients can feel connected.

Recovery - So a cracked sternum takes forever to heal! I'm not really in pain but still can't sleep well and on busy days my back and chest get achy. I get headaches and sometimes migraines at night and my shaky hands haven't really calmed down all that much. It's all minor and I'm trying to patiently wait until at least the 6 month mark when some meds are taken off my list. Hopefully it gets better.

I was at the hospital yesterday for my biopsy. My first few biopsy results were a 1A and my last two resulted in zero rejection. Yay!

Nursing the nurses - The staff who took care of me on Pratt 8 are amazing. Amazing. The level of care they took and the knowledge they have is remarkable. They all had such positive attitudes that allowed me to stay relatively sane while my mobility and quality of life was impaired. I'm sure they would have loved a tray of cookies or flowers but I wanted to say thank you in a way that showed how much I really did appreciate them. Since I basically lived with them knew their day to day. They move. A lot. Whether it's bending to get a blood pressure reading, pushing an entire bed or lifting a patient they've gotta be in pain at the end of a twelve hour shift.

So I thought I'd make them a hot/cold pack!

I'm terrible at arts and crafts so I asked my talented and very patient aunt to help create the little bundles. I tried to select patterns for nurses that I knew better to personalize them as much as I could. We worked pretty hard on these for a few weeks and I'm so happy with them. I was also excited to use my wheelchair for something other than me - to tote these heavy corn bags! I had to buy two 50 pound bags of feed corn.

I got a call yesterday about my biopsy results and the nurse told me she had already used it. She said it smelled great (we put lavender in the mix) and she fell asleep with it on. Mission accomplished!!!

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!