Monthly Archives: May 2014

May 27 – The Start of Summer, & Waiting


We’ve been getting  a lot of questions that make us realize that the average person doesn’t realize just how scarce organs are. But scarcity is why people wait so long, and generally have to be far sicker than they need to be before surgery. Last year, donations of all organs were, unfortunately, down in the United States.

I’ve been an organ donor since the day I received my first driver’s license at age 16. Donation has always made complete sense to me, and now that we are on the needing end, I can’t imagine the trauma of knowing that there would be no hope if transplantation was not an option, if organ donation did not exist.

Many years ago, we lost Nick’s brother Willie to a brain aneurysm. A young man that stood tall and seemingly healthy was with us one morning, gone by evening.  Willie had a one-year old daughter. His wife was pregnant with their son. The only positive thing that came out of that awful tragedy was that seven people were saved and helped via the gift of life from Willie.

From the Mayo Clinic, here is some comforting talk about the myths of organ donation:

You have to make a bit of an effort to be a donor, but only a bit. Here’s how:

❤ First, sign up with your state’s donor registry:

❤ Designate your decision on your driver’s license.

❤ Tell your family about your decision. It’s important that they know your wishes.

❤ Tell your physician and friends.

❤ Include donation in your will, etc.

The first step is vital, and you can do it right now.




MAY 11– Mother’s Day Answers

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Hi everyone. Here are some answers to questions we’ve been getting:

Caitlin’s “number” is not a number on a list, in a line where you wait your turn. It’s a score, and the higher the score, the more sick and in need you are. Generally, everyone on the transplant list is somewhere between 30 and 70, though technically the score range is 1-100 . Everyone in Pittsburgh seemed to think she would be in the 30s, and the fact that her score, set by the national organ bank, is 44 is good, since a higher score means you are a higher priority.

Two other major factors determine who gets called: blood type and size. For example, there may be someone on the list who is the same blood type and size as Caitlin, but he or she could have a score of 60, and s/he would get called first.  There could be someone very sick with a score of 80, but with a rare blood type, who could end up waiting longer than someone who is a 40 with a more common blood type.

One of Caitlin’s biggest obstacles to getting lungs is her small size. However, you just never know. She has a common blood type and has virtually no antibodies (which can make matching difficult), so those are good things. There is definitively no way of knowing how long the wait will be.

It’s an unsettling feeling, though, to know that we have to be ready to GO–at any time. The call could come in the next five minutes, or it might not come for months and months. We’ve got little bags packed, and plans in place, but when she does get the call, we have to be ready to immediately contact the list of medical transport services to see who can get us to Pittsburgh within the required four hour time frame. We are fortunate to be heading into the summer months, when snowstorms aren’t an issue.

And we are fortunate–and very grateful– that this is even an option. Every Mother’s Day has been poignant for me, since her diagnosis at age two, and this one, especially so. I am very grateful to be this wonderful young woman’s mother.