Category: Healthcare Insights

I created this blog exactly one year ago this afternoon, which I realized when WordPress sent me a renewal bill. We were in Pittsburgh to complete the transplant evaluation. Caitlin had been sick all winter. Everything had changed, and we were preparing ourselves for even more change. I never would have really thought that a year later, we would still be waiting. But that is the reality of organ transplantation.

We like to keep the blog upbeat, so I don’t go into any real detail about what Caitlin goes through. In my last post, I referred to a difficult two-week stretch as some “not-great days.” Caitlin intensely dislikes drama of any kind, and does not like to call attention to her problems. But as we mark a year of this surreal time that is waiting for organ transplant, I’d like to toast my noble little bird.

She has been remarkably stoic her entire life. And I’ve been full of admiration, this past year, to see just how well she has coped with the kinds of issues we hope never to watch our children deal with.

I saw this quote by Maya Angelou the other day; it resonated with me:

Having courage does not mean that we are unafraid.

Here’s to Caitlin.

–Maryanne

 

Today marks one month since we arrived in Pittsburgh! It feels like we’ve been here a long time, but the days go by very quickly, too. Christmas was festive and pretty in the city, and we were so grateful to receive fun packages and cards and notes from our friends and family, and a wonderful New Year’s visit from my sister and her family.

Caitlin saw her pulmonologist yesterday. As far as her wait goes….her score is pretty high for her blood type and chest size, or so it seemed when he looked at the list. Of course, that still doesn’t mean that a donor will come any time soon, or that another person her size and blood type won’t get on the list and be ahead of her. It fluctuates day to day. But it’s pretty positive.

A friend’s nephew out in CA was transplanted in December (after waiting 2 years!) and is doing really well.

I also had the pleasure, the other day, of meeting with a friend I made when I was here last year. Her husband was transplanted last January and he just celebrated his first year! They are a lovely young couple who have been through so much, and I hope that 2015 treats them very well.

It’s been frigid here, so I haven’t been out taking photos the way I’d hoped to. Still, I strung together some silly iPhone moments from the past month and made the montage, above.

Having Henry around is great. He makes us laugh every single day. He will be 11 in two weeks and we still MARVEL at how puppin’ CUTE he is. His presence inspires us to compose wonderful songs.

“You, me, and Henry, and Andy, and Nicky…. Down by the River Allegheny… Allegheny…”

—Maryanne

​
The question we are hearing lately is, “Any news?” The answer is “No.” There’s no updating or anything that happens. You basically just wait for the phone call.

August 24 marked four months on the transplant list​. We are grateful that we were able to spend the summer here in Boston! We always tell ourselves that our situation could be a lot worse.

This month, we have to travel to Pittsburgh for Caitlin’s six-month checkup. Since she cannot fly commercially anymore, we have to make a road trip out of it. While we are there, we will look for a place to live, as we will have to relocate there once the bad weather comes.

Since we had to stay within that four-hour window to get to Pittsburgh, we were unable to go to any of our usual summer spots (We hope to see you next year Maine, Vineyard, Ireland). We did spend a weekend “on the water,” at an inn at the yacht haven on Boston Harbor. The weather was spectacular and our room had a spacious, comfortable deck. Look at the name of the boat that was tied up just outside!

–Maryanne