I am on R and R from my role as caretaker post-transplant since May 27th. I arrived home July 25th and will return to Mark and Blair’s on August 2nd. Part of my role as caretaker is “chauffeur” since Mark isn’t supposed to drive until three months post-transplant. Also, one of the concerns after transplant is the increased chance of seizures due to the large amount of initial medications.  So he needs someone close by. When I return I will participate on a panel of caretakers at one of the monthly classes held for patients awaiting transplant as well as post-transplant paitients.  I’m being asked to share my experience so others can learn some of what to expect. Many topics concerning transplant are covered in the course of a year ranging from surgery specifics to insurance to pain management and so on. The classes usually end with a panel. One that Mark and I attended pre-transplant had five persons talk about their transplant experiences. Everyone’s story is different and not all of the panel were Cystic Fibrosis patients.

In my previous blog I talked about my feelings when Mark was diagnosed, wondering if I’d ever be happy again and how would I manage all the care involved.  That was the initial “wrap my head around this” adjustment to a shock that anyone would go through. But I found encouragement from many sources.  Early on, I remember being put in touch with a nurse who had a daughter with CF.  When I called the home phone the grandmother answered and told me she was house sitting while the family was on vacation. I can remember being thrilled to imagine that vacation was a possibility!  I had had no idea what life with a chronically ill child would be like. As the months went by Henry and I adjusted to our new normal.  The main changes being performing “postural drainage and clapping” on Mark twice a day which we explained to him were “thumpies” and opening up enzyme capsules into applesauce. Most CF patients need the enzymes for digestion and take them their whole life.

That concludes my sharing of a little bit of the present on this journey and a little bit of the past. Thank you for reading!

— Connie