9 Months Post Transplant and the Roller Coaster Ride Continues

In September, 2013, my husband, Randy, had a double lung transplant. The crisis happened quickly, and was certainly not anticipated by anyone.  The events were severely debilitating for Randy, who was on life support (ECMO, Extracorporeal Membrane Oxygenation, and a Ventilator), not only physically, but emotionally as well.  My two children, their significant others, and family friends gathered to support us, and that support was an absolute blessing. We are all so lucky to have Randy with us, but the simple truth is, life has changed for him, for us, for our family.  It isn’t always easy to deal with.  (I blogged about the entire experience under the category, Transplant. An Unexpected Journey). The roller coaster ride we have been on continues. It is simple fact that of all transplant outcomes, lung transplants have the least encouraging survival rates.  After a lung transplant, the survival rate at 1 month is 95%, at 1 year it is 82.7%, and at 3 years it is 63%.  The 5 year survival rate hovers around 50%.  Why?  Because the lungs are the only organ open to the air.  Any germ, bacteria, irritant, pollutant enters the body through the lungs.  Because the lungs are so vulnerable, thinking about the consequences of any given activity is a must.

We were able to attend the engagement party of close friends two weeks ago, and it was so exciting to actually be at a party, a social event!  The party was outdoors, which made it less dangerous as far as picking up infections, etc, and we had a lovely time. Everyone was just so happy to see Randy!  Last night, we were unable to go to the first birthday party for Bodie, the grandson of dear friends, because of the number of children who would be there, and apparently there has been a serious illness making the rounds at the local schools.  Randy has been experiencing a few symptoms this last week, so we decided it would be best if neither of us exposed ourselves to anything else.  That is just a small example of the changes in our lives.

I have been relentlessly positive about Randy’s outcome. There are people who make it to 10 and 20 years post lung transplant, and I believe Randy will be one of them.  I wouldn’t be human if I didn’t worry, or if sometimes I catch my breath in fear.  I do.  Obviously, the life we had planned to live has been replaced by uncertainty. We love to travel and dive and hand glide and snorkel….some of this will be changed forever.  I plan to take my dive trips, diving is truly my passion, and we are starting to travel a bit within the US.  Next week we are off to San Antonio to enjoy a week at a home overlooking the city, traveling to New Braunfels ( a small German town known for its Octoberfests), and Fredericksburg (known for it’s quaint streets and art scene). I am a little nervous.  When considering travel, we have to think about how quickly he could be seen by a lung transplant team, not just a doctor.  Randy’s medications and ongoing treatment make it dangerous to be treated by anyone who doesn’t have some knowledge of transplants. San Antonio has a lung transplant team at the University of Texas Health partner, University Transplant Center.   I’ve been in touch with our transplant clinic about the trip, and I’m sure everything will be fine, but this is Randy’s first trip away from home since the surgery. I imagine we will pay a visit to the Alamo, and most certainly the famous River Walk.   Next month we are headed up Highway 1 (or 101?) in California from Los Angeles to Santa Barbara, to Big Sur, Carmel and Monterey, San Francisco, then a week in Shelter Cove.  After, we head to Lake Tahoe for a week.  Shelter Cove has air ambulances, and so does Tahoe. I’ve already checked.

Randy is doing very well, he is starting to build up strength and muscle, and his attitude is quite good.  He is down to a fairly low dose of prednisone, the drug our transplant team calls, “the asshole drug”.  Ha ha. At 9 months post, he is in pretty good shape after everything he has been through!