Transplant World: on the Mend

What a long, long week it has been.  I am so tired I cannot keep my head up, but finally, Randy is on the mend.  To recap, Randy had a double lung transplant 17 months ago, and 3 weeks ago the doctors lowered his antiviral medication, Valcyte, because his kidneys weren’t “happy”.  Randy’s donor had had a common virus known as CMV, but Randy had never had the virus and therefore had no antibodies to it.  When they reduced the medication Randy became infected with the virus. Most of us have had it, and for kids and a healthy adult it is not a big deal. For immune suppressed patients, it can be fatal. Randy was running fever every morning and every evening for over 2 weeks. Then he was admitted to the hospital with a blood clot in his leg, and the CMV virus finally tested positive. He had had virus swabs previously, but they were negative.  The fevers increased, and the doctor was concerned that Randy was not responding to the antiviral they were using.  A sample was sent to Mayo Clinic to check to see if Randy was resistant to the medication. Fortune was with us again, and he is not resistant to the medication, and his fever finally broke. He will be coming home this week hopefully, with a Pikk line and Home health nurses.  Now that he has a blood clot, he also has to take special care because he is on blood thinners.  All of this….because of a virus that most people have had, and never even known it.  Obviously he will be quite vulnerable to infections for a while.  He will have to build up his strength.  But he is here, and on the mend. And I am so completely aware of how lucky we are. Since Randy first went into the hospital in August 2013, I have been a member of several online communities having to do with lung transplants and Idiopathic Pulmonary Fibrosis. A kinder, more supportive group of people would be hard to find. It is through these groups that I realize so fully how fortunate we are, how fortunate Randy is.  Happy endings are few.  The majority of people pass away before they get the transplant, or they pass eventually because they couldn’t get on the transplant list.  Yes, I am fully aware of how lucky we are.

We have friends, Tom and Nancy, who chair a fundraising event for Cystic Fibrosis.  Their entire committee emailed us their prayers and good wishes.  Amazing.  Facebook friends, from high school, past jobs, parents of former students, and former students, offer their support and love as well.  Somehow…I believe the collective energies and prayers make a difference, in one way or another.  I know they make me feel stronger…and better. We appreciate the support, so much. So, we may need to adjust our plans for the beginning of the year.  Obviously, the trip to Cozumel didn’t end up the way we anticipated, and we have travel planned in March that may not come to fruition due to Randy’s suppressed immune system, but we have two young adult children getting married this year, and we need to do everything possible to get Randy strong, and keep him strong. Hopefully he will be home within the next few days, and we can begin the process of healing and strengthening. Thank you for your continued good wishes and support!  Our family is so grateful.