Transplant World’s Version of the Roller Coaster

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. 

Randy came home last Monday, a week ago. I’ve had to learn some new skills…such as flushing his PIC lines, and giving him one of his antiviral drugs through the PIC, twice daily.  The week went well for him, the Home Health nurse came twice to give him Cytogam, the big Antiviral med. Randy takes it over a 6-8 hour period, so the nurses were at the house all day.  Both of the nurses were wonderful, and now Randy goes to once a week on the Cytogam.  I’m still giving him the twice daily IV medicine.

A bit of excitement came our way on Saturday morning. Randy had just finished his med, and he said he felt “funny”.  His heart was racing along at a pulse rate of 142, his blood pressure (which is usually very low) was high, and he had pressure in his chest.  I was for calling an ambulance, but instead, we called the UT Southwestern Transplant Team. They, of course, said get to the ER.  It was actually better than calling an ambulance…did you know that ambulances will take you to the nearest hospital only, not to the one where your doctors are. Thankfully we skipped a trip to Medical City and went straight to UT Southwestern Clements University Hospital.

As he got into bed in the ER (the rooms are huge, and very, very nice) his stats began to improve. His heart rate began to slowly inch down, and his blood pressure followed.  They ran several tests which revealed no issues with his heart or lungs. To be on the safer side of things, the doctor wanted him to spend the night and receive two treatments of the IV medicine to be sure he had not had a reaction.

Off we went to the 10th floor (heart and lung) and he was put in the room next door to his old one.  Most of the nurses on duty had treated him, so we had a greeting convention before he got to his room.  Fortunately everything went fine, and he is back home, but oh, what a ride.  You know the feeling in your tummy as the roller coaster heads down?  The whoosh feeling?  As I sat in the ER I had that feeling several times. Is he having a heart attack? The symptoms were there. What if the blood clot got into his heart or lung? I had to call my children and let them know what was happening, and I know how it upsets them. I would never keep them in the dark though, because when I was their age, my father was terminally ill with emphysema, and I wanted to have every scrap of information, good or bad.  As my son, the Bear, says, knowing is always better.

Okay. Now it is time to get off this roller coaster!  Time for Randy to continue to get better and get to a point where he doesn’t have to take any more IV meds. We are supposed to attend an event in Atlanta for the Cystic Fibrosis Foundation, then meet our family in South Carolina, but it all depends on his immune system, and if the doctor thinks it is okay. In Transplant World plans have to be flexible, because things can change quickly. We do have our two children getting married this year, and one is out of town, so we have to keep him well.

And so …. As the Transplant World Turns…recovery is on the schedule.