The Caregiver

Many of you may not know that my husband was the recipient of a double lung transplant on January 27, 1994, at the University of Wisconsin Hospital in Madison, an event which entirely changed the tone and tenor of our lives. Cliff is known informally at UW as “No. 4,” designating the fact that he was only the fourth double lung transplant performed at Madison. We owe the staff at UW our life – Drs. Love and McVey, who performed the transplant; Dr. Pellet, who kept a careful eye on Cliff in ICU and entertained us all with his hilarious comments and observations during Cliff’s recovery; our nurse-coordinator, Debbie Welter Roe, one of our very dearest friends; Bob Hoffman and Lori Shinstine, the tireless OPO team and also dear friends; Dr. Russell, Cliff’s absolutely amazing Chicago GP; Dr. Al-Bazzaz, our beloved pulmonologist who first set us on this journey; and others too numerous to mention. We are also eternally grateful to Paul Poellinger, the husband of Cliff’s donor, an absolutely amazing man who we were privileged to meet and with whom we’ve stayed in contact. Six months after the transplant, Cliff went back to work, as a Chicago police officer on full duty, and finished his career 10 years later, on January 16, 2004, at which time we retired to Cape Coral, Florida.

Due to our move and some major changes at UW, we transferred his post-transplant care to Mayo Clinic in Jacksonville, Florida, a five-hour drive from Cape Coral. Everything you have heard about Mayo is true. It is an amazing place full of amazing people – from the head of the transplant program to the Finance Department to the appointment scheduler. Our visits are scheduled to the minute, and by the time we see Dr. Erasmus in the afternoon, he has results of all the tests that were done that morning. Dr. E. is a young guy, a pulmonologist who specializes in post-transplant care, very laid back and reassuring – I feel better the minute he walks in the room. Our nurse-coordinator is Heidy David, a woman who is an amazing fusion of efficient professionalism and caring concern. We couldn’t be happier. We know Cliff is at the best place in the country.

Just two weeks ago today, Cliff and I were summoned to Mayo as the result of some rather frightening numbers on his spirometer, a little machine he uses at home to measure his lung functions. He’s had a nagging cough for several months, been treated with antibiotics and the dreaded prednisone a couple of times, but just couldn’t seem to shake it. We noticed a drop in his numbers and called Heidy late Thursday afternoon. On Monday, we were in Jacksonville for a bronchoscopy. For those of you who aren’t lung-friendly, a “bronch” involves a long tube with a little camera on the end, inserted through the nose into the lungs so that the doctor can “eyeball” the lungs. Dr. Keller came out after the procedure to tell me what he had found. I asked him to lay it out for me – don’t spare me any details, just tell me what you think. “Well,” said Dr. Keller, “it could be one of three things: acute rejection, an infection that just hasn’t been completely knocked out or chronic rejection; don’t think it’s acute, but it could be one of the other two.” And, to Dr. Keller, I replied: “You’ve never met me before – I should probably explain how I operate. Acute rejection doesn’t frighten me – we’ve been through that before; infection can be treated with antibiotics; chronic rejection – that’s the big bad wolf that haunts the dark closets of the minds of transplant survivors and those who love them. I pick infection.” He looked at me, with that doctor look, and said, “Well, you’re just a little bit crazy, now, aren’t you?” I had to laugh through the tears that were welling up in my eyes – crazy? Oh, yes. Totally. How do you think I made it through the last 14 years?

So, home we go, armed with antibiotics. Next day they call to tell me they’re adding a prednisone burst and doubling the length of time he takes the antibiotic – “Strictly precautionary, Debra, nothing to worry about. Just want to hit whatever it is with everything we've got.” Okay. So, every day with the Levaquin 750, and the Prednisone, a wonderful but awful medicine, and the pulmonary function tests and then his sugar goes out of whack because of the Prednisone, so there’s sticking the finger and sticking the tummy and measuring and watching and reminding and nagging. But, the good news is Cliff feels better than he has in months, the cough is gone, his measurable lung functions are up, almost where they were six months ago before this all started, and he’s working his ass off at the gym every other day – think five hours of non-stop cardio. A 57-year-old man with someone else's lungs! We will beat this! To be continued.