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  • Dr. Susan Rose

Spring/Summer 2019

This year seemed to start out as you had hoped in your Christmas 2018 letter. The pacemaker that you had implanted last year in October seemed to control your heart. We thought at this time that you still had Hidradenitis Suppurativa (HS) and that the stress of the strong medications, infections and surgeries were causing heart trouble. With the HS under control with medication and surgery and the heart under control with the pacemaker, we again thought we were seeing some light at the end of this health tunnel.

Yet, in early February, you again feeling overly tired. We went back to the cardiologist. Now, the heart was not only having difficulty with pacing, it was also out of rhythm (arrhythmia). You were hospitalized at March to replace the pacemaker with a transvenous Implantable Cardioverter Defibrillator (ICD), which acts as both a pacemaker and a defibrillator. You never let any of this dampen your spirits. You pushed through work and all that we wanted to do.

We took the family to Great Wolf Lodge and Newport Aquarium for our birthdays. You took the grandchildren, Tony, and David to a Louisville Bats game as guests in the LG&E suite.

I didn't realize how spoiled I was with these events until you weren't here to take me. I never went to Churchill Downs for the Derby or any other event without being in the suites. I very rarely went to a Louisville Bats game, a U of L football game, or a Reds game without being in the suite. I was a pretty pampered princess as Bob Rose's wife, and I loved it.

However, in March, you began to feel overly tired all the time. Your cardiologist scheduled a PET Sarcoidosis Exam for April 26. When that came back to confirm Sarcoidosis, he referred you to a cardiologist, Dr. Jellis, in Cleveland Clinic. We drove up for those appointments, labs, scans, etc. on Wednesday, June 19 for those appointments on June 20. Dr. Jellis was so concerned that she wanted to hospitalize you for tests and to get the fluid off your body right away, but we had the annual trip to Madeira Beach and Disney World planned for the following week. You wouldn't hear of not taking the family to Florida. She scheduled the tests for the following day, Friday, June 21, and said that she would call us when the tests were returned. She called us on Wednesday when we were at the Beach and confirmed that the Sarcoidosis was in Stage 3 and that you needed to be hospitalized right away to remove fluid that was taxing the heart and lungs. She scheduled the hospital stay that day for July 8 - July 16 as you wanted to be able to get back into town and get work caught up a bit before being out again.

I will forever be amazed that you went right on with the trip, even Disney World. We already had a handicapped parking pass, because of the ICD. We parked there and got a traditional wheel chair that I pushed until we could get into the park to get a scooter. You were determined to give the family the same good time that we always had even though you were so sick. You even insisted that I ride the scooter some as you were concerned with my health. I still cannot believe how blessed I am to be your wife. You are an amazing man!!!!

We drove up on Sunday, July 7, and stayed at the Holiday Inn on the Cleveland Clinic campus to be ready to be admitted in the early morning of Monday, July 8. You were originally admitted for complaints of palpitations and shortness of breath due to the diagnosis of Cardiac Sarcoidosis, an inflammatory condition affecting many parts of the body. You were started on intravenous steroids, then an oral steroid after that. Fluid build up was causing edema, so you were given intravenous "water" drugs to remove the water. We were surprised that you lost almost 80 pounds of water weight.

Still, over the course of this week, you remained positive. We visited other patients and families and talked and prayed with them. We still didn't realize how sick you were. And, as always, you were more concerned about others than yourself. We also walked over to the look-out center on the top floor of the hospital to spend time together and feel more "normal". One of my favorite pictures is a selfie that we took on one those walks. It shows how hopeful and in love we were.

We were released with follow-up appointments with the pulmonologist, cardiologist, ophthalmologist, radiologist, and dermatologist for August 14 and August 15.

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