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  • Dr. Susan Rose

Summer 2020

Updated: Oct 18

The end of April and May were spent with home OT and PT working to get your strength, especially in your legs back up. David was home due to the Pandemic shut-down. That was one silver lining. You were so happy that he could help us. You were always so worried that I was overworking myself. We didn't intentionally split the duties, but it came to be that David helped you with PT, while I did the nursing.

During this time, you also thought that you should go ahead and retire. You said it was because you wanted to spend time with me while we still had it. But, I now realize that you were more aware of your body that I was able to accept. You retired on June 30. Because of the pandemic, LG&E couldn't have a party. Steve, your direct Supervisor, assured me that we would have a party following the pandemic. But, for now, many of your linemen drove past the house in their trucks, forming a parade. You sat on the front stoop and waved to them along with Dave, the Browns, and me.

A couple days later, you were in a lot of pain. Your kidneys were beginning to truly fail, but we didn't know it at this time. We went to Norton Brownsboro. They weren't equipped to handle Amyloidosis, so they reached out the Vanderbilt and Cleveland Clinic. It was decided that we should go back to Cleveland Clinic as they had all your records. So, on July 4, you rode in an ambulance while I followed.

Thus began our second July in Cleveland Clinic. We spent last July thinking we were curing the Sarcoidosis. This July, we were fighting the Amyloidosis. We had a team of Doctors and a notebook now almost full of questions, answers, research and anything else we could find to overcome this disease, which we now knew only 0.03% of the population had to struggle with.

You joked, as only you could, that we should play the lottery, because the numbers were better.  And, since I'm a research nerd, I looked it up to see if that was actually true.  It is.  The odds of winning either the Powerball or Mega Millions are roughly one in 292.2 million and one in 302.5 million, respectively. That's 0.034 and 0.33, respectively.  So, you were right, but we had more important things on our plate at the time.  We never got around to it.   

Yet, once we arrived, we were met with some overwhelming news. The Amyloidosis doctor that we had worked with in March sent his assistant to tell us that the Amyloidosis was secondary, not primary, so we could not be in the Amyloidosis program. We would need to work with the doctors to cure the initial disease that caused the Amyloidosis. We learned that primary Amyloidosis was being treated similarly to cancer on a trial basis as it is similar to Multiple Myeloma, Blood Cancer. Secondary Amyloidosis is brought on by an underlying illness, which is considered the primary disease. So, we were assigned a team of doctors to find what the underlying illness was so that we could begin treating it.

We began listing the doctors on the whiteboard, so that all could communicate. Previously, we had used this board to record our questions and goals, but now it seemed more important for all the doctors to be on the same page.

You were tested for Rheumatoid Arthritis as that is one of the main causes of Secondary Amyloidosis. That was negative. Then, it seemed that you were being tested for everything and anything. All tests came back negative. The doctors eventually said that the Hidradenitis Superativa was the primary disease, and that we needed to work with dermatologists to cure it. We were to be released the Wednesday of the week of the annual Madeira Beach trip. (You encouraged the kids to go on and go without us, saying that we would have many more summers to make it up.) The hiccup was that you would need to have PT and OT, again, before you were released to home. You had worked so hard after Thanksgiving and again after the COVID fiasco in March to strengthen you legs. Now, you would have to ride in the ambulance again from Cleveland to Louisville and strengthen your legs for a third time. I was in awe of what you did next!

Instead of being frustrated with having to go to rehabilitation again, you thought of me first as you always did. Because we were still in the pandemic lockdown, you would have to quarantined for three days once you went to rehabilitation in Louisville. We couldn't see one another yet again for three days. Instead of being frustrated as I was, you bought me a ticket to go down and surprise the children. You surprised me with it when I got back from getting dinner for us from the cafeteria. So, when you were taken to the ambulance, I drove home to Louisville to fly down to Madeira Beach. I sent pictures and face-timed you to try to include you. Yet, I must admit that I was keenly aware of your absence. Even though I did enjoy being with the children, it was so hard being there without you!! And, while I did share that with you, I also took out some of frustration on you. For that, I will always be sorry!!!

We flew back Saturday evening, and I went to the rehabilitation unit early Sunday morning. The three days should be up - Thursday, Friday, and Saturday. But, they wouldn't let me see you. We talked and decided to sign you out the next day. From that point on, your first question with any procedure was whether I would be able to be there. You wouldn't do anything from this point on unless I could be there. It was humbling to realize how much you loved me and depended on me as your advocate, but I was also angry that we were not doing everything to extend your life. You kept telling me that you were living in that body and knew that it was failing you. I didn't want to hear it. I couldn't hear it. You were my happiness. I didn't want to live without you!!

So, for August and most of September, we went about life with OT and PT as if everything was fine. You were going to recover and live with me happily ever after. I now know that you really didn't believe that, but you knew that I needed to so you allowed that. I love you so much!!!!!!

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