Updated: Oct 18
The year began quite well. You had recovered from your surgery over Thanksgiving, worked very hard on strengthening your legs once again to walk, and returned to work. We again thought we were out of the water and moving on toward recovery and health.
Yet, in February, you were beginning to feel tired all day - as if you weren't sleeping at all. We went to Dr. Davidson, your primary care doctor. He referred us to a nephrologist specialist as the testing he did showed that the kidneys were now affected. That nephrologist specialist referred us to Cleveland Clinic as he suspected Amyloidosis rather than Sarcoidosis, and the Cleveland Clinic had an Amyloidosis Specialty Program. The nephrologist at the Cleveland Clinic Amyloidosis Team recommended that we come there for a week as that would expedite the tests and save us from having to drive up so many times. We drove up the morning of Monday, March 9, and were admitted a little after noon that day. The doctor immediately began doing tests and gathered the team. It was discovered that is was Amyloidosis. And, because of that, it increased our stay to attempt to get the Amyloidosis under control.
So, the week was up on March 16, but we already knew that we would staying longer than a week to work on the new diagnosis. But, March 16 is a big day in the US. That's when the government shut down the country for COVID-19. We were told that I would have to leave. But, I explained to the Lead Nurse that I had been with you at the hospital since March 9, as I packed a bag and stayed with you when you were in the hospital. Since I had not left the hospital, there was no way that I could be infected or have brought any germs into the hospital. She agreed and discussed it with administrators, who allowed me to stay. During this week, state governors were getting involved and flexing their power muscles. On March 23, the Ohio governor announced that no hospitals were allowed visitors. I told the nurses that I would leave when the governor showed us his medical license. They were now worried for their nursing licenses and reported this to administration, who sent the police that were now acting as security for hospitals and federal buildings. You were worried that they would treat you poorly if I didn't leave at this time, because the police threatened to arrest me.
I left rolling my suitcase with tears streaming down my face. It was so difficult leaving you, because I was not only your wife but your advocate in all this health mess. (In hindsight, if I had known that I was going to lose you just seven short months later, I would have made a scene and had my face all over the papers as an example of the atrocities the Egos making the pandemic decisions were creating. Now that I know even more what political power did to so many families, I wish that I had stood up for us as well as all the others.)
I stayed that night in the Holiday Inn on campus, where we usually stayed for your appointments. You discovered that night that the cord that I left you to charge your phone was not long enough, and I wanted to see you so badly. So, the next day, I went back to see if I could go to the Joseph-Beth gift shop on the first floor of the clinic to buy the cord and deliver it to you. The police said no, but a wonderful nurse who was helping man the security station heard and offered to buy it for me and take it to you with a note from me. I gave her money and got out paper and pen to write a note, while she went to the store. She returned with change and took my note. I called you to tell you that I couldn't come up, but the nurse was delivering the cord. You said that was good, because your phone was you connection to me.
I went back to the Holiday Inn and stayed the next few nights there, because I wanted to be close in case someone talked some sense into the governor. After 4-5 nights (I don't remember, because it seemed so long), you talked me into going home saying that we could talk on the phone from anywhere and you didn't think this was going to life any time soon from what you hearing in the hospital. I checked out and drove home with a very heavy heart. I know that God was watching over me, because I was tired, sad, and all the emotions on that drive.
A couple days later, we were told that you had responded to the medication and were being moved to a step-down unit for PT and OT. Again, your legs had lost strength, because the nurses wouldn't allow you out of bed without help due to fall risks and there weren't enough nurses to help you. I was so angry! If I had been there, I would have been able to help. You had worked so hard after Thanksgiving, and now we were back at the same place. You were moved to the step-down unit on March 27.
We learned almost immediately that this was not a step-down unit, but a nursing home. You were not receiving the PT and OT that was promised and were being neglected. I called administration and demanded care. They got tired of hearing from me, but you were at least getting attention. On day two, I began trying to get you moved back home to my care. I could not accomplish release to home, but I was able to get you moved to Frazier here in Louisville. We were so excited, because they were allowing one visitor. I could see you! You were to be transported by ambulance on April 6. We learned on the morning of April 6 that our illustrious governor had joined the rest and forbidden all visitors to hospitals and nursing homes as April 6. We were crushed!
You worked hard and got to the point that your Physical Therapist and Occupational Therapist along with your nephrologist felt comfortable releasing you as long as I came in to train as your caregiver. That was scheduled for April 21, the day before your birthday. I was so excited!! You were ever your jovial self as we practiced lifting, transferring, etc. The funniest part was the car. You insisted it was the smallest car they could find and was on the sixth floor of the building as part of the PT equipment. We managed and were promoted. I came down on your birthday to practice one more time. Then, on April 23, we got to go home.