
For Mr. K, who doesn’t miss a beat.
November 2023: Not so Fast
The next night as I was lying in bed I felt my heart pounding, and I looked at my watch. It wasn’t just pounding, it was racing. Then I noticed I needed to take more breaths to get enough air. Oh, I have been here before. I called Dr. Advanced Heart Failure Cardiologist. On his personal cell phone. Yes, he had given me his cell phone number and told me to call him if I needed anything! Ultimately my blood oxygen level was getting pretty low, so he told me to go to the emergency room.
When I got there, there was a lovely family ahead of me. Seems the little girl had fallen down and gotten a booboo. She looked fine to me. I sat there gasping for breath while the father, with a chuckle, told Mr. Intake he thought she was fine, he just wanted someone to double check. I wondered if he had ever heard of urgent care centers and how he would feel once he double checked the bill for this so-called emergency.
Finally they were done, and it was my turn. Mr. Intake asked me what the problem was. “I can’t breathe,” I answered, and started to cry. They brought me over a wheelchair and an oxygen tank and rolled me back to a bed.
I had a bunch of tests, x-ray, blood, urine, blah, blah, blah. Seems that I was retaining too much fluid because of the chemotherapy. They gave me an IV diuretic, so I had to pee a bunch of times during the night. There was one bathroom across from my room, but often that was full. An emergency department is a busy place! So I had to go over the river and through the woods for the next closest one. Took about a year to get there and back. Lucky I brought my map and compass.
As I have previously described, there is no privacy in emergency rooms. So while you’re lying in bed waiting for pee to happen, you hear a lot. There was the woman two doors over who was coughing so hard I was afraid she was going to injure herself. She was going through a rough time for sure. I hope she ended up all right.
Then there was the guy in the room next to me who brought along two Friendly Police Officers to keep him company. He had a broken nose. I don’t know what happened to the other guy. But this guy explained to them how it was the other one who started everything and who was at fault. The Friendly Police Officers were very – well – friendly. But sometime in the middle of the night they took him out in handcuffs. Before they left the Friendly Police Officers had some interactions with the Floor Nurses involving donuts. Always pays to stay on everyone’s good side, and what better way than through sweet treats?
When the morning came I sure was ready to leave. They still kept me a while to check on this and that. Finally, late in the afternoon I was out.
Guess the chemotherapy was a little harder on me than I first thought.
Both the hospital and my insurance company assigned me a Heart Failure Nurse to keep tabs on me and make sure I had everything I needed. They were as nice as could be, but I was already getting good care, my fluid situation was balancing out, and I had doctors that I could contact anytime I needed to, so there was not much for them to do. Still, I was glad they were there.
Another positive – I had health insurance available to me through my state’s health care exchange made possible by President Obama’s Affordable Care Act. I saw the many thousands of dollars that were being billed and paid for my care. Thank you, thank you, thank you, my man Barack Obama.
The weeks went by. Faced with this difficult situation, I did what any normal person would do: I cleaned. Yes, I cleaned my house. I bought an extra long pole with a squeegee on the end so I could wash my windows on the outside without climbing a ladder. I pulled the rugs up and wiped the floors down. I scrubbed the refrigerator. I felt like I had to make a comfy nest for myself. I also felt like I needed to do something I could control.
And, I made a chart showing the progress I was making until chemotherapy was over. Each week I colored in a new square with a bright Crayola marker. See how something pretty can come out of something ugly! Of course, it was not going fast enough.
All the same, considering all that was going on, I was doing okay. I tried to prioritize sleep, because sleep helps you heal. The night of treatment day I got almost no sleep because of the dexamethasone. So I tried to sleep late when I could and take naps. Snoozing became my hobby. And I always felt a little queasy. When I caught a whiff of food I thought That smells disgusting! But when I sat down to eat I was able to chow it down, and everything stayed where it was supposed to. My brain got a little foggy, but I tried to pay more attention to what I was doing so that I wouldn’t make missteaks.
With my doctors’ approval I added in two supplements. I stumbled upon them during my searches on line for amyloidosis cures, you know, something that strangers on the internet might know that my expert doctors at an Amyloidosis Center of Excellence had somehow overlooked.
Epigallocatechin Gallate (EGCG), or green tea supplement, was one of them. I had read an article on EGCG that was published in 2007 by a medical doctor who had light chain amyloidosis and drank 1.5-2 liters of green tea a day. The symptoms of his amyloidosis improved dramatically. It appears that EGCG interferes with the forming of the fibrils that embed themselves into organ walls, also that it reduces the resulting damage. There are other studies such as this one and this one that seem to support this theory as well. In fact, green tea is good for your health in lots of ways, so drink up!
The other was coenzyme Q10. Your body actually produces this substance, but its levels drop as you age. There are quite a few articles detailing its positive effects on heart failure, like this one and this one, and others demonstrating positive effects on other conditions. Coenzyme Q10, where have you been all my life? And anyway, isn’t that a cute name?
There are other supplements for which there is evidence of benefit, like turmeric, but I felt like folding in two of these, along with chemotherapy and immunotherapy, was enough to take in at that point. Trying to decide which other ones to take became more than I wanted to deal with.
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