I remember bits and pieces after waking up. Memory flashes of the ceiling, the machines and the blinking lights, and watching nurses and doctors walking the hall outside my room. I remember the ambulance ride from one hospital where they saved my life, to the next hospital that was going to get me back on my feet. When I got sick, the major hospitals were being designated as those that took the most critical cases, such as mine. This allowed more people needing critical care the ability to get a bed where the services provided were most needed. Once I was out of the woods and continuing to improve, I was transported to hospital #2 where I stayed for approximately 3 weeks, while I continued to recover. This was the last pic I took before I went into a coma.
When I woke up, I could barely move. I had no strength, but worse, I had no coordination. No ability to move my right side, and was only able to move my left hand a little bit. My right side was mostly numb and I couldn't feel the doctor touch my toes, and I experienced excruciating tingling pain in my left foot. It was like I’d been sitting on my foot and it had fallen asleep, with the worst case of pins and needles you can imagine.====
I was terrified, confused, and many nights woke up calling out for someone close to me. But even then I couldn’t say his name correctly. My speech was slurred, and many times incoherent. I had such vivid dreams that when a nurse asked me if I knew why I was in the hospital, I told her the story of how I was pulling a boat along a narrow road, when I went off into the lake alongside me. Everyone in the room looked at me like I was crazy and we all laughed. The medication I was on was some heavy stuff and I had to deal with the side-effects of that as well as what covid had done to my body. This is when I began the long, incredibly difficult journey to regain my health. To rebuild my life.====
While at hospital #2, the staff was spread thin and often it would take quite a while for a nurse to check on me, many times not coming at all. My days and nights were mixed up, and I spent many days not knowing if it was AM or PM. The staff was nice, but if it wasn’t an emergency they often neglected me. I totally get that there was an epidemic happening and all hospitals were at or above capacity, but patient neglect was a real thing. It’s hard to feel safe when you’re unable to care for yourself and neglected by those that are supposed to take care of you.
August 11th I was finally able to leave the hospital and start rehab at a skilled nursing facility. This is where the real neglect started.
The first place I went, Autumn Leaves, looked nice and the staff seemed great. But I was only there for 2 days because the a/c was out to the entire wing I was in, and Texas in August without a/c is like a walk in hell. They brought in a portable unit that managed to get the temp in my room to around 78 during the coolest part of the night, but it was still difficult to sleep or get any rest at all. They suggested that I transfer to a sister facility just down the street called Walnut Place. Thinking about the nightmare I went through in that place is hard, but my hope is that it will save others from going through what I did and bring about change for the future.
It was great when I got there. Everyone was nice and helpful, and we started on physical therapy 2 days after I checked in. This was very difficult for me, and while I tried my best, I just couldn't complete the tasks they asked of me. My stamina was gone, I had very little strength, and it was incredibly hard to breathe. I stayed on oxygen for at least a month after being there, if not longer. PT / OT was incredibly hard because while my lung capacity was improving, it wasn’t improving quickly enough to advance in therapy according to what insurance wanted me to.
After only 10 days of physical therapy, insurance stopped my benefits due to lack of progress, and they deemed me as unable to get better and left me to rot in the facility. I went round and round with BCBS and was even told at one point that I was too old and overweight, and that the doctor overseeing my insurance claim would not approve any additional therapy because I was a lost cause. The caseworker assigned to my recovery was zero help. No one ever followed up with my questions, no one followed my case to ensure I was getting what I needed. No one in that facility worked on my behalf to restore my ability to walk or even be self-sufficient again.
The first doctor assigned to my case at Walnut Place wasn’t any help. He was just there to collect his check from BCBS and did not do what was in my best interest. I had a PEG tube in my abdomen, which is a feeding tube and was required by BCBS to transport me from hospital #1 to hospital #2. Never figured that one out. The PEG tube was required for a 20 minute ambulance ride but was not able to be removed until after a minimum of 6 weeks. My assigned physician was so unhelpful, as was the skilled nursing facility, that I had to find a doctor and schedule my own removal procedure. I was stuck with that 12 inch long hanging out of my abdomen for a month beyond the removal period, and even then it wasn’t removed properly.
I scheduled to have the stitches from the ECMO procedure removed at the same time as the PEG tube, and another doctor was just there to collect a check. He removed the tube, but left tissue hanging out of the hole in my abdomen. And the stitches in my thighs were never removed, but only had the knots clipped so my body could naturally push them out. This took months to happen for those near the skin surface, but those deeper, near my femoral artery, are still there. No one could tell me what would eventually happen to them; if my body would push them out, or if they would eventually break down, or if they would just stay there permanently. The stoma left by the PEG tube removal was never addressed by Walnut Place, even after multiple requests to the wound care nurse. I also had a stoma where the trachea was that after multiple requests to the wound care nurse, finally fell off thanks to several treatments with silver nitrate. For those that don't know what a stoma is, it's a small piece of tissue, much like the tissue inside your mouth, that protrudes from an opening in the body. I had 2 of them: 1 from the opening in my neck for the trachea and 1 in my abdomen for the PEG tube.