Tuesday, August 9, 2022

March-June, The Hospital

Since last summer, I had not been sleeping well at night. I figured it was because of perimenopause. Bad sleep means I nodded off a lot during the day before finally giving in to an afternoon nap. Then I couldn't sleep much at night. It was a terrible cycle. I spoke with my doctor in late December and she told me to see a pulmonologist and cardiologist. I couldn't get appointments until late May/early June.

Meanwhile I kept nodding off a lot during the day. I wasn't eating much. I lost a lot of weight. I was arguing with my parents about going to the hospital. Then on a March Sunday morning my mom found me unresponsive in my wheelchair next to the bed. She called 911. They talked her through doing CPR. When the paramedics arrived, they worked on me for a long time before taking me to the ER.

Upon arrival I had 40% oxygen. I was taking 4 breaths a minute. I was put on a ventilator. I knew I was on a ventilator when I woke up. I knew I was in the hospital. But I didn't see my parents or SP. I figured if I was on a ventilator, I'd been in a terrible accident, I thought with SP & my parents since I didn't see them. Had my parents & SP died? The next thing I remember is being moved somewhere, parked somewhere, all alone, it was dark and creepy. I thought I'd been left to die.

The next thing I remember is a new room. I was still all alone. The TV was on. News was on. The war in Ukraine. But the ticker tape looked like Russian to my eyes. Had Russia taken over? I started to panic. Was I all alone like Rick in the hospital in the first episode of season 1 of The Walking Dead? I couldn't move. I was still on the ventilator. And no one came.

I don't remember when I became more aware of things. There were nurses coming to see me. Doctors. My parents. But no SP. I could write, mostly illegibly, but I asked where SP was and my parents looked at me funny. Didn't I remember? They had to tell me he died in January. I started to sort of remember.   

I was on the ventilator 2.5 weeks. Eventually I moved to a "step up hospital."  Finally I moved to rehab. And on June 1 was discharged.

I have since learned a lot. That I technically died for a bit before being revived. That I wasn't expected to live. That if lived, I wouldn't recover back to where I was. I had only 2 reflexes when I arrived. They couldn't get my feeding in so they called the "experts" who found traces of acid issues. That I had an echo & had a probe threaded in to look at my heart because they feared heart damage. The pulmonologist and cardiologist I was scheduled to see in May/June had been called in. The nurses said it was a miracle I lived. I was surprised I didn't have some sort of brain issue. 

Not that I didn't fear it - maybe not a super obvious one, but... I didn't feel right. My eyes had trouble at first. I couldn't read. The first time I tried to use my cell phone I swear it had changed to a foreign language. And I couldn't remember how to use it. Also, updates had changed features and I broke down in tears because I couldn't figure things out. My writing was terrible. My hands shook. I was weak, so weak. For a long time I couldn't even lift my arms or move my legs. My thoughts were jumbled. 

The ventilator caused damage to my epiglottis and vocal cords. I couldn't swallow/get food down without aspirating into my lings, so I was only tube fed. I wasn't even allowed water. At first my voice was a low whisper because my left vocal cord was paralyzed. I had to have an injection for that. Ugh - through the nose and down to the cord. It got the cord partially moving, enough to have a normal, strong voice but not enough for eating.

I had lots of physical, occupational, and speech therapy. I got stronger. From 21 minuets to sit up, get to edge of the bed, and slide into my wheelchair to 3. By late May I was allowed liquids (only through straws), purees, and minced foods (plus tube feeds) - with precautions like a left head turn and coughing. To celebrate, my speech therapist brought me a large tea from Starbucks. It tasted so good.

My lungs are forever weak. The muscular dystrophy caused that. It made my lungs relax too much when I slept. I wasn't getting enough oxygen to my lungs. So not enough oxygen to my brain. That caused all this. Now I wear a mask at night when I sleep and it forcibly blows air into my lungs. I'm still having 2 tube feeds a day. I need to make sure I get enough calories and nutrients to heal and gain back the 30 pounds I lost. My last barium swallow test showed some lingering issues but I was cleared to eat any solid (so, anything) as long as it's small bites and I follow precautions (left head turn, coughing to clear lungs). I developed 2 terrible bedsores and just now, after 4.5 months, they've been declared closed but I still have to be careful because the areas are still soft and fragile and I still have to stay off them a lot. 

It's a lot. A lot of change in 2022. First, SP. Then this, And now, a new home & roommates. Stay tuned.

Monday, August 8, 2022

January-March, Grief

 An eight month blog absence. 2022 has been awful so far. Since my last post last December, we didn't cook anything new nor did we go anywhere exciting. SP was having stomach trouble. Plus, COVID. 

The first week of January, SP worked from home (his work was still WFH) and I could see he'd lost a lot of weight but I figured it was his stomach problems. I was not sleeping well at night, which I figured was because of perimenopause. Therefore I nodded off a lot during the day before finally giving in to nap. Then I couldn't sleep much at night. It was a terrible cycle.

One night SP threw up all over his dinner plate. I'd never seen him vomit before. With everything else I'd seen, his comments about his stomach, just a general feeling of dread and worry, I told him I was calling his parents to take him to the ER (I can't drive). I called him at the hospital that night at 11 pm. He'd fallen at the hospital. He didn't sound good at all and told me he didn't feel good, that he didn't feel like talking. I was sad and disappointed. He's my best friend. I love talking to him. But I said OK and we told each other we loved each other and hung up.

The next morning I awoke to my phone ringing. It was the hospital calling to tell me SP had died.

I went numb. Disbelief. I tried to tell them they were wrong. They gave me all sorts of info and asked a lot of questions. What funeral home? Did I want an autopsy? Could I come in?

I was overwhelmed. I called my parents. 

"Daddy I need you, Greg died." "

"OK we're on our way." 

All this at 8 am. 

Then I had to call SP's parent with the news.

Long story short (maybe): At the hospital, in his room, SP's glucose level had suddenly dropped way too low. He couldn't respond with his insulin pump because it was so low. The nurse found him unresponsive and gave him a shot but the sudden low insulin caused cardiac arrest. They stabilized him and were taking him to cardiac ICU when he again went into cardiac arrest. Despite bypass surgery 10 months earlier, despite exercise and so much salad that I grew sick of salad, his arteries were again severely blocked. Additionally he was bleeding internally in his digestive system - they couldn't find the source of the bleed and and he was bleeding into his belly and he bled out. Type 1 diabetes & other autoimmune diseases caused all this. He's gone and I am alone.

I don't know how I made it through planning a funeral, the funeral, after the funeral. I just remember trying to make it through each day. There was so much to take care of - his work/beneficiary suff,  removing his name from accounts, cleaning out his stuff. Basically erasing him. That's what it felt like.

I still cry a lot. I miss him so much it hurts. Everything reminds me of him. I am lonely. Sad. Full of grief. Sometimes I want to scream. Being a widow stinks.

I try to focus on all the good memories, but they make me cry. I have panic/anxiety attacks. I have lost so much.

So that's part of the reason for the blog absence. Stay tuned for the other reasons.