So you see, I just had  open heart surgery to replace an aortic valve that had previous been replaced with the TAVR procedure. I had a sternotomy where they crack the chest and cut me from the  neck down to mid-chest. The wound didn’t heal completely, so I currently have a small hole in my chest that is waiting on healing before I can be completely off restrictions. It’s kinda small, but big enough–about the size of nickel right between my boobs.

I came through the surgery okay. I was intubated for quite some time, over 24 hours this time but they finally took the tube out and put me on the high-flow cannula at 100% oxygen flow with nose pillows. I couldn’t hear anything from the loud sound of the cannula in my ears. It was very isolating. Eventually, my lung doctor came in and said I was down low enough to switch to a regular nasal cannula. What a huge difference! The worst part? I had to be alone–no visitors were allowed in ICU. I was in ICU for two weeks.

Then the Texas winter storm hit and I was stuck at the hospital because nobody could get out of the hospital via ambulance, or get into another facility. All over the hospital alarms were going off because of burst pipes and water on the floors. They couldn’t serve water because we were under a water boil alert, so no tea, no coffee, and no lemonade–all bottled water. The kitchen wasn’t taking orders either, so everyone got the same thing—and let me tell you, if regular hospital food sucks, this food sucked more. It was a rough several days in general. My family was at home without power or heat for three days solid, and then off and on for hours at a time. They went and sat in the cars with the heaters running to charge the phones and get warm. Lynn fell on a patch of ice, like skating on a pond. She needed help getting up because it was so slick she couldn’t get any leverage to get up. She was sore for a week afterward, or longer.

Eventually, the sun came out and the ice melted and power was restored. I was accepted into the Woodlands Encompass rehab facility while on eight liters of oxygen per minute–this becomes important in a minute.

I spent almost a week in the facility, doing really well, walking and doing my physical therapy and speech therapy. I was really enjoying it, right up until I wasn’t. I woke up one morning with a sharp pain in my chest every time I took in a breath. It hurt and it hurt badly. I was in tears at one point and was unable to eat or sleep because of the pain. Then, my pulse rate went through the roof. I eventually was at 160 at rest. The facility didn’t take it seriously. I skipped physical therapy that day–I NEVER skip physical therapy. The facility’s doctor wanted me to just wear the bipap for a couple of hours and see if I got any better. I refused. I said I needed to go into the hospital.

They eventually did call an ambulance for me. The paramedic did take it seriously, so seriously in fact that she didn’t want to take me to MY hospital but rather wanted to take my to the one right down the street. I convinced her to do it but she hooked me up to all these machines and ran 80 mph all the way there while she monitored me in the back, continually saying, “I can’t believe I’m doing this….”

I get to Methodist and they put me in through the emergency room. The doctor says he’s going to give me a  medicine that will stop my heart and restart it and that I’m going to feel lousy for a few seconds but it would be over soon. This was supposed to reset my heart rhythm and slow my heart down. It would also tell them whether I was in A-fib. But then he came  back in and said he wanted to do a CT scan first to see if I have any other reason for the heart rate.

Sure enough, I had a pleural effusion on my left lung and had fluid around my heart. So instead, they decided to drain the pleural effusion. They did a thoracentesis and drained 1.1 liters of fluid from around my left lung and heart. I started to breathe better almost instantly. It felt so good and the pain upon breathing had finally stopped. But my heart rate had only gone down into the 120s.

CT confirmed the left lung had collapsed and fluoroscopy confirmed my left diaphragm was paralyzed, probably contributing to the collapse of the left lung. Now, I have to use a Trilogy auto-vent to sleep and breathe with and I can’t lay on my left side any more. They propped me up with bolsters to keep me from rolling over on  my left side. It was awfully uncomfortable.

One day, I was brushing my teeth and my heart rate went up to 160 again. It wouldn’t come down no matter what medication they gave me. So the decision was made to put electrodes on my back and chest and to use the medication that would stop my heart  for a few seconds and restart it. The electrodes were just in case the heart didn’t start up again. I was told, “You won’t like how this feels, but it’ll be less than 15 seconds and then you’ll be fine….” they told me that they had never had to use the electrodes or ambu bag that was standing by next to me and that they didn’t expect to with me either but it was fucking scary.

They set me up and then said they were going to do it….  and suddenly, the room was full of at least 20 doctors and nurses and a couple of student doctors because apparently it’s not a common drug that’s used and some doctors had never seen it used before. Most of the doctors were watching the monitors I was hooked up to and not me.

It was the single strangest and awful feeling I’ve ever felt in my life. My heart was stopped for about 10 seconds. The nurse counted out loud for me and kept telling me I was doing great and everything was okay, and you’ve got this and other things like that, but all I could do was squirm and moan, it was such an odd and awful feeling. One I hope never to have to feel again. But my heart reset and the rate did come down but I do have to take amiodarone for 6 months or so to help control my heart rate. I was found to be in A-fib as well, so the medication is a good choice and I’m already on blood thinners.

Another week in the ICU and then a week in the IMU and I was ready to go back to rehab. Only this time, the facility that had taken me before at eight liters of oxygen was now telling us that they wouldn’t take me unless I was under 6 liters per minute, that it was a ‘company policy’, even though just two weeks prior I was there at eight liters and it was no big deal at the time. I was pissed. They were lying to  me, and that upset me. If they had said, “We don’t want you back because you made our numbers messed up….” or something like that, I would have just chalked it up, but they lied to me.

How do I know? I’ll tell you in a minute….

So I checked out of the hospital and go home. It’s been two months and I haven’t been home even once…. it felt so good to be home.

But then we get a phone call from Encompass Humble…. (pronounced Umble, without the H)…they will take me even though I’m at 8 liters of oxygen per  minute. No explanation whatsoever why I couldn’t go to the Woodlands facility before and why I can the Humble facility now…. but I don’t want to go. I want to stay home and do home PT like we had planned. But everyone in the family thought it was a good idea for me to go in. I hate it–it really sucks–that I always do what I think is expected of me, so I agreed against my desires to go inpatient again for another 10-14 days.

The first day sucked. They have to inspect you from head to toe, naked, to look for any problems, and they give you a bed bath. For me, even though I checked in at 4pm, I didn’t get the bath until nearly 1am. It was a long admit for some reason, and they never did get my medication right. Then the next morning they woke me up at 2:30, 3:39 and 4:30 for various reasons, then expected me to do my first occupational therapy session at 7am before I ate  breakfast or even woke up. I was exhausted, and then breakfast came and it was a clear liquid diet that had  been ordered–broth and jello for breakfast.

That was all I could take. I told Amanda, the occupational therapist, that it had been on clusterfuck after another…. she was amazing. She got me a new breakfast and got the orders changed and changed the time of my therapy to 10am instead of 7am. Still, I cried… I cried for all the months of not being home and for how hard it all was and for so many reasons that had nothing to do with what was really going on. But it felt good to get it out. I needed to purge, it just wasn’t fair to Amanda to dump it all on her lap when she’d had nothing to do with it. She was amazing, absolutely my favorite person to work with this time around.

I got a shower the second day. It was hard but it felt so good after two months of bed baths to finally be able to get a shower.  Nothing makes you feel  more human than finally being clean. Bed baths can only do so much.

The good news was that I had a private room and I was allowed to have visitors during the day so I got to see my son every day and Lynn came one day to see me.

I spent 14 days at the rehab facility, getting stronger. We planned to practice getting into the car before I left and I injured my foot during that practice, which made my  last day of therapy difficult, but I did it, and I got to ring the bell for graduation–they have a bell in the therapy room you get to ring when you’re finished and everyone claps and cheers for you. They all lined up and clapped as I came in and told me good luck and I rang the bell and they all cheered. I got a picture of myself with Amanda to keep for the future–it means a lot to me. They gave out a goodie bag with lip balm, a pill minder, a compact, a t-shirt, a pen, a water tumbler and a cute gift bag.

I finished…twice I went to rehab and ended up going straight to the hospital via ambulance mid-therapy and ended up in ICU. This time I finished.

and then on the way home, I couldn’t get into the car. I ended up nearly in tears convinced I couldn’t do it,  until Lynn,  who had come to pick me up, managed to get me leg in for me, and I was able to move over once I got in.

I’m amazed in a bad way by how much strength I’ve lost. I have appointments to go to doctors and can’t get into the car to do them. I’m still on eight liters per minute of oxygen, which is really high, but I have a paralyzed diaphragm. I don’t know how much is because of that or how much is because of the CTEPH. I know I can’t breathe well still, and it’s worse after the surgery than it was before the surgery. I have had trouble getting out of the wheelchair and standing when I hadn’t had trouble before.

Things are tough right now, but I’ll get stronger again and it will be better. I’m convinced of that.

It’s just it seems every time I go into the hospital, I come out with less and less, and I can’t help but wonder how long before I don’t make it. I almost died–twice–this time around. 76 total days in the hospital, most of that in the ICU. I was scared this time, and I rarely get scared like that. I don’t want to die–I’m not ready at all. Too many  books to write, too much left to see and do. I’m just not ready. I just turned 50, which for some of you will seem old, but let me tell you, it’s not. 50 is young! I have almost half a life left to live, and I want to live as much of it as I can.

I love and need you all. Your words help me when things are hard. I read every single post and response on Facebook. Thank you for being there. It helps.

Love and stuff,

Michy