Hello fellow HOCM folks. It's been six weeks since my surgery at St.Mary's in Rochester. First, I survived! Second I made it home safe. All the things that happened in between were either unexpected (like seeing 'stars' after surgery for weeks) or expected (like the pain)
The unexpected may have happened to others who had surgery, but for those whose surgery maybe coming up, I would like to share them just so you too can be prepared. You have to know that with surgery of this magnitude, pain will be there. So plan for that. I only had half of one half of a pain pill the entire 5 day stay, and the rest of the time I got plain Tylenol. Which didn't do much for me. The five days feel as though time is crawling...but it also went quickly. I won't bore you with each day's progress...but the day I got the chest tubes out was a milestone! And the next day the wound vac came off was good too. You feel so free! So, the strange things I was not expecting: Stars. I would see stars through out the day. I still do, but not as much as right after surgery. I also get 'ocular migraines' and these came on with a vengeance. The PA said it was probably due to anesthesia. In fact, most everything that didn't make sense was blamed on anesthesia. Then there was the pain in my clavicles. Ouch. They hurt so much. It all goes along with having your chest opened. A lot of torque is placed in certain areas, like between your shoulders and your upper chest. The nursing care is beyond care. These people are stellar! They could not be any finer as human beings. In fact everyone I had contact with, from housekeeping to the surgeon were wonderful, caring, compassionate people. I was not prepared for ICU. I don't want to scare anyone who may have surgery coming up, but it was intense. Hence the name, Intensive Care Unit. We stayed at the Courtyard Marriot which is directly across the street from the front entrance of St. Mary's. I highly recommend them. There are other places along 2nd street, but none this close and seriously across from the main entrance. For your support person, this is a good place too. Talk about convenience. There are so many little details I could share, but I fear my post would be too much for the board to handle! There is a McDonald's next door to the hotel for weak moments. There is a wonderful healthy grocery store called Fresh Thyme that is within walking distance and carries water, healthy foods and snacks and wine! Random thoughts: I was very happy with my Old Navy wide leg linen pants. Easy on, easy off, didn't wrinkle. I was very very happy with my 'lounging' bras from Marshalls. Easy on. Easy off. For me, I wanted the support but nothing with wires, hooks, lace. Nothing. Just support. I was very happy I took slip on shoes. I was able to pull shirts on over my head...but it does hurt. I managed to pull on a dress too. We walked to St. Mary's, where you are screened everyday for Covid, got our day of the week sticker, and then we were able to board the free shuttle to downtown at the Gonda and walk where ever we needed. Including our last day there when we went to Chester's. Best place! Yum! Your appetite is stressed, things taste funny or strong, but it all comes back. You hurt. It takes several weeks to move with ease. That is coming along. I started cardiac rehab at the end of three weeks. Early but doable. I started driving at the end of three weeks also. Not advised, but I had too. It was important. Sadly, three days after I got home, my sweet, WWII daddy died. So the stress piled on top of stress. But four weeks later, I still grieve and know that stress management is important. Be kind to yourself. Take each day as a gift, but go slow. Don't over do it. Easy to say. Hard to follow my own advice. I was out walking three miles each day as soon as I could. These are just some random thoughts, thrown out to those who may be on the surgery schedule. There is NO finer place than the Mayo Clinic. You are in the best hands ever. This is your life. It's hopefully a one time surgery for you...so you deserve the best. Thanks for letting me post this. Reporting live from the smoke-filled skies of Northern California, this is a survivor!