Amy's Guestbook

I'd be interested in hearing how both of you are doing and what the doctors discover about your strokes. It's good to hear that you're getting back to life Ben and there are plans to follow up. I hope you both find answer and the confidence that this won't happen again.

Hi Phyllis! Try not to worry about things too much. I know it's scary thinking about everything. I was terrified going in but I went in optimistic. While my aftercare was less than I expected I truly think a big part of it was weekend staff and new nurses in training which was eventually explained to me by more than one head nurse. I had good care from the more experienced nurses when I requested them... which I didn't feel I should have to do being fresh out of surgery but you have to make sure your needs are met properly… And I'm sure every hospital deals with that at some point so just keep your eye out for that after surgery and speak up for yourself. Everything else I experienced at Cleveland Clinic was fantastic. And Dr. Gillinov is a fantastic surgeon and top in the world so you definitely have nothing to fear there… You should feel 100% confident in having him as your surgeon!!! My local cardiologist still can't get over what a fantastic job he did on my repair. And he is also really great about answering any questions post surgery very quickly. I actually emailed him yesterday and he returned my email within five minutes. As far as recovery goes, I also know everyone is different, however, not many people on here have had the robotic heart surgery. I'm not sure which surgery you are having. The robotic surgery took much longer to recover from than any articles I had read leading up to it. I am on week eight and finally feeling ready to go back to work. All the articles mentioned recovering between one and three weeks which I thought was absurd and made me feel really bad during my recovery like I wasn't recovering fast enough. Being a personal trainer I was expecting to fall within that category but I didn't nor did the other person I know that had the same surgery. So if you're having robotic just plan on probably taking some more time than you might expect to recover. There was a lot of muscle and nerve cutting which was really painful... And I'm used to having muscle pain but it wasn't the same as strenuous working out in the gym! I've actually spoken with the people from the hospital that call to check on patients post surgery about rewriting some of those articles about how fast the recovery is for robotic surgery. I really think the articles are misleading and they should have more patients giving input on their experiences with that. I'm not saying either option of surgery is worse or better than the other, but I have a known people with the sternum surgeries recovering sooner! At any rate, all of these surgeries are very traumatic on the body and in the big picture eight weeks really isn't that long to have just gone through what my body has gone through so I have stopped beating myself up for the slow recovery :-) My pain stopped being as intense at about week six, and now I just have some nerve discomfort near my incision sites and my right side. I am finally able to start lifting weights again which makes me very happy :-) I am just trying to deal with my high heart rate now which I have been told is normal to be so high after valve surgery. I'm still between 100-110 bpm resting so my Cardiologist really wants that to come down (it used to be between 47-55) but it will take some time and I cannot be on beta blockers so it might take longer for me. Thank you for checking in. I hope you have a complication free experience! And keep me posted as well. If you're able to keep contact when you get in there do so and if you have any issues which I hope you don't, let me know. There was one lady in particular there that was very helpful to me. Thanks for reaching out and keep me posted! As a sidenote, I went in there with way too much stuff thinking I would be bored, when in all actuality I didn't use any of it other than my blanket, robe, and phone. Between pain management and nurses coming in the room every hour you really won't need or want anything and they have everything you could possibly need.

Thanks for all your advice. My sister is coming out and will be there from the day before surgery for a week. She'll be staying at the Holiday Inn on the campus, so if I feel like I need anything, she can bring it. She's a priest and so a take-charge sort. After hearing your experience, I'm glad she'll be close to advocate if needed. I just realized I don't own a robe anymore. I, too, have family not too far from CC, in Alliance, OH. I made plans to go there after the hospital. I understand wanting to get back to lifting. I was never quite at your level, but still enjoy the feeling of that last tough rep in a set. It's the cardio I have to push myself to do more. Thank heavens for intervals and anything dance based. I hope you're past the worst and everything will be forward moving now.

After your post today, I reread some of your earlier ones. I had surgery last Thursday. I don't know if it's because my heart hadn't enlarged yet or that I have super high HDL, which keeps my arteries pretty clean, I've had a reasonably easy time. That first day after surgery, I just slept a lot. I wondered whether I should be making more of an effort as I saw others doing, but my body just wanted sleep and pain meds. Friday night I was moved to a room on J6-1 unit. I had an experienced nurse with a trainee who is near to being on her own. I also had respiratory treatments 4 times a day (I have asthma), plus others poking and prodding. I was fortunate to have very pleasant staff who took excellent care of me. On Saturday, a physiotherapist came and took me for a walk. Then, she went over my walking program and stretches for me to do. Saturday night, I was put on bundle care, which meant monitoring was done before 11pm or after 6am, unless there was a real need. The nurse did bring me pudding and oxy during the night when I needed it. On Sunday, I was allowed to shower and go to the rooftop terrace for a half hour. Monday I was able to leave. I'm sorry your experience wasn't as nice. My biggest issue has been with mucous and blood in the lungs. It really hurts to cough, but it has to come up. I had to get a surgical bra on the 3rd day too because the pain from my breast was awful. I've had surgery before and live with chronic pain, so I may have been in a better position mentally to deal with it. I had a brief issue with blood pressure and sugar levels. My resting heart rate is elevated, and by diastolic pressure was lower than usual, but they were improving, so hopefully they will even out in the future. Iron is low. I think that thanks to you and the other people on here, I was well prepared to ask for what I needed. I did have a problem getting food in a timely fashion, but my sister at the least was bringing me my favorite morning tea and helping me out. I'm glad to hear that you are finally seeing the real progress you need. Every time I have pain or tiredness, I try to remind myself what I've been through and try to be more patient. I feel fortunate not to have the problems that so many others have had. I hope that continues. I am shocked by the incision sites, but I'm hoping they get much better. Take care! Phyllis