Amy's Guestbook

Phyllis Petersen  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.

Amy Dorsey  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.

Phyllis Petersen  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.

Amy Dorsey  You are welcome. That sounds like a great plan. Alliance is not far at all from where my family lives in Canton. You will appreciate having a place to recover so close! I think that's about 40 minutes from CC. Keep me posted!

Phyllis Petersen  A little longer than that from my cousin's house. At one point, my uncle lived in Canton. I'm flying into and out of Akron/Canton airport. Please let me know how you're doing also.

Phyllis Petersen  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

Amy Dorsey  Hi Kate. I am doing much better than I was. I still have the pleural effusion but they won't do anything about that. Still have some discomfort near all of my incisions where the muscles and nerves are healing. I'm at Cardiac Rehab three times a week and that helps with my mental state. I'm not quite back to work yet but I did stop by a couple times last week to check in and just being there affected my heart rate in a negative way to the point where when I went to Cardiac Rehab afterwards they would not work with me because my heart rate was too high. My job is stressful so of course my heart rate is affected by that. It's just that since surgery my resting rate is typically between 100 and 105 now, and the stress from my work environment got it up to 130 and 140 resting. I need to get back to work so I'm a little worried about how to keep my heart rate down and not let the stress affect it. I have some anxiety now and I'm trying to figure out what I'm going to do about it. I see my cardiologist this Friday and will talk to him about it. Other than that, I'm not on any medications for pain anymore and that makes me happy. Still having an issue inflating my lungs to full capacity still but they keep telling me it might take months and months so I've accepted that! :) I haven't been on here much in the past couple weeks. How are you doing?

Kate Watson  Hi Amy! I'm glad you are doing better than you were, even though you still have hurdles to get through. I hear you with the high heart rate issues because I'm still struggling with that too. I'm trying to stay extra hydrated so that my BP is ok enough to take the metoprolol. I feel so much better when my HR is lower. I have had to take meds for anxiety because my HR is also being affected by stress. Do you ever try meditation? I find that is helpful to bring my heart rate and anxiety down too. I've also been seeing a therapist to help me with stress management. Is there anything you can do at work that is less stressful to start off, like office work etc? I imagine the pressure you are feeling to get back to work is increasing your anxiety, thus increasing your heart rate. I am finally starting to feel "normal"-well my new normal, 5 months later. Thank you for asking! Hang in there- you've come a long way!

Amy Dorsey  I will tell you what the cardiologist at the Cleveland clinic told me… I had to meet with one before I met my surgeon… He told me that if there's moderate to severe leakage it needs to be surgically repaired or replaced as soon as possible. The longer you wait the more damage happens to your heart which can be irreversible. It needs to be fixed before the damage occurs because if damage occurs and becomes irreversible you will be at higher risk for stroke and afib and death. He was so irate that my original Cardiologist did not send me for surgery right away because now three years later my Atrium is dilated to the point where he doesnt think it will shrink back down and that could've been prevented had I had the surgery sooner. The sooner the better he said and he reiterated that over and over. If surgery is inevitable in your future I would suggest you get it done rather than wait. It's not fun thinking about, trust me I know. Nobody wants to have the surgery but most of us have to!

As far as how I feel… I'm at week six and each week I get a little better...it's not something I can tell from day to day but more week to week. I had minimally invasive and based on every report I read they say patients recover within 1 to 3 weeks… To me that is totally misleading because mine has been much longer and the only thing that upsets me about it is the fact that I was expecting it to be shorter because that's what everyone told me. Every doctor, every article, every everything! I know everyone recovers at different rates but when every article says by week three you should be back at work, and here I am at week six still having pulmonary issues, I just think it's misleading. Not to scare you of course. I just always try to write realistically. One thing I have learned is that its a very traumatic process for the body to go through and of course it's going to take time! I don't feel anything like I did before surgery, meaning, I'm definitely not back to myself yet. As active as I was previously that is the hardest part for me but I know it will get better :-) I just started cardiac rehab and I am hoping that helps :-)

Amy Dorsey  It feels like it's hard to inhale completely. It also feels like you have to take a bunch of small breaths to get enough oxygen. No question is a dumb question by the way!

Amy Dorsey  Hi... I did have the surgery on July 21. It was able to be repaired. I had the robotic minimally invasive procedure... Although I always say I hate that that word minimally invasive 😜 There's really nothing minimal about any heart surgery! I'm 39 now and I found out when I was 36. It was diagnosed as moderate to severe when they first found out but the cardiologist did not recommend surgery. I ended up switching Cardiologists because I wasn't really meshing with that one. Unfortunately I waited three years to get a new cardiologist and when he saw my echo he freaked out. I'm a fitness trainer so no one ever expects when they see me that I have any issue and this new cardiologist was ready to blow me off until he saw the report. He said this must be done now! That was in March and I was able to get it scheduled for July. I'm six weeks out now. I was experiencing shortness of breath and waking up in the middle of the night unable to breathe. I knew I needed a check up so I went to a new cardiologist. It's completely normal that you are freaking out! We all do! And I won't sugarcoat it. No heart surgery is easy to go through, but this is a great support group so keep reaching out. It will help. Listen to your cardiologist. My new cardiologist told me I should have been sent for surgery three years ago when I was first diagnosed.

Amy Dorsey  I just saw this! Thank you for your kind sweet words. I sure haven't felt like a heart warrior I have felt like a big crybaby LOL but it's been rough. I'm so glad you were there for me !! It made all the difference in the world!! How are you doing???

Amy Dorsey  Hi Mary. Thank you! That's so sweet! I'm doing better each week. This week my incision sites started bothering me. They are healed nicely however, now that the nerves are healing it's causing a little bit of discomfort. I still have the pleural effusion but it's small so they won't really do anything for me. I start cardiac rehab this week. They told me I'm a couple weeks early but we are going to start anyway and take it slow. My heart rate is still high as expected...looking forward to getting off the beta blocker though because it's been causing me dizziness and blacking out upon standing. Overall I'm feeling better this week than I have in a long time😊

Amy Dorsey  Thank you! I am getting used to that fact now. I still can't believe the articles I'm reading online saying that after min. Invasive surgery most people are back to life between 1-4 weeks!! That is insane to me! Definitely not the case for me and nothing min. invasive about my procedure!! I'll get there eventually! At least I know the steps to take to get back into shape.

Ted Miko  I was wondering did you train up to the day of surgery ? My doc said that I need to "granny it down" . What does that mean ? I can't imagine what it like not to be able to workout. When I tore my tricep I still trained cardio and legs. From what I've read so far you'll be at it the first chance you are able. I been told by a friend who a boxer "a fighter is still a fighter even when he's on the mat, all that's happened is your fights been moved lower" kinda corny , but it sounds like to me your ready for the next round. Thanks for your log. And Kevin thanks for the hope that after my turn under the knife, I'll be back training again.

Amy Dorsey  Hi Ted. I was working out with weights about an hour to an hour and a half a day 5 to 6 days a week, and doing about an hour of cardio 4 to 5 times a week. When it got closer to surgery I had to stop the weight training but I kept my cardio up because I wanted to keep my lungs healthy for surgery. I was working out with weights about an hour to an hour and a half a day 5 to 6 days a week, and doing about an hour of cardio 4 to 5 times a week. When it got closer to surgery I had to stop the weight training but I kept my cardio up because I wanted to keep my lungs healthy for surgery. Your doctor probably just want you to slow down a bit when he says "granny it down"… That's kind of funny LOL. Mentally it's hard for me because I'm a fitness trainer and fitness is my life and right now I can't do anything really. I've lost a lot of muscle and feel like a skinny squishy person now but I know I will get that back eventually... Just not anytime soon. I'm at week 5 post and not cleared to lift over 10 lbs. mentally I want to push myself but physically I can't and that's not a feeling I'm used to.

Ted Miko  Thanks Amy. I appreciate the answer. Im not quite at as much as you were doing. So in comparison I guess its "grannie downed" lol. Only cardio 30min and wieghts 1hr, 4 days. I'm a heavy duty mechanic so my work day is very active. I guess I'll keep working out until my date or my body says different. The funny thing , when I heard about my surgery the first thing I thought is "how am I going to train" . Which now seem pretty minor after reading all the stories here. It's great to hear about others who are back at it or like yourself being patient but excited about getting at it again. Thanks again for your time.

Lise Bowles  Hi everybody! I have a rash all over my chest and neck, a bloody rash that itched like crazy! I don't know where it came from or what started it but it's driven me crazy! The first few days I was so out of it I just knew I was itching and painful, the nurse said she thought it was from the lidocaine, but not sure why I would have lidocaine when I had robotic? Hmmmmm????
Another question, did most of you get to see your surgeon before going home? Apparently I may not, I may see someone else, that means I met him right before surgery and after for about 20 minutes....shoot!

Clare Auten  Sorry about the rash. Ouch! Yes. I met my surgeon in his office before and he came to see me everyday I was in the hospital. I did not travel to CC though.

PJ Fugitt  Lise, Happy you are on otherside of your surgery. Have been waiting for you to post to wish you well and a speedy recovery. Dr. G came to the ICU for a moment, then later when I was about to be released. In between other doctors came to the room that worked with him. Have you taken a shower? About 2 years ago I was completely covered in hives around Breast and neck. It appeared after taking a shower and the heat and wash used at surgery reacted with one another thus causing the rash. Just another thought. Turns out I am highly sensitive to all of the surgical washes. You may ask what they used. Hope it gets resolved very very soon. Blessings to you Lise.

Sophia Ridley  Lise, I found out through my TEE and angiogram that I'm allergic to some hospital detergent, gowns and surgical scrubs are the worst. I think bedding is ok, but didn't chance it so took my own. Felt like someone was pressing on my throat when I went to tie up the gown and then hours later I had hives, worst on my collarbone as where the seam was and I can only assume more concentrated. I also had high blood pressure and pulse. Antihistamine and steroids is how they treated it. Hope it clears soon.

Amy Dorsey  Thank you! A roller coaster ride it is! I really think most of my issues are stemming from the onset of anemia and the lung issue. Hoping that will resolve soon after these next visits with my medical team!

Amy Dorsey  Thanks so much. 💗 I'm not used to feeling so emotional. It's like I'm not even myself right now. They did do post ex rays. One at discharge and one one week post. The one week post results say the fluid is worse than before. But no one has done anything about it or told me. I just read it in the report online in my patient portal. I'm not sure if they are expecting my primary care physician to handle that when I get home or what.
Thank you for the encouragement. 💗💗💗

Amy Dorsey  Right. I'm so confused. This was an ER doctor at the clinic. He said it was fine to take ibuprofen since the surgery was over but I told him they had told me not to. Since I couldn't remember why they told me not to he said it would be fine but I haven't taken it yet. The surgeons nurse originally prescribed me Celebrex but my insurance won't cover it so I haven't taken that. I have been on Oxy and tramadol but both are not lasting any longer than one hour. The ER doctor told me to start taking Flexeril to relax the muscles and Motrin for inflamation. I'm so confused.

Wanda Mroz  Don't take the Motrin... As in my post on your other post, check with your cardiologist as to what you can take. Try the heat or ice too.

  Defer back to the surgeons office at CC as to what you should take. Emergency room PAs are not qualified to make the call. I had the same problem and I made the ER dr. Call the surgeon and the surgeon told him what was what that was 2 weeks post .

Amy Dorsey  Thank you. My pain meds aren't lasting more than one hour. I tried to get a prescription switch but they made me go to the ER instead. Finding nothing wrong with me they told me it was just post surgery pain and the ER doctor prescribed me Flexeril to relax the muscles, and Motrin, and Tylenol. He told me not to take the tramadol if I take the Flexeril. I've been taking Oxy and tramadol. I'm so confused at what I should be taking. My postop appointment is next Wednesday.

Bob Fessler  I too want to know how you are feeling. Pain should be manageable. They should jump up and help you get comfortable. Please let us know how you are doing.