Lise's Guestbook

Lise: Not sure if you received my other e-mail. I did not have any pericarditis, I know that is is quite painful and quite pesky, hard to get rid of. A good cardiologist is really critical. I had an excellent interventional cardiologist do the follow-up. I do not have any data on the occurrence of pericarditis as a function of surgery, although it did not pop up during my research. I might recommend following up with Jacqueline Cook. She had MVR repair at CC robotic with Dr. Suri, she did have pericarditis so she can probably provide some guidance. She may also provide some guidance about her response and recovery. Michael

Hello Lise, Thank you for your comments on my guestbook. Would you be willing to chat live by phone sometime? That would be more meaningful than back and fourth by email. Ben

Hello Lise; I was reading your journal as I am having a Robotic Mitral repair at Mayo Rochester in March. Your experiences seem to match another very athletic young woman that had the same surgery at CC and she reported the same significant discomfort that you reported. My surgeon at Mayo said that they use 3 incisions instead of the 6 you reported and patients are usually discharged within 3 days and back to work within 3-4 weeks. I would love to "pick your brain" about what to expect and what else to ask the surgeon before I have this procedure. Want to make sure I'm fully prepared mentally, physically and emptionally before having it done

Hi Lise, this is Bert. I just read your note you posted on my guestbook. I think it's impossible to know all the details of your particular fallout but I can tell you that I did have many of your symptoms in the first year post-op. What happened to me is that the pains and rounds of AFIB and breathing restrictive feelings got better very slowly during that first year. I didn't start feeling closer to "normal" till 2 years had passed. I have had to accept a new normal of some restrictiveness in my breathing still, a resting heart rate that is about 20 beats too fast, and a major slow down in my running (I just can't get enough breath and my heart rate is too high). I don't live in Cleveland and so I can't just drive up there to do follow ups and they have not been interested or communicative with me at all. Finding local help has been almost impossible and they're all kind of guessing as to what is wrong (or insinuate that I'm fabricating symptoms, or that because I can "run" at some level, I must be doing great). I think I will need to do another push towards getting a re-evaluation at a respected clinic though because I have concern about just ignoring these sensations long term. Anyway I hope that helps in some way.

Lise, you have been on my mind today. I do hope you are feeling a little better. Please know that you have many people pulling for you. I am sorry you are going through such a hard time. Please keep us posted.

Awww...my heart breaks hearing how miserable you are!! 💔 I know what you're going through and so does everyone else on here who's been through it. Sending you hugs and prayers. One day at a time sweet lady. Keep us posted when you are up to it. Xo💗💗💗

Hey Lise.... Almost there!!! Hang tight , few more days and as the people on the other side said, the worst part will be over.... Waiting!!!! Praying for you! Xoxo

Lise go to the Cleveland Museum of Art. It will take the anxiety away for the time you are there. It is like a mini Metropolitan Museum of Art and has a fabulous collection. Go in the area called Gallery Two which has a 4500 collection of digital images of there permanent collection and where to find them in the museum. There is an area also called Little Italy. I did all of this using uber for the first time. Also across from the museum is the Case history museum and the Botanical Garden which is beautiful!!! There is a shuttle I believe you can take to these places to. Enjoy the weekend and get out of the hotel to breathe!!!! Hang in there! We are there with you all the way!!!!! Blessings.

Hi Lise- have not been on site for a while. Still in Cleveland at rehab before heading home to San Antonio, Texas on Monday. See you are having surgery on Tuesday with Dr. Gillinov. Hope all goes according to plan. As you have seen Amy Dorsey was a week ahead of me with Robotic surgery by Dr. Gillinov. I was hoping for it but my last two tests at the clinic I did not pass for robotics. Found out the day before and had open heart median sternum. Wishing you the best and you will be in my prayers. CC is wonderful and you are in the best of hands. Keep the faith as you have done one moment, one day at a time. Blessings.

Prayers for you next week on your surgery. You have an excellent surgeon and the Cleveland Clinic is amazing. I am getting discharged today, my surgery was last week, Thursday August 4th. This is an amazing hospital and I thought the care was 5 stars! Looking forward to reading your posts post op!

Hi Lise, I found Rescue Remedy at GNC today. I haven't tried it yet but I am thinking positive about it and determined that it will help when I need it. I saw your surgery date on your story page now says the 16th. Did they change your date too? Mine is now scheduled for the 17th.

Hi Lise! You're so sweet! I was wondering the same thing when I saw my incisions! The 5 inch incision is more like 4 inches. I also have a 1 inch incision directly under my nipple And 4 puncture sites. They definitely did the robotic but I do have those two incisions. I thought about posting one of the pictures, but it shows half of my breast so I opted not to LOL. Just so you know, they are healing so nicely! No one will ever know I had surgery by the way they are looking now. They said minimally invasive is more painful than the sternotomy because they have to go through muscle and nerves and I had more muscle than most to maneuver around. I am at the two week post mark and finally the pain is manageable. I had my post op appointment yesterday and met with Dr. Gillinov's nurse. She told me not to worry about the blood clot and she hoped the ER did not scare me. She said it is in the small veins in will never get to the deep veins. I have tried sleeping everywhere you can think of. Most comfortable thing so far has been in a recliner, but if you have enough pillows you can get comfortable in bed. I don't think you will need to go buy a recliner. If I were at my house in Virginia I would not have a recliner. I am just taking advantage of my dads but most of the time I'm in the bed when I'm sleeping. Today was the first day I could almost lay flat without excruciating pain. Little by little I'm getting more sleep every night, but at first don't be surprised if you only get an hour at a time. I wish I was still going to be here for you because I would love to meet you in person. I'll be thinking of you and praying you have a speedy recovery with less pain than I had. 💗💗💗

Hi Lise, the aftercare was very good for me, however, I did notice a difference between the weekend staff and the weekday staff. The weekday staff seemed more helpful. My surgery was on Friday, so I tried to sleep through most of Saturday and Sunday. The pain meds helped. Two hits on the button, and I would sleep for another two or three hours. I did wake up to watch the NBA final game Sunday night. I'm not a NBA fan, but since everybody in the hospital was, I felt obligated to pull for Cleveland! I feel that you just have to pay attention to what is going on. My daughter, who just started her fifth year as a general surgery resident, was there until Monday. She had lot of experience with what I was going through. However, I think she and my wife enjoyed spending time together than worrying with me. Anyway, just communicate well with the staff. They're human and have their jobs to do, but they really seemed to want to help, some more than others. One thing that I have found to be the case in this whole journey is that you need to be proactive, but in a nice way. You should do fine!

Hi Lise, I just wanted to put your mind at ease about Cleveland Clinic. I didn't mean to scare anyone with my experience. I feel bad I posted it in so much detail, but a handful of people were really wanting to know how everything went and I was so traumatized I needed to talk about it. I really think it being my first time in the hospital ever it was a bigger impact on me then maybe it would have been for someone else. Don't worry your mind over that! Just make sure you voice your needs. I've been back twice since I was discharged and everything was fine both times. If you feel you need better attention just make sure you speak to a nurse practitioner. The lady who was so wonderful for me after everything I experienced...her name is Sandyi Zampino. She was my angel💗 I have one more appointment next week and I'm going to make sure I find her :-) I think I will just be leaving Ohio when you have your surgery. I wish I was going to be here so I could visit you! PJ is in recovery now. I'm going to visit her next week and see how she is doing 💗 Another plus for you is that your surgery is not at the end of the week like mine was. So you'll probably have all of the more senior nurses.

If you stay at one of the hotels near the main clinic, you're about 20-25 min from the convention center, should not be too much convention guests. The Intercontenental hotel has 2 separate buildings on the Cleveland Clinic campus, the convention center for the clinic and the suites. They are use to dealing with patients and families getting care at the clinic. We stayed at the Intercontenental Suites, 2 blocks from the Cardiovascular building. It was easy and pretty comfortable. There may be a Holiday Inn open next door now. I was there last summer. Let me know if you have more questions.