Susan's Guestbook

Susan Eckermann  Hi Larry. I was released from the hospital 1 week ago today, 5 days post-surgery. My incision was closed with surgical glue and a "Pico" bandage applied. I'd never seen or heard of this bandage before but learned it is a "negative pressure wound therapy" designed to "draw out excess fluid and protect the wound." It came with a small battery pack that I easily carried in my pocket. The Pico was removed during a post-op appointment about a week after my surgery. Surgical staff advised me to leave my incision uncovered as much as possible, and to not use any creams, lotions, or anything else on the incision site. For daily cleaning, they recommended showering with the water spray on my back, allowing the water to gently stream over the incision site. This has been working well, and my incision looks very good… better than I anticipated. I'm still surprised at the lack of significant pain. Perhaps as the incision heals, and nerves awaken, the pain will come, but so far, I'm pleasantly surprised at the very low level of discomfort. My surgeon and cardiologist both recommend rehab and will provide the referral about 3 weeks post-op. I'm really looking forward to it and will do as many sessions as my insurance allows. I love the idea of exercising under supervision and with monitoring as I regain my strength. That brings up another major positive after the surgery. Prior to surgery, Knowing I had severe MV regurgitation, and was frequently in a-fib, I was frightened that something bad would happen (mainly stroke) before I could get to surgery. I no longer have that fear. Having the issues resolved and being able to have some peace of mind that I am no longer at very high risk of stroke is invaluable,

Happy Thanksgiving! I'll be following your journey. The waiting really is the hardest part. Keep preparing and educating yourself. Knowledge brings some peace of mind in this process. Also know that this is a challenge you will conquer and you WILL be stronger on the other side.

Donna Casaletto  Maryann, where did you have your surgery? I’m from Massachusetts too and having my surgery at Mass General this January 😳

Richard Munson  Wow, i had mine in january at mgh. Maybe you will be in the same room? It has a window, most don’t. 

Donna Casaletto  Richard did they give you a heart pillow? That’s too funny about the one room with the window 😂🤞

Richard Munson  They gave me a nurse to hug so i forgot about the pain. Maybe i was delirious. If you get the bed with the too tall freak extension it was for me. 

Donna Casaletto  You’re hilarious 😂‼️Seriously, I’m thinking of purchasing a pillow on Amazon if MGH doesn’t provide them. I’m only 5”2 so I will not need a bed extension😉‼️

George Gardopee  Susan - Good luck tomorrow. I’m hoping you’ll find that this is not nearly as bad as you anticipated. You are likely only a few short weeks from feeling great again.

Adam Pick  You got this Susan! And, thanks Tom for providing Susan insights about your experience at Hoag in Newport Beach!

Susan Eckermann  Thank you so much, Angela. Today was my final pre-op which was a lot to take in. I left feeling prepared and confident, though. My son & I spent the evening assembling his new bunk beds… not the quality mother-son time I'd hoped for… those foreign instructions are difficult to follow…but time together nonetheless! I am very confident in my surgeon and know recovery will be challenging, but all the wonderful warriors here have prepared me well for what lies ahead.

Klara Čičić  Oh dear Susan, I am so glad you are at peace and so confident! Everything will be fine and you will become even stronger after all of this. 

Susan Eckermann  Hi Scott, thank you for your well wishes. I was hoping for the robotic/ minimally invasive surgery, but after the last CT scan with contrast, in discussions with my surgeon, he recommended the sternotomy due to the width of my chest (lack thereof I think), difficulty of potential repair - I have 60-70% chance of successful repair due to various issues, and there is a lot to do- they will remove the pericardial cyst, and clip the left atrial appendage. Yes, the waiting is definitely challenging. I'm anxious to get through surgery and start my recovery. Since my diagnosis about 10 months ago, I don't think I've gone to sleep once, where I haven't thought to myself, "What if I don't awaken tomorrow?" "What if the A-fib causes a stroke?" . . . along with a lot of other dark thoughts. My MVR is severe and I am frequently in A-fib, so I am anxious to regain some stability with my health. On the bright side, I am otherwise in great health, and my surgeon predicts a good outcome and strong recovery. My diagnosis came about only because I overate -indulging in my son's leftover Chick Fil A chicken strips and lemonade, creating a monumental (and my first ever, thankfully) case of acid reflux, which sent me to the ER, leading to the ER doctor discovering my heart murmur and referring me for cardiology follow-up. I believe a good physician and God's intervention brought me to where I am today, and for that I am eternally grateful.

Klara Čičić  Wow what a story Susan...I didn't know that...About these thoughts "What if I don't awaken tomorrow?" "What if the A-fib causes a stroke?"  I can so relate to that :)))))) but now after the surgery, these thoughts are less, now I feel more confident in my body and don't thing it will betray me so easily now it's fixed :))))

Susan Eckermann  Thanks so much, Terry.  I am anxious to have my surgery and to start recovery. As other patients (and the late great Tom Petty) have said, at this point, the waiting is the hardest part.  I feel very ready , thanks to the knowledge and advice shared by many on this site. One of my biggest concerns is that I am a single parent of a 12 year old and am wondering how much, if any, help I’ll need at home during recovery.   Any thoughts on this? 

Ana Brusso  Hello Susan, I prepared meals in advance that I could freeze. Keep everything you will be using on the counter or table so you don’t have to stretch up your arms. Taking showers you will need some help or a lot of help, maybe a chair in the shower can help and a long shower head. Lots of pillows to sleep or a wedge or a recliner. If you have questions ask away. We are here for you. God bless you 

Susan Lynn  Susan- I had a mitral valve and chord repair and had a pretty easy recovery. You've already been given some great suggestions to prepare in advance. I agree with the shower chair, too. Keep your showers short and the water warm (not hot) and you will likely be fine. Best of luck with your surgery!

Klara Čičić  Susan, regarding taking care of the kids, I can say that now after 5 weeks I could take care of them. Although it is not the same since mine are small, but just to have some perspective. (thank God my mother-in-law is still with us until the end of November, so acctually I don't have to, but if I needed to, I really think I could). You might want some help for the first maybe 2-3 weeks with the kid...

Thomas Brusstar  My 13-year-old son knew not to jump on me after my open heart mitral repair!  But by about a week later I could take care of myself, just had to be careful lifting things and yanking things (like freezer drawer).  Definitely stockpile easy food for a few weeks.  I went I. Tuesday morning, and Tylenol was all I needed by the time I went home Friday for dinner.

Terry Tannenbaum  Hi Susan, Once you're released from the hospital and cleared to return home the only restrictions you will have are driving and lifting. I returned hom last Monday via jet and my biggest problem now is boredom because i can't drive but other than that, preparing food, showering, walking, even swiffering and mopping have resumed. Just pace yourself and know your limits. Is your son able to assist with meal prep? Mine is 17 so he's been a Godsend. 

Susan Eckermann  Thank you all for the good suggestions.  My son is a “young” 12, but is eager to be helpful, so we are preparing and freezing some easy meals. He assembled the shower chair and helped me to prepare the downstairs guest room for my first few nights home.  As I’ve involved him more, it’s become an empowering experience for him and he wants to do even more, which is nice. Feeling so prepared and ready at times, but sometimes, especially at night, the doubt and fear start creeping in. Got to keep the positive outlook going on this homestretch. 

Thomas Brusstar  I definitely tried to de-mystify it so my son wasn’t too afraid.  But I didn’t let him visit until I was in regular room, either:  I didn’t want him to see me all tubed up with the ventilator right after surgery.  He was fine.  He visited like dinner time and we watched tv and he ate my cake.   Over the years he had always watched tv with his head resting on my chest.  Funnily, after surgery he said he liked the old heartbeat better!  It was more soothing with all its swooshes.   I never knew he was listening!