Bill's Heart Valve Journal

Kathy Sansone posted a note for Bill that says: Hi Bill! I'd like to leave you my email so we can share stories about our experiences. Dr. Glower originally said I'd be going home on Sunday but they've told me I can probably go home today! Just waiting to confirm that- anyway my email is kathy.s.sansone@gmail.com and I look forward to chatting with you

Adam Pick posted a note for Bill that says: Woo-Whoo! Great job Bill!

Kathy Sansone posted a note for Bill that says: Hi Bill! I'm glad your surgery is over and just wanted to let you know I was thinking about you and praying you are having an easy recovery.

Sue Tom posted a note for Bill that says: Bill, sending you best wishes for successful surgery and a smooth recovery. Best of luck!

Kathy Sansone posted a note for Bill that says: Hi Bill!
Just checking in 🙂 I met with a local surgeon today but I also have an appointment with Dr Glower on 8/9! I see you set your surgery date. That's not too far out... I guess he wasn't super booked up, that's good. I really want to get it over with. Good luck to you!
Kathy

Louanna Miller posted a note for Bill that says: Good to hear you are pleased with your surgeon. Keep us posted on how you are doing and when your surgery is scheduled. I'm seeing a surgeon August 8.

Kathy Sansone posted a note for Bill that says: Hi Bill,
I am following your story because I live in SC as well and I also need mitral valve repair done. How long did you have to wait for your appointment at Duke? My cardiologist is supposed to be referring me there because I don't want to have surgery at the hospital he is affiliated with. I am still waiting for someone here to call me to set this up, and hoping I won't have to wait long for an appointment. I too would like to request Dr Glower.
Thanks
Kathy

Mary Jones posted a note for Bill that says: Hi Bill, With regard to your question about the ride home, you may want to think about a few things. For one, you'll probably be on a diuretic, so prepare for possible frequent pit stops for bathroom breaks. Bring extra pillows to sit on and for your back if vibrations from the ride are painful or bothersome. I was sent home with a "pain ball" thing that was filled with a liquid numbing agent. The pain ball distributed anesthetic to the incision site and was motion activated. Once the liquid is gone from the ball, you are told to pull out the small plastic tube (planted just under the skin) and discard the ball. I think the liquid ran out later that evening, so maybe about 5 or so hours after I was discharged from the hospital. Shortly after you remove it, the pain is much more noticeable at the incision site, so hopefully the thing lasts until after you arrive home.

You haven't met with the Duke surgeon yet, correct? Definitely ask him about the ride home, what to expect, what to bring with you, should you get prescriptions filled in NC or wait until you get home, etc. Fortunately, I only had about a 20 minute drive home, hopefully some on this site who have traveled both by car and plane for their surgeries can comment on their trip home and what that was like. I think some may stay in a hotel and go home the next day? The first night is tough, so you may want to be home (I think I would).

Also, I had to both weigh myself (twice a day, am and pm) and take my temperature once a day and record all numbers, so if you don't already have them, get a decent digital scale and digital thermometer. Spikes in these numbers aren't good, I was told that weight gain of 5 lbs or more and spikes in temperature mean a call to the surgeon's office (I didn't have either situation, which was good). You will most likely have a lot of water weight post surgery that you will lose in the following week or so. I think I dropped about 15 lbs in a week - week 1/2 period immediately after surgery.

Also, one thing I did that was really stupid was I forgot about the shower instruction of lukewarm showers only at first and took a hot shower that first night at home. Had a bad bout of hypothermia immediately following the hot shower I took that night and put on about 5 layers of clothes to warm up and was shaking violently. Not fun! So remember....lukewarm temperature showers at first. But I had anemia when I came out of surgery and they had a challenge getting my body temps back up to normal, so that may have contributed.

They will likely give you written instructions in the information packet they give you when you are discharged, which has a lot of good info, list and instructions about prescriptions, physical activity, etc..

Mary Jones posted a note for Bill that says: Hi Bill, Great news about the cath results. Here are a few pointers moving forward. No matter how they go in (full sternum or minimal side portal), this is all open heart surgery, one is open chest the other closed chest. Remember that this is a massive and invasive surgery that will take a long time to recover from fully. If you have an experienced surgeon, team and institution then the surgery itself isn't the hardest part (although it's no fun at all, but not the biggest obstacle). No sugar coating, this can be a life saving and life changing surgery simultaneously. You won't be prepared for the exhaustion post surgery that can continue for a LONG time after, but much depends on age, situation and specific heart (and other medical and life) issues.

Something called "pump head" is real. It is the inevitable effect of this type of surgery on the brain. When you get home post surgery, your brain and memory will be fuzzy. Prior to surgery, write down all email, social media, billing, bank, etc. user names and passwords and put them somewhere safe that you will find when you get home and are back on the computer.

At some point post surgery, request your post-operative report from the surgeon's office. This will have all details of the procedure that you will want a record of, and your cardiologist and primary care doc will also probably ask to see. You want to have your own copy as well.

They will send you home with a spirometer (sp), a thing that you breathe into to help your lungs re expand. This is very important to initial recovery, use the thing as much as possible/tolerable. Also, have multiple pillows or a "wedge" pillow, laying flat may be a problem (major coughing) for a few nights.

Be prepared for the fact that the only people who can truly empathize with your recovery will be those who have been through it or perhaps have been close to someone who has. Those are the people to listen to, all others are pretty superfluous. Go with those who are non judgmental and supportive, not those acting in their own interest (a tough pill to swallow, but there it is). Most important, this is a highly individuated experience. It's different for each of us, not right/wrong, just different.

Daniel Pastore posted a note for Bill that says: Hi Bill,
To keep it short, two weeks out from a true minimally invasive, four procedure surgery performed by Dr Joseph Lamelas, Baylor College of Medicine, St Lukes Hospital, Houston Medical Center. Repaired mitral, tricuspid valves, closed off LAA, AFib cryo MAZE procedure. I believe Dr Lamelas is the most innovative, forward thinking surgeon on the scene today. He has performed many thousands of these specialized surgeries. I read every book, watched every YouTube conference, every interview and teaching video available, interviewed four surgeons between Cleveland, OH to Hartford CT over a two year period to make this decision. Surgery on morn of June 26, walking the floor unassisted same day in ICU. Released four days later. Flew back home following Tuesday, driving Wednesday, no pain management since release, crescent shaped incision under my right pec. Worse pain was the drainage tube. Healing quickly, full muscle mobility. At 71 I expect to me windsurfing in Brazil in OCT/NOV. Bill, you deserve the same. Best of luck!

Mary Jones posted a note for Bill that says: Hi Bill,
Here is an informative Youtube video by the surgeon I was fortunate enough to have, he a true expert in Mitral minimally invasive repair. He is Dr. Paul Massimiano at Inova Heart and Vascular Institute in Fairfax, VA. (I think now he is at another hospital in the area.) Here's the vid: https://www.youtube.com/watch?v=jgA5_LV6WGY#t=18.522562. Don't be too freaked out by the graphic "views" in the video (or just skip over). I believe Adam has visited Inova a few times. Another expert in the field in Dr. David Adams, Adam (this website's founder) did a webinar you should watch, https://www.youtube.com/watch?v=cDffrMVA4NU.

Lynne Jeffreys posted a note for Bill that says: Hi Bill, hope your appointment went well. My 2 cents worth on minimally invasive surgery. Mine was a bicuspid valve that was replaced in 2015. It worked out okay with less pain than if I had a sternum cut. I did have a problem 1 year later and tore open the whole incision and had a long herniation which required a second surgery. This type leaves the area maybe a little weaker but I would still do it over again.
The cardiologist said that this surgery is much easier on the patient than the surgeons.
Warmest wishes for whatever you decide.
Lynne Jeffreys

Mark Reimers posted a note for Bill that says: Hi Bill:

I had the minimally invasive surgery to replace a bicuspid aortic valve a little less than a year ago. The surgery went smoothly and the recovery was quick. Based on my experience, I would go that route again without a second thought. I'm hiking 3 to 5 miles a day now and getting back to the kind of shape I was in pre-surgery.

Good luck to you. I'm sure all will go well.

Best wishes!

Barb Edmonds posted a note for Bill that says: Hi Bill - I had minimally invasive mitral valve replacement (porcine tissue valve) a little more than 13 months ago - I was 56 at the time. I was in good physical condition, calcium score of 0 and angiogram showed "pristine arteries" (Cardiologist's words). This made me a good candidate. I had a right thoracotomy. Everything went very well and I recovered fairly quickly - taking advantage of cardiac rehab for 12 weeks following. Don't skip cardiac rehab - not only is it a vital part of your recovery but it is nice to visit with other patients who "get it" when you tell your story.
My only lasting problem is fatigue. I hope to regain some of my "spunk" but it has been a long year. I sometimes have to push myself to get to the gym but I know that the payoff is worth it.
Best of luck to you - I pray for a quick recovery for you.

Susan Lynn posted a note for Bill that says: Welcome, Bill. There's a whole bunch of us who have had mitral valve procedures. If you have any questions, please don't hesitate to ask. We'll be here cheering you on!

Steven Methot posted a note for Bill that says: "Let's get her done". We say something like that up here too. All the best on finding a surgeon and a date to get her done!