Carlos's Journal

Yesterday was 5 weeks post surgery. I have been meaning to post an update sooner but haven’t had a chance. Every day I feel lucky to be progressing with my recovery with no complications and very little pain. I know from reading many of the posts that that can change at anytime so I do not take it for granted. I also feel lucky to have been able to have my surgery done at Cleveland Clinic by Dr. Johnston. I had a very positive experience and am happy to share it with anyone interested. I’ve tried my best to follow the hospital’s instructions every step of the way, some of which were more difficult than others, especially not lifting anything over 10 pounds and not submerging your wound in water (I’ve been wanting to go in the pool with my kids every day since I’ve been back home). But I was very concerned about infection of the wound and have taken care of it exactly how instructed. I have had a few setbacks though. Once the scabs started falling off my incision, I noticed a few sutures sticking out of my chest. Cleveland Clinic was very helpful and explained this is not uncommon then instructed me to have the sutures cut off as close to the chest as possible and that they will eventually dissolve or fall out. Additionally, monitoring my INR has been a bit burdensome. Insurance makes it as difficult as possible to get a home testing kit so until I’m able to get one I am stuck going to the lab once or twice a week. I had one mouth bleeding incident but that resolved itself after a little bit of pressure and ice. My resting heart rate was very high when I first got home (in the 80s), but now it’s back in the low to mid 60s. I have been walking at least 15,000 steps per day in the sand without getting tired. I wanted to start more aggressive cardio but my doctor told me to pace myself and reminded me how much trauma the inside of my body has undergone and that it’s still healing. Good advice, and I’m happy that I finally have a cardiologist who I like. I’ve been through a couple now and I strongly suggest to make sure you like your cardiologist because if I hadn’t switched I likely still would not have had my surgery unless I passed out or had a significant issue. Anyhow, I’m grateful to not have any real complaints so far. My valve is really loud though. My kids say they like listening to it. I’ve been using white noise or a loud fan to help me sleep. I guess that is my biggest complaint. It’s difficult to sleep through the night (as I’m writing this at 2:30am). I start cardiac rehab this Friday and go back to work after Labor Day so I’m hopeful that getting back to a normal routine will help my sleep cycle. That’s it for now, but feel free to reach out. I’m happy to answer any questions and to help you through your journey in any way.

So far, so good. Just waiting for my clothes to get here so that I can leave the hospital. They asked if I wanted to get discharged yesterday, but decided another day of monitoring and room service couldn’t hurt. Yesterday, I did a lot of walking in the hallways as well as a few flights of stairs. The nursing staff at CCF has been amazing. Everyone I’ve encountered here has been so friendly and seem to genuinely prioritize taking care of patients. I still have a lot of trauma to my body that will just take time to heal, but otherwise, I’m relatively pain-free so long as I don’t cough. Coughing is the absolute worse! Also, my deep breathing still isn’t back to normal. I was told this will take several weeks. If anyone has any questions about my experience, please don’t hesitate to contact me.

I’ve finally made it to the Upcoming Patient Surgery Board. I’ve spent the last couple of days at Cleveland Clinic undergoing a battery of tests. I have been so impressed by Cleveland Clinic. It’s by far the most efficient, well-run hospital that I’ve experienced. The longest wait that I’ve had was to get my car from the valet car service! 😂 I now have all the results from my tests. No surprises which is a relief. My angiogram was clean and I found out that the mild calcification on my coronary artery that was shown on the chest CT is actually on the outside of the artery so nothing to worry about. The cardiologist who I met with spent almost an hour with me and my family answering questions and going through my images. My peak gradient from my echo was 111 and the opening of my valve only .5cm. He confirmed that it is definitely time to replace the valve and was surprised that I’m relatively asymptomatic. One thing the cardiologist said that resonated with me is not to think of yourself as unlucky or my condition as limiting, but to focus on how lucky we are with the medical advancements that have been achieved in AVR and the fact that this new valve will extend my life allowing me to get back to being myself pre-surgery. All that is left now is to get anesthesia clearance and meet with Dr. Johnston on Monday. I’ve had a couple of phone consults with Dr. Johnston and have exhausted all of my questions but it will be nice to meet him in person as I have heard from other patients that he inspires confidence and is very reassuring. Anyhow, that’s it for now. I’m going to have a nice dinner in downtown Cleveland tonight, try to keep the stress level at a minimum and mentally prepare for next week. Best, Carlos

With my surgery being only 10 days away, I’ve somehow come to peace with it and don’t have much anxiety. I had a great 4th of July at the beach with friends and family, and even went for a quick surf, probably my last one since I definitely feel short of breath when doing so. At this point, I’m continuing to lightly exercise, eat right and just trying to spend as much time with my kids and family before I leave for Cleveland on Wednesday. My kids are 13, 10 and 6, and I decided it would be best for them not to see me in the hospital during that first week of recovery, not to mention they would have to leave all their friends and be stuck in an Airbnb for 17 days. I did talk to Dr. Johnston the other day and he said based on the results of my chest CT that he would like to do a minimally invasive min-thoracotomy to replace my AV with an On-X valve. I’m hoping that any patients on this site who have had such a procedure or who have knowledge about it can share their thoughts, advice, and what to expect post surgery? I feel pretty good about a mini-thoracotomy being Dr. Johnston’s preferred approach because I had an ASD repair when I was 5 so was worried that I would not be a candidate for a minimally invasive surgery. However, after talking to another surgeon I was told that it all depends on the heart’s size, location and surrounding scar tissue from prior op. Anyhow, that’s it for now, would love to hear from folks about this topic. Thank you.

My surgery is coming up in July and I am traveling from San Diego to Cleveland Clinic for my operation. One concern that I have is the flight home afterwards. My operation is on the 16th and I'm scheduled to fly back home 11 days later on the 27th. The scheduling nurse said that many people routinely fly after valve replacement surgery and that it's safe, but I wanted to see if anyone can share their own personal experience? Just trying to get my mind around what to expect. Thanks.