Adam's Journal

This weeks marks 1 year since my Ross procedure! It's been awhile since I've posted here, but I still check in frequently and read y'all's posts, and I appreciate all the help you all have given me and everyone else here. A recap of my story: I was at the cardiologist for a something unrelated, and when he listened to my heart, he knew something was up. I was completely asymptomatic as near as I could tell, so when the TEE I had later came back saying I needed open heart surgery within the next couple months, it was a big surprise. Those couple months between diagnosis and surgery felt like about 10 years, what with all the decisions to make, all the fear, all the questions, all the worry. This last year since the surgery has gone by like a month or two. I was hoping that even though I was asymptomatic, that I'd feel like a brand new superman or something after I recovered from the surgery. I do feel better, but I'm still the same old me who needs to exercise more. :-) For years, I've struggled with panic attacks that can ruin an otherwise good day. Of course, hearing that I needed open heart surgery sent that anxiety into overdrive, and I was worried about the psychological toll going through something like that would take, especially since most of my anxiety and panic attacks were health-related (I try real hard not to be the annoying hypochondriac stereotype that I'm sure doctors *love* dealing with...). Everybody's different, but I'm happy to report that my anxiety and panic attacks have been much better now that I've recovered. I think the combination of being physically healthier (even in small ways that I might not realize or feel), and the, uh... character-building experience... of surviving open heart surgery have helped to change my perspective a little bit. I still get the occasional panic attack out of nowhere, and it still sucks, but I just feel more confident in general now. I've had my 6-month and 12-month followups, luckily with nothing "exciting" to report, so at this point I'm just keepin' on keepin' on. To Adam Pick for running this place all these years, and to all of you for posting here, thanks again, so much, for all of your stories, encouragement, and information. It really, really helped me navigate through all of this, and it was so, so comforting to be able to talk and vent and discuss with people who have been/are going through it. ❤

Minor Victory of the Day: Just now, for the first time since my open heart surgery over 6 weeks ago, I sneezed! "Who cares, Adam?" I care! My father-in-law had his open heart surgery years and years ago, and he told me he can remember the exact time, date, and place when he first sneezed during recovery, because it hurt so bad. So, my whole recovery, I've been dreading my first sneeze. Somehow, I managed not to sneeze for over 6 weeks. Just now, I sneezed twice, and it didn't hurt at all. I guess my sternum is healing after all!

It's been a little over a month since my surgery (I had the Ross Procedure, and they also repaired my ascending aortic aneurysm), so I thought I would give an update. It is so, so hard to believe that the surgery a) has already happened, and b) happened a full month ago. When the folks on this site said that the waiting part is the hardest, they were right (in my case, anyway). Recovery has been no picnic, but it has been easier and quicker than my wife and I were expecting. Since I've been home, I've had one episode of what I think was A-fib. My cardiologist told me to let him know if I experience anything else, but for now, we're just keeping an eye on it. I'm still on Amiodarone, though they lowered my dosage. They also took me off the Lasix and potassium they had me on. I start cardiac rehab in mid-September, so for now I'm just trying to walk as much as I can to build up my endurance. I don't recall exactly when it happened, but sometime during week 3 and week 4, from one day to the next I felt less... frail, all the sudden. I still hurt, I'm still sore, and I still can't lift more than 10 pounds, but I went from feeling like I might just fall apart, to feeling a lot more like my normal self. After about 4 weeks, my surgeon told me I could go ahead and drive, so long as I was no longer taking any narcotics. I still didn't feel up to it, so I held off for about a week. This week, though, when I had prescription to pick up nearby, I decided to go for it. Luckily, I'm still alive, and so is everyone else on the road. :-) The main issue I'm dealing with now is my incision. It's healing nicely, except for a few areas that have, for lack of a better and less gross term, come open a little bit. It's not like I can see clear into my chest through it or anything, but there is some drainage going on. I've visited my surgeon about it, and he doesn't seem too concerned. He put me on some antibiotics and a new wound-care routine, and it seems like things are improving, but I will definitely be glad when all this is all completely healed up.

I took a shower in the hospital today, mostly by myself. Well, ok, I had to have like two people help me at first, but then I got more than like three seconds of privacy! It was great! (I seriously appreciate my nursing staff, though. They've been great, and have done an excellent job of keeping me alive.)

I don't really have much to say, but I thought I'd give a quick update. I'm still in the hospital, but other than some oxygen issues I'm doing pretty well. My dependence on oxygen is decreasing, and there is a chance I might get out of the hospital on Sunday. We'll see. I'm anxious to get home, but I don't want rush things. Thank you all for all of your support!

Adam is doing ok today. He's feeling pretty nauseous, but he was able to take a very short walk. He'll probably start getting more energy once he feels like eating!

Adam should be ready to start writing his own updates soon! He's doing better this morning and will be moved out of ICU today. The surgeon came by and said that everything is looking good.

Adam's wife here again. He's doing ok but will have to stay in ICU tonight. At 6:00 this morning, they moved him into a chair and had him sit there for four hours. He was in a much better mood once they let him lay back down. He's had a bipap breathing mask on all day, but his oxygen level isn't high enough to leave the ICU. Other than that, and some pain and nausea, he seems to be doing relatively well. He's getting a little bit of sleep off and on.

I need to be at the hospital for my surgery tomorrow at 7 AM, it's 2:30 AM now, and I haven't been able to sleep. Luckily, my wife is driving me there tomorrow. I'll be so glad to get this over with tomorrow, finally.

Yesterday, I went in for my pre-op testing, and that all went well. I even felt comforted seeing all the nurses and staff involved, and how all of this seemed so routine for them. So, all in all, I was feeling pretty good about everything yesterday morning. Then the surgeon's office called to move my surgery up 2 days, making it happen on July 22nd instead of July 24th. I am fully on board with moving the date up, as I want to get this over with as soon as possible. Still, though, getting that call just wrecked me, emotionally. I have no idea why, but I was a mopey mess pretty much all day yesterday after learning that the surgery date had been changed. Luckily, I'm feel better about it this morning. I'm still having a hard time being positive, though. When I think about the future, it pretty much stops on the surgery date, like I'm having trouble seeing past it. Various wonderful and helpful people in my life are trying to make plans for this or that during my recovery, and it's like it's impossible for me to focus on anything past the surgery itself.

So, I've chosen a surgeon and set a date. I'm going with Dr. C. Craig Elkins at Integris Heart Hospital in Oklahoma City, OK, and he's going to perform the Ross Procedure bright and early on Wednesday, July 24th. If for some reason the Ross Procedure won't work out (if my pulmonic valve is bicuspid too, for instance), then the backup plan is a homograft (human donor tissue) valve. ... anybody got a barrel of Valium I can borrow?

I met with a surgeon earlier this week. His suggestion for me is to get the Ross procedure. For some reason, I hadn't been considering that as an option for me, but it's what he recommended. I asked him how many Ross procedures he's done, and he said he's done over 200 of them. That seems like a lot to me, but I'm not sure. This surgeon's father is a heart surgeon as well, and the father has his name on quite a few medical journal papers about the Ross procedure, so the Ross procedure kinda seems to be their "thing." I'm fine and maybe even a little excited to have the Ross procedure, but another decision to make is what to do if they get in there and find out that my pulmonary valve isn't suitable for the Ross procedure. The surgeon's recommendations for what to use to replace my AV are, in order: homograft (human donor) valve, mechanical valve, porcine/bovine valve. This threw me for a loop, as I'd not read much at all about using a homograft to replace the AV. My understanding is that the homografts have a better chance of lasting longer than animal tissue replacements, and it wouldn't require blood-thinners like the mechanical valve would. Ultimately, the choice is up to me, but those are his thoughts on the issue. So, I have a bunch of decisions to make, it seems. I'm planning to get a second opinion from another surgeon as soon as possible as well.

I'm currently trying to figure out how to choose a surgeon. This feels like a decision that I am entirely unequipped to make. I've seen others on here talking about going to some fancy places like Mayo Clinic, Cleveland Clinic, etc., and I'm not sure if that's what's required for a successful outcome or not or how to go about doing it if it is. I don't like the idea of travelling long distances to such a place (I'm in Oklahoma), and I reeeaaaally don't like the idea of travelling that same distance back home with cracked open chest. So I'd like to stay local, if possible, but I'd also like to not die on the table, if possible, so I don't want to rule out going to a fancy clinic just yet. I am meeting with a local surgeon tomorrow that my cardiologist strongly recommends. My cardiologist says that if he or one of his loved ones had to have this surgery, this is the surgeon he would choose to do it. I've seen some ratings of surgeons online that make me hesitant to choose this surgeon, but we'll see what he has to say tomorrow. Maybe he'll be able to explain things to me and inspire lots of confidence, who knows. Forgive me for being too morbid, but I just feel like I'm taking a test I haven't studied for, and that if I don't do well on the test, I'll die.