David's Journal

8 Months today! Stamina coming back still, though easily tired. Walking a whole bunch. 5 miles most days. 3 on a bad day. 7+ on a good day. Priorities coming out of surgery still feel like they are coming into focus. Time here is limited. How do we make the most of what we have?

Ok, so 6 weeks ago I was in the ICU! Today, I actually feel pretty close to being a normal human, not a patient, or someone recovering from heart surgery.

I still get tired, and as I cut back on tylenol, I'll still get a little sore, but it's not much of anything.

I actually went in to work for a couple of meetings to get my head back in the game/start getting up to speed on business planning. Followed this with my first post-op cardiologist meeting here in Portland, today.

It was interesting because my previous cardiologist punted. They never met with me, just sent me to a surgeon...so now I have a NEW cardiologist.

A lot of today was getting to know each other, getting my history, what meds I'm on, etc. BP was good. Wound looks good. Lungs and heart sounded good. I'll do an echo and EKG in 6 weeks. They won't clear me to drive till week 8 because of air bags, which is kind of a bummer. They gave me a referral for Cardio Rehab if I want it, but due to the fact that I am walking between 5-7 miles a day right now, they aren't sure I will get much out of it. They also said the cardio rehabs here are for people a whole lot older than me.

What do you guys think, still worth it to go into rehab? I was imagining it might be good for shoulders and chest exercises and maybe just getting back up to running speed while in a controlled environment?

For anyone with a valve repair, have you had any issues with going back to a fully active lifestyle? I am some how psyching myself out about really exerting myself...I know it's silly, but I think the knowledge that active/athletic folks wear out tissue valves makes me wonder about the longevity of repairs and if exercise can cause accelerated wear?

Anyone else hyper aware of their heart beat? For what ever reason I can hear my heart beat super clear when I inhale laying in bed, but not exhale...so I was "losing" my 3rd and 4th beat, and completely freaking myself out for an evening...comical what we can convince ourselves of after surgery.

Hope everyone in recovery is doing well, and that everyone heading into surgery will have a fantastic weekend. Go have some great food, etc, as your appetite and taste will be off for some time.

I can't believe it's been 4 weeks since my surgery. Time is moving both fast and slow. I've settled into a routine of walking around my neighborhood, lounging in a chair, reading and playing guitar while I wait to heal up. Still have some pretty steep waves of fatigue come through, and I have some annoying sciatica this week, but it's improving. Too much awkward sitting in bed, I think, as I still don't like laying down flat. Regardless, this week I am really starting to feel like myself.

I'm starting to get my step counts up to what used to be low step count days for me, but at least there is an overlap. Looking forward to rehab and running/hiking real distances again.

My appetite is not entirely back, but I think that may be due to the blood thinners/beta blockers I am on post surgery kinda make everything taste a little weird. Tough to get excited about when flavors seem to be all over the map.

Mostly just feeling pretty grateful for the age we live in, and the surgery we are able to undergo. Hoping everyone is having a positive experience with this rather large life event.

Almost three weeks since surgery, and starting to feel pretty amazing. Pain is still there at different times during the day, particularly at night. Super uncomfortable in bed. My energy levels definitely come and go in waves.

As energy comes back, I am trying to walk more, and it's been nice to move about. I am walking very slowly, but pretty consistently.
My incision is looking ok, even if a bit itchy, though one of the tube holes is really not pretty to look at as it heals. As a side sleeper, I can't wait to be able to sleep reliably on my side. All and all, I am amazed at how quickly I am feeling better.

I honestly cannot say enough good things about the Cleveland Clinic and Dr Roselli. After 15 years with a murmur and occasional back flips in my chest, I love having a crisp and clear heart beat...with my own valve. I still get emotional when I realize Dr Roselli was able to save my valve and do some fairly intensive repairs around my aortic root. He said once he got in he was glad I hadn’t waited any longer, as the aortic root was getting very large. Amazing stuff. As for anecdotes of the whole procedure, I have a few:

As an out-of-towner, the morning started out walking at about 5:15 am from the Holiday Inn a few blocks away. I knew I was nervous, but I didn’t realize how nervous, until I was literally dry heaving while walking with my wife down Euclid Avenue to the Clinic. The staff was amazing and did their utmost to make it as “normal” as possible. They also do an amazing job of keeping family engaged through out the very long day while the surgery is happening.

One of the best things overall for me, is the fact that they call your family to come hang out with you as you come out of anesthesia. My first memories post op, are of my wife and my mother holding my hands, touching my forehead and talking with me. Truly an amazing and important emotional experience to come back to. I cannot emphasize how cool this detail was for me and my wife and family.

Another interesting anecdote, my father has a similarly dilated aorta, but has never been diagnosed with a bicuspid valve. As most of us on here know, that’s kinda not really how it works. During the pre-surgery meeting, I mentioned my father’s status to Dr Roselli who kind of raised an eyebrow. Apparently after my surgery, while I was in recovery and he was talking with my family, he told my dad to send him his records to give him a second opinion. Super kind.

Anyway. Just feeling pretty grateful to be here. Feeling like I got some pretty amazing care at the Cleveland Clinic. It was worth all the extra effort to get there from Oregon.

Made it though. Dr Roselli and his team were able to repair my aorta. I am ecstatic! So tired, so I'll be brief, but talking some mini -walks, had tubes removed today (wow that feels so much better). The team at th Cleveland Clinic is amazing. From the moment I've arrived to my daily care. Lots of anecdotes to share once typing isn't quite so exhausting. Thanks so much for all the support.

*** Editing 8 hours later to write what I should have written in the first place. Some responses may seem odd now. ***
Man, I thought I had made peace with a mechanical valve and blood thinners. I met with my surgeon today and he really thinks he can repair my valve!!! I almost started crying. Now the funny thing is the question of back up valve: mechanical versus biological. I have been thinking mechanical/on-x all along, but I am now leaning towards a biological that might last twenty years and position me to be able to have TVAR down the road? My surgeon was feeling like the mechanical will likely need to be replaced as well in more like 30 years. So then the question is, do I want a surgery at 60 or 70? Do I want a blood thinner? Man, funny to have to come up with an answer that I thought I had made peace with already. Any thoughts and opinions are very welcome.

Finished pre-op testing today. Met with the cardiologist at CC, and had my heart cath. All clear and in agreement with treatment. I will be meeting with the surgeon tomorrow, and surgery on Thursday. This is all relatively insane. I had the first echo which discovered this in early May, and had to come to terms with this rather life changing surgery between the first echo in May, and this Thursday. I am grateful for the knowledge and stories on this board, as well as finding friends and family who have gone through this already.

It's getting real. Made it to Cleveland today. A full day of imaging and tests tomorrow. Mucho pre-op stuff next week, and surgery a week from today, on the 7th.

Still working out insurance. My wife, the financial planning people who help with this at the Cleveland Clinic, and some of the advocates my office work with have been champs, and may have found that I am actually in network by virtue of what umbrella company owns who. Vacation on Cape Cod for a few days before I head to Cleveland for pre-op work on the 1st, and surgery on the 7th. Looking forward to discussing what surgery Dr Roselli will recommend. I am mentally prepared for mechanical valves, though a different, and respectable second opinion believes the aortic aneurysm and bicuspid valve could possibly be repaired. I'd love that, but mostly I want to be alive and kicking and able to get back to running/being active as soon as possible.

I have my hotels locked in, and have my flight to Cleveland set. Trying to figure out when I leave. Has anyone had to fly in and out of Cleveland? How long did you stay before getting on your plane home?

Hello! If all works out with my health insurance [out of network] I'll be at the Cleveland clinic in about two weeks with surgery for a bicuspid aortic valve and a dilated aorta with Dr Roselli.

Coming from Portland, Oregon, one of the questions that has been nagging at me, is purely logistical. How long do people typically stay in Cleveland? How long until people have flown? We've been busy taking care of insurance and aligning calendars [kind of a grabbing an opportunistic opening in his calendar], that I haven't been able to look too closely at the logistical details. Any thoughts, or experiences here, would be appreciated.

Also, if anyone has had any experience pushing back on their insurance companies for out of network coverage, I'd love any insights. Thanks!

Oddly enough, the surgery isn't stressing me out as much as the insurance and planning.