John's Guestbook

John Hannon  Hi Lindsay, My first procedure was a Ross when I was 25. I was scheduled for a mechanical valve and we decided to get a second opinion. The cardiologist there said they could do the same mech valve but highly recommended I go to Cleveland because, in his words, "they are the best". The second opinion doctor was great and took care of getting all my info to Cleveland where they recommended the Ross so I did it. At the time the surgeon, Delos Cosgrove, thought it should be good for life. He told me to do anything I wanted as far as activities. The cardiologist at Cleveland was more cautious regarding activity but I liked the surgeon’s answer better so went with that. I was a fisheries biologist on Prince of Wales Island in Alaska at the time.

The pulmonic was the one with the most issues prompting the second procedure 25 years later when I was 51. I went with the tissue valve because I spend a lot of time in wilderness areas where getting medical attention could be difficult. Surgeon said he does some remote hiking and if it was him he wouldn’t want to have an issue out there while on blood thinners and that he would go with tissue if it was him. So I went with that. 10-15 years for a person of my age is what he said the tissue valves normal longevity would be for my age and the next one could be catheter. After that would need to be open heart again because there is not space for multiple valves inside there, at least in my case, and they gave me the largest valve size. Then if another is needed it could be catheter again. So open heart every other time. I put some faith in technology advancements down the road. My cardiologist told me the calcification that can occur with tissue valves is an immune response and younger people have a stronger immune system so that’s why they don’t last as long. Hopefully we’ll find a way to deal with that in the near future.

I have no regrets with my choices so far and have no activity restrictions (except antibiotics to go to the dentist which I’m not a fan of).

Lindsay Beth  Hi John, thanks for sharing this. I think i'm leaning toward a tissue valve for similar reasons, I like to hike and travel and want to be less concerned with blood thinners. I am also hoping (or at least considering) having a child - and I think the tissue valve is a safer option in that regard. Until you mentioned it, I hadn't heard about size constraints and second or third valve-in-valve replacements, but that makes sense. I asked my husband (who was at my last appointment) if he heard the same as me - the doctor made a very confident claim that this would be my last open heart surgery for valve replacement. I wonder what could be different. I am 35, fairly average size, fairly healthy (no symptoms right now and supposedly looking at a normal or near normal life expectancy - at least that is what I think they said, though I cannot find any data to corroborate that). I was told the same, 10-15 years and then a redo, but that all subsequent redos would be catheter. I now have read a second comment that mentions the same as you - that it was more of an every other time thing. Ugh... I am a data engineer and my brain just functions in a data oriented way - so I am so frustrated that the data doesn't support what my doctors are saying. I'll add that to the list of questions. :/. I really appreciate it, though.

I have taken antibiotics before the dentist for as long as I can remember (until a few years ago, that was the recommendation for all congenital heart patients - now it has changed so that the recommendation is more lenient for those with valve repairs rather than valve replacements). I am also not a fan, but the overwhelming evidence suggests that if you are going to get endocarditis the number one culprit is the mouth so I suck it up and take the meds - and after a lot of research and discussions with epidemiologists and friends in medicine (and a cousin who is a dentist) I decided that an occasional antibiotic zap is really not a huge deal.

In any case, thank you again. I'll send some extra thoughts, for both of our sakes, to the scientists working on the calcification and durability of the tissue valves.

John Hannon  Another thought on pulmonary valves - you might ask about getting a homograft valve (one from another human). That's what they use in the pulmonary position in the Ross procedure and I've never heard of them using them in another situation, but I don't know why not. The thought is that pulmonary valve is under less pressure than aortic so a homograft is more appropriate in the pulmonic position and maybe not as likely to calcify. I got 25 years out of mine. That was something I had intended to ask before my surgery and forgot.

Also on the calcification front there has been a clinical trial underway on using vitamin k2 to reduce calcification on valves. It should be done now but I haven't heard of results, maybe that's not a good sign though. I've been taking K2 just in case... Also reading Sergey Young's book on growing young which holds a lot of optimism.

John Hannon  Yes, will do. My next echo will be around next August. My echo after surgery said my septum was severely hypokinetic which I think is why my ef is low. The echo at 6 months out, done by the same tech though she didn't remember me, didn't mention that and the related numbers were better. I haven't tried Entresto. They put me on lisiprinol to deal with the low ef...started with 5 mg of that and I passed out twice in a month when getting up quickly. So we cut it to 2.5 mg and I don't get dizzy as often when getting up. Thanks for the note.