Allen's Guestbook

Allen Carkner  Hello Dom, I’d like to start by saying our options for the replacement of bicuspid aortic valves are amazing, durable and can last a long time, but they are all imperfect. I decided on the Ross procedure because the idea of managing warfarin for hopefully 50-70 years made me uncomfortable and I think that the risk of thromboembolism, mechanical valve failure, or bleeding events is something that shouldn’t be taken lightly. My surgeon made me confident that my new autograft aortic valve may last 20 years to life if I’m really lucky. While my understanding is it very possible to get 15-25 years out of the pulmonary donor valve before inserting a new valve using a catheter procedure. There is a risk for any of the options that we will need another open heart procedure while far lower with the mechanical valves, they can still fail. I believe that the risk of more surgery, including non-open heart catheter based valve insertions is less scary than dealing with an audible clicking heart valve as well as the lifetime risk of stroke, embolism, and/or bleeding . I will share more later. I don’t want you to feel like a mechanical valve is a bad option they all just have their caveats.

Allen Carkner  My suggestion is, if you have any desire for an anticoagulant free life, you should at least speak to a surgeon face to face that has done the Ross procedure often with good success. Questions to ask should include, stroke risk, valve failure risk, valve reintervention frequency and risk. The impact of your decision on estimated life expectancy, lifetime exercise tolerance, including the ability to play any sports that you value. The answer is nuanced to what valve is best for your preference. Stroke risk is something I was really concerned with and was told that the Ross procedure has far lower risk of stroke.

Allen Carkner  This is my surgeon speaking on this subject a bit. There is some surgical footage so only watch if you don’t think it will overwhelm you. Careful not to stress yourself out too much. I understand it’s a stressful time when preparing for surgery. Wish you the best. 

Sue Maize  Great advice Allen! I am noting your questions to ask my surgeon next Wed when we meet for the 2nd time. She’ll let me know then whether or not the RP is a good option for me. Thanks so much! 

Allen Carkner  Hi Jessica, 
happy to share my experience. I was referred for aortic valve replacement about two months before my surgery March 2023 for aortic stenosis. Memorable moments include waking up while intubated a few hrs post-op and maybe shoulder/back pain. It all feels like ages ago at this point. I was surprised that my shoulder/ back pain was my most significant source of discomfort, then the chest tubes with breathing.
The intubation feeling was sort of a blurry and incomplete memory due to sedation but a remember vaguely the feeling of being a bit gargly with saliva while the care team was closely monitoring me, once I had that feeling it felt like a short period of time before it was out. This, in the moment was strange but it quickly passed and then I was just in bed with a hoarse voice giving thumbs up lol.
 I was in the CTICU for about 3 days, then about 2 days in step down unit, my last day in CTICU was mostly due to there not being a step down room available.my final days were mostly trying to get me to target blood pressure with a manageable from home medicine regimen. First month post op was mostly sitting with walks up and down my hallway. This then turned to Cardiac rehab where I started with very light dumbbell exercises and treadmill/ bike exercises. I took a full 12 weeks off of work due being on my feet a lot and it being a fast paced job. I also wanted to get as many rehab days in as I could before going back to work full time.

Allen Carkner  Hello Paul, nine and a half months out from my Surgery I can confidently say I’d pick the Ross procedure over a mechanical valve still. Surgical risks from surgery are quite low when completed by high volume centers, there is still risk with it being a double valve procedure though. I decided  for me, the annoyance and lifelong risk of bleeding or thromboembolism wasn’t something I wanted to manage with the warfarin. Stroke really scares me. I am a phlebotomist and daily, I draw people’s blood for PT/INR testing. Sometimes people come in every week. It is almost guaranteed that in my case as a 25 year old, the donor pulmonary valve will need intervention in 15-25 years I’d guess. But this I’ve been told will likely be in the form of a TAVI procedure and not require a repeat sternotomy. The Pulmonary autograft aortic valve, while not guaranteed to last a lifetime, is the only tissue valve option that might last a lifetime and has a track record of making it passed 20 years in many patients.

Allen Carkner  https://www.scopus.com/record/display.uri?eid=2-s2.0-85145492040&origin=inward&txGid=3454faa95e237e5f00f4dbcc978cdc2b

Deena Z  Love it!  Nicely done.  Definitely a reminder that you have fortitude that you had not imagined. Happy holidays; enjoy entering 2024 all mended.