Ana's Journal

Yumiko Ishida  When I had a stroke I got a CT scan of my brain once a day for several days. After the heart surgery, I got a chest x-ray everyday while in the hospital. I think there is a point at which the need for the imaging outweighs the risk of radiation exposure. You should discuss your concerns with the doctor that ordered the CT. I don’t know if an MRI will provide the same information they need, but if it does, it’s worth asking.

Fidel Martínez Ruiz  The dose for one CT scan rounds about 20 to 30 milisievert (dose unit). Every scan increases the average probability to get cancer from 0.05% (if you are about 70 years old) to 0.10% (if you are about 50 years old). Then, if you compare with the probability which all have to get a cancer (about 30% of the population), the added dose per full body TC is practically negligible.  However, radiation is cumulative and increases over lifetime, and that´s why one has to be careful. If you undergo  a scan every month, in one year your probability to get cancer increases about 1% more, being then 31% instead 30%. 

Fidel Martínez Ruiz  On the other side, as far as I know CT and MRI supplies with complementary information. There are things that can be seen with CT, others with MRI and others with both techniques.

Robert Miller  I don't have the statistics that @Fidel Marinez Ruiz has but my entire career was with x-rays. I had an unfortunate incident with a lot of x-ray exposure. So they took white blood cell counts. No issue. In any case, you are just fine with those 3 CT scans. We have made a lot of advances in CT where dose is very low. Does the chance of cancer increase? Yes, it does. But VERY little and you are a lot better off getting that scan done if there is a medical reason to do so. I wouldn't worry about this at all. 

Luke Taylor  Hi Ana. I was 36 when I had my aortic valve replaced and I opted for a mechanical valve based on surgeon's recommendations. I wanted a valve that would outlast me and hopefully avoid future surgeries. That was 7 months ago and the blood thinners haven't been an issue so far. Good luck in your decision process, I know it's a lot to consider!

Mark Odenheimer  I am in the same boat.  I am 45 and need to have a valve replacement.  Dr. says valve probably can't be repaired and I will need replacement.  I was leaning towards tissue valve rather than mechanical, then Dr. mentioned Ross, and I became more overwhelmed.  

I am still active, playing sports etc, and I have 2 kids (7 and 2), so being able to play with them, go hiking in the woods, or doing anything where I might get a slight cut makes me think Mechanical is out of the question

Larry Peterson  Research the Inspiris Resilia tissue valve.  If a large size is possible for you,  a TAVR replacement may be possible if it fails.  Talk to your surgeon about it.  Good luck!

Grace Mason   With the right surgeon a Ross procedure is not more risk or a more difficult recovery, but you need to make a decision that is right for you. 
Read and view videos  and research papers to gather as much information as you can in your decision making process. Initially I was not considering a Ross.

Since you are so young, they are new, but what I have read of new calcium blocking tissue valves sound promising, if you don't want to consider a Ross.

Ana K  Thanks guys : ) I understand that the general guidelines are to do a Ross or mechanical valve for patients under 50.  I have decided against the mechanical valve - because of the clicking and the blood thinners.  I met with a Ross surgeon - he was very nice, but the procedure itself still scares me. My instincts are telling me not to mess with my pulmonary valve. I don't want to end up needing 2 valves replaced in the future. So my best bet is to hope they can put a big enough bio valve (maybe a 25) so I can get a TAVR in the future. It's interesting that very few people are choosing this approach. I hope this is the right choice - because once I do there's no turning back.

Paige Hahn  I am 30 years old and I am replacing my aortic valve next month with a Inspiris Resilia tissue valve! 
It was a personal choice knowing that I will have a TAVR probably in around 10 years then another open heart surgery after that once the second biological valve fails, but I’m hopeful that in 15+ years there will be huge advances! 

Jennifer Fuller  For everyone hoping for a future TAVR after OHS - I had the same hope, but my new valve is only a 21. This probably means I’m ineligible for TAVR unless some significant advances occur in the next 10 to 15 years. I was initially really disappointed, but I’ve come to terms with it.

Allen Carkner  I was a bit hesitant of the Ross procedure myself, but as the clicking mechanical valve with the lifetime risk of bleeding or thromboembolism and stroke being what they are, I really didn’t like that option. I told my surgeon that if they had to change valve during the procedure I would like the tissue valve and risk re-do surgery a few times down the road. The Ross procedure has opened up the possibility of many years without another surgery and I only take a small amount of beta blocker, Losartan and a baby aspirin. The Ross procedure also seems to be the only option that has the possibility of getting especially someone of a younger age to a more normal life expectancy even with the risk of redo surgeries down the road. My cardiologist thinks my new aortic valve could last my lifetime and has zero stenosis or regurgitation upon my last echo. The donor valve will need to be managed but this is an easier tpvr procedure than even the aortic valve catheter valves of today. My surgeon completely replaces the aortic root which is prone to aneurism in people with bicuspid valves and this then fixes both that issue as well as either a leaky or stenotic Aortic Valve. He also supports the new valve using a fabric tube in order to prevent regurgitation due to dilation of the new valve. The trouble with the Ross procedure is finding someone that’s done it with a personal track record of success. Best of luck to you and I wish you good health. I’m so greatful of my own decision that I threw it on my leg. I realize this is a personal decision and I hope you find the option the most eases your concerns and matches your own lifestyle.

Allen Carkner  My cardiologist explained the the trouble with the valve in valve procedures is that each time it is done the valve must be smaller, essentially starting with a small degree of stenosis on day one of the second valve implantation. If you are young, this then is even greater on the third try and maybe not feasible. My uncle had his bicuspid valve replaced 8 years before me as a late 30 year old, he had a mechanical re-due valve AVR surgery 5 days after my own procedure because his bovine valve was severely damaged. I don’t mean to be insensitive but I know I’d like to make it to 70-90 years old personally and the Ross procedure seemed like the most realistic way of getting there as a 24 year old at the time of surgery.

Michelle Troxell  I love my mechanical valve ❤️. Had it since 2021 and going strong.  No issues with Coumadin/ Warfarin blood thinner. I was able to get an INR tester for at home and do it once a a week.

Brady Busch  When first meeting my surgeon,there was a confidence she had.During our talk,it was made available,to look for another doctor,but I chose her.

Dan Fouratt  Ana,  It it truly a personal decision.  When I had my Brain tumor addressed I met with 8 people before deciding.  To be frank the procedure was well done but the patient experience could have been better.  With my heart I only met with one doctor and made my decision.

Erin Feaker  I searched and read and watched videos of the doctors where I chose to have my surgery and narrowed it down to two. 

Rose Madura  My cardiologist recommended two surgeons from the same practice. I knew three nurses who worked with the one I was leaning towards and they all had rave reviews of him. That was my confirmation.  

J Alexander Lassally  Think of it as two layers - institutional and doctor. The instutition should be excellent - medicare and STS outcomes should be in place.  The surgeon should be specialized and high volume. Check for malpractice. Check around. Lastly, make sure the surgeon seems human and trustworthy. I rejected one "famous" guy because he was just a plain ass. 

Valerie Allen  I agree if it’s down to two certainly look at the institution. I do this anyway. From what you can tell, do they have good protocols in place which are patient focused. What has been your experience with the nurses, receptionist, technicians. Do they seem or say they are short-staffed? That’s if both surgeons do high volume of your type of surgery with excellent results.

Teressa Phillips  At the hospital I wanted to be at there are two heart/lung surgeons. I didn't have any questions about my diagnosis, which was confirmed with multiple CT scans, ultrasound, and heart cath. One that we had dealt with when my mother had heart surgery and my surgeon. I was assigned to the other surgeon by chance, but I would have requested a change if that had not happened. While I don't think my mom's surgeon did anything wrong, I don't think he took her recovery seriously enough when she started having issues almost immediately after surgery.

One of my surgeon's NP came to see me while I was still in the hospital after my initial diagnosis, and I felt comfortable with her. Then I met the surgeon in the office the next week and liked him. As I mentioned who my surgeon was with people in the healthcare field, the response was all positive. 

Best of luck finding someone you feel comfortable with. Also, my experience is I spent most of my time with his NP, so make sure you like them as well.

Yumiko Ishida  I think the most important part is the surgeon’s track record for your type of surgery. If that doesn’t help narrow it down, then consider how prompt or helpful their staff were during your interactions. If the choice is still not clear, ask everyone you know if they know any of the surgeons, who they recommend, and why. After going through all of that, maybe you could go by your gut.

I interviewed two. It took me a while to get clear information on their experience with my type of valve (stenotic rheumatic mitral valve), but by the time I had to make the decision the choice was obvious to me. Surgeon 2 had a very nice office and I almost went with him after the initial consultation, but everything else pointed to Surgeon 1. During my ask everybody and anybody stage I really wanted a third choice, but nobody was able to come up with a viable alternative.