ConNie's Guestbook

ConNie Romo  Hi Connie,
I think the size of valve they put in was based on my height, size and weight. We actually have the same size. Me being in the petite size the 21 is a bit bigger valve for me. TAVR was discussed and I'm hoping I don't have to go under the knife again for my surgery in the future. I really was hoping to have plates used to close up the bone but my surgeon said wires would be fine for me since I'm not obese or have any bone healing problems.

Cathleen Weed  Hi guys, They are working on smaller TAVR valves (really it's the catheter size used for placement I think) for those with a smaller system. Particularly women of Asian descent who tend to have smaller vascular systems (my surgeon mentioned that). My previous bovine valve was 27 and the TAVR bovine valve is 25. They have to go one size smaller for TAVR because the old valve is pushed to the sides and takes up space. Hope that helps 🌟

Cathleen Weed  Hi :) Yes, I was told by my surgeons that they can do a "valve in valve in valve" meaning they can go back in next time with another valve using the TAVR technique. In fact (jokingly) they said "maybe we will see how many we can do on you" lol. So that was encouraging.

c l  Wow, that's great! Do you know if TAVR is looking up for low risk patients (me in ten years) and how young a patient they considering TAVR (hopefully for my 17 year old). Actually I'm wondering if Ross procedure might be better option for my daughter if that is just one time surgery. What's your insight?
...Sorry, I'm flipflopping between me and my daughter.

Cathleen Weed  Totally get it! You have a lot to think about with both of you facing the same issue. TAVR trials are already being approved for some intermediate risk patients from what I hear so low risk patients are next. I know that the hope is to offer it to everyone in the future regardless of whether they are a candidate for successful OHS. If things keep going the way they are now, it will be standard in 10 years. I had the Ross Procedure at age 22 and it was definitely successful. However, at age 33 a huge aneurysm was discovered on my ascending aorta and it had damaged the valve (my own pulmonary in the aortic position). So back in I went. I still have the donor pulmonary valve that was placed 23 years ago (I'm 45) and it still seems to be doing well because the pressure on the right side of the heart is so much lower. They are also working on a Transcatheter pulmonary valve replacement for the future. Obviously if I had known that I would develop an aneurysm I wouldn't have taken my perfectly good pulmonary valve out of it's original position and had a donor valve placed there. These things happen though and it's fine. The Ross Procedure is really a great option though. I think if I hadn't had the aneurysm that the aortic valve would have lasted at least 25 years. So my advice, for what it's worth, would be to have a long talk with the surgeon about 1) The risk of an aortic aneurysm in the future (family history etc) and what they can do to prevent that 2) Does it look like technology will allow for a TAVR procedure on the aortic (pulmonary) tissue valve later? My TAVR last year was done to replace the 3rd valve I had put in (after the aneurysm) which was a bovine tissue valve.
Your daughter is young and I understand her plight. I was 19 when I had my first aortic valve replacement. It was a donor cadaver valve (no longer used) and prone to infection which happened to mine and it had to be replaced 3 years later (that's when I had the Ross Procedure at age 22). I didn't want a mechanical valve due to anticoagulants and my surgeon totally agreed based on my age etc at the time. After having a tissue valve and such a normal life I decided to continue with the tissue valve route and I'm glad I did. I'm sorry you are both going through this. If it helps, let your daughter know I'm super active and exercise (cardio and strength training) all the time and have a totally normal life despite all the surgeries. I've traveled all over the world, been in a bunch of commercials, and did fitness modeling, and went back and got a second degree in Nursing. So it hasn't stopped me from doing anything. I'm sure that's on her mind. It was on mine back then. I look back now and can't believe how much has happened and how strong I am because of it. I also have some great scar advice...Dermablend makeup covers it completely. I learned that on set. I read that your daughter is a swimmer? There's another competitive swimmer on here (Billy G I think). He had surgery at Cedars Sinai as well with my surgeon, Dr. Trento. I'll try to remember his name. He would be a great one to reach out to as well. Hope this info helps. Let me know if you have any other questions. :)
Okay, I just checked, and yes it is Billy G. He was a collegiate swimmer. He's 34 but I'm sure he could give advice to your daughter. He's back in the water and feeling great. I would reach out to him for sure.

Alan Lonsberry  The one problem I see with a tissue valve in a young person is how many times can a tavr be performed. When you put a new valve over the existing valve the diameter gets smaller because the new one goes inside the old one. As the diameter gets smaller the force it takes to move the blood through the valve increases. The other thing is a tissue valve doesn't guarantee no blood thinner, some will need it any way. There is a long term study being completed now with aspirin and Plavix as the anticoagulation therapy for the on x mechanical valve, so in the future Coumadin may not be needed. Lots of info to consider. My best wishes to you.

Enrique K  Alan, not everyone is a candidate for TAVR most likely a re-operation will be required. The only blood thinner I take which is 81MG aspirin doesn't even compare to Coumadin but this is needed in order to avoid clots which cause strokes and heart attacks. I have done alot of research in my 3 years before getting surgery. As far as I could see the only benefit of going with a mechanical valve was no second surgery but that is not always the case. Mechanical valves also fail. I finally felt that the drawbacks on taking a strong anticoagulant and changing my lifestyle was not for me. I was thinking to myself how ironic it would be if i got a mechanical valve only to have my life shortened anyway by getting into a serious accident and bleeding to death, hitting my head and hemorrhaging. My surgeon said that I could expect 12-15 years out of my tissue valve or never have to replaced it at all as he has patients with 22 years with the valve (That is not always the case). Please understand this is just my personal opinion. I just didn't want to change my lifestyle and continue leaving a normal life without any restriction. If I need another operation I will prepare myself mentally and physically once again since I am very fit. I like to be very honest as you can see and provide my feedback. Not trying to discourage anyone on their valve decision.

Cathleen Weed  Hi Alan and Enrique...yes I was told that TAVR will hopefully be my next one as well...I do have a big valve (especially for a girl). My last bovine was a 27...and my new one with TAVR is a 25...so they can definitely do TAVR on me again based on that. However, I also look at it as TAVR didn't even exist 10 years ago...so who knows what might come along in 10 more years :)! I also agree with you that they are working on new forms of anticoagulants and hopefully that will continue to improve as well!! I think we all have new and exciting things to look forward to in the future, no matter the valve :). Let's be honest, we are all just choosing the lesser of two evils for ourselves lol...we would rather just KEEP our native valves, right? <3

Alan Lonsberry  I hear ya there Cathleen. Enrique, I see you ski, me too, come ski Lake placid with me sometime, whiteface mountain. Thanks for the feed back.

Enrique K  Thanks Cathleen yes I would rather have my native valve:-)Alan, awesome thanks for the invitation. I will take you down for that offer:-). Let me know if you need anything else! Happy to provide more details.

Alan Lonsberry  I hear ya there Cathleen. Enrique, I see you ski, me too, come ski Lake placid with me sometime, whiteface mountain. Thanks for the feed back.

ConNie Romo  Thanks Enrique. I've been reading quite a bit of information on studies done regarding different valves. I know advancements in valve replacements technology is evolving more and more, they're coming up with better options so a 2nd surgery in the future doesn't really bother me a lot.