Cathleen's Guestbook

Cathleen Weed  I ended up with endocarditis my third year with the cadaver valve back then. They aren't used by my surgeons at Cedars Sinai anymore. I'm sure they are different now but I would look into infection risks. I ended up doing 8 weeks of round the clock antibiotics through a hickman line to treat the infection and then needed open heart right away to replace the valve once it was treated. Nightmare .

Cathleen Weed  Hi Grace!!! So great to hear from you again! Thank you so much . I'm happy I could help during that time . Yes, valve in valve in valve! Paving the way for the future candidates. I had my one week follow-up at Cedars Sinai today. All is seemingly well. The numbers on my exit echo last week were incredible. I have a 30 day follow-up next month and they will be doing a CT scan so I'll know for sure at that point how it's all going! How have you been ??

Mary Park  New to this site. I am scheduled for OHS for congenital bicuspid valve with severe stenosis and root enlargement at Mayo in Rochester, MN. On Nov. 5.
I live in Iowa and we don’t have full time cardiovascular surgeon here, only one that comes one week a month.
i was original scheduled for a TAVR but went to Mayo last week for a 2nd opinion and after two days of rigorous testing, I found out I was not a candidate for the less invasive procedure in any way. Very glad I made the decision to get another opinion. 
Any recommendations on how to prepare beforehand?  I’m getting things ready at home, my husband is an incredible support person,  just very anxiety ridden right now! 
(just turned 71 and no pre-existing conditions. I have been very active and work a part time job in a local boutique)

Cathleen Weed  Hi Kate - Wow that is incredible I am so moved to hear that and I'm so happy my story helped you! I hope you are feeling better and better every day!! If you have any questions or just want to talk about your experience, let me know! It takes a lot of courage to face that 3rd one. I remember! Cathleen

Cathleen Weed  Hi Mary - I'm very happy you got a second opinion because a TAVR patient mismatch would have resulted in another immediate surgery. It's better to get it done and over with in one operation. You are going to amazing surgeons at Mayo! Are you getting a bioprosthetic valve? I'm sending you all my strength . Being active going in is the best! I always say "how you go in is how you come out" - so if you are already active then you will have an easier time in recovery. Ask if your local hospital has a cardiac rehab program and 100% get in on that if you can. Your PCP or local cardiologist can prescribe it. I'm sure Mayo will be all over that. It builds confidence quickly. As far as the physical recovery at home - if you don't have a recliner I would recommend borrowing one or renting one. It will be your best friend for sleeping. Also, lotsss of extra pillows - you might want them vertically behind your back for comfort in the recliner and also definitely one under each arm on the sides for keeping your arms propped up. Truly will bring relief. A travel neck pillow is a must. Loose pajamas that button or zip down the front. A front closure bra with zero underwire. You'll feel broken at first but you AREN'T. Your body just has to heal. The sternum will just take time for the bone to calcify itself back together around the wires. For the hospital - you won't care too much about anything for the first couple days but I say pack that travel neck pillow, ear plugs, eye mask, a sound machine ( I love the rain option - the nurses last week described my room as "so zen and peaceful" ), biofreeze for achy neck or back, lots of antibacterial wipes, listerine, antiperspirant, a small rechargeable fan - it will help with nausea. Hopefully you can tolerate pain meds, but get off them as soon as you feel you can. They just cause a cascade of other issues eventually. I'm so allergic to pain meds - I get so sick - so I have always recovered from OHS on Tylenol. Not ideal but it was fine. Just stay ahead of the pain. My absolute #1 piece of advice is to get UP and out of that hospital bed as quickly as possible. Literally as soon as they tell you to get up just do it even if you don't feel like it. Sit in a chair - take your laps with the nurses - don't stay in bed all the time. Walk, walk, walk. It will prevent a host of complications. My mantra "just because it hurts doesn't mean it's hurting me". I used that through all my open heart surgeries. Your husband will be an invaluable part of your recovery . Not all heroes wear capes!

Cathleen Weed  That's so wonderful to hear! Thank you!! You definitely came to the right spot. Adam built an amazing heart community here . You'll be ready for this challenge, no doubt in my mind! I hope you are able to get it all done soon so you can celebrate how great you'll feel!

Cathleen Weed  I'm here anytime you need someone to listen. Your story and all you've been through, and are about to go through, is why I reached out . I truly get it. I was meant to see your post. I will be thinking of you as you wait for your surgery . The waiting really is the hardest part ( thanks, Tom Petty ). It sounds like it has been quite a while since you've actually felt good .... so try to focus on how great you will finally feel soon . It really helps!

Richard Munson  Cathleen you are an amazing heart warrior with a fabulous attitude. The list of stuff you’ve had done is unbelievable. I got stung by a bee yesterday and been whining about it ever since. My wife finally told me to shut up. Well, it hurts.

Cathleen Weed  Richard...haha you'd think we wouldn't find anything else painful lol...I wish!!
For cl regarding the aspirin question....sorry I just saw this...but yes, I would take it every day. The risk factors that come along with A Fib are significant enough to require a daily regimen of some type of blood thinner. Better safe than sorry. These words from my cardiologist at Cedars Sinai stick out in my mind "I've never seen anything sadder than a healthy person who had a stroke from A Fib". So, there's that. I take Eliquis. I would love to switch back to a baby aspirin someday Just take it with food each day.

Cathleen Weed  Hi :) Thank you . I chose the tissue valve for the exact reason that I was so young and active. My lifestyle would have been seriously impeded by anticoagulants at the time. My first aortic valve replacement was an actual donor cadaver (human) valve (which they don't do now) and that is why I was so susceptible to endocarditis which required the second operation just a couple years later. I chose the Ross Procedure for that one. So when I developed the aortic aneurysm 10 years after that, it unfortunately ruined the Ross procedure valve. My third open heart was the big decision between a bioprosthetic tissue or mechanical valve. At the time, my surgeon did push for the mechanical valve since it was my third open heart surgery but also gave no guarantees it would last a lifetime. The only guarantee was lifelong anticoagulation. I said thanks but no thanks lol since I was only 33 at the time. That decision did help me qualify for TAVR when I needed it replaced 10 years later. This TAVR placed valve has been great for 8 years and counting . I would do it all over again the same way, if that helps . I'm sure another big decision is in my future but I've lived an almost totally normal life with tissue valves. I have barely even felt like a heart patient (until A Fib! lol). Technology just keeps rapidly improving. Every one year of advancement now is equivalent to 100 years of innovation back in the day. We are very lucky!

Robert DeVita  I agree with you on the technology progress ! Check out the Resilia heart valves.., I saw a youtube that was from around 2017 and they were doing great in Trials. They mentioned that it is a technology that expands the life of the tissue on the valve! 

Cathleen Weed  Yes, I got to see one of those and learn all about it when I toured Edwards LifeSciences! So cool!! 

Robert DeVita  You are incredibly thorough to have toured the ELS Lab !! Brilliant attention to detail!  Did you get an indication from them how long they expect the Resilia Tissue valves to last for very active people ?  (I eat extremely clean and enjoy only a couples glasses of wine a week but could drop that in a moment if it meant better long term health).

Are they saying how long they will last yet?  The Cleveland Clinic surgeon I recently saw discussed taking out my mechanical valve for a tissue valve since he will have to go back in to fix a paravalvular leak anyway. 

I had my SAVR in Tampa, Florida this past January.., I went with a mechanical valve because even though I am 68 my normal pre SAVR week was: lift 75 minutes 6 mornings a week and walk for 90 minutes 4 days a week in the early evening. 
That said, the surgeons who did the initial SAVR felt the tissue valve would only last me 6 years.., not sure that they knew much about the resilia technology in Tampa so they recommended the ON-X mechanical Valve saying it would last the rest of my life.

Cathleen Weed  I was invited to their campus for a two day Patient Experience and it was incredible!! One thing I can say is that they are committed to making the best valves in the world. The Inspiris Resilia aortic valve is the newest so they are going by human trial testing and lab testing for durability. They test these in the lab in machines that simulate the heart. I got to see them personally. They actually have to shine a strobe light on it for the naked eye to be able to see the valve open and close because it goes so fast. They've tested them with enough "beats" up to 25 years of durability (1 billion cycles). Complications such as calcium build-up are reduced by the new technology that blocks calcium deposits. Even the way they choose the bovine pericardial tissue is amazing. They are very, very selective. My husband, who is an extremely strong pro BMX rider, was given a chance to try to "tear" a valve leaflet with his bare hands and it didn't budge. It's serious business over there! Edwards heart valves are like Bugattis or Lamborghinis. There's just no comparison. I'm a super fan lol . They explain it far better than I ever could! https://www.edwards.com/healthcare-professionals/products-services/surgical-heart/inspiris-resilia

Robert DeVita  I can't thank you enough for sharing this with me.., You mentioned that you wrote a diet and nutrition book.., is that available on Amazon or Barnes and Noble ?

Cathleen Weed  I'm so glad this helped It's a big decision, I know. Yes, my book was sold on Amazon and did really well. I'm thinking about getting back in publication :)

Cathleen Weed  Currently unavailable I will definitely let you know! I first published it in 2016. It's on my to-do list to get it back out there but a revised copy with even more info

Cathleen Weed  Hi Delise Thank you I'm so happy I could offer some insight and positivity . I'll be praying for you as your surgery date approaches . I'm here if you need anything!

Cathleen Weed  Hi Inna! I just had a check-up last month at Cedars Sinai and my valve is still looking great My past history has been about a 10 year lifespan on my boiprosthetic valve. I'm 8 years out ( tomorrow! ) on this new one and so far so good!! I suspect a couple years from now I will need another operation of some sort. When I had TAVR in 2015 nobody really knew how long it would last in an active 44 year old. They mentioned it could last even longer than expected. I do have some stenosis but now severe.
I went through a lot with A Fib the last couple of years (post-Covid) and I thought perhaps my valve was going bad but that isn't the case, Thank God! If I am a candidate for another TAVR (I don't know yet) then I would go back to Dr. Makkar.

Yes, Dr. Trento is incredible!!! I don't know if you've met him in person yet but he's very healthy. He has operated on some very, very big names. His patient outcomes are exemplary. I believe he has some of the lowest post-surgical complications of all heart surgeons. You'll have to ask about the radiation cases he has done. I feel like he has probably seen and done it all. If he doesn't do your type of surgery then he would certainly lead you to the right surgeon. He's very respected. He introduced me to Dr. Makkar and helped get me qualified for TAVR when I had it done. I know that he does complex surgeries. He did all 3 of my open heart surgeries which included a Ross Procedure for one and another that was a Dacron tube replacement of my entire ascending aorta through the arch for an aortic aneurysm (plus a new valve). I had zero complications. I would personally go back to him again without hesitation. I feel very lucky that he was my surgeon. Surgeons get better with age in my opinion. He just won the Pioneer in Medicine Award too. Let me know your progress!

Inna K  You've been through a lot of complex surgeries and your attitude is amazing! Very happy your valve is doing great!

May I ask why you didn't go for a mechanical valve when you had an open heart surgery? You are young and mechanical valves do not require replacements after 10 or so years.

Thank you for your 5 stars review on Dr Makkar and Trento. This gives me some peace of mind.

Saw some posts back. Congrats on your wedding !!

Cathleen Weed  I decided not to do a mechanical valve because I chose quality of life over quantity of years. I was 33 when that was discussed at length and it wasn't something I was interested in. I hoped that technology would advance enough to allow a less invasive option the next time. That ultimately came true for me because I was able to get the TAVR at 44. We shall see what's next! lol There's no 100% guarantee for anything since we are being given a foreign part no matter what it is made from so I opted to choose the one where I didn't have to disrupt my lifestyle with blood thinners and testing etc. If my next replacement requires open heart and another choice I will probably still do the bioprosthetic valve because they are so superior now. I could then do TAVR again after that. They are making so many advancements. I decided long ago that I will live my life on an 'installment plan' lol. It's okay. It works for me. It's a very personal decision that everyone has to make with advice from their surgeons. There are so many variables so it's different for everyone. Having said all that, I know blood thinner options are getting better now too for those with mechanical valves. I do feel like there's a trend toward tissue valves though even for those who would have normally been advised to get mechanical valves. That trend has everything to do with TAVR being such a great option down the road for another future replacement. Beyond that, it really becomes a decision about lifestyle and personal health issues in my opinion.

Inna K  Love your attitude! Similarly to you, I live my life on year at the time. I beat several cancers thus far. The heart situation is sort of new, only learned that I have aortic stenosis a few years ago. Trying to gather all info I can to make the right decision so there is no regrets .
Take care of yourself and keep enjoying life!

Cathleen Weed  Yay!!! Thank you!! I married a Pro BMX Rider with the funniest last name ever! Lol Great to be back!!

Civita Fahey  Cathleen I didnt recognize you wiht your new name! Congrats on your marriage and glad to hear  you're doing well. you were so helpful during my journey!

Cathleen Weed  Good! Something to definitely be aware of! I’m sure they are on top of it and have considered it in your treatment plan. It’s important for you to know everything though (size, location). Mine started out at 4 cm and grew to 6.5 cm over time at which point it became an emergency open-heart surgery to have it fixed. You are going to do so awesome through this because you’re an athlete 💪. Barring any complications, you will breeze right through the recovery. 

Robert Miller  I am not familiar with this type of surgery but for my mitral valve neither of my surgeons were definite on what they will do. Basically, they said the first try to fix it. They then test the fix. If the fix doesn't work they will to a replacement. So then it was about if they need to do a replacement do I want a tissue valve or a mechanical valve. My point is, at no point was the decision "do you want a fix or a replacement". It was always we try to fix it and if it doesn't work we do a replacement. Your situation might be different. 

Cathleen Weed  Robert - that was my situation also with my very first OHS for my native bicuspid aortic valve. They needed to get in there and see it to know whether they could repair versus replace. Ultimately, it was replaced. 

Cathleen Weed  Hi Joanna - If you go over to My Valve Story it will explain it a bit better.  Short version: 

#1) Bicuspid aortic valve replaced with donor valve at age 19 

#2) Endocarditis ruined that valve at age 22 and had a Ross Procedure to replace valve 

#3) Aortic aneurysm tore that valve open and had it replaced with a bovine bioprosthetic valve ( and aneurysm repair) at age 33  

#4) Aortic stenosis on bioprosthetic valve and had a Transcather Aortic Valve Replacement (TAVR) with a new bovine bioprosthetic valve at 44 :) 

Don't worry, most of these things don't ever happen to one person :). 

Richard Munson  I just turned 80 and had my mitral valve surgery a year ago. Just do the post op exercise and your age will not be a factor.

Dylan Kempers  Hi Charles! I'm 58 and had robotic mitral valve repair surgery by Dr. Trento at Cedars 10 months ago. If you have any questions about how was my experience, let me know and we can chat over the phone. In any case, you are in good hands!

James A. Corbett  Wow, what a story. Thanks for sharing Cathleen. You really know the ins and outs of a hospital. Best of luck.

Jennifer McInerney  I have BAV and I was screened because I was told there is a correlation. However, my risk factor was even higher because an Aunt and a cousin on my Dad's side both died from brain aneurysm.

Civita Fahey  I asked my cardiologist about this and she said the risk is pretty minimal. there have been no studies to show more than minimal risk. If you have a coarction then the risk might be higher, but she said it was nothing to worry about.. Cathleen, I;d like to hear if there is anything different out there?

Cathleen Weed  After my aortic aneurysm I was sent for a brain scan. The reason being that the arteries in the heart and the brain are made of the same material. BAV is also shown to have a correlation with weaker connective tissue (arterial walls). The scan came back clear but I'm due for another. I was told to check every ten years or so because aneurysms form very slowly. Thanks for the reminder! ❤️
PS keeping your overall daily blood pressure low is important in preventing aneurysms.

Lisa Courkamp  Thank you, for the brain aneurysm screening info ladies. Very helpful, but also very concerning that my cardiologist never discussed this with me or sent me for screening. I learned about it on my own. Even more concerning is that I have BAV AND a near surgery size ascending aortic aneurysm and still was never sent for brain aneurysm screening. Cathleen, I did read about the correlation with regard to weak connective tissue in the arteries of the heart and that of the head and neck. Cathleen what is the name of your cardiologist who sent you for the brain aneurysm scan? I need a cardiologist like that who will take all precautions. I have been seen at Scripps Health here in San Diego the past 5 years and I am disappointed in the level of care I have recieved.

Cathleen Weed  I see Dr Stephen Schiff of California Heart Associates (he's great..keeps my BP low) but it was my surgeon at Cedars Sinai in Los Angeles, Dr Alfredo Trento, who sent me for the brain scan after my aortic aneurysm. They are very on top of everything there. ❤️ Dr Schiff just recently said that I should do a follow-up scan and then I read your post and it reminded me.

Lisa Courkamp  Great! Thank you, Cathleen. Helpful to know. Fortunately, my blood pressure has always been quite low , but a good low (except at the end of my 1st pregnancy). I've engaged in aerobic exercise for most of my life and I keep my weight low....115 lbs at 5'6. I also eat a whole foods, plant based diet with some salmon and other oily fish added in. I almost never eat cow dairy...only some sheep and goat milk based cheeses on occasion. It's worked well for me. My labs are really, really good. But, I am in perimenopause now so I will see how well this all keeps working for me. So far so good. Thank you again, for all of your help! =)

Marie Myers  I asked both my cardiologist and primary doc . Both of them said there is a slightly higher risk of cerebral aneurysm, and that I could be screened if I wanted. Have not done so yet...

Bob Fessler  I have a question. If they screened you for a brain aneurysm and they found one, what would they do then to resolve the issue?

Marie Myers  They can perform a percutaneous coiling to treat the unruptered aneurysm.. WAY better than a craniotomy to treat an intracerbral bleed...

Cathleen Weed  By the way, my Theory and Clinical instructor during nursing school had the coiling done for FIVE brain aneurysms. She is totally fine years later with no complications whatsoever...she's healthy, does kickboxing, is the most active person I know...so that is reassuring!
Lisa, keep up the good work! That's awesome! :)

Cathleen Weed  Hi Julie! Just try to get out and do something each day to raise your heart rate ❤️, even just 15 minutes. If you have outpatient cardiac rehab there you still may be able to go at this point. You can ask your cardiologist about it. It's an ongoing thing here in the states and people can continue with it indefinitely. I think that if you start to track your progress you'll do more 💕. I like to write it in my calendar. One thing I really like about exercise is it gives you body awareness so that you can assess your overall health easily 😊😍. Thank you for reaching out ❤️! Let me know how you are doing and if you start a program, either supervised or on your own 💛☀️🌈.

Cathleen Weed  Hi Civita 😊 Yes definitely! Bands are great and 5 months out is a perfect time for it ❤️ I'm happy to hear you're doing so well!

Cathleen Weed  Thank you so much 💛. Stress can contribute to aortic aneurysms because your blood pressure can be extremely high without any symptoms and will put pressure on your aorta. That's why I am always advocating for people to stay on top of their heart health. ❤️ If I hadn't been so diligent I would have missed it and wouldn't be here today. 😊