meg's Journal

Valerie Allen  I know the exact feeling. My BAV surgery was Apr 18 and I dreading seeing my pic come up. You will do great!

Sue Maize  Thanks Meg! Tried the link but unfortunately it doesn’t work for your neighbours to the north, as in beyond the border north! ☹️

Pam Dahl  Great question, I’m the caregiver of someone having OHS April 19th and trying to get things too.  I’ve read a long cord for your cell phone, stool softeners, protein shakes, a seat for the shower, comfy recliner, lots of button down shirts, books, things to do in spare time.

Barbara deLoache  Hi Meg.. my surgery will be April 9th so I’m right there with you. You have listed some important things. I love my new power recliner and have a “tv table” next to it to hold all my post surgery stuff.. remotes, phone, kleenex, phone charger, pens And note pad,, snacks etc. Also I have a journal which I am putting all sorts of notes & reminders in related to my surgery and recovery. It helps me keep everything  together in one place. I have also created “heart team” of friends who want to help.  I put them in a group on my phone so we can all keep up with any needs. Since I live alone, they plan to be here for me. Best wishes for an excellent outcome!🌷

Yumiko Ishida  Power assisted recliner, shower chair, and front opening shirts. You may also want to get a spare surgical bra. I got a rash from the support vest the hospital provided, so I ditched it early on, but it is highly recommended. Barbara posted a question about bras, so you probably want to check out the responses to that post.

Yumiko Ishida  And make sure you have something that nourishes you or simply makes you happy at the hospital. For me it was warm soup, so I made bone broth ahead of time, bought a thermos, and asked my partner to bring me a thermos full of soup everyday.

Daneen Douglas  Great ideas! I’m also thinking about one of those grabbers you can hold to pick things up, as well as some slip on walking shoes and loose comfy pull on pants.

c w  I was grateful for an air filter … Clean air helped prevent coughing & congestion, which were so painful the first few of weeks. (I have allergies plus the air quality was terrible when I was released — that first unfiltered breath as I left the hospital was a doozy.)

I didn’t know I could choose food  in the hospital - ended up getting the default meals till I figured it out. Plus, I was super nauseous and couldn’t even read the menu without feeling sick. So I ended up not eating much in the hospital… Having had help with the food would have been good.

Having some kind of cardio exercise machine at home was useful to me. Everyone says walking is best, but it is not always possible due to weather or air quality or whatever. (I have a Schwinn Air Dyne — relatively small size / noise / expense. It works  arms and / or legs  — I used legs only for the first six weeks, then added the upper body motion gradually.)

A back scrubber/ scratcher since you are not allowed to use your arms to reach behind your back.

Sue Maize  Thanks for sharing those lists Daneen and all these other great personal suggestions! I’m “bookmarking” this journal entry. 

Daneen Douglas  We can make our own lists with all the additional suggestions.  I’m going to make a modified version including all of our ideas.  When I do I’ll post it here in the next few weeks. 

Sue Maize  Sounds good to me! I’m going to invite a bunch of people over for a “cleaning party”  as per bullet #2! 😄😇

meg oconnell  Such great ideas!  Thank you all so much!  I already have a lift chair, I broke my humerous in three places 2 years ago and got one because I couldn't get out of a seated position on my own the first few weeks.  Plus, I knew it was an investment for when I needed my surgery.

J Alexander Lassally  Hey there - In my research, I learned that surgeons typically pitch what they know best - so def good to get multiple opinions !  

Yumiko Ishida  I did not have the procedure you are considering, since my challenge was mitral valve. But I did get a tissue valve via sternotomy. I’m a 54-year old female. I chose sternotomy over the “minimally invasive” method and chose tissue over mechanical valve, but left the surgeon to pick the valve brand and size. During our consultation we discussed it should be the largest possible valve that fits, to accommodate a future valve-in-valve, but the surgeon said my type of diseased valve (rheumatic stenotic MV) tend to be small, so he had backup tissue valves ready at the OR in case his first choice didn’t fit. With MV there is no root to extend, but since your challenge is AV , it does make sense to make modifications in anticipation of future TAVR. Try to get as much done in preparation of future procedures and to prevent future complications, like a maze and left atrial appendage closure.

Pamela Gregory  Hi there, I was 55 last year when I had my Aortic root and valve replaced. He did the root because it was very narrow not getting good blood flow and the new tissue valve would have been way to small for TAVR in the future. My Dr. was Roselli at the Cleveland Clinic

Nancy Bukowski  Hi Meg,  I also have a bicuspid aortic valve with severe stenosis.  That is the only issue I need to correct.  I went to the surgeon yesterday, and this is one of the initial questions that I asked him.  I am not interested in mechanical valve, one of the reasons being is that you need to be on blood thinners.  If, for some reason, you have issues with taking blood thinners, then clotting can become a risk with the mechanical valve.  My surgeon actually recommended the Inspiris valve for me.  I will send you the other questions that I asked him.  Since aortic stenosis is my only issue, I can have a minimally invasive surgery- a hemi sternotomy.  Hope that helps provide you with some food for thought.

Nancy Bukowski  One additional item - I am going for an additional test - a TAVR CT, which should provide a better picture of my valve and what size valve I will need.

Sean Adkins  I am 52. Dr. Lars Svensson at Cleveland Clinic just replaced my bicuspid in October with the Edwards Inspiris Valve using a hemi sternotomy j incision. I was sore for a bit but had hardly any pain and was on only Tylenol after my initial surgery. I was released to work and drive in 4 weeks and at 15 weeks I've been able to run/walk 4 miles. 

Sean Adkins  I am hoping for the same for you Nancy. I have been told by my local cardiologist that the Inspiris valve could out last me and that I may not need a future TAVR procedure. Here's an article about the 1 billion cycle test that was performed in 2022. Long-term durability of a new surgical aortic valve: A 1 billion cycle in vitro study - JTCVS Open

Anna Ma  @Sean, did your doctor discuss with you what your next step will be when the valve has its 15 year or so life time? Will you do TAVR? We are the same age, and I'm thinking to have Inspiris too. Is it Inspiris Resillia the only model for Inspiris valve?

Grace Mason   Hi Meg,
Glad to hear you are getting more than one opinion. I talked with 5 surgeons before deciding on where I would go. Each surgeon will have types of surgeries they prefer so you may get different opinions or suggestions from different surgeons.
I would ask what each surgeon recommends for you and why and then ask how many times a week or month he/she does that type of surgery and how many they have done it in their career. I would ask what percentage of his or her patients require a pacemaker post surgery. This is something that is often not discussed, but is typically higher thru minimally invasive(keyhole) surgery. There are many other questions that you could ask but it depends on what things are important to you. A big one is always mechanical or tissue and that really is a personal decision. There are pros and cons to both. I recommend reading as much as you can about your options available by using the search and reading other people's stories. You may find you will come up with more questions or possibly find answers to questions you didn't know you wanted to ask🙂.

Dan Fouratt  Meg,  I am a few years older then you (63) and will be doing a SAVR in a 50 days.  Like Sean I will have the smaller J incision and the same valve.  I am using Duke for the surgery.  Our total plan is SAVR followed by TAVR and then we will have 20 to 30 years of TAVR in TAVR experiences.  I think there were less then 500 done last year. IN 30 years it will be more common. This will push the horizon out well pass 30 years.  I am not a fan of blood thinners and that life style. Please read up on it. I put together a lot of information and question in for my meeting.  I posted it as a picture but if you can not see it let me know and I will send it to you.  My emails is Dan4att@gmail.com.  Good luck on your journey.  Dan

Nancy Bukowski  Thank you for posting the 1 billion cycle test article Sean!  I haven’t seen this one yet and will read it when I can get some downtime from work😀.

Dan Fouratt  I just read the link Sean posted - 25 years! I scanned it, I have read more test reports on various items in my life then I care to admit and this information is solid.  I will read in detail.  Good luck on your decision.

Sean Adkins  I also found this website helpful if the link will work correctly. The website is from US News and World Report ranking for cardiology hospitals. 

Best Hospitals for Cardiology, Heart & Vascular Surgery (usnews.com)

Sue Maize  Thanks for posting the article Sean—very helpful. A lot of great suggestions here Meg…I’m noting them for myself as well. You and I have the same diagnosis and also the gift of time to explore our options as much as possible. I keep saying it but this community and the resources here are truly a God-send. Ask anything and you’re certain to get feedback. 

Adam Pick  Meg, Great idea asking our patient community about this!  Super smart. 

Here are some questions I have found to be helpful for patients as they begin to interview their physicians.  

• Why do you think I need surgery?
• What type of treatment do you recommend? Why?
• What are your patient outcomes for that specific type of treatment?
• Are there any other less-invasive treatments to consider? What are they?
• How long have you been performing heart valve surgery?
• How many heart valve surgeries have you performed?
• Do you specialize in aortic, mitral, tricuspid or pulmonary therapy?
• How often do you treat patients with my specific form of heart disease?
• What are my greatest risks from a heart valve operation? How do you manage those risks?
• What do you expect as the best result from this operation? Why?
• What can you tell me about the recovery from heart valve surgery?
• Do you think I will need another operation in the future? Why?
• How should I think about the lifetime management of heart valve disease?
• What else should I know about you and your team that might help me make a decision?

Hope that helps!

Adam Pick  Also... I just noticed that you have a BAV... Is it stenotic? Regurgitant?  The reason I ask is that depending upon your valve, you may be a candidate for an Aortic Valve Repair or a Ross Procedure.  Not trying to make this more complicated.  I just want you to know there are several important options to consider.  If you need anything, please let me know. I'm here to help!

Allen Carkner  The Ross procedure was my choice for dealing with severe aortic stenosis due to BAV. This option is often more durable than tissue valves and doesn’t require blood thinners like mechanical valves. Warfarin must be monitored and tested multiple times a month and some have trouble staying in the optimal range. I also have heard the clicking from mechanical valves at my work as a phlebotomist standing next to patients. I felt I would be sensitive to this. Someone told me they felt like a “ticking clock”. Tissue valves may not last even 10 years and redo surgery more than 3 times becomes relatively risky. This all depends on your life expectancy. Wish you the best of luck! All three aortic valve replacement options can be a good fit depending on your preference.

Dave Walters  Mechanical 
I’m 40 and just had my aortic replaced, if the tissue valve only lasts 10-15 years , you have to think about bouncing back from that major surgery as time goes on 

Katheryn Applegate  I am 69 and I just checked my card...I received the same model valve as Sean in September 2020. Still going strong and doing all the things I love.  I have a followup In March and hope to hear great things!    The research is certainly encouraging (thanks for posting Sean!). I shied away from the  mechanical valve because I do a lot of active things and did not want to be on blood thinners for life.  Baby aspirin is all I take.  Best to you Meg!  It is a scary time, but you'll get through it and be better for it.

dave cameron  I was also Severely calcified bicuspid Siever's type 1 aortic valve and had my open heart surgery almost 2yrs ago at 58 at the University of Virginia.  I opted for a tissue valve (Edwards Lifesciences Inspiris Resila) due to my active lifestyle.  I did not want to be on Warfarin and worry about bleeding.  It was a tough decision since we are both on the border age wise. I was assured by my surgeon at UVA that in 10-15yrs I would be a candidate for valve in valve TAVR.  If you are not participating in dangerous sports as I am, you may want to consider mechanical and manage your diet and take Warfarin. As for questions for the surgeon, make a list of questions such as is TAVR an option (probably not since bicuspid), what are my current numbers and what has changed (I had three CT scans as well as Echo), hospital stay, recovery (I followed an ERAS program), etc...remember that your cardiac surgeons staff will provide you a lot of information, an entire notebook full!    

Sira Hotsinpiller  Hello.  I am 50 years and was diagnosed with severe aortic stenosis in July and had my  aortic valve replaced in the beginning of September. Looks like I had congenital bicuspid that had severely calcified.  I am athletic, and wanted to continue to be, so I decided to go with a tissue valve (Edwards Inspiris Resila 23mm).   Was able to go the less invasive route and had a 1/2 sternotomy and an aortic root enlargement.   I spent 4 days in ICU but it should have been 2 (bed shortage).  Hardly any pain.  I did take a baby oxy in the hospital.  But just aspirin after that.  Back to doing handstands and yoga and hiking 3 months post op.  My surgeon was Dr. Richard Shemin, chairman of  UCLA Cardiac Surgery. Amazing all around experience, the Dr.'s, the nurses,  the Ronald Reagan Hospital.  I wish you well with your upcoming surgery, Meg.  Feel free, to reach out if you have any questions.    

Also, I read many blogs before my surgery and things seemed like they were going to be bleak for while and my husband and I were prepared for that.  But my recovery was much better than expected in all aspects.  I was walking (slowly) 1/2 an  hour the first week and have been getting fitter and stronger ever since.  I have never felt better.   I hope this helps.       

Doran Herritt  Meg, You'll see a lot of comments about valve choice on here and that its a personal choice and that is very true. My two cents. I chose the Edwards Inspiris valve before it was approved by the FDA as part of the test group. I was 47; am 55 now. Seems to be holding up well but will eventually wear out and will need a reoperation. Hoping later rather than sooner. Chose it because I am active (basketball, Mtn biking, skiing) and didn't want to be on blood thinners. Am extremely happy with the decision especially with the advancements in TAVR, which may allow for replacement without OH surgery. I would choose the Edwards tissue valve again if I had to do it today. I have no regrets. On Hospital, find the best rated one that your insurance covers. US news has a good list and you can break it into hospitals near you and hospital specialties. I used Penn Medicine in Philly as it was the best in the Region. Had a great experience. As far as surgeon, find one who's done alot of these. I used Dr. Bavaria. At the time he was head of the Penn Medicine Cardiology group. He was amazing! Good luck with the decisions and surgery, The waiting was the hardest part for me. 


   

Lance McFadden  Hi Meg, I just had my aortic valve replaced just before Christmas 2023 because I had severe regurgitation.  I am 56.  The first 2 surgeons I spoke to pushed the mechanical valve due to my age.  However, I did not want to be on blood thinners for rest of life and the thought of having to do the surgery again in 10-15 years did not appeal to me.  I did some research and determined that I may be a candidate for the Ross procedure.  While this procedure is typically for children, it is becoming more common for older patients > 60 that do not have coronary artery disease.  Since the Ross uses your own pulmonary valve, you do not need blood thinners and it should not deteriorate as quickly as animal tissue valves.  I may not need a replacement in my lifetime.  I was fortunate to find a local surgeon Dr David Hockmuth at Des Moines Mercy who has done many Ross Procedures on children and adults  (this was my key question- finding someone with lots of experience with the procedure).  While I am only a couple months in, the results so far are very encouraging and my recovery is going well.  For sure the Ross is a more complicated surgery so you will have to weigh the pros and cons against what is important to  you and what you are comfortable with.  For me, the Ross procedure was the best choice based on my priorities and I have no regrets.  I could not be more please with the surgical and nursing teams that took care of me.  Best of luck to you with whatever choice you make, you will find a lot of information on the Ross Procedure right here on this site. (quick shout out to Adam and the fantastic work he is doing here)

Dan S-otts  Hey Meg, since you have some time to research, I would interview the surgeons that specialize in Aortic valves at the Cleveland Clinic. All my pre surgery research lead me there. Best of luck to you.

Rob Elwood  Meg, I did my surgery at Shands at UF Gainesville, with Dr. Hess, just 3 1/2 weeks ago.  I was overwhelmed at how great everyone was. There was a huge number of people involved in my care, and Dr. Hess is nationally renowned and just moved back to Shands. I had a Bovine Valve replace my aortic valve and my ascending aortic arch replaced with a Dacron sleeve. If you go, use the Valet parking. They will give you a voucher for it once inside.

Paola Gonnet  Yes I have ! And it is working beautifully, my surgery was last Jan at Cleveland Clinic. I feel fantastic and training 6x per week

Jerome Hill  I just had the valve implanted 5 weeks ago and working great. I had an echo last week and a stress test and all looks great.

john roland  Me three. No problems at all. My surgery was March 25, 2020 at CC. Within 3 months I was back to normal. It hurt a lot less that I imagined. I had a wicked cough for 3 weeks after surgery other than that, perfect.

Tom Everson  Yes. I also had heavy calcium build up on my Bicuspid valve. The Inspiris valve has a coating to help reduce the build up for us calcium makers My operation was 3 months ago and as Paola and Jerome say the valve is working just great. Check out the Edwards Life Science web site for more information

Lisa Hostetter  Yes I just got it on October 27. So far so good. I didn’t want a mechanical because of the Coumadin.

Bryan Smith  Hi Meg, I have my bicuspid aortic vale replaced Nov 2022 (at age 53) with open heart surgery. My surgeon (Dr Robert Larbalestier) in Perth Western Australia installed the Edwards Magna Ease valve. He explained the difference between the valves and how mechanical was not the valve for me. I'm back playing water polo, traveling, camping and enjoying life again.
https://www.edwards.com/healthcare-professionals/products-services/surgical-heart/aortic-pericardial
hope this helps.

Marie Myers  Good for you to start the learning process early! Lots of good info here, with articles under the “Learning Center” at the top of the page. If you have specific questions, just ask away. Lots of us have been through the heart surgery drill, and can help you along the way.

  Agree with Marie, at least you have time to research and make up your mind. Some of us were caught by surprise but this site was amazingly helpful to me. God speed

Susan Lynn  Meg - Overwhelmed is the official first step. We've all been there. The good news is that there are better ones ahead including Confident and Ready to Get This Done. You'll be just fine and we'll help you! No worries! ❤

john roland  Dr. Roselli at the Cleveland Clinic. His team was incredible as well as the whole hospital experience. I drove 8 hours every 6 months until my number was up. Well worth the trips.

Meredith Bray  Hi Meg, welcome to the site, glad you found us! You've got some great facilities in Jacksonville to choose from, my mom keeps telling me I should have come up there for my surgery. Please feel free to ask any questions!

Meredith
Clearwater, FL

Adam Pick  Hi Meg, Great to have you at HVS! The good news. Your valve disease was caught and diagnosed. Step one. Check. More good news. You have time - A LOT OF TIME - to research your diagnosis, your treatment options and your medical team. Step 2. Check. Now, the next step? Take a deep breath. Then, take another deep breath. Then, one more just to completely settle yourself in this moment. You are going to be fine. You are going to do better than fine. Simply take this process step-by-step, day-by-day and good things will start to appear for you. I know that sounds cliche and almost a bit counter-intuitive. How can good come from heart surgery? But, trust me. Trust the thousands of people who have come before you at this website and beyond. We live in a special time where heart valve therapy is a life enhancer. It just takes a bit of time and experience to process that. Please let me know how I can help. Adam

Rob Sparling  Meg, You found us! We were here the whole time waiting for you. Don’t forget to give yourself credit for getting this far. You are extending your life and it is worth it. Please read our journals. Especially if you are losing sleep like I was the months leading up to surgery. You’ve got this! ❤️💪

RAY PIPHER  You got this Meg. My surgeon was Dr. Alan Stewart who at the time was in NYC Mt Sinai and now in Miami FL. Highly recommended. Minimal invasive chest opening and heal time was not as bad as I thought it would be. As he told me when we met...soon this will all be in your rear view mirror. Good luck!

Valarie Carty  Meg your post falls on
the day, a year ago, I went in for testing and stayed. I ended up having open heart surgery 4 days later in November 1. When the surgeon said you need surgery and when it was schedule, I was in shock.
I asked if I could change the date, if I could go home and come back. It is a lot to take in. Sunday will be one year, and I am glad I did it. Never knew how bad off I was until so started to feel better.
You got this! Give yourself permission show emotion, give yourself time to be angry, and give yourself time to do some research before next steps.

Deena Elani  Hey Meg, totally hear ya. I have been placed in a countdown line-up too for my mitral valve. It could be 6 months, one year.. who knows. The shock goes away and then the more you educate yourself and develop a plan ((what surgeon and where), the easier it is to process. — because it places you in more control. So, hang in there with me and others. You have company:). I always remind myself how good the outcomes are now-a-days.

John Mohr  I am also new to the site and am having mitral valve surgery in December. The site is great and the stories helpful and encouraging. Good luck with your journey!

veronica gunthner  Welcome! I was diagnosed and needed surgery about 2 years later. That was 2.5 years ago. My advice would be to listen to your body. You know yourself better than any doctor, and it turns out they don't know everything! This site is a wonderful resource, and I'm glad you found it.

Jim Archer  Hi Meg, You came to the right place. Here you will find lots of information and others who have gone down the same path. Be sure to take the time to research the technology around valve replacement. Don't be overwhelmed, take your time.