Elaine's Guestbook

Elaine Cutri  Short answer, yes due to less bruising. This is what I know. The On-X's 2 valves open fully to parallel the artery wall, the St John valve is a few degrees less. With this full opening, the blood flow is less turbulently and allows for a lower INR value (blood clotting factor). I think all mechanical aortic valves require warfarin (Coumadin) therapy and sometimes older tissue valves (I started on warfarin when my pig tissue valve was 9 years, post implant). The INR factor for my St John valve was 2.5-3.5, I usually had bruises on my forearms and shins. The On-X valve has been approved for INR range of 1.5-2.5. My cardiologist thinks an INR of 2.0-2.5 is an acceptable range for me. Most of the time I am bruise free. The down side is the On-X is louder to me, but it could be the polyester aortic graph material that was used to repaired my ascending aneurysm. My cardiologist thinks the graph is stiffer and causes an increase in the volume. It took a while to get use to it, but it's not a big issue now.

Elaine Cutri  Thank for the guestbook note. I think my mom is very courageous too.
I've never had an ablation, so I don't know how that feels. I never noticed any pain in my heart after surgery. The sternum was sore and the breathing exercises were challenging.

Barbara Laurie  Thanks Elaine, Even though I've had chronic neck pain for 22 yrs, NEW pain gets to me. The groin catheters are just at the sore stage 10 days out! Yikes, makes me worried about the sternomoty (?) but, cross that bridge.. By the way, my heart pain is less today too. Yay!

Barbara Laurie  Elaine, Hello! I was wondering if you could tell me what type of repair you had done to the tricuspid valve of your heart❤️ Btw: felling back to normal, took two weeks but now the bruising is getting better and I'm back to regular activities. Thanks for your postings😄🌹

Elaine Cutri  The surgeon put a ring around the tricuspid valve to shore it up, called an annuloplasty ring. This resolved some regurgitation in the valve.

Elaine Cutri  Sorry for the delay in answering your questions. It's been a little hectic this week, but I have some thoughts on the subject.
Reading your story, you've had one OHS, this will be your second. I'm not familiar with mitral valves, but I think any mechanical valve requires blood thinners. I was 22 when I needed my 2nd surgery. They suggested a tissue aortic valve so that having children would be safer. Having that valve gave me some wonderful opportunities and I felt so wonderful being normal for the first time in my life. Even though it didn't last very long, 12 years, the last 3 required a low dose of Coumadin, I wouldn't trade that for anything. The 3rd surgery was suppose to be the last one, but that was before it was known that ascending aortas tended to develop an aneurysm. That was the reason for the 4th surgery. During that surgery, the surgeon replace the 22 year old St Jude valve with a newer technology and larger mechanical valve, On-X.
It's a little load, but it may be due to the aorta graph material. I'm getting use to it. The new valve INR threshold is a little lower, which I'm happy about.
P.S. I think there are many more tissue valve options and sizes in 2015. In 1965, my first surgery, the choices were extremely limited, especially for a little kid. They also had to worry about me out growing a mechanical valve, requiring another surgery as a child. I'll come back in another post about scarring. Look for the best surgeon and they can handle that issue!
I'll keep an eye out for you and a prayer. Let me know if you have more questions.

Emily Rowley 
My highly experienced Surgeon would prefer a tissue valve so I can have children (do they calcify/wear out after pregnancy?).

Did they say what condition your older mechanical valve was in when they replaced it?

I am bit curious as to how long before surgery do they find that right size pig valve lol.

That would great to hear about information on scarring.

Thank you Elaine :)

Elaine Cutri  Hi Autumn, I'm doing great. Almost 100%. I'm actually just past 6 months post op.
I hope your Cardiologist gets the information he needs to come up with a good plan. Hope you enjoy the holidays. Keep me posted!

W. Carter  At 6 months I remember that if I went for a 2 mile walk I would have to come home and take a nap. Now I go for a 4-5 mile walk and never lay down to take a nap all day. I'm almost at my 1 year anniversary and starting to feel pretty good. Also my chf is under control. i'm off of lasix 2 mo., no swelling, no congestion on lungs. The sun even looks brighter. God is Good! :-)

Elaine Cutri  Hi Michele,
I'm doing fine. Just got back from a lovely vacation with my husband. we spent a week on the Big Island of HI. We snorkeled, rented bikes, and did a lot of walking. All of these activities were comfortable for me, just like they were before I found out about my aneurysm.
The jury is still out regarding the On-X valve vs the St Jude. I will be seeing the surgeon who implanted it in December. I have some questions for him. 1. Is this valve easier on the blood than other mechanical valves? I like the blood flow of this valve over the St. Jude. It is closer to a natural valve - so I'm happy about that.
I am on a slightly lower dose of Coumadin. The range I am working with is 2.0-3.0. This is better than with the St Jude valve, INR 2.5-3.5. I have a pacemaker so I'm not sure if I can go down to the 1.5 range. But that is another question for him or my cardiologist (who I will also see in December). The current range is still helpful, I have fewer bruises.
This valve is a little loader than the St Jude, but I'm getting use to it. It's most noticeable just before I go to sleep or when it's really quiet. It takes just a few more minutes to get past the sound and then I fall fast asleep.
Best wishes! Elaine

Emily Rowley 
I liked hearing about your story Elaine :)

Is both the St Jude's and ON-X valves mechanical?

Emily.

Elaine Cutri  Hi Michele, I understand completely why you would be in shock, having just learned of this heart problem. I just don't want you to panic, it sounds like Dr Starnes is keeping an eye on your case. He is an excellent surgeon. This is a good place to keep asking questions, but you have a good doctor watching your case.

Before I go on, you are welcome to contact me at my email address evcutri @ gmail.com.

As far as your size, he works with children, I don't think your size is an issue and this being your first heart surgery, you don't have the complications of scar tissue from previous surgeries. I'm not much bigger, I'm 5'2" and 125 lbs.

You can get your children screened, probably start with a physician listening for a heart murmur and requesting an EKG or echocardiogram. These tests are non-evasive and give a physician a lot of information.

Once my aneurysm was a certain size I had a CT every 6 months. The first to second CT was the longest wait because I didn't know how fast it was changing. It was slow, about 1 mm a year.

As far as your aortic valve, they usually wait until the valve is severely stenotic and/or the heart is enlarged to a point that it would return to normal after the surgery or you are having difficulties with other symptoms. Did you get an X-ray? Did your cardiologist or Dr Starnes say anything about your heart enlarging? It may not be the case. Has he mentioned an aneurysm? You may have a normal aorta artery.

The CC outcomes are excellent. Since this was my 4th OHS, I wanted the best chance of a good outcome. It was going to be a challenge with the scar tissue and a difficult aneurysm going up into the arch. My USC surgeon seemed nervous. I didn't feel comfortable switching to Starnes after meeting with the other surgeon in his group.

Has Dr Starnes talked to you about valve options? Can yours be repaired? Has he mentioned tissue or mechanical? There are several types. They all have pros and cons. This is a continuous discussion on this site. It's a good discussion and helps everyone make the best decision for there personal situation.

Time for dinner. I look forward to chatting with you soon. Ask any questions you like. Best wishes.

Michele Tracey  Hi Elaine, As of now my Aorta on Ultasound shows a measurement of 2.5, which I think is normal. They mentioned nothing to me about an aneurysm. I've just read form this site that it's a common occurrence with BAV. I've also read there are hidden ones people find on CT. So I'm wondering if I should have a CT or MRI just to calm my nerves. I'm only seeing a cardiologist now at USC Dr. Tracey Lawerence with an Ultrasound once a year. I'm not ready for surgery, so I won't be seeing Starnes yet.

My heart is in perfect condition as of now, no thickening, not enlarge, normal stress and ejection fraction of 69%. I eat well balanced low fat and low sodium diet, with tons of veggies, and exercise too! I have an extremely low blood pressure and they say it's that of a teenager. My TOTAL cholesterol is high but my good HDL is high and bad LDL is high. I think because I was eating a lot of coconut oil, so I cut that out. Dr. Starnes wanted me to work on that, which I am!

I don't know how truthful or spot on Dr. Starnes can be but he projected me for surgery at 10 years or could be 15 years he said, but the cardiologist dr. Lawarence at USC said 5 years, but could be 1 because they have no previous test to compare me too. Dr. Starnes could tell I was terrified, so I don't know if he was just trying to calm me by saying its a long way out? My husband said no, that he can't say stuff like that because that's a liability, unless he was pretty sure. I want to trust Dr. States more as he's the surgeon! But, I don't know who to believe. I'm hoping the longer the better, as technology gets better, doctors get better, mortality statistics drop as years go on as they perfect our procedure with minimally incvassive techniques too! I pray one day they come out with a "forever" valve that doesn't require replacement or blood thinners. I feel we could be very close to that day and age within the next 10-15 years. God willing! I think, if my surgery won't happen for 10-15 years I would get a tissue valve because I believe technology will soon do everything though Trans cath or just not invasive or posdibly a forever valve I mentioned. I'm sure your amazed at their technology since you first underwent surgery. its amazing how much technology can improve in 10-15 years!

Dr. Starnes really pushes tissue valves and says these new ones are built to last 15-20 years. He said with rapid growing technology now days that he wouldn't be surprised if everything will be through TAVR and easy to replace for everyone. Again, I don't want survey at USC because their valve replacement mortality ranks at 4.5%-5% compared to Cleveland at 0.7-1%, do you blame me? Plus, Cleveland does quadruple or more amount of those surgeries a year! Also, I'm trying to keep my body in the best shape and health possible so that I hopefully will be a great candidate for a minimally invasive proceedure or mini sternum.

Dr. Starnes mentioned my Bicuspid valve can't be repaired because it's Stenotic at a 1.1-1.2. They can only repair bicuspid valves with regurgitation and I don't have any regurgitation. I was hoping for a repair as well.

I'm taking my kids to Rady's Chilrens to see a cardiologist. Please pray for them. I have faith in our Lord that they will be ok!

When you had a CT did you have contrast with it? How often do you get them now to monitor your situation? Also, how often do you get Ultrasounds now? Did you have a minimally incvassive surgery at Cleveland Clinic? Did Dr. Roselli seem confident doing your difficult procedure? Did he make you feel comfortable? Do you have to fly back to Cleveland for check ups occasionally? How many days after your surgery after discharge did you fly home? Where did you get your Cardio rehab at. I live in Murrieta near Temecula, so I know we're not to fat from eachother!

I can email you if you prefer that! My email is micheletraceyphotography@yahoo.com

Elaine Cutri  Cute picture of you and your husband!

From the information you have, it sounds like surgery is a ways off. The aorta is in the normal range. Closer to 4.0 is abnormal range. You might want to ask Dr Lawerence about an MRI. Once a year for an ultrasound/echo sounds ok right now. I completely understand your nervousness. The waiting game is not fun.

The other option is to arrange for a second opinion at Cleveland Clinic. The 3 surgeons you mentioned are all great. I called CC last August and sent my medical records to the Cardio-Vascular department. Dr Roselli reviewed my case, he picked my case. He said "not yet for surgery" and this was when my ascending aorta was 4.9 cm. I then made arrangements to see him in person 4 months later, in January (crazy for someone from So CA)!

It sounds like you are asymptotic, including your heart being normal size - this is great. Staying in good shape and eating healthy is your job now. I agree that the coconut oil may not be a good thing for you or me. I've looked at that too. My cholesterol is a little high. My HDL and LDL is high so no cholesterol melds for now.

I agree with the information you found on the outcomes. I did not like USC's %.

I will have a CT in December when I go for my post surgery follow up in Cleveland. Then it will be 5 years for the next one. I'm not sure how often I will get an echo/ultrasound with my local cardiologist, maybe once a year(?).

I'm doing my phase 2 cardio rehab at my local hospital, Huntington Memorial, 3 times a week for another month. Then I will probably continue there in phase 3, on my own.

Last few things, waiting for surgery is stressful, but improvements in technology and technic are continuously improving. This is to our benefit. That's why I waited 2 years for my surgery. The wait wasn't fun, but the outcome was the best I could get. I had a tissue valve and that was great! It just didn't last that long and TVAR was not an option at the time it needed replacing (I had symptoms of fatigue at that time). If you can do the tissue, that would keep your lifestyle very much the same after recovery.

Let me know if I forgot something. Have a great weekend. I'm one the train to meet up with my mom and sisters for her 88th birthday today, Halloween!

Michele Tracey  Thank you Elaine! If I could hug you right now I would! Have fun today! Happy Birthday to your mama! I can only dream and pray I can live to 88 one day! Much love to you my friend! Xoxo

Michele Tracey  You make me feel like I have hope of making it through one surgery if you have made it through 4! I can't tank you enough! Godspeed healing to you my sweet friend! Have a great Halloween with your family! Much love to you!

Michele Tracey  Yes, one question I forgot...how long did you stay in Cleveland after your discharge and how was the flight home?

Elaine Cutri  I'm back on the train. Had a great weekend with family. Mom's birthday yesterday and baby shower for my nephew and his lovely wife today.

The plan was to be in Cleveland about 3 weeks, a few days before admission and a week after discharge. It ended up to be 5 weeks due to some fluid that settled behind my right lung after the first discharge. I ended up being readmitted for an "in office" procedure due to the Coumadin that I take. We stayed at the Intercontinental Suites and we're pretty comfortable. It's right on campus, about 2 blocks from the Cardio and Vascular building. There is a second Intercontinental Hotel and conference center on the other side of the Cardio building. Other hotels are not as convenient, but may be less expensive or more luxurious. We were comfortable, they were nice and they knew how to work with the heart patients. There were quite a few of us.

This was the first time I had issue with fluid. I think it was due to the long surgery and it was a reoperation.

Elaine Cutri  Hi Michele, no worries about the questions. My aneurysm was discovered by an echocardiogram in 2013 of the heart (they were monitoring my mechanical aortic valve). The report stated that the aortic root was dilated to 3.9 cm. My cardiologist requested a CT and it showed a fusiform aneurysm of my ascending artery at 4.8 cm. I then went to a surgeon at USC/Keck for another full-length CT of my torso to look at the whole structure (BTW - Starnes is an excellent surgeon, I was seeing another in his group). I cannot have an MRI since it involves magnets and I have a pacemaker (a metal device).

As far a risk for additional aneurysms, my surgeon at Cleveland Clinic said studies are showing that the ascending and arch of the aorta are of one type of tissue and the descending is a slightly different type. I can't explain in more detail, but I've seen a 3D model of my upper torso and could see exactly where the aneurysm starts and stops. It was very fascinating.

My diagnosis for BAV started when I was a little girl of 3 or 4 and it was stenotic. I had my first surgery 1965 at 7 (a repair of the aortic valve). The result was a wider opening, but there was leakage. Better, but not great. At 22, I had a porcine valve implanted. It lasted 12 years and became very stenotic and probably had some regurgitation. The first 9 years with the valve were fabulous, I did some amazing activities, but then I had a seizure (one and only) and they could see the valve was showing its age. They prescribed Coumadin and I've been on it since 1990. In 1993 at 35 they implanted a St Jude mechanical valve with the hopes that #3 would be my last open heart surgery (and I received a pacemaker due to damage of the sinus node resulting in AV block). Looking at old echo reports, my root was slightly dilated, but the correlation between BAV and aneurysm had not been discovered. I did not hear about the correlation until ~2006, but didn't think anything about it for myself.

Coming into 2015, I was told to expect surgery #4 within the year to repair my ascending and arch of my aorta. They had to graph part of my carotid artery, but I think it was from the previous surgeries. It is a clamp site that became fragile (I will ask when I have my surgical followup in December).

I was offered a tissue valve, but at 57, that would mean another surgery, #5. That is something I do not relish. I have a wonderful, supportive husband who has been through 3 of the 4 surgeries with me. I can see it is hard on him as an observer. I have learned to live with my mechanical valve and Coumadin. Although the St Jude was working as it should, it was 22 years old and slightly undersized. The surgeon, Dr Eric Roselli recommended a replacement with a slightly larger valve. I got a new On-X mechanical aortic valve, slightly bigger (from 21 mm to 23 mm). The INR range is slightly lower, so I can take less Coumadin. My surgery was in May 2015. Recovery went pretty smoothly and feel very energized and back to my normal routine. I am very active and feel very blessed to be part of this world.

As far as your Cardiologist question, Dr Gary Conrad is my Cardiologist. He has done a good job for me. There is another Cardiologist in his group, Foothill Cardiology, Dr Alex Durairaj, that my primary doctor regards very highly.

Elaine Cutri  Hi Autumn, rehab has given me confidence to get my strength and endurance back in a safe environment. My work-out buddies are encouraging and entertaining as well.
Keep me posted on your progress for answers. Good wishes - Elaine

Elaine Cutri  The brand of valve they choose could be based on personal preferences. My surgeon at the Cleveland Clinic prefers On-X and his peer at CC prefers St Jude. Both are extremely skilled surgeons. Dr Roselli told me the On-X opens more fully. Blood flows smoother through the valve and the INR range was lower. I looked up the mechanics of the On-X valve. It made sense to me. The INR range for St Jude valves in the aortic position is 2.5 to 3.5. The INR range for the On-X is approved to be 2.0 to 3.0. It may even be dropping to 1.5. Normal range is 1.0. Currently I am around 2.5 range. I notice that I have fewer bruises now than when I had the higher range. This has been a nice improvement.

Elaine Cutri  I just saw your updated story. You have to wear track shoes to keep up with 5 little ones! Good for you in asking for the echo. Let me know if you have any questions. I'll keep you in my thoughts and prayers.

Alma Mater  Thanks, I appreciate it. I am so glad I stumbled upon this site. It's really encouraging to see those who have already walked this path before!

Elaine Cutri  I'm not sure if this comment will show up twice...
I live in the Los Angeles area. I interviewed a couple of surgeons here and they were not completely comfortable with the procedure. The odds of success they quoted was 85-95%. I knew my surgery was going to be very difficult due to the extent of the ascending aortic aneurysm repair (from root to far side of the arch) and it was my 4th open heart surgery.
I found the Cleveland Clinic through an Internet search. I reviewed their outcome reports and they were better than the national average for re-operations like my case, better than 99% successful outcome! I viewed Eric Roselli's Aortic videos before I knew he would be my surgeon. I met him in Jan 2015, he was passionate about his work and said he had "awesome" team, like they were the stars of the show, not him.
I had surgery on May 20, 2015. The surgery went very well, even though he encountered a surprise or two. The surgical wound healed very quickly. I had a little trouble with low blood pressure and fluid retention shortly after discharge, but that can happen frequently with re-operations. The good news is the fluid was not is a dangerous spot (not around the heart) and is now gone. I feel pretty good and I walk about 2 miles a day, most days.

Autumn Griffin  That is awesome!! I was reading that Cleveland Clinic is top notch for heart surgery. I have put off going there because they are out of network but it seems a little silly to do that when they are in my backyard

Elaine Cutri  Are you sure they are out of network? They were in network for me, which shocked me. They are considered a center of excellence and the claims went through easier than usual.

Autumn Griffin  Well, I go there to see my rheumatologist. I think they cover a little less than normal when in network. But it is my heart I am talking about, so.....I guess I thought I would just see what the cardiologist down this way said first. In case it wasn't a big deal.

Lisa Amiri  People come from all over the WORLD to The Cleveland Clinic heart department.....enough said?
Exceptional doctors, exceptional care you won't be disappointed!