Hugh's Journal

Dan Fouratt  Hugh, Great to here and yes an a person who went through a mini I believe they are great.  My recovery was quick.



Good Luck on your journey,



Dan

Susan Lynn  Hugh - What you're describing is a minimally-invasive mini-thoracotomy. That's a side incision to access the heart. But, the repair or replacement of the valve is exactly the same. The mini-thoracotomy is also considered open heart surgery even if the entry is through the side of your chest. The surgical time is usually longer, than the sternotomy or mini-sternotomy as those procedures provide the best view and easiest access to the heart. The recovery from the mini-thoracotomy can be a bit shorter because there are smaller incisions, but the heart doesn't heal any faster. There's also another incision in the femoral artery above the thigh for the bypass connection that isn't needed for the chest access approaches.
I had a minimally-invasive mini-thoracotomy and would choose it, again, but it sounds like you're going to incur some significant costs and may be getting a sugar-coated description of what you're getting. As one surgeon once said to me, 'In a month, it won't matter how your heart was accessed.' In short, the entry doesn't make that much of a difference - scars and bones heal fairly quickly. Make sure your focus is on a good result because that's what is really important. Best of luck to you!

J Alexander Lassally  The keyhole is Open Heart Surgery. It is just an question of access.. The UK is the only country to use this Keyhole naming... It is marketing.  The idea that the "success rate" is higher than OHS is not valid.  

I think you may be associating sternotomy with open heart surgery, but all thoracotomy is still open heart surgery.  

Note that in 2023, there was a significant  analysis published in the UK which showed that thoracotomy was non inferior to sternotomy for some valve issues.  The sternotomy is the standard for aorta and mitral excellence - and comparator approaches such as thoracotomy (or keyhole) will always seek to be non inferior -- which they may be in skilled hands. In Europe, they often study case series only which may show success of a surgeon, but it is not a superiority claim. 

Good luck in process. 

Hugh Martin  Thanks for the comments. I accept it's open heart surgery, but the breastbone isn't sawn in half and neither are the ribs pulled apart. The recovery time is 4 weeks, rather than 12, all of which make it a very attractive proposition to me, even if it costs more money

Susan Lynn  Hugh - I totally understand. There was something about having my sternum cut that was incomprehensible to me. I had a much easier time facing surgery knowing my bones would remain intact. The choice is individual and yours alone. Just keep your expectations real. Remember that surgeons aren't just medical professionals, they've had to become salespeople in today's competitive healthcare environment. Let the buyer beware. Best of luck to you!

Hugh Martin  Totally agree Susan. However, as far as I am aware, there is no reason to suppose the open heart surgeons are any less salespeople!

Hugh Martin  J Alexander Lassally, I have done a lot of research into this and have not been able to find any evidence thoracotomy is in any way inferior to open hear surgery. In fact, the reverse is the case. The reason that more people don't have it done is the cost and the lack of surgeons with the skill to carry it out. Thanks for your good wishes

Fidel Martínez Ruiz  I think you two may be right. Both approaches, open
surgery and thoracotomy, give good results. 


 

Marie Myers   I don’t know of any way that the aortic root an be repaired without open heart surgery. I was in your same situation almost 8 years ago, and was not too happy to hear i needed open heart surgery . But some things just have to be accepted. I finally accepted the fact that i needed open heart surgery and had it done in March 2017. It was not a walk in the park, but it was doable. The first 2 weeks were the hardest, but i regained my strength little by little, day by day. I went back to work (in the operating room) at 2 months. I eventually got back to tennis, pickleball, yoga, and even horseback riding. If you had told me i would be going through this 10 years before, i would have said you are crazy! But we all have our own genetic hand dealt to us that we must play. You WILL get through this, just like many of us. I am Hoping you can find the acceptance you need to find.

Rose Madura  High, Marie said it very well!  I might add that since you are an "exercise fanatic," you will more than likely do very well in recovery.  I had pretty much the same surgery as Marie and am doing well 7-1/2 years later. God bless you on this journey. 

Civita Fahey  I have researched this and there are some clinical trials on doing aortic root repairs endovasculararly  at Stanford. I dont think though at this time, that its the standard. I asked my own doc as I have an anuerysm that is being watched, and she said right now its open heart. But, its in the works.

https://med.stanford.edu/ctsurgery/clinical-care/adult-cardiac-surgery-services/endovascular-aortic-surgery.html

Richard Munson  Sometimes you have to choose between surgery and living. I always lean toward living. Will you be able to continue your exercise regimen without the surgery ? 

susan harris  i’d encourage you to really think about what concerns you and ask card and surgeon very specific questions. my son asked his surgeon point blank - exactly how many patients have you lost in the OR out of how many surgeries you’ve done like mine. he flatly answered “2” and gave specifics about their conditions (multiple health issues), when (over 20 years ago), and admitted he probably shouldn’t have been doing surgery on them. today, there would be different options or timing for them. it really put my son at ease. 

Hugh Martin  I am currently reearching the possibility of the cardiac procedures I require being done by keyhole surgery. Does anyone have any experience of this please?

Marie Myers  There are lots of people who have had minimally invasive surgery (keyhole) on this site. I am sure they will chime in. But be assured, that keyhole surgery is still heart surgery using cardiopulmonary bypass. There will still be a recovery period, but the way the surgeons get into the heart is the main difference. 

Hugh Martin  Thanks Marie. I accept what you say, but because the breastbone is not sawn in half and neither are the ribs pulled apart, the recovery period is far shorter (4 weeks, compared with 12). It is more expensive, but in my view it's impossible to put a price on health

Valerie Allen  Intervention for aortic aneurysm is generally 5.0 but there are may be some differences due to traits. Perhaps they want to do it along with your valve? However, if they just do the valve it might be repaired which is a minimally invasive procedure. So if this is what you’ve been told, I’d ask more questions and/or get a second opinion. Perhaps others can comment.

Richard Munson  My aortic aneurysm is in the low 4.2 cm but i heard an interesting fact when i had my last echo and it concerned a persons physical size. Take a 4.5 for example. That is more critical on a small person then on a tall person. No idea why but my cardiologist confirmed it to be true. 

Marcus Krauss  Same, Richard. I'm 6'2" and weigh 210 pounds. My cardiologist told me a few years ago that because of my size, he wouldn't consider my aorta a problem until it got up to 5.0. It was at 4.5 when I had my Ross procedure, and the aortic root was replaced with a Dacron sleeve, so hopefully I shouldn't have any issues going forward with it continuing to expand.

Hugh Martin  Thanks for the comments, guys. I have a bicuspid aortic valve that I wasn't even aware of until I was 50, certainly not when running marathons. My cardiologist says this what has caused the aneurysm and why both elements have to be dealt with at the same time. What I would like to know, having regard to the fact that both can be dealt with by TAVI, is whether this is a possibility, rather than OHS that absolutely terrifies and will knock me out of action [I am an exercise fanatic] for several weeks. I am also 6'2'' and weigh around 200 pounds

Marcus Krauss  Using the transcatheter procudure to initially replace the aortic valve in younger patients isn't very common, for a few reasons. Since the new valve is inserted inside the diseased valve, you wind up with a narrower aortic valve opening, which means poorer hemodynamics overall. This is not ideal if you are an active person like you are. 

Also, the TAVR valve only lasts about 10 years, so when it wears out, the solution is to once again use the TAVR procedure to insert a new valve inside the existing valve. You don't want to just keep inserting valves inside old valves repeatedly, further narrowing your aortic valve. At some point (possibly even after the first TAVR), you'll reach a point where it's no longer possible to keep inserting new valves inside the old ones as they wear out, because there's no room left. 

Currently the TAVR procedure is intended for patients that may have too high a risk for open heart surgery for whatever reason, where the shorter lifespan of the valve and reduced hemodynamics are less important than finding some solution that will be better than nothing. It's also used in older patients, whether they are first time valve replacement patients or people that had their valve replaced when younger and it's now wearing out, but they are pretty close to end of life, so there's not really a concern that it's only going to last 10 years. 

There are some studies being done about the suitability of TAVR for younger patients looking at their first valve replacement, but as I understand it the results are mixed, so it's still not a recommended course of action. I think you'd be hard-pressed to find a cardiologist or cardiac surgeon that would recommend TAVR for you. Given your age and activity level, I would recommend researching the Ross Procedure. There's information about it on this site. It's what I had done (I'm 46 and also work out a lot). There are quite a few other Ross patients here, including Adam, who runs this forum. The Ross is the only procedure that restores lifespan back to that of the general public, has the potential to last 2-3 decades before a potential re-intervention, and doesn't require blood thinners like a mechanical valve. It's a more complicated procedure, but new data published within the last few years has brought it to the forefront as a good option for young and middle-aged patients.

Hugh Martin  Thanks Marcus. I will research the Ross procedure [which I assume involves OHS]. I am 75, so any procedure that lasts for 20 years is ok by me!

Marcus Krauss  Oh for some reason I thought you were 50, but then I re-read your post and saw that you found out about your condition when you were 50. In that case, at age 75, a TAVR may actually be a good option for you. I think with the Ross Procedure, it's typically considered for patients age 60 and younger.

Hugh Martin  I think so too. However what I would like to know is whether TAVR and TAVI can be done together or a short time apart. My cardiologist is keen on OHS that I would like to avoid if at all possible

Richard Munson  It’s hard to keep up with all the new technology. So when someone says you look like skin and bones, it may be true. 

Allen Carkner  Not a doctor but that is my understanding as well. You want to keep your own valve as long as possible. TAVR is not generally done on calcified bicuspid valves especially in younger low surgical risk people. Good news is you get to keep watching and waiting. It took a few years for me to go from moderate to symptomatic severe stenosis from my bicuspid valve. At that point my heart was still not enlarged or just slightly and still maintained a good ejection fraction but it was time for surgery. Hope you find a way to manage your expectations and anxiety around your heart. We’re all a little different and so are our hearts. Take care!

Marie Myers  With a calcified aortic valve, it is my understanding that the risk of knocking off some calcium is higher with a TAVR. I also thought that a TAVR is more difficult to seat tightly on a bicuspid valve because of the irregular shape of the bicuspid valve itself..I had my bicuspid valve replaced with a bovine tissue valve 7+ years ago, and am hoping for TAVR next time around. So far, so good…

Lynne Anderson  I was on the "wait and watch" protocol starting in 2019. My cardiologist planned on TAVR at some point but my echocardiogram in late 2023 suddenly showed my aortic stenosis had progressed quite rapidly in one year. Further tests indicated a bicuspid valve that was too large to be replaced via TAVR. Also, I had begun to develop an aortic aneurysm which my cardiologist and surgeon wanted fixed. I requested minimally invasive OHS, but my surgeon wanted as much room as possible to repair the aorta.  I'm 9 weeks post-op and it really wasn't as bad as I thought it would be. Uncomfortable at times, but I was never in any pain.  Other than a very thin pink line in the middle of my chest, I often forget I even had surgery.

Grace Mason   That was also my recommendation from a few different surgeons. Watch and wait, open heart. I think both are good advice.

Hugh Martin  Thanks for the helpful comments, guys. I would like to avoid open heart surgery if it all possible, not only because the prospect would terrify me, but also due to the long recovery period. it's a tough decision, but I would prefer to limit my exercise regime [although my consultant said I could continue with the couch to 5k programme, do circuits and even trek up to 20 miles with training]. Whatever happens, I am not going to go against my consultant's advice [my wife wouldn't let me!] 

Lynne Anderson  Hugh, probably one of the best things you can do is keep up your exercise regime.  It will make recovery much easier. And yes, the thought of OHS terrified me, but the recovery was much easier than I thought.

Diana Chamblin-Bevirt  Hugh, initially I was evaluated for the TAVR for  mitral valve repair, but the surgeon determined I was not appropriate for that and he determined I needed open heart. I was very disappointed but apparently TAVR surgeries are for patients who have higher risks, other medical conditions, etc. and couldn’t tolerate open heart surgery as well. My surgeon said because I had very low risk for surgery, he could go in and do everything needed, and I would have a much better outcome with great chance of eliminating the regurgitation, compared to TAVR. 

Hugh Martin  Thanks Diana, but I understood TAVR was not now limited to high risk patients. However I am not an expert in this field, so would be interested in other views. Best wishes on 19th btw

Nancy Bukowski  Hi Hugh, from what I understand and the research that I had performed, there is a lot of criteria to be considered pertaining to the various surgeries and which would enable the best possible long term outcome.  In my case with a bicuspid aortic valve, it was determined that TAVR was not the best option.

Valerie Allen  Same for me, Nancy. With a bicuspid valve causing aortic stenosis and aortic aneurysm, I was evaluated and told that a bicuspid aortic valve generally necessitates OHS because for TAVR they push the current valve to the side and the bicuspid valve prevents a good seal. So they do OHS first to set it up for a future TAVR.

Mary Malone  Hi Hugh I was also evaluated for a TAVR, but due to the narrowness of my valve due to calcification I needed an AVR I did this all at the Cleveland Clinic, Ohio. I had a minimally invasive AVR, which was still open heart surgery, w/o the sternotomy, which left me w a 4" horizontal scar between my 2nd and 3rd rib. Don't know if anyone else is doing this minimally invasive approach. Best of luck

Suelynn Hanegraaf  I’ve had AVR twice - most recently in April. I was told I was not eligible for TAVR both times due to my age, size of aortic root, health, etc., by two major heart institutions - Cleveland Clinic and Northwestern Medicine. Now that my aortic root was replaced and enlarged during my 2nd AVR, I will be eligible for TAVR for my 3rd (if I meet other criteria). Every situation is different. 

Diana Chamblin-Bevirt  Yes I think it is mainly up to the surgeon, and each patient has their own individual situations that make them a candidate for one vs. the other.

J Alexander Lassally  You are missing the durability angle here. There are significant differences in durability of procedure and the melding of age and risk long term in some cases.  I don't think people choose open heart surgery, but it can be the best investment in a durable long term outcome. 

Allen Carkner  TAVRs don’t last forever and valve on valve is still in its infancy. My cardiologist described valve in valve as being imperfect because inevitably the opening has to be smaller than the original in order to fit inside the first TAVR. so in essence, you might start with some “stenosis” upon insertion of the second valve. People with a long life expectancy or specific valve morphologies often benefit from more involved durable valve replacement options in spite of the intra and peri operative risks of minimally invasive procedures and even full sternotomy open heart surgery.

Adam Pick  Thanks for the kind words about the website Hugh!  I will pass that along to our team.  Regarding your point, I see the value of TAVR for certain patients.  And, I see the value of OHS for other patients.  While my surgery (a Ross procedure) was done almost 19 years ago, I would still have opted for OHS today.  I was a younger guy (33) and I was hopeful that the Ross Procedure would provide me a life-long fix without anticoagulation. So far, so good. There are so many options these days for all types of patients, it is so very critical that each patient does his/her research to figure out which is the best treatment given their specific disease, their lifestyle and the lifelong management of heart valve disease.

Hugh Martin  Thanks Adam, I have a bicuspid valve [it wasn't discovered until I was in my 40s and didn't stop me running over a 100 marathons]. I would like to know whether this would prevent my having TAVR, as I don't like being in hospital and want to get back to exercise and running asap. I am 75 btw

Hugh Martin  Hi Adam, when you say, 'which is the best treatment given their specific disease, their lifestyle and the lifelong management of heart valve disease', how much of this is down to the patient and how much to the cardiologist. It takes a brave person to go against their advice!

Marie Myers  For me, 2 aneurysms insured that I would have SAVR. I have also read that the irregular shape of some bicuspid valves can make TAVR difficult to seat the new valve without leakage. The other difficulty with TAVR in low-risk “healthy”  patients is the lack of long term data . Since TAVR hasnt been as widely available  to healthy patients, I don’t believe we have tons of data for long term ( over 10 years)  valve function.  All said, I am hoping that my next valve will be a TAVR when my current valve deteriorates. As my cardiologist says, “I will ride the wave of technology” !

Rose Madura  Many reasons actually.  In addition to what Marie said, my aunt had a TAVR as a "healthy" patient (the first in her county) and it lasted 9 years. She had a second one last year but passed away a few months later of cancer so we'll never know how long that would have lasted.  If you are young, not a good option. I was 59 when I hand SAVR and doing great nearly 7 years later. Like Marie, I anticipate a TAVR in the future.  TAVR is not a once and done unless you are older. SAVR is no picnic in the park but very doable.

Jennifer Fuller  Yes. I think there can be a difference of opinion on this. My cardiologist, who recently retired, told me when I was at moderate and on the cusp of severe, that I could probably wait quite a while before surgery. The cardiac surgeon I saw looked at my test results and felt I had been a candidate for surgery for at least a year when I saw him. He said the old thinking was to put off surgery as long as possible, but that too many of the patients who waited didn’t have positive outcomes, so the thinking has changed.

Isabella Heart  If you have slight to moderate stenosis, you may  have years before you will have to do anything! Definitely get a second opinion!!!

Sue Maize  Mine went from moderate to severe within a few months and my surgeon told me I probably should have had the surgery a year ago. Another opinion might help ease your mind.

Sue Maize  Hi Hugh, anxiety is to be expected. Heart surgery is a major life event. When I was first diagnosed with aortic stenosis my cardiologist said it wouldn’t be an issue for another 20 years, so I was able to put it out of my mind. Then when I found out just before Christmas that I would need AVR surgery soon, I was shocked and devastated. It’s all I thought about for the next 3 weeks as I tried to get my will updated and spent almost every waking minute researching my options, I’ve read a lot of similar reactions from this community.  Because my stenosis is now severe I need to be careful how much I exert myself, but I was hiking regularly before this latest announcement…fortunately nothing bad happened out on the trails. And my cardiologist said I could continue to walk and hike and even lift light weights, but to not overdo it. Your valve is mild to moderate so you should be okay, but listen to your doctor because you may not know when or how fast the stenosis will worsen. How often do you get echos now? It’s good that you jog with friends. Keep living your life! 😊

Rita Savelis  "Overdo" is a very vague term. I hear you Hugh. Keep moving. Keep jogging. This is so necessary for anxiety, which can be rampant pre-surgery. You're not even there yet. Do what feels right for your body.  Anxiety is normal pre-surgery and post surgery. Talking about it can help. Complaining is always okay! So sorry that you have to go through this. But keep up with the jogging and with whatever makes you feel better.

Amy Berger  I found out I had mild/moderate aortic stenosis on an echo cardiogram because I'd always had heart murmur and my Dr. wanted a "baseline". We were shocked because I had no symptoms no family history and no other health problems. I had immediate anxiety and Googled everything I could which didn't help at all. I was also considered younger as I was 65 at time of diagnosis. For the next two years I went for echo cardiograms every six months, then every three months as stenosis went into severe. I maintained severe status for about 18 months. Looking back, my life was pretty much consumed by thinking about it and pending surgery. I had open heart surgery a year ago this week to replace my aortic valve and root expansion. The surgery was easier than anticipated and recovery was much quicker and also easier than anticipated. The absence of anxiety and stress is such a relief! Keeping busy and involved with "normal" routines and friends is the best way to cope - I'm just so thankful that there is a cure for this and so thankful to the medical community. Stay close to this website, it was a lifeline for me.

  I was diagnosed with severe stenosis and severe regurgitation a few years ago. At the time I lived a completely sedentary life due to a back injury that flared up if I did anything physical.

The day after my first echo I started working out 5 days a week, a mixture of moderate weightlifting and HIIT cardio. I've maintained that routine every week since that day.

I had terrible heart related anxiety for a year or two before my diagnosis due to some palpitations and for some time after. However, now I have little to none.

In addition I actually was diagnosed with moderate stenosis and regurgitation when I was 12, but that was kept secret from me. I went through high-school playing soccer and football. I went through my twenties disc golfing and hiking the mountains of western Montana, my heart never limited me. 

I would keep exercising and consider talking to another Cardiologist about it. 

J Alexander Lassally  Yep - Hello Anxiety!  Not being facetious, but frank. It was hard to explain how the specter of heart surgery consumed everything for me in the buildup .... The good news is that at least in recovery you can focus on recovery (or future travels - Everest of not!) 
And yes, less ability to exercise, but one must just accept that. 

Marie Myers  Yes, anxiety definitely increased with the “You need heart surgery” mandate. Physical activity helps me dissipate some anxiety, though I don’t quite do as much as I once did. (Then again, I am 70 now…) I also do some yoga and meditation to help keep anxiety at bay. As my cardiologist says, “you have to live your life” and so I push on. You can do it!

Grace Mason   Absolutely, I think that is the norm. Our hearts are our engines and hearing it isn't working right is scary. My greatest anxiety was immediately after learning about it and hearing about worst case scenarios when I didn't really have a great understanding of my heart problems. Eventually I started living my life again. Truly everyday I wake up and I don't know what the day holds for me, heart problem or other possible life altering event, so I try to remember that even now post surgery.
Hearing it was time to talk to a surgeon triggered the fears again. Fortunately, I was only restricted from running marathons and lifting more than 70lbs, so exercise was(is) one great stress relief. The other things that helped me manage my awakened anxiety the most, were Adam's blog site and members, learning more about my choices, and some days anxiety meds.

Hugh Martin  Thanks for the responses, guys. I can't help comparing my present situation with one 14 years ago when, after becoming breathless when running a couple of miles, I was eventually fitted with a stent [although I had to 'twist my cardiologist's arm' to have an angiogram. I went on to run a marathon 4 months later and over 50 after that without even thinking about my heart!
I think the difference this time is that I've not actually had anything done [apart from a couple unsuccessful ablations for AF] and being prescribed a wide variety of medication, so I felt a bit of a fraud attending a rehab class.
I have echocardiograms every 6 months and don't know whether I wish they would show the need for a new valve or not! In any event, when the time comes, I hope it is by TAVR, as I would be terrified of open heart surgery and the long recovery period, never having spent more than one consecutive night in hospital.
I have to say I am really glad I found this site and sharing experiences in this way




 

Grace Mason   Just an added note Hugh, I am 4 months out from open heart surgery and the experience and recovery was not nearly as difficult as I imagined it would be, if it comes to that for you.

Suelynn Hanegraaf  Often an anxiety disorder is triggered after a life-changing experience. I can recall noticing that my anxiety flareups increased after my heart valve surgery. Meditation (letting go), walking in nature, volunteering and being with family and friends help to keep my anxiety at bay. You are not alone. And by the way, open heart surgery and recovery is not as bad as you think. Better to live!

Hugh Martin  Thanks again, guys. I recently read an article about people suffering from depression after heart surgery, but, as you say, there are solutions to this. It just just means getting off the couch and out there!

Rita Savelis  I had depression after heart surgery (which is as common as anxiety before heart surgery). No need to think too much about that now, Hugh, but awareness of any common late effects is good so that if and when they happen you can feel you are part of the norm and not like this is happening only to you. 

Sue Maize  I was thinking the same thing Rita…I’d love to connect with you personally  somehow, maybe email. Let me know if you’d be open to that, no pressure. 😊

Hugh Martin  I have been told by cardiologists that running marathons in not good for the heart and led my having an enlarged atrium and AF. However they accept it is not the cause my my aortic valve stenosis that apparently occure in time with bicuspid valves however healthy the diet! 

Paul Lebel  Not a clue.  All my workouts are at sea level.  Curious about your reason if it's just to fly in and out. I assume you have high attitude experience?  Even if you don't hike the distance,  any work you do there would be very taxing. Mt Whitney in CA is comparable height but you have to hike it (and it's snowy atm). Are there any high altitude hotels in the Rockies you could hang out in for a week to see how you'd do?

Marie Myers  You are obviously in great shape!  You have also gotten a lot of mileage on that bicuspid valve. Just keep up with your checkups !

Susan Lynn  Wow! You have had an incredibly active life, but if your cardiologist advises against trekking to Everest base camp, you should probably listen. While you have many, many impressive accomplishments behind you, there are only so many years ahead. It is said, 'For everything there is a season and a time for every purpose under heaven.' Wishing you the best!

Deena Z  Hugh, you definitely push yourself to the limits.   It's who you are and you thrive in that space, so I can see why it is hard to limit yourself to moderate exercise.  Your moderate is probably more extreme than for the average 40 year old man:).  I can't speak for the medical side, because it is a medical call as to what you can and can not do at this point re: trekking.  Whatever you do, don't loss that love for adventure!

Hugh Martin  Thanks for the positive feedback, guys. One question that I would like an answer to is that, when the time comes to have the valve replaced, why ii it not always done by TAVR, which is minimally invasive and far quicker to recover from than open heart surgery?

Marie Myers  Some bicuspid valves are not amenable to TAVR due to calcium buildup or irregular shape of the valve. But the good news is once you have open surgery to replace the bicuspid valve, then TAVR can be used the next time.