Set for surgery on April 14th

[Guest]

Hi all, this is a great forum and I'm glad I found it. I'm a 53 year old male diagnosed with a bicuspid valve and severe aortic stenosis. I was diagnosed in September 2015, after an abnormal EKG test that was done as a pre-op screen before surgery for removing a kidney stone. I had the stone removed without complication, and they put me on a 6 month follow up with my cardiologist. I haven't been symptomatic, and my cardiologist said we should wait until I become symptomatic before having AVR. He said it could be 3 months, 6 months, 2 years, but that I would eventually require surgery. In November 2016, I had a TIA - some slight slurring of speech for about an hour and a half, but it went away. The doctors thought it was metabolic, and not caused by the valve - the cardiologist agreed. Since then, I have gotten my habits back on track, lost 28lbs, changed my diet, and lift weights 3-4 times per week. I've actually felt better than I have in a long time. However, It didn't make sense to me that I would wait until I was symptomatic to meet the surgeon, so I requested a consult with a surgeon that operated on my sister last year for a double bypass and AVR. She is doing great, and I really liked her surgeon. I met with him thinking we would meet and he could follow me until it became time for surgery. After learning I had a TIA, he felt we should do surgery in the next few months. His reasoning was that calcification on the valve can break off and become debris, that can lead to stroke. i.e. He wasn't convinced that my TIA was metabolic...So, I'm scheduled for surgery on April 14th. I remain symptom free, but feel that the risk of doing the surgery now is less than waiting - I don't want another TIA. At 53, I seem to fall in the gray area age-wise when considering tissue or mechanical. I am active, lift weights, ride a motorcycle. I'm leaning towards tissue because of my active lifestyle, but know that I will be facing another surgery in my mid-late 60's.My surgeon seems to believe that in 10-15 years TAVR will be the norm for replacement, so the risk in 10-15 years will be less than being on Coumadin for the rest of my life. Any thoughts or advice anyone can give? Thanks,

 

[Paleowoman]

Hi - welcome to the forum. I had my bicuspid aortic valve replaced when I reached severe stenosis but when I still had no symptoms. I was very fit prior to surgery, even lifted weights the day before. I live in the UK - they tend to do surgery in Europe before symptoms develop as symptoms can mean the heart is having problems which could be irreversible or could cause problems during surgery. Whether or not that protocol is better than waiting for symptoms I can't say. But I was 60 when I had surgery and I went with a tissue valve. There's no guarantee that you will be able to have TAVR next time, I certainly won't as my replacement valve is too small, but I went into surgery not with the thought of TAVR next time but knowing I'll need a re-do when I'm in my mid 70's or so.I chose tissue becasue I personally wouldn't like the noise of the mechnical valve and I wouldn't like to have to take warfarin - mind you having tissue valve is no guarantee that a person won't need warfarin, but I would rather not have it by choice.

 

[dick0236]

Glad to have you on the forum. Stick around. As you say, you are in a gray area regarding valve choice and your input can help others as they weigh their options.

 

[Duffey]

Hi and welcome. I also suffered two TIA episodes while waiting for AVR, and after the second one, the surgeon pushed for immediate surgery. I was 52 and picked a bovine valve. It's been almost twelve years and the last echo showed that it's still in good shape. I realize that I may need it replaced at some future date, and when I do, I will pick a tissue valve again. Others may have different views concerning valve choice, but you will have to sort through the pros and cons, then chose for yourself. In the meantime, enjoy the time before your surgery because things tend to get hectic as you get closer to the surgery date. Best wishes, Mary

 

[Ljay]

I have just been diagnosed with a bicuspid valve I only have mild stenosis but I have moderate regurgitation. Bouts of severe chest pain tiredness . I have breathing problems lying down . I take bisoprolol and ramipril. Unfortunately I can't get straight answers to what I would really like to know. It seems like a big waiting game. Do I have to wait till I'm at deaths door before they do anything. I know very little about what to expect. My aortic valve is asymmetrical thickened and minimally calcified. Grade 1 diastolic impairment. Are there specific guidelines cardiologists have to decide who should or shouldn't get a replacement valve and all of you patients about to have replacement valves how frustrating having to wait. I'm bemused I'm in my early fifties I've been having symptoms chest pain dizziness tired since Oct. I was finally diagnosed when I had a severe respiratory tract infection showing basal atelectasis. I'm really fed up with all the jargon why can't doctors speak to you in a simplified way so I can understand what to expect.

 

[Ljay]

I'm so happy for those of you that have been offered new valves. All the best.

 

[pellicle]

Hi and welcome

I recommend ​​​​​​reading an old reply to a post (by me) mine here

http://www.valvereplacement.org/foru...selection-help

And Ski girls (and my) reply here
http://www.valvereplacement.org/for...ical-vs-homograft-vs-ross?p=794357#post794357
Lots of mis-information exists on warfarin and it's risks. To summarize ill say that the stats which most medical people cite are decades out of date and are drawn from miserably poor management of the INR. Modern self management will give you about the same risk as the age related general population

 

[FredW]

I have just been diagnosed with a bicuspid valve I only have mild stenosis but I have moderate regurgitation. Bouts of severe chest pain tiredness . I have breathing problems lying down . I take bisoprolol and ramipril. Unfortunately I can't get straight answers to what I would really like to know. It seems like a big waiting game. Do I have to wait till I'm at deaths door before they do anything. I know very little about what to expect. My aortic valve is asymmetrical thickened and minimally calcified. Grade 1 diastolic impairment. Are there specific guidelines cardiologists have to decide who should or shouldn't get a replacement valve and all of you patients about to have replacement valves how frustrating having to wait. I'm bemused I'm in my early fifties I've been having symptoms chest pain dizziness tired since Oct. I was finally diagnosed when I had a severe respiratory tract infection showing basal atelectasis. I'm really fed up with all the jargon why can't doctors speak to you in a simplified way so I can understand what to expect.

I relate to your frustrations with the criteria for when to have surgery. From my experience, it is not clear and varies with the doctor, what country you live in, your age and health, and maybe the insurance system you have. My cardiologist and I had a difference of opinion for the need for surgery. I was ready, he wanted to wait. After a stres test made my EKG go crazy, he changed his mind and I ended up having surgery the next day. My advice is to collect as much information and data as you can. Also get another opinion. It is your life and you should not be fed up or frustrated with what you being told.

 

[FredW]

Guest, at age 53, the decision of the type of valve is not easy. Do your research - this forum is a great resource. At age 73, I am happy with a tissue valve. At age 53', I may have gone with mechanical in hopes of avoiding an second surgery in my 70's. But since I had surgery in my 70's (with no issues), that would have been questionable logic. TAVR will get bettter, but you may need more than one if you live long enough. Mechanical valves can last as long as you do and the folks here say managing blood thinners is not difficult.

 

[Paleowoman]

I want to add, in case some folks don't understand my reasons when I write in threads like this that I don't want to take warfarin, it's not because I could not manage it and it's not because of any "risks" which some people may quote, it's simply because I don't want to take a daily medication. I already do take other medications daily so I have that ongoing expereince. I'm qute aware that at some point in time I may have to take warfarin, many people do for reasons other than valve replacement - if that day comes I'll cope with it fine, I just won't choose to bring that day forward !

 

[ForeverThankful]

Guest -

When I had my surgery I was 55 and I faced the same issue as you of being in the gray area age wise for picking a valve type. I decided on a mechanical valve because the bottom line was that I didn't want to put myself through another surgery around 70.

I don't find taking Warfarin to be a problem. Home testing makes it very easy to check your blood every week.

This is a very personal choice and I'm sure you'll make the choice that's right for you. The important thing is to be as informed as possible!

 

[pellicle]

I want to add, in case some folks don't understand my reasons when I write in threads like this....

It's always helpful to present all experiences, for then the reader can make up their mind on why is important to them.

We are all different in our life views too.

 

[PeterII]

I was diagnosed BAV at 58 and the advise was to wait for symptoms pointing at surgery time, 5 years later at 63 I dropped unconscious on the streets 5 times on a day.
Then valve selection time came, I learned a lot talking to people here that are always very supportive sharing their knowledge and experience, and based on that and my surgeon criteria I choose an On-X valve.

The main reasons were:
- According to my surgeon from 60 to 65 is a grey area of what is best in terms of durability; if you are 65 or more then no questions for him Tissue should last long enough.
- For me , the TAVR technology has too many IFs, it is not only that the technology is available or not, is more IF in a particular case is possible to use
- Choosing a tissue valve at less than 60 or in the range of 60 to 65 will required at least other surgery, and as many have said it here, is not only you who goes through the suffering, is all your friends and relatives, so for me, "Minimizing" the probability of a second surgery also influenced my decision
- I was VERY concerned about Warfarin the Buggy Man, but reading PELLICLE articles cleared my mind, it was very hard to be at 65% oxygen in my brain and think properly.
- The OnX valve, "in my case" i never hear it, UNLESS, i sleep in certain positions that i avoid, for the rest of the time, i Never hear it, period.
- The warfarin, yes, is a pill you have to take every day and your INR must be watched since many little things can affect it, BUT, i go to blood lab one week and next do a test with Coagucheck at Home, and although it goes up and down within certain range is not a problem.
- OnX claims the INR works fine from 1.5 to 2.0, but i keep it around 2.2, which represents no risk.

I also learnt with PELLICLE that Warfarin is not only a medication you get for AVR, you may get it just because other conditions wether your valve is tissue or not.

Today, 15 months after, sometimes i think about my valve decision, and "for me" it was the right one for i could not bare the every day question regarding "when is next surgery". Although, the possibility of a second operation is Always a possibility, is less probable with a mechanical valve.

And as every body says, there is no wrong decision here, inform yourself , read, investigate and see what ticks with you.

I always thank those who shared their experiences with me when i was looking for comments,and that is what i think we must all do,
share our perspective,

There is no right or wrong way on this.

 

[Ljay]

His paleowomen. Can I ask how long did it take for your stenosis to become severe are we talking many years or months. I realise you was not yet at the point of symptoms. This is where it all gets confusing. I have symptoms but my stenosis is mild although my bav has set me at stage 2 moderate regurgitation. I have difficulty sleeping because it's like someone's turning my oxygen off intermittently. I have good days and I have extremely painfully days muscle aches tiredness. I'm guessing this is when my hearts working too hard.I'm from the UK. Our national health service is stretched so getting to speak to cardiologists is a nightmare having to wait weeks months . I have to wait approx 6 weeks for my appointment. I'm feeling a little lost. Looking for wisdom and advice.thank you in advance.

 

[Ljay]

His paleowomen. I didn't realise you also are from the UK. Maybe you've just given me a little hope... I may not have to wait years for a replacement.

 

[Paleowoman]

Hi Ljay - I can’t tell how long it took for my stenosis to get from mild to severe as my BAV was first discovered back when I was 25 - it would have been mild then. But nothing was done for years, not even followed up except when I became pregnant at 35, then nothing again until I was 53. It had then reached moderate stenosis, but didn’t reach severe until I was 60. I didn’t have any regurgitation.

Have you seen your GP ? Not that it’s any easier to get to see a GP ! It takes nearly six weeks to get to see my GP. But if you can see your GP maybe he/she can expidite your cardiologist appointment ?

When you see your cardiologist do have all your symptoms down in writing, perhaps hand it to the doc so you get some answers.

PS - yes I'm from the UK.

 

[Ljay]

His paleowomen. I didn't realise you also are from the UK. Maybe you've just given me a little hope... I may not have to wait years for a replacement.

 

[Tojomiami]

As everyone states, there is no wrong answer. Both choices have their pros and cons. I had my first AVR at age 49, and had a homograft tissue valve. It worked great for nearly 18 years. I was very active, a mountain climber, ice climber, skier, and worked out with weights and cardio equipment at least 5 times per week. I finally had to have my second AVR just recently at age 63. Both the cardiologist and my surgeon at Mayo recommended a mechanical valve because I am so active. Apparently it is difficult to repeat a homograft, and they thought with my active lifestyle I might wear out a tissue valve in 5-10 years. I really did not want to have a third AVR. I have had 4 back surgeries and am tired of being a patient. I had the On-X valve, and so far I love it. I don't hear it at all. I am having some difficulty getting my INR under optimal control, but plan to home-test after 3 months. Right after surgery, I was questioning my choice, as I realized I would be on blood thinners the rest of my life. But now I am very happy I made that choice. I have been taking a baby aspirin every day since my first surgery in 1999, so I figured I can take one more pill. I still want to work out on a regular basis and ski, but I stopped mountain climbing and ice climbing after my back surgeries. Again, there is no right or wrong answer. Read and research as much as you can, then go with what feels right to you. Also, it helps to get a few opinions from doctors with experience in this, and consider their advice. Good luck!

 

[Ljay]

Hi paleowomen. I know im posting and it's the early hours but I don't sleep. To answer your question I've seen my gp. He just told me it's a waiting game. I have meds to slow down my heart meds to lower my BP painkillers angina spray for ease of chest. I've been off work since end of Oct. Been in hospital 4 times. All he could say to me was that he wasn't going to bull **** me it's going to get worse. Pardon the language. His words.

 

[Paleowoman]

Hi paleowomen. I know im posting and it's the early hours but I don't sleep. To answer your question I've seen my gp. He just told me it's a waiting game. I have meds to slow down my heart meds to lower my BP painkillers angina spray for ease of chest. I've been off work since end of Oct. Been in hospital 4 times. All he could say to me was that he wasn't going to bull **** me it's going to get worse. Pardon the language. His words.

Hi Ljay - does your GP say the symptoms you are getting are due to your BAV or are they due to something else, eg atherosclerosis or some other heart problem ? What does your GP say you are having to “wait” for ?

An option here which you might want to consider for a one off which a coupe of friends of mine have done for other conditions when they couldn’t get to see a consultant soon enough: you can see your consultant privately. It costs around £200 for a consultation. What costs the big money are tests, but if you have an up to date echocardiogram and blood tests etc then you can get copies of these from your GP so they don’t have to be done again. You can find out if your consultant sees patients privately by looking them up at a local private hospital or the private patient wing of the hospital you’re under (if they have one), or look the consultant up on Bupa’s consultant finder where you will see which private hospitals he or she works from plus their private secretary from whom you can find out the cost of a consultation: https://finder.bupa.co.uk/Consultant/search You would probably get a more comprehensive consultation from the cardiologist privately - often you only get to see one of their minions on the NHS.

One of my friends needed to see an endocrinologist but her GP wouldn’t refer her on the NHS so she saw the endocrinologist privately. The endo then wrote to her GP asking him to refer her to him on the NHS ! She said it was definitely worth the money. It seems wrong but in this day and age…..

I have Bupa cover from my husband’s work - if I didn’t life would be a lot more stressful.

Our neighbour waited about 18 months to get some stents done, he was very out of breathe for all that time and had to use a walking stick to get around. It wasn't considered urgent enough to get done sooner. But BAV is different.