I've crossed the line into severe and need to make a decision

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rich01

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Symptoms. I have noticed a very slight tightness in my chest that comes and goes. I have also been under a lot of stress and I would normally chalk this up to being stress related. I would not call it painful at all- just feels like something is going on there. If I am being conservative, I am going to call this an early symptom. It would be so easy to ignore, as it is so minor and goes away quickly, but I think that it would be very risky to dismiss this in the event that it is valve related.
I had that too and was told it was muscular and not angina. I think it actually was angina because it started happening more frequently as I went from moderate to severe stenosis.

One other thing is I had serious bladder problems after the heart cath and then with stents. I couldn't urinate for several hours after the heart cath and even though the nurses were aware of the problem, nothing was done to help me. After the stents were put in, I had the same problem and they inserted a catheter which caused a lot of bleeding from the heparin. When I had TAVR, I explained the previous problems and they said they could use a condom catheter so I wouldn't have a bleeding problem. I took 2 Flomax before the procedure and they were supposed to have 1 pill for me after the procedure, but it took over 6 hours to finally get it. If I have to go in again, I will take a couple of Flomax with me just in case.

So if you are already on Flomax, I would discuss that with the doctor before the heart cath.
 

Keithl

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Thanks for sharing your story. The fact that your biological valve lasted 10 years brings up another issue regarding valve choice. (If my math is right you had your first AVR at about age 57, is that right?) This is the reason that I am leaning towards a mechanical valve. I've been told, and the literature seems to support, that at my age of 53, I can expect a biological valve to last about 10 years. The Edwards Resilia valve gives some hope that it may last longer, but with 5 years of human data, this is certainly not proven. So, if I go with the current expectations of valve life for biological valves for folks in my age bracket- I would be looking at valve procedure #2 at about age 63 if my replacement valve is a biological valve. Then, at age 63, I either face another OHS or TAVR. My cardiologist said that the hope at that point would be to avoid OHS and go TAVR and the hope would be that the TAVR would last 15 years, taking me to 78. Then we would probably do valve operation # 3 as a TAVR in TAVR at 78. There is a lot that I don't like about that scenario personally. 1) Ten years is a short period of time to have to face valve surgery again and there are plenty of folks in my age range for whom their biological valves are only lasting 7-8 years. 2) I have some real reservations about TAVR for young individuals, and I think anyone under 70 is young in the valve replacement world. A high risk 85 year old, I think TAVR makes all the sense in the world, with the risks posed by OHS. But, someone in their 50s and 60s, I really have to question TAVR, especially given that we really don't have long term data on TAVR, and certainly limited data for TAVR in young active people. Also, the outcome studies comparing SAVR to TAVR, while arguably having better short term outcomes for TAVR at year 1, seem to even up after about 3 years and break in favor of SAVR by year 5 in the most recent publications. 3) There is very limited data on valve in valve in valve: that is to say, TAVR as a valve in valve following the biological valve, followed by TAVR in TAVR. That is getting to the point where there is a lot of junk in there an the AVA is not likely to be very big at that point. My cardiologist says that by the time that I am that age I will likely not need to have nearly as much cardiac output through the valve to support my activities. Well, my dad is 78 and plays tennis hard 4 days per week. My mom at 78 walks 5 miles per day and sometimes goes swimming. I plan to be active at 78, like my parents, and I don't like the idea of having a very small valve opening with 3 artificial valves sharing space in the annulus. And, keep in mind this scenario of estimating the age for each procedure is assuming the first TAVR gets me 15 years. This would be a far from certain assumption. I think that a more realistic estimate might be 10 years and one could make the case for even less. Using 10 years as the estimate for how long the first TAVR biological valve will last me, the same as the estimate for the life expectancy for my first biological valve, and now I am looking at surgery #3, the TAVR in TAVR, at age 73. That would seem to be not the best place to be at age 73. We are really on uncharted territory when we talk about valve in valve in valve.
So, it really makes me look hard at the option of going with a mechanical valve, and hoping that this will be the last procedure that I will ever need.

Sorry for taking a bit of a trip down a rabbit hole with valve choice, but this is clearly something that I must also deal with at this time as I weigh my options with my cardiologist and surgeon. When I hear stories like yours, about how long folks are getting out of their biological valves, especially those in my age range, it is of great help to me as we weigh valve choice. So, thanks again for sharing your story.

I wish you the best of luck both of your surgeries. It is good that they found the cyst on your pancreas and can deal with that now. Please keep us posted on your recovery.
‘I agree, I don’t want to harp or impose opinion on anyone as your choice is what is right for you, but I will say this that I my option I wanted the highest odds of once and done. There are enough folks here that have had tissues vale’s in and after a handful of years the valve needs replacing. Then there are other that have tissue valves that last 15+ years. Sure TAVR has come a long way as well as fissure valves, but mechanical valves have a fairly predictable and consistent track record.
 

Unicusp

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Jan 30, 2021
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169
Update: I'm getting my valve replaced in the next month. No set date yet.

I made my decision after consulting with my cardiologist and getting a second opinion from a second one and consulting with my surgeon. I have also had much valued and appreciated input from many of the members here on the forum.

Here are the reasons why I decided to get the surgery now, instead of waiting for symptoms:

-Significantly favorable statistics for getting surgery before symptoms, once a patient has crossed the severe threshold. Long term risk of mortality is HR = .38 for surgery before symptoms.
-Structural changes have already happened in my heart to adapt to the high pressures. My changes are only minor at this point, for example LV wall thickness of 1.1cm. This is not in the danger zone yet and will almost certainly return to the normal range of <1.0cm.
-There are very high pressures in my heart right now, with a mean pressure gradient of 45mmHg and a peak pressure gradient of 75mmHg. This is certainly in the severe category, but I am still below the threshold of 50mmHg (mean), which there is data to suggest there are better outcomes getting surgery before you are >50mmHg at the mean. In the past 6 months it went from 40mmHg to 45mmHg, so it appears to be increasing quickly.
- My peak jet velocity is 4.36 m/s. Anything over 4.0m/s is severe. There is data to suggest that outcomes are significantly better if surgery occurs before it reaches 5.0m/s. 18 months ago my velocity was 3.1m/s, so this represents a considerable increase in velocity.
-My AVA went from 1.1cm2 to .87cm2 in the past 6 months. Like my other metrics, this is severe and represents a quick progression. I am concerned that progression at this rate could put me into the critical stage within 6 months.

-My ejection fraction is still good at 63%. Studies have shown better outcomes if one gets surgery before it falls below 50%, as that would indicate that the left ventricle is moving towards heart failure from being overworked. I like the idea of not needing to worry about EF recovery, when EF is still preserved.

The hard part is that I still am not experiencing any slowing down with very much above average cardio ability- I climb a 1200 ft mountain 5x per week. Maybe I am getting this a little too early? But, I have always said that I would rather get surgery 6 months too early than 6 months too late.

Symptoms. I have noticed a very slight tightness in my chest that comes and goes. I have also been under a lot of stress and I would normally chalk this up to being stress related. I would not call it painful at all- just feels like something is going on there. If I am being conservative, I am going to call this an early symptom. It would be so easy to ignore, as it is so minor and goes away quickly, but I think that it would be very risky to dismiss this in the event that it is valve related.

-If I put things off, if my valve progresses at all like it has been, I can't imagine being able to put it off more than 6 to 12 months. If I do so, at the risk of potentially having irreversible structural damage, what have I really gained by kicking the can down the road that little bit. Things have not been easy once I had the knowledge that I crossed the line into severe- it is a little harder to get a good night sleep. I think this will be the norm if I delay, constantly asking myself "Is this a symptom? Am I slowing down?"

-I have decided to go mechanical with a St. Jude valve. I want to minimize the chances of needing a reoperation- a near certainty if I go biological. The Edwards Resilia is very tempting, as it would allow me to continue with my combat sports and resume training for the Jiu Jitsu world title (in my age category) and resume my kickboxing. But, having learned such great feedback from those here on the forum about the active lives that you are able to lead on warfarin, I know that there will be plenty of activities that I enjoy that I will still be able to do. I plan to self monitor my INS and believe there is good data to suggest that the risks of warfarin are drastically reduced for those who carefully self monitor. It is a choice to give up some things that I love now, in order to have the best chance of avoiding valve related surgeries in my future.

- Oh yeah and I have a coupon from Abbott for 15% off their latest mechanical St Jude valve that expires in 4 weeks and I really want to make sure that I use it before it expires. 😁

Thanks again for all of the great feedback! This forum is great!
How do you use a coupon with insurance? It just lowers what they pay, or does Abbott make a direct payment to you?
When you hike that 1200' mtn how high does your heart rate go? I theorize that may be the main contributor to the acceleration of issues and increased ventricle size. May want to cut back a bit to reduce potential damage.
Good to hear that you reached a valve decision. Tough decision! Don't look back!
 

Chuck C

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How do you use a coupon with insurance? It just lowers what they pay, or does Abbott make a direct payment to you?
When you hike that 1200' mtn how high does your heart rate go? I theorize that may be the main contributor to the acceleration of issues and increased ventricle size. May want to cut back a bit to reduce potential damage.
Good to hear that you reached a valve decision. Tough decision! Don't look back!
I was just kidding about the valve coupon. I think I'll go back and edit to take that out because some thing I am serious.
"When you hike that 1200' mtn how high does your heart rate go?"
It all depends how hard I push. I can go up at a pretty good pace and keep it under 100 bpm. When I use to try to get my best times, I would average about 140 bpm and in the final climb bring it to max at about 170. I have not tried to push like that in about 3 months.
"I theorize that may be the main contributor to the acceleration of issues and increased ventricle size."
Actually, I'm pretty sure it is not the case. I have actually brought my LVH under control and reduced my LV since my first echo 6/2019. LV wall thickness was 13mm then. I had borderline high BP, at 135/85 and had for about 20 years. I also pushed crazy hard in other cardio activities. I decided to lose 25 pounds to get my BMI to about 24 and also to lower my BP. I also backed off the physical activities, not going nearly as hard, or at least not as often. Over the next 20 months my LV thickness gradually came down- about 1mm every 6 months. So, it is now just 11mm. I am now just borderline LVH and my LV mass is in the normal range. I have only been doing the mountain about 5 months, so I really don't think this has much to do with the thickness. My cardiologist believes that the reduction in LV size was due to me bringing BP under control for the most part and I agree- although pushing crazy hard in cardio almost certainly was a factor as well. I can tell you, with the bad news that one gets from each echo generally, it was really nice to see my LVH improving with each one. I'll take whatever good news that I can get.
"May want to cut back a bit to reduce potential damage."
I agree. I am still walking the mountain to keep my fitness, but have decided to only go halfway up and to really go up at a gentle pace. I'll take some days off too.
 

Unicusp

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I was just kidding about the valve coupon. I think I'll go back and edit to take that out because some thing I am serious.
"When you hike that 1200' mtn how high does your heart rate go?"
It all depends how hard I push. I can go up at a pretty good pace and keep it under 100 bpm. When I use to try to get my best times, I would average about 140 bpm and in the final climb bring it to max at about 170. I have not tried to push like that in about 3 months.
"I theorize that may be the main contributor to the acceleration of issues and increased ventricle size."
Actually, I'm pretty sure it is not the case. I have actually brought my LVH under control and reduced my LV since my first echo 6/2019. LV wall thickness was 13mm then. I had borderline high BP, at 135/85 and had for about 20 years. I also pushed crazy hard in other cardio activities. I decided to lose 25 pounds to get my BMI to about 24 and also to lower my BP. I also backed off the physical activities, not going nearly as hard, or at least not as often. Over the next 20 months my LV thickness gradually came down- about 1mm every 6 months. So, it is now just 11mm. I am now just borderline LVH and my LV mass is in the normal range. I have only been doing the mountain about 5 months, so I really don't think this has much to do with the thickness. My cardiologist believes that the reduction in LV size was due to me bringing BP under control for the most part and I agree- although pushing crazy hard in cardio almost certainly was a factor as well. I can tell you, with the bad news that one gets from each echo generally, it was really nice to see my LVH improving with each one. I'll take whatever good news that I can get.
"May want to cut back a bit to reduce potential damage."
I agree. I am still walking the mountain to keep my fitness, but have decided to only go halfway up and to really go up at a gentle pace. I'll take some days off too.
Agreed those heart rates are much lower then I expected. You're safe. Great condition entering surgery. Assists a fast recovery.
 

Chuck C

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"When you hike that 1200' mtn how high does your heart rate go?"

Come on... I was waiting for, “About 1,200’”. Disappointed.
Funny anecdote about heart rate. I think I may have mentioned in another post that they told me that I broke their stress test record in my cardiologists office, being only the second person to make it to level 7- the other being a 32 year old triathlete.
So, I'm about 14 minute into the echo and the tech says she thinks something is wrong because my HR has not broken 100 yet- I told her don't worry, it will get up there as long as this thing goes faster- she assured me it would. Well, level 6 really gets kicking and finally my HR started to rise quickly and I did reach 170 in level 7.
Also, during recovery, my HR drops back to baseline super fast, which is generally a good thing. Apparently, my stress test came back as "abnormal" so I had to do a second stress test a couple weeks later, this one a stress/echo. For this they like you to go to max HR and then complete the echo- but they want your HR at at least 150 for the start of the echo. The stress test tech told the echo tech that she did not know how they were going to manage to get the echo started on time because my HR drops so fast. So, they had her all set up with the echo and had me literally jump from the treadmill to the echo table once I hit HR max. They did manage to get the echo started before I dropped below 150.
When I had the follow up consult with my cardiologist, I asked him what was "abnormal" about the stress test that triggered the stress echo. He said he thinks it was because I went abnormally long on the test that the computer found it irregular....???? Which seems like a strange reason to order a follow up stress test with echo. Kind of a waste of time and money as I was still way under my deductible.
 

bizinsider

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Symptoms. I have noticed a very slight tightness in my chest that comes and goes. I have also been under a lot of stress and I would normally chalk this up to being stress related. I would not call it painful at all- just feels like something is going on there. If I am being conservative, I am going to call this an early symptom. It would be so easy to ignore, as it is so minor and goes away quickly, but I think that it would be very risky to dismiss this in the event that it is valve related.
Bingo. That's interesting to read. I always felt myself to be asymptomatic. But in the year or so before surgery I started noticing "things." For example, I was getting ocular migraines several times a year for most of the 40+ years since I was first diagnosed with a "murmur." But in the past year their frequency was increasing to once a week. And if I walked up some really steep hills my chest would tighten, I'd have to slow (very unlike me) and it would take me an unusual amount of time to recover. I just felt something was wrong.

So when my local cardiologist said we should wait another 3 months and revisit things (this was a year ago last January) I said, "I need to get on with my life" and set up a visit with Cleveland the next month. Good thing, the battery of tests they did suggested I should do the surgery sooner rather than later. It wasn't until surgery that they found the rapidly deteriorating unicuspid (previously thought to be bicuspid) valve AND...the angiogram showed an 80% blockage of a marginal artery. Once recovered, the chest tightness was gone. My cardiologist thinks it was probably the result of the valve (at my age they usually don't find unicuspids - they usually fail by half my age) but it could have also been that one artery - an artery that if fully blocked probably would have caused angina and/or a heart attack...probably not one that would have killed me, but certainly damaged my heart. And I think I've had 3 oculars in the year since surgery.

All which is a long-winded way of saying: You're listening to your body. Only YOU can do that. Smart, smart, smart move.

Cheers.
 
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Luckyguy17

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I’m a thirty plus year warfarin addict just living my life.
This made me smile, as I may well end up being on a warfarin regime For life and if so, so be it. The surgeon will make the final call, as described below.

I have a recollection of being on a warfarin regime and INR testing after my Bio AVR in May 2010, but cant remember if it was for 30 or 90 days? As i live in the country and some distance from the hospital, I remember thinking, that some form of home testing would be needed to make this work long term,

After meeting with the surgeon this week to discuss my 2nd AVR, (am now age 67), a bio prosthetic remains my preferred valve, truly has been problem free for 10 + years. The Surgeon has some concern about my smallish 21mm aortic valve and would not consider replacing the 21 mm with another bio 21mm, Resilia or other. Unless he can fit a valve which is 23mm or larger, he does not suggest a bio replacement in my case.
If the aortic has 21mm as the size limit, he suggests a St-Jude mechanical . If it turns out to be a mechanical aortic, he also suggests that he may replace my mitral annuloplasty ring with a mechanical mitral Valve.

All to say that we as patients (in Canada), may have some preferences, but when it comes to OHS the surgical team will make final decisions, while working on the engine.
 

Chuck C

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This made me smile, as I may well end up being on a warfarin regime For life and if so, so be it. The surgeon will make the final call, as described below.

I have a recollection of being on a warfarin regime and INR testing after my Bio AVR in May 2010, but cant remember if it was for 30 or 90 days? As i live in the country and some distance from the hospital, I remember thinking, that some form of home testing would be needed to make this work long term,

After meeting with the surgeon this week to discuss my 2nd AVR, (am now age 67), a bio prosthetic remains my preferred valve, truly has been problem free for 10 + years. The Surgeon has some concern about my smallish 21mm aortic valve and would not consider replacing the 21 mm with another bio 21mm, Resilia or other. Unless he can fit a valve which is 23mm or larger, he does not suggest a bio replacement in my case.
If the aortic has 21mm as the size limit, he suggests a St-Jude mechanical . If it turns out to be a mechanical aortic, he also suggests that he may replace my mitral annuloplasty ring with a mechanical mitral Valve.

All to say that we as patients (in Canada), may have some preferences, but when it comes to OHS the surgical team will make final decisions, while working on the engine.
Thanks for sharing. Interesting that the surgical team will make the final call. Is this because you are going with their judgement and totally trust them, or is this legally how it is structured in Canada? In the US, the cardiologists and surgeons that I have consulted with have make it very clear that it is 100% my choice. They will be happy to discuss the pros and cons of each option, but make it very clear that it is my decision at the end of the day.
 

Chuck C

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Let's hope they don't drop a wrench in there and forget it ;-)
This kind of thing really does happen from time to time. I know a person who had abdominal surgery- 3 years later had unexplained pain. X-ray revealed that the previous surgeon had accidently left something inside her body. Oops! Had to get a re-op to fish it out. It was a plastic surgeon and it was some sort of cosmetic stomach surgery. Eager to make things right, the surgeon asked if she wanted a a free procedure to make amends, such as breast augmentation.
 

Chuck C

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Let's hope they don't drop a wrench in there and forget it ;-)
Do you feel good about your decision to go biological? You have said previously that you felt much better after getting surgery, being able to walk faster up hills and such, if I remember correctly.
 

bizinsider

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Do you feel good about your decision to go biological? You have said previously that you felt much better after getting surgery, being able to walk faster up hills and such, if I remember correctly.
At my age, now 68, yes. Surgeon agreed, tho he was careful not to tell me what to do. Plus he sized it for TAVR later. The one thing he didn't do was give me the Resilia, even though I believe he was the lead investigator. I think it had to do with a combo of my age and the fact that it was a bio-Bentall procedure (including the root.) Whatever the reason, I went with his advice on the actual valve he would use. He was pretty adamant about that.
 

Chuck C

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At my age, now 68, yes. Surgeon agreed, tho he was careful not to tell me what to do. Plus he sized it for TAVR later. The one thing he didn't do was give me the Resilia, even though I believe he was the lead investigator. I think it had to do with a combo of my age and the fact that it was a bio-Bentall procedure (including the root.) Whatever the reason, I went with his advice on the actual valve he would use. He was pretty adamant about that.
It is good that he made it clear that it was your choice, but I think that once you had decided on biological that it was wise to let him choose- after all, we are talking about Lars Svensson.

I am still going back and forth on whether to go mechanical or biological. My surgeon at UCLA has gone over both options with me and there is a strong case to be made for either one. For me, at my age of 53, if I go biological, he recommends the Resilia, which I already had in mind. The hope would be to get 20 years out of it- but that is just a hope, based on the anti-calcification treatment. They really don't know beyond 5 years. He does believe it should be at least as durable as its predecessor.
If I go this way and I get 15-20 years out of it, I will feel very fortunate and decide what to do at that point.
If I only get in the range of 10 years, which is common for biological valves for my age group, then the plan for # 2 would be to go mechanical and hope that this is the end of it. He indicated that the risks for a 2nd procedure at age 60-70 would be very low, although a little higher than the first. I believe that a third procedure is where significant increases in risk really kick in, which I have heard Lars speak about. That being said, plenty of folks here have come out of their third procedures just fine, or just fine after some bumps in the road.
He said that I can literally wait until the morning of the surgery to tell him which valve I decided on, as they keep all sizes in stock of the St. Jude and the Edwards biological valves.
 

Chuck C

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Surgery set for March 22. Still going back and forth in my mind on valve choice; mechanical or biological. I have about a month to decide.
 
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tezza

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Surgery set for March 22. Still going back and forth in my mind on valve choice; mechanical or biological. I have about a month to decide.
It is such a tough decision isn't it? Well, I know I'm surely having a hard time making it. So glad that you have a date...I'm still waiting for my date, mainly because I can't make up my mind on valve I think. Hopefully will get a date this week...I just want to get it done so I can move on and get back to a more normal life...unlike you, I am quite symptomatic and getting very tired. The time will go very quickly between now and surgery date. Use the time to gather your strength and prepare mentally. This will be surgery #2 for me.
 

Unicusp

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After just going thru this process ( a second time) and on the post operative side healing, I am seeing things much clearer. Simply put, there is no way I could intentionally plan to put myself thru this process again in approx 10 years. And remember you lose around a year with increasing symptoms and anxiety prior to surgery (6 months) and 6 months recovery to full strength. I'd currently be in a deep depression if I had chosen a tissue valve. Again, to me, mechanical is the most logical choice. Allowing surgeon with much experience to determine if SJM or On-X is best for your specific anatomy.
And consider do you have any idea what your insurance coverage will be in 10 years, and costs rise every year.
All just my opinion. Good luck!
 
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