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

[Chuck C]

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!

When I lean towards the mechanical valve in my analysis, I try to think of being at that point in 7 years or 10 years when they tell me on an echo that my biological valve has started to deteriorate and they need to start doing more frequent echos. If I go biological, I can really see regretting that I did not go mechanical once I get to that point. In the short term, the biological valve has a lot of appeal- don't need to give up any of your activities, don't need to manage warfarin, nor worry too much if you bump your head and get a bump. The video presentation that Edwards has on YouTube with the three surgeons discussing their research on the Resilia is very interesting and certainly gives the impression that this valve is likely to last a long time. One of the surgeons presented their findings on one of their studies on the Edwards Perimount valve- over 50% of these biological valves did not need reoperation- at 20 years. That is remarkable and it gives hope that the next generation, the Resilia, will last even longer. But, when you actually read the study that he is discussing, I find the actual data much less compelling for biological. What they don't tell you in the presentation, which is really more of an infomercial for the Resilia, is that after 20 years about 80% of the patients had died. Looked at another way, patients had something like 12% probably of being alive at 20 years and without a reoperation. The vast majority died before they needed a second operation. Again, remember this is not the Resilia but its predecessor. And keep in mind, the average age was 71 years old- with many under 60 but some as old as in their 90s. So, of course anyone 80+ will not be alive in 20 years. Take an 80 year old SAVR patient who dies at age 88. I find it a little misleading at 20 years to count his valve as one of the ones that was free of reoperation- of course it was- he died 8 years into the study.
So, while it is clearly true that at 70 years old, a biological valve is probably going to outlive the patient, younger patients are still most likely facing reoperation due to SVD, should they be fortunate to live a normal life span.
To follow up on my comment that the video presentation is like an infomercial, I don't totally fault them for this. They are putting millions into valve development and this clearly is to the benefit of all of us here. They have to let folks know about their products. It just feels a little funny to me see the surgeons, who, as I understand it, make very large sums of money to run these trials, present the data as if they are spokespeople for the valve companies and present the data that seems to sometimes be misleading. This is where we have to either really look deep into the studies ourselves or rely heavily on our medical team to tell us what is best for us, and preferable do both.


https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5132179/

 

[Chuck C]

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.

Yes, it is a tough decision. As I think I mentioned, in my first consult with the surgeon I was leaning towards biological and in my last consult I informed him that I was leaning mechanical and asked for his input on which mechanical valve he prefers and why. He said I can literally wait until the day of surgery to tell him which one. I am still leaning mechanical at this point and am in agreement with my surgeon that the St. Jude would be the mechanical valve of choice.

 

[newarrior]

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!

Damn looks like mechanical is the way to go ! Unless over a certain age

 

[Chuck C]

So, valve replacement is set for March 22. Currently my cath is set for March 19. I wanted to get the cath earlier, but my cardiologist is booked until the 19th. I have a question:
Is a cath something that requires a recovery period, or is it so minor that getting in 3 days prior to OHS is fine and normal?
I could get my cath done a week before OHS, but it would mean going with another cardiologist, and my surgeon prefers my cardiologist, as they work as a team and he trusts him the most.
The cath sounds pretty minor and perhaps getting in three days before OHS is not an issue. Just checking to see if others had their cath done this close to OHS and if anyone has any thoughts on if it matters getting the cath done so close to OHS. The physician's assistant scheduling me did not think it would be an issue.
Thanks

 

[newarrior]

Bro I am a newb so I can't answer your q's but man I really appreciate your posts, support, information, etc, etc. You are a godsend and the community needs you. Stay strong Chuck...you got this and we got you man ! We are holding you in our prayers man !

 

[Superman]

So, valve replacement is set for March 22. Currently my cath is set for March 19. I wanted to get the cath earlier, but my cardiologist is booked until the 19th. I have a question:
Is a cath something that requires a recovery period, or is it so minor that getting in 3 days prior to OHS is fine and normal?
I could get my cath done a week before OHS, but it would mean going with another cardiologist, and my surgeon prefers my cardiologist, as they work as a team and he trusts him the most.
The cath sounds pretty minor and perhaps getting in three days before OHS is not an issue. Just checking to see if others had their cath done this close to OHS and if anyone has any thoughts on if it matters getting the cath done so close to OHS. The physician's assistant scheduling me did not think it would be an issue.
Thanks

Cath is no big deal. A pin hole entry to access an artery that they follow to the heart. Groin area or I’ve been hearing wrist of late. Don’t even know if they stitch it anymore. If there is any lingering discomfort at the time of your surgery, you soon won’t notice it!

Good luck and continue to keep us posted!

 

[bizinsider]

Chuck, I second what Superman said. Mine was done 2 days before surgery. The biggest non-event of the whole ordeal. The worst part, if that, is the numbing shot in your wrist, which is where it is generally done these days. I was awake for the best part, which is when they were discussing the (surprise to me!) blockage they saw.

And FWIW - the catheter going in my arm felt like someone was just rubbing their finger along the side of it. The only "recovery" is a few hours in the recovery area, where you have to keep your arm up.

Trust me when I say: No biggie.

 

[epstns]

I was diagnosed at age 52 with moderate-to-severe AS. I remained asymptomatic until age 63. My only symptom even then? I was tired of being tired. I was still a 5 days/week gym rat, jogging, working 50-60 hours a week, living a normal life. My cardio told me that he never has to tell his AS patients when to have surgery. They always tell him.

When I got tired of being tired, I told him "It's time." Done deal.

 

[Chuck C]

Chuck, I second what Superman said. Mine was done 2 days before surgery. The biggest non-event of the whole ordeal. The worst part, if that, is the numbing shot in your wrist, which is where it is generally done these days. I was awake for the best part, which is when they were discussing the (surprise to me!) blockage they saw.

And FWIW - the catheter going in my arm felt like someone was just rubbing their finger along the side of it. The only "recovery" is a few hours in the recovery area, where you have to keep your arm up.

Trust me when I say: No biggie.

Thanks for sharing your experience! It sounds pretty minor. I have gone ahead and booked the cath with my cardiologist. My alternative was to get it earlier, but with another doc, but I very much prefer to have him do it and so does my surgeon.

 

[Unicusp]

So, valve replacement is set for March 22. Currently my cath is set for March 19. I wanted to get the cath earlier, but my cardiologist is booked until the 19th. I have a question:
Is a cath something that requires a recovery period, or is it so minor that getting in 3 days prior to OHS is fine and normal?
I could get my cath done a week before OHS, but it would mean going with another cardiologist, and my surgeon prefers my cardiologist, as they work as a team and he trusts him the most.
The cath sounds pretty minor and perhaps getting in three days before OHS is not an issue. Just checking to see if others had their cath done this close to OHS and if anyone has any thoughts on if it matters getting the cath done so close to OHS. The physician's assistant scheduling me did not think it would be an issue.
Thanks

My cath was done 2 days before surgery thru the right wrist. The procedure was simple/quick/pain free and results were a negative.
But I might add; during surgery the anesthesia team chose same right hand for one of the main entry points. The combination of these 2 invasive events caused quite a swollen right wrist and hand that lasted about 4 days. Day 1 in ICU this area hurt more than anywhere else. Felt like they broke it. Carpal tunnel inflamed. So, I suggest that if the Cath is in your right wrist, have the anesthesia team go thru your left during surgery.

 

[Chuck C]

My cath was done 2 days before surgery thru the right wrist. The procedure was simple/quick/pain free and results were a negative.
But I might add; during surgery the anesthesia team chose same right hand for one of the main entry points. The combination of these 2 invasive events caused quite a swollen right wrist and hand that lasted about 4 days. Day 1 in ICU this area hurt more than anywhere else. Felt like they broke it. Carpal tunnel inflamed. So, I suggest that if the Cath is in your right wrist, have the anesthesia team go thru your left during surgery.

Great advice! I am not too concerned about a few days of discomfort in my arm/hand, but all things being equal I might as well minimize this risk by having them use the other wrist. I was more concerned with the possibility that there might have been some agitation of heart during the procedure, with some mild inflammation, but it sounds like this is not the case - neither the anecdotal feedback nor the published literature seems to support this, so I feel just fine having my cardiologist perform this only 3 days before OHS.

 

[bizinsider]

But I might add; during surgery the anesthesia team chose same right hand for one of the main entry points. The combination of these 2 invasive events caused quite a swollen right wrist and hand that lasted about 4 days.

That brings back quite a memory: There is no way I would have been able to decipher why my wrist was swollen because my entire body was swollen b/c of the liquid buildup post-surgery. I was like the Michelin Man. My arms and wrists - all of me - were swollen. And I mean ALL of me (guys, that's all I'll say.) This is common, of course, and which is why they pump you with Lasix! The worst part about having inflated arms, for me, was when they had to re-insert a needle in the ICU and they had a hard time finding the vein. (Tip: I should have said, "Yes," when the nurse suggested she could get the other nurse, who was trained in using an ultrasound to find the vein. I didn't want to hurt her feelings.) The best news about any of this is well after you have gone through this entire experience the human brain numbs most things that in the moment weren't necessarily fun. I know some people have PTSD – and I'd hate to go through this again, as Unicusp did – but I find the alternative not acceptable.

 

[Chuck C]

I was diagnosed at age 52 with moderate-to-severe AS. I remained asymptomatic until age 63. My only symptom even then? I was tired of being tired. I was still a 5 days/week gym rat, jogging, working 50-60 hours a week, living a normal life. My cardio told me that he never has to tell his AS patients when to have surgery. They always tell him.

When I got tired of being tired, I told him "It's time." Done deal.

Thanks for sharing that. If I recall, when first diagnosed you said your valve area was 1.0cm2 and you were able to go 11 years before needing AVR. That is great! I wish mine was progressing this slowly. The last 5 echos I've had done paint a very clear picture of rapid progression, using 4 metrics for progression. When I graph out where they point to 6 months from now it has me moving from severe to critical or near critical. I expect I almost certainly would have significant symptoms by then. I think that I am experiencing an early symptom now. I feel a little tightness in my chest that comes and goes but I feel it every day. Maybe it is stress, but I think it is most likely valve related. It goes away when I exert, so this is not typical, but I definitely feel something going on in my chest from time to time. I am aware that surgeons are often a little eager to operate, but my surgeon did not demonstrate this in my first consult 6 weeks ago and I trust him. By contrast, I got a Cedar Sinai consult from a surgeon 18 months ago and he said I should get AVR immediately. I feel that he was one of those that maybe a little too eager to cut- kind of like the saying, to a hammer everything looks like a nail. But, my current surgeon was convincing in my first consult that he was not eager to operate, and despite the fact that I was severe based on MPG and Vmax at the time,(although AVA was only 1.1cm2 so I was moderate/severe graded) he did not recommend surgery. Once I crossed into severe he suggested surgery, based largely on how rapidly things had progressed in 6 months. As I dig into the literature and look at my own numbers, I agree with him. My cardiologist was more 50/50- making it very clear it was my choice to get it now or wait, but he was more inclined to wait for classic symptoms, when I pressed him on what he would recommend. But, I think I likely have the very early stages of classic symptoms, so any debate becomes moot at that point- when I described my symptoms to the surgeon he said this was truly a classic symptom, albeit the least severe symptom. So, for me, I really see no point in waiting a few months for my symptoms to worsen and risk irreversible valve damage.

 

[epstns]

Chuck, it sounds like your cardio is much like mine. He is listening to you, and advising that as long as you feel OK, it is probably OK to wait. . . for a while. The human body is quite a wonderful machine, and it can compensate for a lot of deterioration while still performing well. It is just up to you. If you want to wait, for whatever reason, you can. . . but be very well tuned in to your own body and as soon as you feel progression of cardinal symptoms, then act decisively. Waiting is not a problem. Waiting too long can be.

Your symptoms do sound like you are in that category where you can wait some months for surgery, so maybe use that time to refine your plans, choose your own schedule, then proceed. You never want these procedures to be done on an emergency basis. Too many decisions that you would rather make for yourself or with your docs, rather than having to just go along with whatever they can do when you arrive in the ambulance.

 

[epstns]

Another point, regarding the pre-op cath. Mine was done a couple of weeks prior to surgery, and was done at a different hospital. The cath was done by staff at my cardio's hospital, but surgery was at a nearby Center of Excellence hospital where the chosen surgeon was working. Location didn't matter to them.

I had the traditional (at that time) cath entry at the femoral artery in the groin. It was a big non-issue except for the fact that they didn't sedate me very heavily. I first realized this when they were ready to insert the trocar to place the cath. When they pushed it in, all the muscles in my whole body tensed and I literally popped up off the table. Didn't feel a think, just a reflex action, but it shocked them a bit. Once they got going, it was interesting to watch, but whenever I raised my head to get a better view of the screen, they said "Oops, time for more happy juice" and I was out again. I came out of the cath with a report that I had one artery that was 50% blocked. My surgeon told them not to bother stenting or anything. . . he would just take care of it while he was in there.

One note for aortic valvers -- If, for any reason, you need another cath in the future, be VERY sure you tell the cath team that you have a prosthetic valve. I was back for a repeat cath 5 years after valve replacement, needed to have a pacemaker wire replaced. They were planning to enter via the radial artery. I specifically asked to talk with the doc who would do the procedure and advised him of my prosthetic valve. He said "OH! Glad you mentioned that. When patients have artificial valves, we do not want to risk damaging the prosthesis, so we have to do cath via the femoral artery." I'm not sure what would have happened if I hadn't alerted the right doc about my valve. Second cath was a super non-issue after that.

 

[Luckyguy17]

All descriptions above are as i remember them for my angiogram/heart cath, done 11 years ago. The Right wrist was used in my case for the angiogram, but some in the recovery room had theirs done via the leg. If Iodine/shellfish allergy, this will need pre-treatment. The test was about 60 minutes, entire procedure including recovery time is several hours and you will need a driver for home return. I will also be getting an angiogram in next few weeks.
If not mistaken, the angiogram/cath procedure is performed by Interventionists-Cardiologists, which have about the same amount of additional education as heart surgeons.
Also believe these interventionists perform the TAVx procedures and much more. They are seemingly Complimentary/competitive with OHS surgeons.
When it comes to heart work, what is done and what can be done is quite amazing.
I had Kryptonite glue for sternum closure in 2010 as an alternative to wire closure. Am hoping to have this glue procedure done again, but the surgeon has not yet committed to the glue.
Is the glue for sternum, being used in the major US hospitals or offered as an alternative for sternum closure?

 

[Chuck C]

All descriptions above are as i remember them for my angiogram/heart cath, done 11 years ago. The Right wrist was used in my case for the angiogram, but some in the recovery room had theirs done via the leg. If Iodine/shellfish allergy, this will need pre-treatment. The test was about 60 minutes, entire procedure including recovery time is several hours and you will need a driver for home return. I will also be getting an angiogram in next few weeks.
If not mistaken, the angiogram/cath procedure is performed by Interventionists-Cardiologists, which have about the same amount of additional education as heart surgeons.
Also believe these interventionists perform the TAVx procedures and much more. They are seemingly Complimentary/competitive with OHS surgeons.
When it comes to heart work, what is done and what can be done is quite amazing.
I had Kryptonite glue for sternum closure in 2010 as an alternative to wire closure. Am hoping to have this glue procedure done again, but the surgeon has not yet committed to the glue.
Is the glue for sternum, being used in the major US hospitals or offered as an alternative for sternum closure?

Thanks for sharing. Having the Kryptonite glue sounds like a good way to go, unless you are Superman, then it might be problematic. He never mentioned that I have a choice in the matter, so he will probably close me up however he closes up all his patients.

 

[Superman]

Thanks for sharing. Having the Kryptonite glue sounds like a good way to go, unless you are Superman, then it might be problematic. He never mentioned that I have a choice in the matter, so he will probably close me up however he closes up all his patients.

Yep. They had to use the bread ties on me.

 

[tezza]

Thanks for sharing your experience! It sounds pretty minor. I have gone ahead and booked the cath with my cardiologist. My alternative was to get it earlier, but with another doc, but I very much prefer to have him do it and so does my surgeon.

So, valve replacement is set for March 22. Currently my cath is set for March 19. I wanted to get the cath earlier, but my cardiologist is booked until the 19th. I have a question:
Is a cath something that requires a recovery period, or is it so minor that getting in 3 days prior to OHS is fine and normal?
I could get my cath done a week before OHS, but it would mean going with another cardiologist, and my surgeon prefers my cardiologist, as they work as a team and he trusts him the most.
The cath sounds pretty minor and perhaps getting in three days before OHS is not an issue. Just checking to see if others had their cath done this close to OHS and if anyone has any thoughts on if it matters getting the cath done so close to OHS. The physician's assistant scheduling me did not think it would be an issue.
Thanks

First time round I had my cath just a couple of days pre surgery. Don't recall it being any big deal, apart from the fact that I wasn't given any sedation at all, and found it quite painful. A bit of bruising but no tenderness. This time round, my cath was done weeks in advance of my surgery (still waiting a date), to help with decision making re TAVR vs SAVR. I had lots of sedation this time, but 3 weeks later I am still bruised and tender in the abdomen and groin. Both times through the femoral artery. I don't know why the difference, who knows? So anyway, I don't think it really makes any difference when the cath is done, but others have already confirmed that as well. How good to have a date to plan to.

 

[Chuck C]

First time round I had my cath just a couple of days pre surgery. Don't recall it being any big deal, apart from the fact that I wasn't given any sedation at all, and found it quite painful. A bit of bruising but no tenderness. This time round, my cath was done weeks in advance of my surgery (still waiting a date), to help with decision making re TAVR vs SAVR. I had lots of sedation this time, but 3 weeks later I am still bruised and tender in the abdomen and groin. Both times through the femoral artery. I don't know why the difference, who knows? So anyway, I don't think it really makes any difference when the cath is done, but others have already confirmed that as well. How good to have a date to plan to.

Thanks for sharing that Tezza. I'm curious why you are still waiting for a date?