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Buck83

VR.org Supporter
Supporting Member
Joined
Apr 12, 2024
Messages
25
Location
WV
Hello. New to site but been reading threads for 2 years. Hours after 2nd dose of COVID vaccine in 2021 started to experience chest discomfort that I’d never had. 5 weeks later was in the doctors office getting an echo and stress test ordered. Found a moderate regurgitation in my av and a 5cm aneurysm. 6 months later was in OHS getting an aortic graft and On-X valve. 9 months after that I suffered a stroke believed to have been caused by a clot on my av, even with anticoagulation. Luckily, there were no lasting detriments. About 6 months after that my valve leaflets started operating asymmetrically, believed to be caused by another clot on the av. CT was inconclusive on the clot but cardiology raised my warfarin dosage and 2 months later it was back to normal operation. Thankfully things have been better since then aside from the constant cardiac anxiety. Been a fun ride so far. Hopefully the worst is behind me.
 
Welcome to the site and good luck moving forward. I'm curious, have you ever had genetic testing for clotting? Typically identified as thrombosis panel (deep vein thrombosis) and includes Factor V Leiden, Prothrombin gene mutation and MTHFR gene and possibly protein S & C. The test findings have a pretty high odds ratio in people whom have had a history of clotting. I'm not sure they would change much if you are already on warfarin but you may want to discuss this with your cardiologists.
 
Welcome to the site and good luck moving forward. I'm curious, have you ever had genetic testing for clotting? Typically identified as thrombosis panel (deep vein thrombosis) and includes Factor V Leiden, Prothrombin gene mutation and MTHFR gene and possibly protein S & C. The test findings have a pretty high odds ratio in people whom have had a history of clotting. I'm not sure they would change much if you are already on warfarin but you may want to discuss this with your cardiologists.
Sure did. After the stroke I was sent to hematology and was tested for everything. Wasn’t positive for anything that would make me prone to clotting.
 
Hi Buck and welcome
9 months after that I suffered a stroke believed to have been caused by a clot on my av, even with anticoagulation. Luckily, there were no lasting detriments. About 6 months after that my valve leaflets started operating asymmetrically, believed to be caused by another clot on the av. CT was inconclusive on the clot but cardiology raised my warfarin dosage and 2 months later it was back to normal operation. Thankfully things have been better since then aside from the constant cardiac anxiety.
sounds difficult. I know another member who had a similar issue of a clot and a small stroke (which was removed by catheter intervention) and some annoying (and it really dragged him down psychologically) difficulties with the femoral artery closure ... but he's now striding along well.

I too had a post surgical complication (which was an infection) but I believe I'm past that now.

Best Wishes
 
Hi Buck and welcome

sounds difficult. I know another member who had a similar issue of a clot and a small stroke (which was removed by catheter intervention) and some annoying (and it really dragged him down psychologically) difficulties with the femoral artery closure ... but he's now striding along well.

I too had a post surgical complication (which was an infection) but I believe I'm past that now.

Best Wishes
Thank you and best wishes to you too!
 
So, here’s the most deflating part of my whole journey…

I am a 23 year military member. I am in the Air National Guard but have been on a Title 10 active duty tour since 2020 and all this has happened while on active duty. I just found out this week the military denied my Line of Duty determination and are denying this could’ve been serviced caused or service worsened. Everyone in my unit is beside themselves and can’t believe the decision by the National Guard Bureau. I have 30 days to appeal and if the determination isn’t overturned I will be non-retained and forced to retire and won’t be able to draw my retirement until 57. But the worst part is I will lose my Tricare insurance and my full-time federal job with the ANG that requires me to be in the military. I owe everything I have to my 23 years of service and I’m starting to regret all of it.
 
Hi @Buck83,

sorry to hear about all your issues.

Out of interest, what was your initial INR range on the ON-X?


Hello. New to site but been reading threads for 2 years. Hours after 2nd dose of COVID vaccine in 2021 started to experience chest discomfort that I’d never had. 5 weeks later was in the doctors office getting an echo and stress test ordered. Found a moderate regurgitation in my av and a 5cm aneurysm. 6 months later was in OHS getting an aortic graft and On-X valve. 9 months after that I suffered a stroke believed to have been caused by a clot on my av, even with anticoagulation. Luckily, there were no lasting detriments. About 6 months after that my valve leaflets started operating asymmetrically, believed to be caused by another clot on the av. CT was inconclusive on the clot but cardiology raised my warfarin dosage and 2 months later it was back to normal operation. Thankfully things have been better since then aside from the constant cardiac anxiety. Been a fun ride so far. Hopefully the worst is behind me.
 
Hi @Buck83,

sorry to hear about all your issues.

Out of interest, what was your initial INR range on the ON-X?
Original range was 1.5-2, which was why I chose the On-X. I wanted the lowest INR possible. After the stroke they bumped me to 2-3 and after the possible 2nd clot in the fall they bumped me to 3-3.5. I’m hoping to eventually get moved back down to at least 2-3. From the trials I’ve read with as many as 200,000 participants, there were no strokes with On-X at the 1.5-2 range. I was the lucky winner of that lottery I guess.
 
As a owner of a six-week old On-X valve (and aorta graft as well), would you mid sharing your stroke symptoms? My decision making around the On-X valve matches yours. I'm 55.

And, thank you for your service. It's a damn shame what the Guard is doing to you. I hope your appeal works.

AND...I have no proof of course, but I do wonder what the vaccine (taken Apr/Jun 2021) did to accelerate my stenosis severity. I was mild in 2020, moderate in 2022, then severe in 2023. The acceleration of severity was quite surprising. Every patient is different in progression, I get that. But it does leave me wondering. Luckily I only had one set of jabs (Moderna) and never went back for more.
 
i had a couple episodes in the weeks leading up to my stroke where I was confused and kinda felt like I was in a dream. Looking back they were probably TIA’s or at least precursors to the stroke. But there were only a couple and lasted maybe a couple minutes. I attributed it to my body still adjusting to things. The day of the stroke I was fine. I worked all morning at the computer and took a long lunch to get in my Physical Training for the day. I was doing fasted cardio at the time and was probably 12-14 hours fasted and was on the spin bike and got very weak and lightheaded. I figured my blood sugar was low so I tried to get off the bike and fell on the floor. I got to my feet, sat down, and drank some water. I got back on the bike and finished the remaining 15 minutes of my workout. Afterwards I got a shower and got dressed. I was trying to put my shoes on and kept dropping them. I was trying to drink water and kept dropping the water bottle. I was trying to text my wife and nothing made sense. She was worried and called 911 without telling me. Ambulance showed up and my speech was slightly off, my face was slightly numb, and I was a little weak on that same side. Within 3-4 hours the symptoms subsided but the MRI confirmed a clot and I spent 5 days in the hospital for observation.
 
AND...I have no proof of course, but I do wonder what the vaccine (taken Apr/Jun 2021) did to accelerate my stenosis severity. I was mild in 2020, moderate in 2022, then severe in 2023. The acceleration of severity was quite surprising. Every patient is different in progression, I get that. But it does leave me wondering. Luckily I only had one set of jabs (Moderna) and never went back for more.
I’m not a political person and understand the sensitivity of this matter. I respect everyone’s opinion and signed my name to defend this country 23 years ago so everyone has the right to have that opinion. With that said, I have been an athlete and obsessed with fitness my entire life. I qualified for special forces in basic training (and decided against it), was doing crossfit and functional fitness before it was ever a fad. I played in multiple adult competitive basketball leagues, races atv’s in 2+ hour woods races, competed in triathlons, and ran a physical training program in my unit. During COVID I was in tremendous shape. I was running, biking, and rucking (70lb pack 5-6 miles at a time), lifting, rowing, and swinging kettlebells. Everything was great until a few hours after my 2nd round of Pfizer. I started feeling crazy discomfort in my chest that went on for months. After 5 weeks I went to my pcp and they sent me to cardiology and I suddenly had a leaking valve and severe aneurysm. I blamed the vaccine immediately. No doctor would entertain the conversation in 2022. Now they talk openly with me about it. We all feel the vaccine caused myocarditis in my heart that caused stress and possibly caused the aneurysm but definitely made it worse FAST! After my surgery my aortic valve was sent for pathology. My surgeon and the pathologist came to talk to me at separate times and both said the cells in the leaflets were inflammation at levels they had never seen before. I have asked my surgeon to write something on that for my appeal but I don’t see it happening. They still won’t put their name on anything that goes against the vaccine. We are living in crazy times and some of us will be major losers in this game.
 
I am really sorry to hear your story. I remember there was someone on this board, who had served, like you, and was still doing 100+ pushups in his 60s after his AVR.

What I mean to say is that there are many people who are incredible atheletes, but can still have aortic valve issues. Arnold Schwarzenegger is a very prominent example since bicuspid valve disease runs in his family. Now you developed an Aneursym. We dont have a good idea why Aneurysm develop. We know that you are predisposed to it if your valve is bicuspid. But hard to tell why it happens. But what we do know is that Aneurysms develop very slowly over time. What you describe, getting an Aneurysm in five weeks, hasnt been described in the academic literature before. Usually they grow by a 2-3mm per year. Of course, given all of these myocarditis issues in younger people, it is plausible that the vaccine exacerbated a condition that was already there.

have you ever had you heart checked before then? Did you have any medical checkups before this happened? Did anyone every mention anything about a heart murmur? - If they havent, then perhaps this is how you could make your case for the appeal stronger...

Good luck with the appeal.
 
I am really sorry to hear your story. I remember there was someone on this board, who had served, like you, and was still doing 100+ pushups in his 60s after his AVR.

What I mean to say is that there are many people who are incredible atheletes, but can still have aortic valve issues. Arnold Schwarzenegger is a very prominent example since bicuspid valve disease runs in his family. Now you developed an Aneursym. We dont have a good idea why Aneurysm develop. We know that you are predisposed to it if your valve is bicuspid. But hard to tell why it happens. But what we do know is that Aneurysms develop very slowly over time. What you describe, getting an Aneurysm in five weeks, hasnt been described in the academic literature before. Usually they grow by a 2-3mm per year. Of course, given all of these myocarditis issues in younger people, it is plausible that the vaccine exacerbated a condition that was already there.

have you ever had you heart checked before then? Did you have any medical checkups before this happened? Did anyone every mention anything about a heart murmur? - If they havent, then perhaps this is how you could make your case for the appeal stronger...

Good luck with the appeal.
I have never had any symptoms of any kind of health issues. I have an annual physical religiously. Had to pass a physical to join the military. No heart murmur has ever been detected. I know what all the literature says about aneurysm development and I appreciate you trying to reason with me and ease my mind. I know how I felt my whole life and I know exactly when they changed significantly. I’m not attempting to play a game with my retirement or my benefits. I’d take my health back over all that. I don’t think this vaccine was bad for everyone. But there’s enough evidence out there now proving it seriously hurt some people
 
Thanks for sharing your story with us and welcome to the forum Buck83.

On-X valve. 9 months after that I suffered a stroke believed to have been caused by a clot on my av,
When I read this, I wondered if you were subscribing to the 1.5 to 2.0 INR range, but then my question was answered in your later post:

Original range was 1.5-2, which was why I chose the On-X

Sadly, we've had a few members suffer clotting issues using the low INR range of 1.5-2.0. There is a lot of controversy with this range and many here with an On-X choose to target 2.0 to 2.5 or 2.0-3.0. My final surgical consult was primarily to decide with my surgeon whether to go with the On-X or St. Jude mechanical valve. He left the choice to me, but indicated that if I went with the On-X that he would have me at INR 2.0 to 3.0, as he and his colleagues believed that the study claiming to justify the 1.5 to 2.0 range for the On-X was dodgy.

Glad that you are now at a higher INR range now and hope that the clotting issues are a thing of the past.

Really unfortunate to hear about your issues with the Air National Guard.
 
Thanks for sharing your story with us and welcome to the forum Buck83.


When I read this, I wondered if you were subscribing to the 1.5 to 2.0 INR range, but then my question was answered in your later post:



Sadly, we've had a few members suffer clotting issues using the low INR range of 1.5-2.0. There is a lot of controversy with this range and many here with an On-X choose to target 2.0 to 2.5 or 2.0-3.0. My final surgical consult was primarily to decide with my surgeon whether to go with the On-X or St. Jude mechanical valve. He left the choice to me, but indicated that if I went with the On-X that he would have me at INR 2.0 to 3.0, as he and his colleagues believed that the study claiming to justify the 1.5 to 2.0 range for the On-X was dodgy.

Glad that you are now at a higher INR range now and hope that the clotting issues are a thing of the past.

Really unfortunate to hear about your issues with the Air National Guard.
I agree. The 1.5-2 is probably not safe. Also, when I chose the On-X there was a trial going on with Eliquis that looked hopeful. My surgeon said it was almost 3/4’s through and typically if a trial made it that far it was gonna pass. I was hoping to be able to use Eliquis as opposed to Warfarin to avoid the testing and dietary restrictions. Sadly, a month after my surgery the trail was stopped.
 
I think given that

a) your valve wasnt bicuspid - so your condition is not congenital (meaning you were not born with it)
b) Your physicals never detected a heart murmur and you had them annually
c) You got sick while on duty

How can they disagree with the idea that this happened as part of your job? By the way, some doctors think that excessive stress plays a role in aneurysms. Point is there are many factors behind aneurysms. Some could be work related.

So I hope that your appeal works. It is frankly ridicoulos that given the facts above they ruled against you.

I am so sorry about all this for you and I hope that they will see sense during the appeal.
 
From the trials I’ve read with as many as 200,000 participants, there were no strokes with On-X at the 1.5-2 range. I was the lucky winner of that lottery I guess.

The trial which allowed Cryolife to get the FDA to accept the lower INR range for the On-X was known as The PROACT Trial. The publication linked below contains data from the PROACT Trial. There were only 375 patients studied in the trial, with about half going to the the lower INR range of 1.5 to 2.0 and the other half, the control group, getting the range of 2.0 to 3.0. There ended up being significantly more TE and Thrombosis events in the 1.5 to 2.0 INR test group; 2.96/patient year vs 1.85/patient year in the control group. See link to Table 1 from the study linked below. That represents a 60% increase in events. Yes, the lower INR group had fewer bleeds, but many are of the opinion that they would rather have a bleeding event than a stroke.

Table 1

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6472691/table/table-1/?report=objectonly

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6472691/

Edit:
I came across this publication which was from a presentation of the interim results for the the PROACT Trial and wanted to add it to the above as it includes some additional data which I find interesting. See link below.

Some findings which I find noteworthy:

"No difference was noted between the low-dose and standard therapy arms at 1.6 years of follow-up, including mortality (2.1%/patient-year [PY] vs. 1.3%/PY, p = 0.45), major bleed (2.8%/PY vs. 4.2%/PY, p = 0.36), minor bleed (3.1%/PY vs. 4.8%/PY, p = 0.3), stroke (1.4%/PY vs. 0.3%/PY, p = 0.16), peripheral thromboembolic event (0.69%/PY vs. 0.32%/PY, p = 0.52), thrombosis (0% in both arms), or a major event, defined as major bleed, stroke, or thrombosis (4.2%/PY vs. 4.5%/PY, p = 0.84)."

They use the term "No difference" but there were, in fact, several differences. I believe that the proper phrasing would be to say: "The differences did not reach statistical significance." This is often the case when a study is under powered with low patient enrollment, and the enrollment was relatively low for PROACT.

One can only wonder if these differences would have reached statistical significance if the study had a higher power with more enrollees:

Mortality (2.1%/patient-year [PY] vs. 1.3%/PY, p = 0.45) This represents a 62% increase in mortality for the low INR group.

Stroke (1.4%/PY vs. 0.3%/PY, p = 0.16) This represents a 467% increase in strokes in the low INR group.

Peripheral thromboembolic event (0.69%/PY vs. 0.32%/PY, p = 0.52 This represents a 216% increase in the low INR group.

Major bleed (2.8%/PY vs. 4.2%/PY, p = 0.36) The low INR group had 33% fewer major bleeds.

Of all of these, the one which I pay the most attention to is mortality. I find a 62% increase in mortality very noteworthy, even if the p value did not reach statistical significance. Was the strategy to keep the enrollment sufficiently low in order to be able to say "No difference in mortality"?
Interesting that the FDA gave approval, given there were so few enrollees. In my view, there is good reason for the controversy over PROACT, as well as the decision to allow for the lower INR range by the FDA. I would also be very interested to know how many of the strokes and other clotting events left the patients with permanent damage.

https://www.acc.org/Latest-in-Cardiology/Clinical-Trials/2014/04/17/21/22/PROACT
 
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