NEWBIE: Needs advice

[LondonAndy]

So now since I am able to function lilttle bit more here is the unexpected journey in brief:

I went for my cardiac catheter test on July 10 which takes about 50 minutes. Very early in the test my blood pressure dropped and I went into cardiac arrest. I was practically gone for a few minutes when they tried to revive me with electric shock and CPR. After 10 shocks I responded. Since my heart had stopped beating, we don’t know if there is permanent neural damages. My vision has taken a hit in not being sharp as well as unable to focus precisely.

I have been told by team doctors that it is a miracle that I am alive.

As for the valve, it is On-X. Presently the INR is 1.99.

So it was an open heat surgery with Pacemaker and defibrillator installed. Sutures will be removed on August 7

Oh wow, quite the experience.

Don't worry about the pacemaker. I got mine too from a surgical complication, and took me a few months to even start to think about what I needed to know!

Are you home yet? I am sure they will have given you the hygiene pep talk, but remember: infection is the biggest risk at home. Don't let well-meaning friends touch anywhere near your scar, make sure they wash their hands thoroughly, don't share towels and only use 2 or 3 times maximum before washing in a high temperature.

Good luck - doing great.

 

[Croooser]

"Whew - That was really close."

Best wishes for a successful recovery and a great rest of your life - that almost did not happen.

 

[rich01]

ETA: I went back and caught up. So much for my advice saying don't sweat the heart catheterization. Do they have any idea what caused your BP to drop?

I removed my other comments as they aren't pertinent now.

 

[W84Me]

rich01: Allergic reaction to contrast (which is the dye used) initiated it. Combine that with a blocked artery and aortic stenosis created a ”perfect storm“, as I was told. Fortunately a cardio thoracic surgeon is always kept as a backup in the hospital that proved pivotal.

 

[rich01]

rich01: Allergic reaction to contrast (which is the dye used) initiated it. Combine that with a blocked artery and aortic stenosis created a ”perfect storm“, as I was told. Fortunately a cardio thoracic surgeon is always kept as a backup in the hospital that proved pivotal.

Glad you are OK.

I was unable to pee after I had heart catheterization. I wonder if that might be related to the dye? Same thing after 2 stents put in. When I had TAVR, I took a Flomax just before the procedure and another after the procedure and that seemed to prevent having the problem.

 

[Gail in Ca]

I’m so glad you are alive and recovering!
What a story, yikes!!
I remember my 2nd surgery was delayed until evening because the patient before me turned out to be allergic to heparin. I think it was touch and go for him, too.
I thought cardiac caths were ‘just a test’ until I got mine when the nurses were on strike. I was given a fluid overload after the test in recovery when I had to stay lying down. I went into congestive heart failure from that nurse error. I was kept overnight, sent home just to come back a couple days later w bp of 90/19. My surgeon luckily was available so they kept me going another couple of days when he could do my avr #2. He later told me I was really sick going into that surgery.
My sister visited me when I was waiting for surgery. She asked the nurse outside the room about the tombstone looking pattern heart rhythm on my screen. She was worried for me but I was oblivious to that. I felt okay knowing my surgery was going to be the next day! Strangely, I didn’t feel as sick as I was.
We are all sending positive thoughts for your complete recovery!

 

[W84Me]

Thank you and God bless you all!

 

[newarrior]

You have gotten great input from everyone here. I felt like maybe I shouldn't say anything. But I want to add I think both choices are good ones. The odds are with a bio valve, a good one and a good surgeon, you would get 10-15 years out of it. Re-surgery would be at age 68-73 ODDS are. BUT you might be able to do a tavr then, and they might be able to tell you that now. The tavr could take you to 78-83.

If your family has great longevity, you probably then need another complex open heart when you are pretty old for that. A better idea would be open heart, open heart, tavr. So bio open heart now, at 68-73, then tavr at 78-83 which gets you across into late 80's early 90's.

From my own experience and obsession about the data, I think that's a good plan. Open heart, open heart, tavr.

Any open heart after tavr is not a good plan, at least with current stats. It's a tough surgery that not that many surgeons have a lot of experience with. I am likely faced with this between now and 73, but more likely at 68 to 73.

Ok, now if you do mechanical now, it's quite possible you have another surgery at age 78-88...sort of worst case scenario. Open heart. You can't do a tavr. On average this would happen at 83, but I would defer to others. You CAN survive that surgery. This seems like a better option. If outlive that valve past 88 that's almost worse.

You make a good point about longevity my mom died at 74 of a heart attack my brother was killed at 46 my dad died at 74 of some acute leukemia so that adds up to an average age of death at 65. I'm turning 62 next month so I'm theoretically only 3 years away from being dead based on my family average. However because I'm vegan and I'm a fitness fanatic Don't drink don't even do caffeine I expect to live closer to 90 so it's good to try to figure out you're right about how long you're going to live and how you going to have enough valve to take you through the rest of your life I'm expecting to do AvR at 62 63 64 at the latest probably go tissue ..then go tavr 1 to 2x... I couldn't do the blood thinners my life is to act if I travel the globe and I live overseas where communication outside of the country with my doctors in my country of origin would be difficult also the ticking would drive me mad I've already got ringing of the ears from hearing loss for 28 years so I can't possibly zone out on two different sounds but again everybody's situation is so radically different.. also I take tons of supplements and other things that would throw my INR off plus I'm completely plant-based and other than breakfast my diet is erratic and all over the board the times of day I eat I couldn't be like other people and saying I'm going to have six cups of spinach every day I can be consistent like that but again everybody's different sorry to monopolize or jackknife the conversation

 

[newarrior]

Is the LDL Cholesterol above in my blood report Lp(a)? Running a Google search seems to say that.

EDIT: Never mind. Will get Lp(a) test done asap.

Do it. My LPA is 90 normal is under 30 I believe that's why I've got tricuspid aortic stenosis that was discovered in my 40s LPA I think that's what killed my brother at 46 of a heart attack they have been what killed my mother at 74 and my grandmother is 64 also of heart attacks

 

[nobog]

.. also I take tons of supplements

Probably not the best plan.

 

[Chuck C]

Do it. My LPA is 90 normal is under 30 I believe that's why I've got tricuspid aortic stenosis that was discovered in my 40s LPA I think that's what killed my brother at 46 of a heart attack they have been what killed my mother at 74 and my grandmother is 64 also of heart attacks

I think that is very likely. Lp(a) is largely genetic, so we see it run in families. I know of several families who suffered for decades with early heart attacks and valve disease, only to discover that elevated Lp(a) runs in the family. Still, due to the fact that Lp(a) testing is still semi-rare, most such families go undiagnosed. This will hopefully change with worldwide lipid testing guidelines now recommending that individuals be tested at least once in their lifetime.

Even for individuals who present with early CVD, heart attack or stroke, Lp(a) testing is still overlooked. The 2023 study linked below speaks to this problem.

"Despite its high prevalence and clinical significance, clinical measurement of lipoprotein(a) is rare.."

"Lipoprotein(a) testing was performed in 6469 individuals with ischemic heart disease (2.9%), 836 with aortic stenosis (3.1%), 4623 with family history of CVD (3.3%), "
Conclusions
"Lipoprotein(a) testing persists at low rates, even among those with diagnosed CVD, "


https://www.ahajournals.org/doi/10.1161/JAHA.123.031255

 

[newarrior]

I think that is very likely. Lp(a) is largely genetic, so we see it run in families. I know of several families who suffered for decades with early heart attacks and valve disease, only to discover that elevated Lp(a) runs in the family. Still, due to the fact that Lp(a) testing is still semi-rare, most such families go undiagnosed. This will hopefully change with worldwide lipid testing guidelines now recommending that individuals be tested at least once in their lifetime.

Even for individuals who present with early CVD, heart attack or stroke, Lp(a) testing is still overlooked. The 2023 study linked below speaks to this problem.

"Despite its high prevalence and clinical significance, clinical measurement of lipoprotein(a) is rare.."

"Lipoprotein(a) testing was performed in 6469 individuals with ischemic heart disease (2.9%), 836 with aortic stenosis (3.1%), 4623 with family history of CVD (3.3%), "
Conclusions
"Lipoprotein(a) testing persists at low rates, even among those with diagnosed CVD, "


https://www.ahajournals.org/doi/10.1161/JAHA.123.031255

All very true Chuck and I have discussions about this all the time

 

[dornole]

There are two guys in my cardiac rehab who got the profile (early coronary artery disease and strong family history of the same) and neither had heard of Lp(a). Thanks to this group I was able to share and they will both get tested and start watching for new trials and treatments. You never know who will benefit from posts here!

 

[Timmay]

My Lp(a) is 188.5. “Normal” is under 75 nmol/L.

Looking forward to new drugs coming through the pipeline that target Lp(a) specifically.

I started down the path of Repatha since I am also sensitive to statins (major leg and foot cramps that CoQ-10 doesn’t alleviate). But, for me, I couldn’t bring myself to take it even though I really want to. 3 factors kept me away from it. The most important is that I have a history of weird auto-immune stuff (including hashimoto’s). Not good if you’re looking at a monoclonal antibody like Repatha. Second, the PCSK9 protein that Repatha inhibits is being found to be necessary for other stuff. If you inhibit it, then you’re potentially causing issues elsewhere. Example: there’s a group of people that got neuropathy on it. Well - the PCSK9 protein appears to be important for the myelin sheath of nerves. Egad. Last but not least, the FOURIER trial that proved its efficacy and safety appears to have fudged data. WTF.