Update from new echo and input needed

Posted by wyomingmiller208 @wyomingmiller208, Aug 25 9:35pm

I was originally diagnosed two years ago with a 4.4 cm thoracic aortic aneurysm. The following year it was measured at 4.6 cm for the echo and 4.7 cm for the CT but the doctor is following the echo since we have two readings. My most recent echo the third one,
shows it’s still at a 4.6 cm so it appears stable. But the doctors report for the procedure also showed a second aneurysm. The sinus of valsalva measuring 4.24 cm. I have two 4. + aneurisms at either end of the aortic root. The report indicates that that is also stable, but I do not remember him talking to me about that previously although my wife does, but I’m not sure how she remembers that since she is not been to an appointment with me yet. :-). Not any fault of hers other than she has never been sick and doesn’t know how to deal with or process information like this so she chooses to internalize and ignore it.

I do also have some mild aortic valve regurgitation and Mild tricuspid valve regurgitation. It’s been just over a year since I went to the Cath lab and found small vessel disease. 2 vessels are 90% and one 80% blocked. I am not too freaked out since it is something I figured I have already had and just didn’t realize for over a year. But it also makes me wonder if I need to be pushing a little harder. But if I do what should I be pushing for? Your opinions would be welcome.

I also have been having problems with increased angina and low heart rate despite cutting my dose of metoprolol in half. Heart rate at night is regularly in the 40’s and a number of times as low as 41 for ten plus minutes, enough to alert my Apple Watch to start buzzing me. In addition I have recently notice my blood oxygen has been all over the place. Lowest point so far has been 85% but that is the first hour after I wake up and am already at work. So it does not coincide with low heart rate. Many many torn ligaments and tendons 8 surgeries so far. Suddenly I don’t need further diagnosis of connective tissue disorder.

All of that together makes me feel a little more of a walking time bomb. Life is good and moves on.

If you have any thoughts to share please do. I appreciate this group and the chance to discuss openly with each other.

Interested in more discussions like this? Go to the Aortic Aneurysms Support Group.

@pamela78

I'm terribly, terribly for what you've been made to endure. If I were you, I'd be talking to a lawyer. You're right about our health care system. (I'm a retired professor and I'll say our educational system is messed up too. People who should know better and do better for some reason don't.) No one should have to go through what you and your sweet husband did. You did everything you could and more. It wasn't you who failed; it was the very people you relied on to help you. This makes me very angry. You have my most sincere condolences.

Jump to this post

Thank you. This is the worst possible thing I have ever imagined. As much as I fought, he lost his life anyway. I am consulting with a lawyer to see what can be done. NO ONE should have to go through this again

REPLY

I agree. I'm so sorry. I'm glad you're talking to a lawyer. Nothing can bring back your husband but perhaps next time something like this happens those in charge will do better. At the very least you could write a review of the practice and the doctor. I'm always being asked for my opinion about how things went after my doctors' appointments. So far I've had no complaints, but you should give your husband's doctors an earful. Be brave.

REPLY
@boxarrow

Yes, if they aren’t listening to you, I would move on to another cardiologist.its frustrating dealing with Drs who don’t have a valid reason to wait. I feel like saying, “wait for what?” I mean there’s no benefit to waiting in my honest opinion because we are only going to get older, weigh more, etc. it’s harder on our bodies to “wait” and have surgery when we are older. The bottom line is, I have an aneurysm. It needs to be fixed. Now. I don’t see ANY benefit to waiting. It needs to be replaced, it’s not going away, it’s only going to get worse and I’m going to be older and less of an optimal candidate for heart surgery. Of course this is only my opinion. But fight the fight for your heart and a better outcome than my husband had. Best of Luck and I hope you find a cardiologist that will listen. If you don’t find that cardiologist, find a cardiac surgeon that does these grafts and repairs. Likely the surgeon will help you most. Take your CD of your echo/cT/MRI to the surgeon. If this can save even one life it’s worth it!

Jump to this post

I've been holding out to see where the FDA goes with the new ascending aortic stent that can be installed via TEVAR procedure: the Gore Ascending Stent Graft. It was supposedly in Phase 2 trials last year.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10022529/
If my aneurysm increases in size next year, I probably need to stop waiting. (Or find one of these 19 centers running these trials.) It has held steady at 5 cm for a year and a half now. We'll see.

But I also have chronotropic incompetence, some sort of oxygen exchange abnormality, PVCs/PACs, a right axis deviation of EKG, and this new chest pain. And my doc just doesn't seem to give a poo. I have a number of other labs and imaging results that suggest a rheumatological component to all this. Given my genetics, likely Behcet's. None of that is being looked at, at all. It's more like, "Huh. That's interesting."

REPLY
@boxarrow

I think you should push harder or find another cardiologist. I fought for my husband who had an aortic aneurysm in the aortic root of 5.0 per echo and up to 5.5 per CT scan. He also had mild-mod regurgitation of his mitral valve and mod-severe regurgitation of his aortic valve. These tests were done on 7/24/24. I am an RN and when he got his results from the patient portal, I started blowing up the Drs office phone. They refused to see him until his scheduled appt on 8/23/24. I screamed and hollered and no one listened. Sent messages to Dr through patient portal. Nothing. No response from anyone until I requested his records to go to Houston Methodist Debakey Vascular Unit. Then the “valve clinic RN” called us and said “yes I see how many times you called. Yes I see how long it’s been. I will give your message to the Dr.” I told her right then that my husbands father had died from this exact same thing at 67 yo. My husband was 66 yo. I told her that I was living with a ticking time bomb and that he could blow his aorta at any moment and he needed to be seen NOW. She said, “we will let the Dr make that decision. Keep your appt for 8/23/24. If the Dr thinks it’s an emergency then he will tell us to get him in sooner”. That discussion was on 8/5/24. No phone call has ever been received to discuss his test results. My husband collapsed and died in our home at 8:00 on 8/10/24. I am extremely angry right now at our health system. It is BROKEN. I was the best patient advocate that I could have been for my husband and no one listened to me. I believe the cardiologist clinic office killed my husband by not doing the right thing. This was preventable and should have been handled differently. In hindsight, I should have taken my sweet husband to the ER and told them he was having chest pain. Be an advocate for yourself because the Drs and nurses where we went couldn’t care less about my husbands life. I was so strong with the office and nurses that my husband even told me, “don’t be so pushy. If the Dr thinks I need to be seen sooner, he will get me in.” He put so much faith in his Dr. I didn’t even cancel
his appt for 8/23/24. I thought they might call to check on him since his tests results were so critical. NOPE. Not a call from anyone except the autopsy that I had done on him. He dissected his aorta from his aortic root to his renal arteries. I pray he didn’t feel the pain from this.
I don’t know where you are receiving your healthcare but get to a large hospital and go to the ER with chest pain and tell them that you have an aortic aneurysm on last scan. Hopefully they will save your life.

Jump to this post

I can only imagine your rage and the helplessness you felt when they wouldn’t listen, AND the horror of his sudden and fatal collapse. Please know prayers for your peace of mind and the righting of the injustice visited upon you by your sweet husband’s “health providers” have been offered by me. I totally agree with the advice you gave of going to ER advising of aneurysm and saying chest pain… thank you for caring about the rest of us especially when your grief is so fresh♥️

REPLY
Please sign in or register to post a reply.