1. < Aortic Aneurysms

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 | @pamela78 | Aug 26 9:07am

I'm also dealing with my husband, who has early dementia. He's supportive but not really, if you know what I mean. I'm sorry your wife isn't the strength you need her to be at this juncture. No one really understands our situation like another person who's in it too. That's what's so great about support groups like this. You can say everything you feel without worrying about its effect on others. It's easier to be open with strangers in a safe environment like this. I'm also waiting for my dementia caregivers group to restart. Maybe I should check out the Mayo Clinic caretakers group. At any rate, I'm sorry for all you're dealing with. You'll get nothing but sympathy here. And I've learned so much about the heart since joining this group. Those who have been through a lot more than I have are an invaluable resource.

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bitsygirl | @bitsygirl | Aug 26 11:51am

Sounds like you are getting a little overwhelmed by the fact that you are dealing with several conditions that are not trivial. When this happens to me, I try to remind myself that nothing has changed since yesterday when I was less anxious and then I try to work whatever problems I am focused on that caused the anxiety.

Here are my thoughts on the situation you described. (Does it need to be said that I am just some schlub on the internet and not a medical professional?) I don't know anything about small vessel disease or how this might play into treatment of the aneurysms. Also I'm not sure I understand exactly where your two aneurysms are. I have one aneurysm in the ascending aorta and the aortic root is also enlarged/aneurysmal. There is a couple of tenths of a centimeter difference between the two. Our measurements aren't all that different actually. The cardio-thoracic surgeon I see hasn't mentioned the root specifically. Since both aneurysms are well below the surgical threshold (which I identified for the root on my own), my plan is to just ask about it the next time I get a measurement.

If you are having increasing angina, I think that's reason enough to schedule an appointment with whomever is monitoring your conditions. I'm not sure how trustworthy Apple Watch is for heart rate and especially blood oxygen. My Apple Watch is often wrong when I confirm its readings with a second more reliable device. Yet, as I said, the angina alone seems reason enough to schedule an appointment.

I'd ask the doctor to explain to me how these conditions relate and what the treatment plan is. Knowing this might help you deal with the anxiety when it arises. All of us with aortic aneurysms and multiple other conditions can relate. Hang in there.

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retiredrn | @retiredrn | Aug 27 8:35am

Regarding your nocturnal oxygen saturation levels, have you ever consulted a board certified sleep medicine physician (Neurologist, ENT or Pulmonologist) in order to get a sleep study done to rule out obstructive sleep apnea? Of note, the attended sleep studies where you spend the night in a sleep lab are far superior to "at home" testing, but of course insurance companies balk at paying for them. Wishing you all the very best!

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1 reply
wyomingmiller208 | @wyomingmiller208 | Aug 27 10:06am
In reply to @retiredrn "Regarding your nocturnal oxygen saturation levels, have you ever consulted a board certified sleep medicine physician..." + (show)
@retiredrn

Regarding your nocturnal oxygen saturation levels, have you ever consulted a board certified sleep medicine physician (Neurologist, ENT or Pulmonologist) in order to get a sleep study done to rule out obstructive sleep apnea? Of note, the attended sleep studies where you spend the night in a sleep lab are far superior to "at home" testing, but of course insurance companies balk at paying for them. Wishing you all the very best!

Jump to this post

I have had several sleep studies but as mentioned this low O2 saturation is happening in the first hours of the day after I am awake and already at work. So it isn’t directly related to sleep patterns.

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boxarrow | @boxarrow | Aug 28 11:17am

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.

REPLY
4 replies
moonboy | @moonboy | Aug 28 12:22pm

I am so sorry for your loss. Having dissected myself in 2015, I know just how lethal it is. You're absolutely right. The doctors should have listened to you and your husband should have been seen immediately. I cannot tell you how sorry I am for your loss.

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wyomingmiller208 | @wyomingmiller208 | Aug 28 1:00pm
In reply to @boxarrow "I think you should push harder or find another cardiologist. I fought for my husband who..." + (show)
@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

Thank you for your insights. I am sorry that you had such a great loss. It is never easy to lose someone you love like that. I will be proactive at my appointment tomorrow.

REPLY
Lara K | @larak | Aug 29 8:49am
In reply to @boxarrow "I think you should push harder or find another cardiologist. I fought for my husband who..." + (show)
@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 don't know if this helps at all, but you've convinced me that I need to find a new cardiologist. Mine is similarly unresponsive.

REPLY
1 reply
pamela78 | @pamela78 | Aug 29 9:55am
In reply to @boxarrow "I think you should push harder or find another cardiologist. I fought for my husband who..." + (show)
@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'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.

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1 reply
boxarrow | @boxarrow | Aug 29 10:08am
In reply to @larak "I don't know if this helps at all, but you've convinced me that I need to..." + (show)
@larak

I don't know if this helps at all, but you've convinced me that I need to find a new cardiologist. Mine is similarly unresponsive.

Jump to this post

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!

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