Symptoms of Need for Aortic Valve Surgery

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Lex Luther

VR.org Supporter
Supporting Member
Joined
May 16, 2013
Messages
17
Location
Houston Texas
I was diagnosed in 2012 with an ascending aortic aneurysm of 4.7 and mild aortic valve regurgitation and have been in the waiting room. I also have afib, but only have few occasional bouts and am taking warfarin. I have continued cycling with the blessing of my doctor. Through the recent 3 or 4 years I have seen my cycling times gradually get slower but know I am also 68. Within the past year, I have noted some breathing issues and started using Symbicort, which appeared to help, and I chalked it up to my childhood asthma making a come back. I noted a restrictive breathing sensation on the upper right lung, and the X-ray showed noting so went in for an echo in Feb. which determined that aortic regurgitation was now moderate, and the aneurysm had grown to 4.9cm. I was feeling tired in the morning when I woke up, but chalked that up to being exhaustion from being a caregiver for my wife. A year or so I had a sleep study due to poor sleep that indicated it was inconclusive for sleep apnea, but my doctor wanted me to consider a CPAP machine, which I was unable to tolerate. I have recently started to notice brain fog. I went through a list of my medications to screen for those that might cause restrictive breathing and brain fog, and determined to gradually taper off of Gabapentin and stopped taking it in early May, although I am told that its effects continue for some time. This did not appear to make a noticeable change so I purchased a wearable pulse ox to use at night, which provides fairly extensive reports. I noticed that on some rare occasions, there would be drops to the upper 70s associated with an elevated momentary heart rate of 95, I assume to compensate. I determined to lose the extra 7lbs I gained through this COVID debacle, and increased cycling with some offsetting weight loss, and the pulse ox reading has not gone down this low recently, dropping no lower that 85. My "average" now is between 90-95. I notice that there are drops associated with the motion of having to get up to go to the bathroom, which appears to be increasing, which I have associated with the heart valve as well as BPH. So over all, the symptoms are feeling more tired, breathing issues particularly at night, and brain fog. Add to that a concern for a resting pulse of 43. I have done aerobic exercise most of my adult life, am not overweight and have remained in good shape, but I am NOT an elite athlete. During the day, my pulse ox is always above 95, but the night time decrease is causing concern regarding brain fog and resolving oxygen insufficiency. I am scheduled for my annual cardio review in July, which will include an MRI thereafter. I monitor this forum every day and appreciate the insight and experience of your input. My assumption is that the need for surgery may be drawing near, even a 4.9 for the aneurysm, but would appreciate your input so I can have as much prepartion time as possible - I will sorely need it. I guess I have been blessed with being asymptomatic , or so I thought, but that time appears to be over. Still have have read your reports of having to deal with lack of energy and related energy which you endured for sometime before surgery?
 
Hi there!
My husband had an Ascending Aortic Aneurism and bicuspid moderate leaking valve in 2018 (its since been treated with surgery). For about a year prior to diagnosis, he complained of "heartburn" and feeling his heart beat in his throat, which he attributed to the use of energy drinks and/or alcohol. After exercise, he would complain of seeing "fireflies" in his vision...like dizziness but also had a hard time getting his eyes to focus. He also had something called waterhammer pulse, which made his pulse SO strong, his vision would jump in rhythm to his heart beat, I could also see his pulse in his neck, behind his knees, on his lips, etc. That really did a number on him, having it feel like his eyes were bouncing around in his head, so he didnt sleep much and would be routinely foggy, cognitively. Shortness of breath was fairly apparent once we got the diagnosis, but maybe we noticed it more because we knew what was going on? Before his first and second surgeries, he was very tired/fatigued and didnt have the stamina to do much more than day to day things like walk through a grocery store. His symptoms were even worse when it was hot outside. Basically, we could run down the list of symptoms of heart failure and check just about every box. But we are about 10 months after his last surgery, and he is doing wonderful. Brings tears to my eyes just thinking about how much confidence in his body he has gained back. Our bodies are so strong, yet so fragile, but incredibly adaptable and resilient. Its amazing!
Best of luck to you through your journey,
Jill
 
Hi Lex,

I too am in the waiting room but much further behind you (I think as I haven’t had a scan for nearly a year)
I have been having breathing issues and also had childhood asthma and was put back on inhalers even though I don’t really need them all the time. I get really weird heart sensation if I get scared and my hearts beating fast up going up more than 2 flights of stairs I get dizzy and light headed.
Also I get a central ache if my hearts working harder.

Keep safe and let us know your outcome.

Al
 
Hi Lex
I have been through v similar. Pretty much asymptomatic BAV with aneurysm being monitored annually, then bi-annual until aneurysm reached 5.2 in December last year.

Then referred to surgeon, then COVID!.
My valve is actually not too bad (~65%) but aneurysm now reason for surgery - I'm 56 y-o.
If you've not yet been referred to surgeon I'd expect that to trigger the need to start planning.
Steve
 
Thanks Jill, Al and Steve for sharing. Makes me feel better to know other's symptoms associated with the heart valve issues. The cognitive issues are of greatest concern now due to my caregiver role, as well as being blessed to work from home due to COVID. Certainly want to delay surgery if at all possible until there is some better treatment for COVID, particularly for people in our situation. Was wondering whether oxygen might be an alternative at night?

Steve, my younger sister had a 4.7 aneurysm in the same exact place as mine and flew to Houston (Texas Heart) to have it and her valve issue resolved in 2012, as she was symptomatic. Her surgeon suggested I be checked out even though I had recent tests that indicated my heart was in excellent shape. Glad I followed up.
 
Is not low oxygen and brain fog associated with sleep apnea? If so, you might want to revisit that. With the newer equipment you can do a sleep study at home. Maybe your inconclusive apnea has changed to conclusive. Do you have trouble staying awake during the day? I believe there is a questionnaire that you can take to help see if you have symptoms.

I had trouble getting used to the CPAP, but now I'm like Pavlov's dog, as soon as I strap on the mask, I'm off to the land of Wynken, Blynken and Nod. I had a cardiac nurse say to try using the machine while in a chair first while watching TV to get used to it. I didn't try it but she said it was helpful for some.
 
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