BAV since teen, worried about future

[nate99]

Update:

Had my echo on Tuesday and was told it would take a week before the results would be ready. It had been an up and down time for me as far as my OCD/anxiety disorder. This is a pretty inactive time for me, I'm a teacher and school doesn't start up for a few weeks. I live alone and am single and while I have good friends, we mostly all give each other space if needed. This means pretty much I've been allowed to just sit around and stew about my obsessions. Some days have been rough and it has been difficult to find the motivation to be active. Been pondering endlessly about heart surgery, the nature of our existence, aging, life/death, afterlife, religion. I'm mentally exhausted. While the internet is amazing, it can definitely help fuel an OCD person's obsessions as there is endless information. Checking and reading becomes a kind of compulsion to make the obsessions temporarily disappear. Sometimes I'll feel like a have a sensation in my left chest. Or I'll wake up at night with anxiety and feel my heart beating really fast. Other times I'll feel my mind trying hard to stop thinking about these obsessions.

Anyway, I got a message from my doctor this morning, and apparently a cardiologist looked at my results already:

"I am pleased to inform you that your recent heart echocardiogram showed no significant change from the previous echocardiogram and is essentially normal except for the bicuspid valve."

I'm not sure how to think about it. I'm obviously happy things aren't going bad now, but apprehensive of course of the future. This is the glass is half empty mentality I need to break.

I wrote back and let him know
1.) I would like a copy of the echo numbers
2.) I would like to meet with an actual cardiologist in person to discuss this
3.) I would like to set up an appointment with a psychologist or therapist to work out some of my anxiety and obsession issues

I had considered surgery immediately to be the worst thing of course. However, right now, my parents are still alive and my spread out extended family are healthy. I have friends that are great around me. If I never end up getting married or having kids, right now the support network is there to help me through it and the recovery. I can't say what the status will be decades from now. The benefit of course being who knows what the landscape of treatment will be in decades. I realize of course that things could change with my valve in a matter of years.

When I meet with the cardiologist, I'm going to talk about everything. What their experience has been with BAV's, what treatments they would recommend, whether i can do it at kaiser or can I choose to do it somewhere else like Cleveland Clinic, what possibilities there could be for BAV's in the future, is there diet or lifestyle changes I can make right now to improve how long my current valve will last. I'm hoping they know what they are talking about. When I did the echo two days ago, I mentioned having anxiety about BAV, and the technician said "Lots of people with BAV never end up needing treatment." WTF? 20% doesn't really sound like "lots" and I'm wondering if this is a message that Kaiser is adopting as my GP said something similar.

I will start with a psychologist and see how it goes from there. I am reluctant to take any meds right now that affect my brain and I have had experiences with meds creating long lasting neurological effects beyond what they should. There is a longer story there to tell sometime. But the point being, I'd like to go without meds unless absolutely necessary, and I have been on SSRI's before without any issues.

I would like to be more optimistic. I hear what all of you are saying and I'm trying. Thanks for ongoing support and I look forward to hearing from anyone with thoughts as it helps me get through the day.

 

[Zoltania]

I live alone and remember the feeling well of having too much time to think about things and obsess. What really helped was any activity that involved interacting with people and being busy. I went on a short trip with some family members and was amazed at how little I worried when I had new and positive experiences to fill my mind with.

I also remember worrying before surgery about who would take care of me, since I had no spouse or children. But my boyfriend, brother, and sister (who all lived from 400 to 3000 miles away but came to stay with me for varying amounts of time) and my friends came through for me. I was surprised at how many people were willing and able to help, even people I had previously thought of as just work acquaintances.

As for the therapy, that sounds like a great idea. I've read a lot about cognitive-behavioral therapy, and it seems to be an excellent resource, so you can probably get a lot of help even without medications.

 

[pellicle]

Hi

firstly I think Zoltania has great points, so I won't bother repating them so much as saying "yes that"

... This means pretty much I've been allowed to just sit around and stew about my obsessions.

they aren't good friends then, or you've been slapping them down when they say thing of wisdom or support to you...

Been pondering endlessly about heart surgery, the nature of our existence, aging, life/death, afterlife, religion. I'm mentally exhausted.

Man, wait till someone really really close to you dies ... of cancer.

Ok, let me have a go at a few of those:
"nature of existence" ... its unknowable. I have something in my house, tell me what it is ... you can't know right? So existence is and you can make choices, be happy or be dreary ... the nature of existence is "YOU GET TO CHOOSE"

aging: we all do it, if we're not killed or die earlier ... its a journey of change. You accept the changes and be happy with that you are still living or you reject the changes and you're miserable. you get to choose

after life: I've got a blog post on the possiblities as I conjecture
http://cjeastwd.blogspot.com/2013/06/atheism-does-not-mean-there-is-no.html

but its unknowable ... instead I work on my shed , house insulation and solar floor heating projects, and work on my bike.

religion: its a business, the Holy Roman Empire was formed after it met (like in that Life Game above) the christians and it seemed a much better way to make money than taxes ... look at the Vatican now ... guess what the biggest business in the USA is?

https://www.theguardian.com/world/2...n-worth-1-trillion-study-economy-apple-google

To me mostly its a crutch for those who can't / don't want to think.

I would suggest you look at the earlier Emperors of Rome (pre Christianity) for the thoughts of the Stoics. Marcus Aurelius is fantastic.
Stoicism does not attempt to answer the questions of "life after death" or "god" because it (like science) declares that "unknowable"). Instead it goes into how to address living and being alive ... let me quote from Marcus

Marcus Aurelius quote

Be like a rocky promontory against which the restless surf continuously pounds; it stands fast while the churning sea is lulled to sleep at its feet.
I hear you say: "How unlucky that this should happen to me!"
Not at all!
Say instead: "How lucky I am that I am not broken by what has happened and am not afraid of what is about to happen. The same blow might have struck any one, but not many would have absorbed it without capitulation and complaint."

I strongly suggest you start looking at that sort of literature rather than jet-packing down the rabbit hole of "what iffs" in an area which is difficult and vexing to get data on.

While the internet is amazing, it can definitely help fuel an OCD person's obsessions as there is endless information.

its a delusion ... information is not validated there nor is there much veracity.

A good read for you:
https://cosmosmagazine.com/technology/checking-the-source-how-to-read-a-scientific-paper

Checking and reading becomes a kind of compulsion to make the obsessions temporarily disappear.

but the anxiety stays ... start cycling (bicycle) or working on an actual project with your hands. Far more satisfying
a good book to read.

I would like to be more optimistic.

you get to choose

 

[pellicle]

btw, that good book to read is a link ... it didn't become obvious in my post ... its by Matthew B Crawford ... its a good read on how to feel self fulfillment from "learning how to do and doing stuff"

 

[nate99]

Nevermind everyone, I got the specific numbers from my last two echos. I think they weren't thinking about aneurysm. My ascending aorta has grown a lot in the last two years. I'm not sure why the cardiologist looking at it wasn't concerned, but I'm requesting to follow up about it. Pretty concerned but also grateful because without this site I probably wouldn't have had any understanding of ascending aorta size and aneurysm. I'm requesting a follow up discussion with the GP and a cardiologist. Right now, i'm just sort of stunned

 

[pellicle]

Hi

...My ascending aorta has grown a lot in the last two years. I'm not sure why the cardiologist looking at it wasn't concerned, but I'm requesting to follow up about it.

just posted this here about 4 weeks ago:

According to the Australian and New Zealand Vascular Surgeons:
http://www.anzsvs.org.au/patient-information/aortic-aneurysm/

In healthy people the aorta (the main blood vessel that becomes swollen) is usually about 2.0-2.5 cms (20-25mm) in diameter although this can vary with age and whether you are a man or a woman. We know from two large studies in the USA and UK (Lederle FA et al, 2002) that aneurysms less than 5.5 cms (55mm) across can be safely watched as long as they are monitored on a regular basis. For aneurysms less than 4.4 cms across or less, a yearly ultrasound scan is sufficient to monitor aneurysm growth. For aneurysms between 4.5 and 4.9 cms across, a scan every 6 months is advised. An aneurysm greater than 5.0 cms across requires scans every 3 months although there is some variation in recommendations.

When an aneurysm reaches 5.5 cms most surgeons would consider offering surgical intervention.

mine was 5.6 IIRC (but I'm not entirely sure) and at diagnosis they said it needed to be addressed as soon as possible. I asked "so do I get to go home tonight". I did

Just so you have numbers to deal with.

Best Wishes

 

[carolinemc]

Nate, so happy that you are taking control of your health. Being proactive is very important. It will help in your anxiety, fears, and being in control. So proud of you. And there will be times when doctors will want to be in control. Never be afraid to ask questions, if the doctor brushes you off, say that you will see another doctor. For they never want that to happen. So good luck, ask many question for your peace of mind, keep being proactive. You will be okay. Hugs for today.