What were the signs that lead you to OHS?

[pellicle]

... I have to let go of yesterdays going forward as the only person that gets upset is ME.

exactly. You can not change what was, only adapt to what is. Myself I only study what was to benefit my choices for what will be. (well and to kick myself in the arse for stuff too ... as somehow I beat myself up about bad choices often enough)

 

[pellicle]

Haemoglobin of 6! But why? I didn't know valve problems could cause that.

I had heard of that with the older generation mechanicals ... but as SBS used to say, the world is an amazing place.

 

[Trinalovescats]

It's always when I tell people outside this forum about having a mechanical,they look at me like I have two heads.

anyone else get reactions like that?

 

[jwinter]

Thank you Paleowoman and I will read her posts. I have done what I can and thought this through over and over. At Mayo I had a full liver work including testing for transplant (meld score is very low) have been listed in the registry for transplant and denied at this time. Liver and heart transplant surgeons feel the mechanical will be alright and will be on deck for my surgery . If my liver crashes when put on bypass or during surgery I will immediately move to top of list to get one.
I have dotted all the i's and crossed all the t's as far as I know. I do worry some though....

 

[FredW]

No Title

Heart mummer detected in 2007, Aortic stenosis diagnosis soon afterwards. Monitoring until July 2016 when the EKG results during a stress test in the cardiologists' office gave the doctor grave concern. He said I could not go home, but rather had to go to the hospital and have surgery NOW!

 

[Protimenow]

Back to the original topic of this post - I assume that you meant signs that led me to OHS. The first time that I was told that I had a murmur was when I was an undergrad at UCLA, being seen by the Student Health Service. One of the young doctors heard a mumur. Others listened, and I was told that my aortic blood flow was not as good as it should be, and that I would have to have valve replacement when I was '45.' This could have probably been diagnosed a decade or so earlier - I remember my first day in Junior High School (some places call it Middle School). The physical education teacher had all the students run around the yard. I passed out for about 1/2 second, falling into the kid in front of me, and recovering quickly enough that nobody noticed. Maybe I was just out of shape - and maybe my heart couldn't keep up.
Without realizing, I probably just slowed down a bit, so that it didn't happen again. If I HAD gone down for more than a few seconds, perhaps I'd have gotten a better medical workup and the murmur would have been detected when I was 11 years old.

I lived with the slow onset of symptoms from my bicuspid valve for about 20 more years. I found that when I exerted too much, my lower legs would tingle, as if someone was spraying them with cold water. I had increasing difficulty doing physical activity - I went from climbing steps two or three at a time to climbing one or two at a time. I didn't have as much endurance as before. My overall color got more pasty than it had been in the past.

When I was 40 years old, I finally asked my doctor how sick I had to be before getting the surgery.

I wasn't in terrible shape before getting my OHS. I'd done a little damage to my heart just because the blood pooled in my aorta more than it would have if there wasn't reflux.

For some of us who haven't been diagnosed, it's probably pretty difficult to realize that you've got much of a problem until it IS a problem. You figure that any decline in energy or endurance is a normal part of aging. You assume that all people go through what you're going through. Having an attentive physician who can actually hear a murmur (if you have one), and give you the proper referrals can certainly be valuable.

Anyway -- that's my history of the signs that led me to OHS.

 

[Paleowoman]

At Mayo I had a full liver work including testing for transplant (meld score is very low) have been listed in the registry for transplant and denied at this time. Liver and heart transplant surgeons feel the mechanical will be alright and will be on deck for my surgery . If my liver crashes when put on bypass or during surgery I will immediately move to top of list to get one.
I have dotted all the i's and crossed all the t's as far as I know. I do worry some though....

Sounds like a different issue to the other forum member if your liver is involved, and that your medical team are on the ball - it's onlly natural to worry though.

 

[Agian]

Agian, They are not really sure yet. There is a condition that the valve somehow "munches" the red blood cells causing this to happen but the test was negative for that. I have other issues that all came about after my first valve but it appears to all go round and round between my heart, liver, and the abdominal aorta. I was hoping to get answers to this at Mayo Clinic as I had full cardio and liver work ups done. It has been trying the last four years, being thrown into open heart surgery ( I even told them, No it just can't be) and then starting two months later I develop esophageal varices, have two vomiting episodes that landed me in hospital getting the varices banded, then they biopsy my liver (all clear) and in between I have been transfused 3 times. Where IS the blood going. No one knows.
All I know for sure is I hope getting this valve helps as one cardio surgeon said my tissue valve was too small also. Could that have caused it all? I have to let go of yesterdays going forward as the only person that gets upset is ME.

You take care. We're here if you're feeling anxious.

 

[epstns]

For some of us who haven't been diagnosed, it's probably pretty difficult to realize that you've got much of a problem until it IS a problem. You figure that any decline in energy or endurance is a normal part of aging. You assume that all people go through what you're going through. Having an attentive physician who can actually hear a murmur (if you have one), and give you the proper referrals can certainly be valuable.

That's what my (former) internist tried to tell me. When I complained of declining exercise tolerance at age 52, she said "You're getting older. Get used to it." I didn't buy that, so I sought a referral to an endocrinologist to test thyroid, hormone balance, etc. When he did an initial physical exam, he asked me "How long have you had the murmur?" The rest is history, and leads right up to now.

 

[Superman]

I was blessed to be born into the waiting room. I don't recall as a child hearing as much about my BAV as I did about my Aortic Stenosis. I remember being told that my valve didn't open all the way and it didn't close all the way.

Had a heart cath at 4 years old to see if surgery would be needed. Decided they might be able to wait till I was 12. We moved when I was 5, found a new cardiologist. Saw him every six months or so. In addition to annual echo's, I wore a monitor for a couple days when I was 13 and had a couple more heart cath's at 12, 15, and 17 (I think?). No athletics and no gym. Ended up being able to hold off surgery till just before I turned 18.

In retrospect, I wish they would've replaced or repaired it earlier and gave me more freedom - but since I can't go back there, I just move forward and try to stay healthy.

 

[Trinalovescats]

They found a murmur in 2014,but nothing else happened like that.It wasn't until November 15,when I couldn't keep with my parents while walking.I then went to the doctor,told her my symptoms and she diagnosed me with asthma.

Oh ok..but just to be sure nothing was wrong they did a few tests..saw "something" but said I will just be monitored.

In the meantime,my gums/teeth were bleeding.I was coughing so much..this continued til April until I almost passed out while driving home.Thankfully,I made it home to call 911 ...they did some more tests and that's when they said i had Mitral Valve Stenosis and need OHS.

 

[Trinalovescats]

They noticed I had a murmur back in 2014,but didn't do anything.Then in November 2015,I told them I was out of breathe a lot..so I was diagnosed with Asthma.Then I couldn't walk anymore leading up to being hospitalized in April.

 

[Protimenow]

Don't you love generalists and specialists? Some seem to operate with blinders on, diagnosing before examining, and looking for signs to confirm their hunches.

When I was an undergrad, I went to student health for what were mostly minor things. Depending on which specialist (or student learning a specialty), the diagnosis was based on whatever they were learning. An allergist thought I had allergies. A family practice student made some general diagnoses. A cardiologist looked for a cardiac problem (this was probably AFTER a med student heard a murmur.) I was even referred to a psychiatrist for symptoms that the GP couldn't explain. They all seemed to approach medicine through their own set of blinders. I was left wondering what kind of diagnosis I would get if I had seen a gynecologist (I'm male).

This 'filter' or 'blinders' phenomenon may be what led your doctor to diagnose asthma. It was quicker and easier to take symptoms and make a snap diagnosis, rather than seeking out a real answer.

Fortunately (probably), medicine IS getting better. Tools like IBM's Watson are being fine tuned to actually take signs and make decisions (or suggestions). Monitoring is continuing to improve - heart rate monitors are common, I wouldn't be surprised to see EKG-like devices that may be able to detect more than just heartbeats. There's work on wearables and ingestables for medical diagnosis. There may even be a time, within the next five or ten years (really) when more accurate diagnostic devices can 'assist' a physician or nurse practitioner (or whatever they're called around the world) to make accurate diagnoses. (I'm researching the biomedical changes that are coming soon and know a little about this stuff).

It would be good if, a few years from now, the erroneous diagnosis of asthma in people with cardiac issues just won't be made.

 

[pellicle]

Don't you love generalists and specialists? Some seem to operate with blinders on, diagnosing before examining, and looking for signs to confirm their hunches.
.... Depending on which specialist (or student learning a specialty), the diagnosis was based on whatever they were learning. An allergist thought I had allergies. A family practice student made some general
... Fortunately (probably), medicine IS getting better. Tools like IBM's Watson are being fine tuned

exactly! I think it will make a huge step in the right direction!

if all you know how to use is a hammer every problem looks like a variant of a nail...

I think many doctors make great practitioners, but lousy diagnosticians

 

[jwinter]

The reason they call it "practice" (sorry off topic again)

 

[pellicle]

The reason they call it "practice" (sorry off topic again)

there is an old saying:

theory is the explanation of how something works
practice is when you get something to work

often theory and practice meet: we can't get it to work and we can't explain why

 

[Paleowoman]

Don't you love generalists and specialists? Some seem to operate with blinders on, diagnosing before examining, and looking for signs to confirm their hunches.

In the GP online magazine Pulse I once found a wonderful piece by a GP who was mine at the time (unfortunately he’s left our practice now). He was writing about general practice as opposed to specialist practice and had found an hilarious quote from comedian Kenneth Williams (who played a doctor in the Carry On films) on YouTube:

"In the old days you were better off because now they’re all specialists. Everyone’s getting better and better at less and less… Eventually someone’s going to be superb… at nothing."

My GP continued from this: "We have to accept that effective general practice is never going to be as sexy as brain surgery or angioplasty. But it is vital to any effective, economical, and equitable health system. The technology and the honing of specialist knowledge are valuable, of course. But the best (and cheapest) medicine is the kind that lets you sit with your patient and find out what is really hurting or troubling them, before the expensive gadgets and the micro-specialisaion come into play. If they need to at all. Williams knew it years ago, but the value of generalism has been forgotten; we can only hope it is re-learnt, and fast, before things have gone too far to be retrieved.”"

Here’s a link to that hilarious medical quote by Kenneth Williams on YouTube, well worth watching him: https://www.youtube.com/watch?v=CdDt...ature=youtu.be

 

[carolinemc]

Mine was that the problems started at three months after birth. Then the years passed till I reached 8 years of age and my murmur was bad. I waas tired all the time, no energy to play with the other kids and was breathless at times. They did the first bypass with a new way for doing childrens surgery and scraped the murmur, but not all of it. Then years passed, at a doctor visit with a good doctor heard the murmur loud and bad. He suggestest to get a echo, and the sound of the murmur made my lower jaw drop to the floor. And had to replace my aortic valve with a St. Judes leaflet. I was tired and losing sleep. Was glad when the surgery was done and started feeling better. So i have had problems since birth. But it never interfered with having a life.

 

[Protimenow]

A while ago, I noted that tools like IBM's Watson and better medical technologies should make medical care much better than it is today.

And it's a good time for this to be happening. I took my wife to a specialist for results of an exam that she had. The specialist gave her the results (nothing negative, thankfully) and my wife asked about a different condition. This specialist said something to the effect that although MDs go through the same basic training, there are things that other doctors don't know about his specialty, and things that he has no idea of for other specialties. This may seem obvious, but what he seemed to suggest is that the distance between one specialty from another - and all of them from just primary care physicians is so large that we almost NEED a cafeteria approach, with each system being addressed by a different specialty. Hyperspecialization is scary and costly.

But the new tools, new diagnostic technologies, better data sharing (with privacy still protected), and a more holistic approach to medical care may help to reduce costs, improve diagnostic accuracy, and improve care. (I interviewed a research director at a major University's school of medicine for an article that I wrote, and the integration of computing technologies, artificial intelligence, sensors, etc. have the potential to change the entire model of health care and health management). As long as privacy is guaranteed, and big brother doesn't get into our health records, there's a chance that our medical systems will REALLY work for us.