How to Advocate

Ive been there

by Pacer2019 - 2019-11-25 18:44:08

After a heart bypass at 44 I was terrified to do anything .... I lived almost in fear and was tiptoeing through life. one year i went to the ER 3 times in just a couple of months - comvinced I was having a heart episode .....maybe you know the drill ...Blood test then wait 2-3 hours for another blood test to check enzymes. Each time they sent me home saying I was fine.  

On the third trip the doctor said "wjat you fear happening is going to happen if you dont adjust hwo you are looking at things and your lifestyle" - he said he was doing a heart cath and showing me I was OK THEN I needed to decide - get out and live or sit and wait.

That hit me really hard ....I now say "Every man who ever lived in fear of disaster was always right"

FEar is difficilut to deal with and is also a natural emotion that sometimes saves us but can also destroy us.    Thos efeelings can always be diagnosed as a medical condition like Anxiety for example. Then they can come up with a medical remedy to block those feelings  - valium, lorazapam, xanax, and others are very effective.  It doesnt make us unfearful it just blocks those feelings ..... of cousre it doesnt stop there and blocks other possibly positive feelings as well then before long I find the medication isnt needed for the illness but to avoid how it feels to withdraw from the cure if once decides to stop.

for years human feelings like fear were dealt with as a spiritual matter where people sought wise council or placed their faith in a high being ....then that transitioned into non spiritual "pop pschyology" ..........from there to today?  Its become "pharma-pschyology" - maybe even "recreational marijuana" and self medication is now in play.

I have been through it all and speak not in theory.

My advice is first get physically evaluated -  sounds like you have bene some at least.

Determine what you have control over and focus there -  maybe if the medical experts say you are physically Ok the next step is to say - OK I have to deal with what Ive got- if it hurts when you stop exercising ...dont stop? joking of course.  Maybe ly down in the yoga studio and relax..... maybe join a yoga class and learn methods to relax.

Exercise upo until yoga class starts ?

I know you arenmt the kind of person that wants to live on nitra stat or even valium - you expercise ...you want to be healthy and are dedicated to trying to be - hats off!

I have learned from living with heart disease for almost 13 years that yesy there are risk factors we need to cntrol : no smoking, exercise, nutrition, take some medications like asprin or a statin drug - I take what I call the heart patient cocktail - asprin, statin, beta blocker and fish oil.

BUT I have also learned there is a huge emotional risk factor that maifests itself as anxiety or other things that may be the biggest of them all - 

Im still pretty obsessive about heart symptoms - anything in my chest - my heart rate- m,y blood pressure - cna i breath deeply - but I have work hard on the emotional part as well and learned to trust knowing Im doing all I have control over - in my particular case I have found comfort in knowing if I die trying there is indeed an eternity that awaits ...no heart diease no suffering - but that me.

My point is certainly do what youy are doing with the physical body but do not neglect the pwoierfil effcets of the mind as well.  So powerful it can get us to a place of peace but..it can also ruin us.

Thats my pespective - hope its not to blunt but your post caught my eye as I can certainly relate in alot of ways. I found my answer ...I hope you find yours as well.

OK, The ER says you're fine

by AgentX86 - 2019-11-25 21:11:25

If the ER says you're good to go, it doesn't mean there isn't something physically wrong.   It just means that, in their opinion, there is any immediate danger to your life.  It's called an "emergency room" for a reason.

Emergency rooms are terrible at diagnosing what's really wrong with us.  The doctors, even the ER cardiologists, are specialists in catastrophic injuries/diseases.  Most of these issues are readily apparent and treatment is usually pretty straight forward, at least until you're stabilized.  Then they haven't a clue what to do.  Never use an ER as your primary doctor or even worse, as a specialist.

You need to consult a cardiologist, perhaps an interventional cardiologist to figure out what's going on.  I don't buy the panic attack explanation, since this probem is linked to exercise.  Are they really saying that you have a panic attack because you exert yourself?  A cardiologist will probably want to do a stress test to actually see one of these episodes and watch your heart as it happens.

When you first talk to this cardiologst, be up front with him and say that the ER is telling you that it's panic attacks but you're not buying that explanation because...  You don't want to hide anything (and have them find out later).  You want answers and that's why you're seeing him.

You want a good cardiologist (the best, if you can find him) but it can be difficult to find the best.  If you have a good primary care doctor, it's a good place to start (if you don't, fire him and find a better one).  A good primary care doctor will know who's the best.  You can even ask him who he'd send his daughter/wife/mother (depending on his age) to.

I had an excellent primary care doctor who referred me to my (outstanding) cardiologist (who referred me to my EP and vascular doctor) and rhumatologist. Umfortunately, Obamacare forced him out of his practice and he then went into concierge medicine.  Since I have an employer based health plan, this would have been a significant additional out-of-pocket expense ($3000/yr for the two of us). I haven't found another I'm really happy with, so really use my cardiologist as a primary.  It's not the right thing to do but I see him every three months, or more, anyway.  He prescribes most of my drugs (EP and rhumatologist add their piece) so I've gotten away without a primary for a couple of years (I hated my last one - doodled all the time I was talking with him).

Another thought ..

by Pacer2019 - 2019-11-27 17:44:08

What’s your exercise routine like ? What kind of things so you do ? 

Advocating 101

by Gotrhythm - 2019-11-28 17:42:39

I know a lot about advocating for myself. I've had to learn. I understand your frustration and your feeling that you're up against an emotional Catch 22.

Here's the thing: you will never "prove" that something is wrong. Never, never, never. The more you try, the more hysterical and irrational you look. That's the Catch. 

What to do? Learn to translate medicaleze. "Your pain is caused by stress" is doctor-talk meaning they don't know what the physical cause is.

For me, this was the hardest. I kept thinking if I would only say the right thing they would put it all together and say "AH HA! I've figured it out." I was wrong. The harder I tried, the less reasonable I looked. 

Recognize that the ER is not the place you go to get diagnosed. ER docs' primary job is to keep you from dying. If their tests show you aren't dying and they don't have to do anything to keep you from dying, they have done their job. What rare condition you might have that could be producing your symptoms simply isn't their purview.

Accept "panic attack" as a reassurance. What the doctor is saying is we have done our tests and we don't see anything that you are likely to die of soon.

That's actually good news. It means you have time to look around and figure out what specialist you need to go to who hopefully will know what's going on with you and how to treat it. Several people mentioned cariologists and EPs. That's a start. Since you have VVS, you might want to look for someone who specializes in Autonomic Nervous System disorders.

Finally--and this was the hardest one for me--recognize that you might have something that is rare and outside the experience of any but the very top specialist in their field. I had a problem that fewer than 1% of people with pacemakers ever encounter. In hindsight it's not surprising that a regular cardiologist in private practise didn't know how to treat me. And called it "panic attacks." (Which, as you and I know, can be translated as, "I don't know.")

You might need a specialist's specialist, which might mean going to a major medical center even if you have to travel.

If someone tries to give you the panic diagnosis, here's how you talk about it. When they say "stress/panic," you say, calmly, "Hmm. I do have stress--(smile and shrug) who doesn't? But I'm wondering, if it's stress and something else. Or something that's there all the time, but stress makes it worse**. Stress is one possiblity. But is there something else it could be?"

Asking the quesion in this way avoids making anybody wrong or putting them on the defensive.  And it makes it obvious that you are both reasonable and rational. But, as stated above, don't bother with ER docs. Just thank them for reassuring you that you're not dying right now and get out of there. (Telling them you are 'reassured' actually makes them less likelly to dismiss you as a nutcase.)

**just so you know: most heart symptoms will be worse/ more obvious under stress. That's why they do stress tests! 

Hope this helps.