WWYD - Navigating Health Care w/ severe symptoms

Wow, this is a lot to go through. I’m so sorry it’s taken so long, and you are still not even at the point of being diagnosed and treated. You are in so much pain, and that is just hard to be in day in and day out. I can’t believe they didn’t take blood in the stool more seriously, that’s crazy. 😒

I hope you get some diagnosis And a treatment plan.

Totally off topic, I find your user name unusual, and of course you do not have to reply, but is this your last name ? it is mine
Sorry I missed this. It is my last name-ish, lol. There was a time when usernames often necessitated certain numbers of digits and so this is my first/middle initial and most of my last name ;-)

There are lots of ins and outs of the story, still. Best update is that I have an MRI scheduled but they can't get me in for a really long time so they've encouraged me to call each day. Soonest cardiologist appt is June. This stuff is nuts.
 
From a distance it sounds like you need someone with you at the doctors. Friend or relative. I was going to say someone who is pushy but assertive is the better term.

It sounds like they thought you were exaggerating your symptoms. OR you have a bargain health insurance plan. A plan which is slow to authorize tests.
I do. For instance, my last ER visit, I was brought in due to HBP (of course) and shortness of breath. A cough had made me pass out. I got to the ER but amidst really feeling bad - I didn't think to tell them I've had a partially collapsed lung for 6 months - it just wasn't at the front of my mind and there are a million things going on. So, they're like, "Yeah, you have the flu - that sucks - but why are you here." And all I thought to say was, "I've been really sick, breathing got a lot worse, the blood I'm coughing up has gone from brown to bright red." It was after getting some rest the next morning that it dawned on me that I should've told them that.

So, I've been looking into hiring/finding a patient advocate to help - the number of appts I'm getting calls to setup (but then the fatigue wears me down) is so high but then I drop one or I think I have them all but miss one.

I don't have bad insurance (fortunately - or unfortunately in terms of your theories, which I think makes sense) - state employee with decent coverage. I do think that the unlikelihood of a 40 year old male with heart issues, etc makes people doubt what's going on. That said, I also have a form of muscular dystrophy and even that creates issues with some of the organs involved/symptoms but then it's not super well known so people don't connect it. Recently, I got crap from one clinician for referring to it as a form of muscular dystrophy and not its actual name. Took that feedback and then the next time I went to a dr, I referred to it via its official name and was told, "You're using a pretty specific rare clinical term - have you been searching for things online?" (No, and I have genetic testing confirmation for me, my mother, and my kids). Here's an example of how issues feel dismissed:

I was diagnosed with this form of MD after having some hip problems (which developed because of the MD), during/after HS (my mother had the same ones - so we all sort of got checked out at the same time when she had a hip replacement at age 35). A decade ago, I had a good dr (chair of ortho at Univ of Nebraska Medical) who was like, "Yeah, these are screwed up. You need help." I move (due to work and family). Try to get assistance in this community and the first ortho I went to didn't take a Hx and when I tried to give him the background, told me that my hip problems came from a fall I "must've had in HS and forgot about." Completely disregards me, even when I try to give information (tells me I shouldn't have ever visited more than one dr - ignoring that by age 35/40, it's actually fairly normal to have moved for college or grad school or something). I ended up dropping it - had other stuff to deal with. But then - when this most recent health issue emerged - my CT scans kept showing some hip problems and I'd have ER drs come and ask, "Did you know you have major hip problems?" (Yes, I didn't say anything because I'm here about my chest, etc). But when I inform someone, it gets dismissed. It feels like that is happening here - when I have tried to point out things like my partially collapsed lung, it gets no attention. If I downplay something like that and a clinician "finds" it or mentions it for the "first time", it gets attention.
 
Sorry I missed this. It is my last name-ish, lol. There was a time when usernames often necessitated certain numbers of digits and so this is my first/middle initial and most of my last name ;-)

There are lots of ins and outs of the story, still. Best update is that I have an MRI scheduled but they can't get me in for a really long time so they've encouraged me to call each day. Soonest cardiologist appt is June. This stuff is nuts.

Thanks for answering. I think I sort of get it 😉 I had an old user name, many moons ago lol, and I almost forget it, it was sooo long ago. I think I changed it due to the fact of it being so close to my name, you know ?

I feel for you. So crazy 😒. I hope you get in with a cancellation. It is nuts, absolutely 💯 percent. Sending you lots of gentle hugs and warm thoughts 🥰
 
Thanks for answering. I think I sort of get it 😉 I had an old user name, many moons ago lol, and I almost forget it, it was sooo long ago. I think I changed it due to the fact of it being so close to my name, you know ?

I feel for you. So crazy 😒. I hope you get in with a cancellation. It is nuts, absolutely 💯 percent. Sending you lots of gentle hugs and warm thoughts 🥰
Smart - I think about the name issue, as well. I forget if this board even allows for it! I should look.

And thank you, I appreciate the care. 💗
 



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