It's the big one, Elizabeth, I'm coming to join you! (LONG)

Since last spring, I’ve had problems taking deep breaths, and I get winded very easily. I went to see the nurse practitioner twice this summer (that’s probably my first mistake, I should have seen my primary care physician, but I’m scared of him, which is stupid, but I’m just the shy and nervous type and he’s tall and intimidating, see, I’m stupid), and she could find nothing wrong. So we chalked it up to the muscular dystrophy weakening my trunk muscles and making it harder to breathe.

Of course, I can’t live like this, so Tuesday I went up to the MDA clinic at OHSU to see what help they can offer. The doctor there told me I’d better visit the pulmonary lab and also have an EKG. She told me to go to the cardiac lab right away for the EKG and bring the results right back to her. So I did. According to the EKG, I’ve had an “inferior infarc.” The MDA doctor gave me a copy of the print out and a prescription to see a cardiologist asap. I asked her if I should see my regular MD to get a referral and she said yes. This was probably mistake number two.

Wednesday morning, 9:00 AM sharp, I call from work and leave a message with my doctor’s referral desk saying I’ve just been up to OHSU, I have an abnormal EKG, and they want me to see a cardiologist. Do I need to come in to get a referral or can they just give me one over the phone? Then I sit by the phone and wait for an answer (and I work, of course).

10:30 AM I call back and leave another message. I reiterate that this is urgent and I’d like a call back.

2:00 PM I call back and ask the receptionist if I can speak to a live body. The lady at the referral desk tells me she’ll put a note on my file and give it to the doctor. She says I will not have to come in to get the referral.

6:00 PM I get home from work and find a message on my answering machine saying I’ll need to come in after all. I call back and ask to make an appointment with my primary care physician (even though he scares me). I’m told that Wednesday was his last day in the office until Oct. 11. So I make an appointment with the nurse practioner. She is out on Thursday, so I have to make one for Friday. I am out of sick leave, so I make the appointment for the evening after work.

Thursday I sit and stew all day.

Friday I visit the nurse practioner. She refuses to believe I’ve had a heart attack. She sends me to their lab for another EKG. Unfortunately, the EKG machine decides not to work. The technician gets the nurse practioner and together they push me all over the table, they stick and restick the electrodes so many times that they lose their stickum and need to be taped down, and they generally torture me for about a half an hour until they give up. The nurse tells me it’s too late in the evening to contact a cardiologist anyway, and says I’ll have to come back Monday.

Saturday I get a notice in the mail from the Salem cardiology clinic saying I was referred to them by my PCP.

What the hell?

What was that phone message Wednesday night all about? Why did I have to be jerked around (literally) Friday by the nurse the practioner, wasting an hour of my life and a $10.00 copay? Why didn’t it occur to the nurse practioner that I may need more extensive testing during my prior visits?? Why doesn’t the referral desk lady check her messages and return calls in a timely manner? I swear to God, if I ran my desk like this, I’d get a severe talking to from my supervisor. And why didn’t these people (doctor, referral desk lady, nurse practioner) talk to each other and get on the same page? How many freaking times did I call Wednesday? Wasn’t any of this recorded in my file? I work in freaking workers’ comp, my phone messages aren’t usually a matter of life and death (not at the stage I work at), but I still respond quickly and let my supervisor know if something is urgent or unusual. I mean, this is my HEART! You know, the thing that, if it stops working, will KILL me?

Geezus, I get all worked up just thinking about it. These people are going to be the death of me.

It is my beleif that doctors offices act like this so they can get rid of the rif-raf. They figure that if it is really important thn the person will call again. I hat e dealing with doctors. I am not scared of them, but just getting ahold of them is such a pain in the ass. I really feel for you.

Gr8Kat, I hope you are documenting this. By documenting I mean - writing down each and every incident as it occurs, each phone call you have to make, each inappropriate response, lost work time, everything. You can use this information - a well-documented history of events - to ensure that you get proper care; if you don’t know how, talk to a health care advocate - you can do this by phone - or even a lawyer.

You have a serious medical condition. This kind of treatment could threaten your life. Your doctor is not managing your care appropriately; he is also not managing his practice appropriately. This is a real problem, and it needs to be fixed - and now is the time to do it. You don’t want to be relying on these nimrods during your next medical emergency, do you?

(Oh, and btw - why do you keep this primary care provider? You are afraid of him! It doesn’t matter why he makes you uncomfortable - the fact that you’re uncomfortable with your doctor will certainly, as demonstrated in this case, interfere with your care, particularly given that you have a medical condition that does require lots of patient-doctor interaction. You can change physicians. Ask the people at the MDA center to recommend a really good one, one that knows MD and that’s on your plan, preferably a woman.)

If you’re intimidated by your doctor, and you can’t get another one, then take someone brave with you, give him/her a list of questions to ask, and sit there and let your Brave Friend deal with the doc.

My mother had a host of relatively minor weirdo medical problems, which the doctor didn’t seem able to help her with. So finally I got her to make an appointment, I gathered up my Merck Manual, drove over there for the day, took my mother to the doctor, sat there and talked to the doc while Mom listened, and got ALL her questions answered.

Try it. :wink:

And–what DPS said, about documenting everything. Take notes. Who said what, when, and to whom. If not for actual litigious purposes, then because it just makes it easier to deal with all these Little People, if you can say authoritatively, “Yes, I spoke to Nurse Ratchet on 9/29 and she said no EKG was required…”

And if you do it right, eventually you will come to a Golden Moment, in which you will have the marvelous, never-to-be-forgotten experience of consulting your notes and then telling Nurse Ratchet, to her face, “Um, on 9/29 you were the one who told me that no EKG was required…” And then you can show her where it’s written right there, being careful not to gloat too openly, because you don’t want to alienate her.

I note with abysmal disatisfaction the the inscrutable nature of the way things “get done” with doctor’s offices and hospitals.
I am currently in my very first serious health problem that requires me to deal with these people, and I’ve been passed off for months. Even when they are dealing with me their methods of actually accomplishing anything are so construed it really makes me wonder how any organization can function that way. Any of you ever read “Catch-22”? I swear the modern medical community uses that book as a model for business manegement.

Does posting on a message board count as documenting?

I guess I keep this PCP just because I used to see another doctor in his office who up and moved to Canada last year. Instead of trying to find a whole new doctor (the ones I looked into here in town weren’t taking new patients), I just decided to stay with the office and go with the doctor who was taking over my old doctor’s cases. To be fair to him, I only saw him once, and it was a busy day, and he did seem harried, but I’m just a yellow bellied coward.

I do have issues with his staff, though. In the past, I’ve had a hard time getting prescription refills authorized because they tend to leave faxes unnoticed on their machine for a day or 2 until I call and get mad.

Yes, I know, I’m an idiot for staying with these idiots, but it’s a small town and my choices here are limited. If I want to switch doctors, I’ll have to find one in Salem. I’m a pretty good letter writer, though (trust me, I write business-type letters better than I post here). I am seriously considering writing a letter expressing my disappointment.

I went back up OHSU today to have a pulmonary function test done. According to the tests, my lungs are OK, but the muscles that control them are only working at 30% capacity. The technician said he’d give the results to my MDA doc., so I guess I’ll have to wait until I hear from her to find out what, if anything, can be done. In the meantime, my cardiology appt. is 3 weeks from today.

I am holding out hope that the first EKG was wrong. I’m only 28. I know I’m in terrible shape, but this is just ridiculous. A heart attack at my age? I don’t blame the nurse practioner for being skeptical. Hopefully the cardiologist will get this straightened out.

Kat, if you were my mother, my daughter, or my sister, I’d be raising holy hell right now with your doctors.

You had an “inferior infarction”. It’s not quite the same thing as a “heart attack”–that would have been an “acute myocardial infarction”.

“Inferior” in medical terms means: “Beneath, lower; used medically in reference to the undersurface of an organ or indicating a structure below another organ”. (Taber’s Medical Dictionary).

An “infarction” means “formation of an infarct”, and an “infarct” is “an area of tissue in an organ or part which undergoes necrosis following cessation of blood supply. May result from occlusion or stenosis of the supplying artery or more rarely from occlusion of the vein that drains the tissue”.

So part of the underside of your heart muscle had its blood supply cut off, whether because the artery supplying blood was cut off, or because the vein that drains the blood back out of the heart was blocked. And this caused damage to the muscle, which showed up on an EKG. So the tech said, “You had an inferior infarction”. Not an “acute” one, because you would have noticed.

It’s definitely something that needs to be looked into, mainly to find out what’s the problem with the blood supply. For example, it could have been caused by a blood clot, and blood clots can move around. :frowning: Not good.

And people of all ages can have heart disease–it’s not just for Senior Citizens. :wink:

And people with MD can have cardiac problems. “The heart is a muscle, too” is the title of these FAQs that I found.

http://www.mdausa.org/publications/Quest/q62cardiac.html
http://www.mdausa.org/publications/Quest/q63cardiac.html

Sorry to give you more stuff to worry about, babe. :frowning:

No, posting is not the same thing as documenting. Get a spiral notebook or something, write down everything that everybody tells you.

I get a strong sense that these people are brushing you off, possibly because you’re in a wheelchair and they see you as an invalid. Get tough with them. Nobody’s going to look out for you but you, babe. Yellow-bellied cowards end up having to call 911 and be trundled helplessly down to the ER, wondering wha’ hoppen.

Gr8Kat - posting on a message board is not really the same as documenting. Get a diary, write everything down and date it.

As for keeping this doctor - please, I beg of you, find yourself a better doctor or else find a way to get good care from this one. It can be done. Look at it this way: it is inevitable, given that you have MD, that you will have a true medical emergency sooner or later. At that time, prompt and effective action by your PCP may be required to save your life. Do you trust this doctor to take that action? If you do, then now is the time to get used to him - get to know him, let him get to know you. (Don’t just see the nurse practicioner. She sounds like a nitwit.) If you don’t - and, frankly, he runs his practice the way a team of a poodles might run a hotdog stand - then get a new doctor.

In a small town, your options are limited. Still, things can be done. The first thing to do is to talk to the people at OHSU. Explain the problem you’re having - your PCP does not respond (or even get) messages, his office staff is obstructionist, and no one knows what’s going on. The example of the cardio snafu will nicely illustrate that point. Ask them if there’s anything they can suggest. (If there’s a smart and competent member of the office staff there, one that you know, then asking her might be as useful as asking a doctor or a nurse.) If they have suggestions, do what they say.

If they don’t have suggestions, do some research. Figure out which doctor in town would be best for you - remember you may end up going a bit further, but if you can do it, that would be well worth the trade-off in terms of quality of care - and ask to be notified if the doctor does start accepting new patients; explain that your old doctor moved to Canada and you’ve been left in the lurch, medically speaking.

Meanwhile, if you do write a letter, consider: how will you get it to the doctor? Remember that he does not, most likely, open his own mail. Someone else does. Probably one of the very same staff members you’ll be complaining about. So I’d suggest that instead you call your insurance company and find out if they have quality assurance personnel or patient advocates. Talk to one of those people. If you need to, send a letter and follow it up with a phone call.

I realize all this seems like a lot of work. But the sad fact is that this is what we all have to do to get good quality medical care. I don’t like it, and I wish things were different, but they are not.

Suggestion: while you’re trying to decide if you can really stand this doctor or if you need a new one, schedule a physical. (Make sure your insurance will pay for that.) A physical will give you enough time with him, and enough exposure to his interview and practice techniques, to find out if you can build a rapport with him. If you can, then it’s fairly easy to let a doctor know his staff are screwy, provided you tell him to his face. Most docs simply don’t know what happens in the front office, but the good ones still care. When you go in for your appointments, and especially for that physical, bring in a list of every question you need to ask and every topic you want to cover. Then show him the list. Force yourself to check off every item. If you cannot do it, as DDG said, bring someone with you who can make you do it, or who can do it for you. Most of all, make it clear that you Will Not Go Away. Once you become more of a nuisance than doing what you need would be, it is amazing how fast people fall into line.

Again, good luck. I really hope that this current situation comes out well for you - and that you find a way to get the medical care you need. (If I’ve sounded harsh in this post, I didn’t mean to. I’m just trying to emphasize that this is a Serious Problem, and yet a Solvable Problem.)

And something else I realized in the middle of the night: Health care providers are sometimes apt to dismiss people with chronic conditions by saying, “Well, you have to understand, this is a chronic condition, you just have to learn to live with it, and this is just how the course of your disease is going, all we can do is alleviate your symptoms…”

I hear this from the perspective of Crohn’s disease, occasionally, and it always pisses me off, because it’s like they’re writing me off and moving on to the next, more interesting case, the one they can really help.

I understand that there isn’t really a “cure”, but I don’t appreciate being treated like a failed lab experiment. “Hmm, nothing we can do here, who’s next?”

So don’t let 'em do that to you. “Well, you do have muscular dystrophy, you have to expect things like this to happen…”

Fuck that shit.

Thanks for your replies, I’m sorry it has taken me so long to respond, but can’t post from work anymore and in the evenings, after spending 8 hours sitting in front of a computer, I have just felt too tired to do anymore. I appreciate your concern :slight_smile:

My complaint right now isn’t so much with my doctor (in fact, he came through for me getting the referral to the cardiologist), it’s with the staff that didn’t return my messages right away and then told my I had to come in when I didn’t have to, and the nurse practioner who failed to realize that shortness of breath was a symptom that probably required further investigation and refused to accept the EKG I got from OHSU.

The rest is my fault for fooling around with the nurse practioner in the first place instead of seeing a real doctor just because I thought he was a little too brusque one day and chose to be intimidated by it. I’m naturally iatrophobic (learned that one from a trivia calender page) anyway. It’s my problem, not his.

As for my kind of MD, it usually doesn’t affect the heart.

http://www.mdausa.org/disease/fshd.html
http://www.fshsociety.org/fsh/fshd.html

However, I understand that, the more sedintary I become and the harder it gets for me to do anything, more strain is going to be put on my heart.

It usually doesn’t affect the lungs, either, but my trunk muscles are pretty weak and I guess they help squeeze the lungs when you breathe. Involuntary muscles usually aren’t affected, but, since the diaphram is one of those muscles that can go either way, I don’t know what will happen to it. Eyelids can go either way, too, and I can hardly keep them closed. Gee, I never thought of that before. It does affect my eyelids, which have the same kind of voluntary/involuntary thing going on as the diaphram. That’s really, really scary.

This is why I started this thread. Mostly I’m just really scared. I’ve heard that some people with FSH end up using trachs, and I had hoped this was something I could avoid. Now I’m not so sure. I also had no idea I’d be nearly confined to a wheelchair before I was 30. So I’m angry, depressed, and scared and I wanted to vent some of that.

Besides muscular dystrophy, I’ve been gifted with another, unrelated condition, lichen planus. I’m also seeing a doctor at OHSU for that. He recommended I see a counselor at OHSU that specializes in therapy for people with sexual dysfunction. I haven’t made an appointment yet because I’ve had to make so many trips to OHSU as it is, my husband and I have used up almost all of our leave from work on these trips. I don’t know how we can manage that, let making time for another therapist for problems with my disability.

I feel so overwhelmed by everything, I wish I could just quit my job and spend the rest of my life in bed. I feel powerless, frustrated, and unable to juggle it all. I CAN’T find time for a therapist. I don’t have the time. I CAN’T afford to take time off work without pay. I CAN’T do anything by myself. CAN’T CAN’T CAN’T. Everything is just one big CAN’T. And when people push at me and tell me what I should do, I feel like shutting down, because I CAN’T DO IT.

Shutting down sounds like a good idea. I’ve been working on this post for about 2 hours, I’m going to indulge in some solitare of something for a while because I’m TIRED and CAN’T think of what else to say.

Well, I can’t come over there and hug ya 'cause this is the Pit, so I’ll just say–

***FUCK! FUCK! FUCK!

FUCKITY

FUUUUUUUUUUUUUUCK!!***

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[sub]sneaks in a quick hug while Pitizens aren’t looking

{{{{{ gr8kat }}}}} [/sub]

Kat after reading your post, I thought I’d let you know that I think you are a very couragous person. Myself, I’m a big whiner,but when I think of what you have to endure, it makes my piddly arthritis and hip problems seem trivial. I truly hope you get the situation with your doctor resolved.Keep us informed, and don’t hesitate to keep venting your anger here in the pit, I think getting it off your chest is therapeutic and can make you feel a little better.

Tina

Oh Gr8kat, I hate to hear you like this. I hope it’s a temporary funk and not a permanent shut down. Please hang in there and e-mail me if you feel up to talking.

suzette100@yahoo.com

Please be on the lookout for clinical depression signs, which sometimes rears it’s ugly head during these sorts of health changes/disability assessment times. I know I’ve been caught up in the midst of it before I even knew what was happening.

Zette

First, thank you, DDG, for breaking out the appropriate references – when I saw the “interior infarct” stuff and the clinic passing it off as not significant, I was about ready to crawl into the monitor and out Gr8Kat’s in Rambo mode, ready to head for her “health service practitioner.”

Gr8Kat, first: {{{{Gr8Kat}}}}. (Don’t like it, Pitizens? You know what you can do – and you’ll find detailed instructions in other threads! :mad: ) Second, find a responsible medical provider that will take care of your needs. And instruct your current dodos to forward your medical records. If they give you any flak, simply say that you decided to seek competent medical help rather than remaining with them to give your estate opportunity to sue for malpractice – but you’re considering it.

Take Zette seriously, and me. One of the commonest post-infarct symptoms is clinical depression, somatopsychic in origin – I personally think, without adequate proof, that it results from blood transport of metabolites from injured heart muscle following the infarction. In my case, it aggravates a mild case of hypoglycemia and is alleviated by anything introducing blood sugar in a rapid, steady manner: hard candy, chocolate (where alkaloids function to give a mood lift as well), etc. Quite seriously, if you ever get into a “boy, am I feeling down” mood, immediately pick up the phone, get on the Internet, walk to your neighbor’s, send out a carrier pigeon, or whatever, and get in touch with somebody who cares about you and is aware of this situation. I was nearly suicidal six months after my serious heart attack and quadruple bypass – and it didn’t even have the pseudologic of the average suicide, just intense clinical depression from bodily rather than emotional causes.