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Cowbell To The Head!


Kitsakatsa
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My wonderful Angel doctor sent me to a Cardiologist because I am pretty functional, but every morning and sometimes days on end I feel like just walking across the floor is an extreme sport (break out the protective eye wear!!) and my heart rate is extremely fast and thready. I feel like there is a huge incline, it is nearly impossible to do anything and my heart rate is reflecting that my body is working extremely hard. At these times I am out of breath and fatigue out within minutes. This is concerning because most days I can work 8 hours, then come home and exercise on the Wii. On the bad days, I am back in bed within 10 minutes.

So I land at this doctor's office and he comes in and says I would feel better if I lost weight, waving off with his hand my hour a day exercise despite feeling like crap and that i've really only been able to eat the BRAT diet for 6 years. Saying that exercise never results in weight loss (what?) and that I need to eat next to nothing (nice). I wonder if he noticed that I've been admitted for malnutrition- probably not.

Then the jerk says that Pots is a great big huge problem, no one knows anything about it and that there probably is something wrong with my heart, but they will never fix it because Pots is a great big huge problem. He said that I need to quit my job, stay home and not ask doctors to fix me because I am stupid enough to hold a job and have Pots. Then he said that no one is doing research any more because Pots patients are not worth bothering with and they can't be helped. Then he said again if i have a problem with my heart, it doesn't really matter. He talked to me like I was 99 years old and terminal!!

He said they'll put a heart monitor on me for two weeks if that's what my doctor wants and then said to follow up with him in 3 weeks. Like Heck! I wasted $30 on that appt, I'm not going to do it again!!!

I know I shouldn't let these things bother me. I know I should be able to brush them off by now, but I was glazed over for the entire day following that. I emailed my angel doctor and told him what happened and said that perhaps the cruelest thing anyone can do to a Pots patient is to take away their hope for a better life. He called the Cardiologist a dork and said to follow up with him instead. I get to see him Tuesday. I thank the heavens every day that I have such a wonderful doctor. His email may me snap out of it.

But I am mad, and mad at myself because the thought keeps running through my mind about the research. I know we are not terminal. I know there are doctors that understand quite a lot about Pots and have the world up their sleeve (my doctor included).

But I'm haunted by the words of this man. Do you think the research has dropped off? Do you think the medical community is turning away from answers?

Kits

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Kits,

Your note really got me worked up. How dare a doctor say that to you and leave you with no hope for the future! I am amazed at the insensitivity of some people and wonder how they got to be doctors. I think this bothers me so much because once when the regular cardiologist was unavailable, my 15 year old daughter had to see a different cardiologist. He told her there was nothing more they could do for her, that she'd get better when she's in her mid 20's and then come down with it again in her mid 40's! He told us to come back in 6 months. I just couldn't believe that he had said that to her. We are now seeing another cardiologist/electrophysiologist who is trying some new things for my daughter and will continue trying to help and not just dismiss her.

I'm glad that you have a GP who is helpful and understanding.

As far as the research goes, I don't have anything to cite, but I do believe research is still going on. There are doctors out there who care, and I think they learn more even with each additional patient they treat. I'm sure other people can probably point to specific studies currently going on.

Hang in there!

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Sometimes I think people go to medical school to become doctors for Status, and possibly money depending on what their speciality is.

Docs like this can't be in it because he/she actually has the passion for helping their patients.

Note to doctors; Having an "MD" is not a "status" symbol. It means "medical doctor".

Unfortunately in some cases the "MD" stands for, "MOST DANGEROUS",

I'm sorry this "most dangerous" man treated you like this.

HUGS,

Maxine :0)

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Kits,

I have read A LOT of the research articles regarding POTS and its various subgroups and conditions that cause symptoms like POTS. I have never come across anything that said that all treatments were ineffective and that fatality ensues. Remember, fatality is the endpoint for all of us! But fatigue and tachycardia from POTS has not been recorded as the cause...fainting behind the wheel and hitting a tree is far more likely. For some of us it is progressive, for some of us we have recovery, sometimes it is the prequel for something worse like MSA and other times it is brought on by too much Red Bull. "All this" is still very new to the medical research community and we are dealing specifically with a system that is not well understood, the ANS. There is some exciting research going on and slowly the doctors who do KNOW about the ANS are narrowing their possibilities and honing in on targets for treatment. Don't let this turkey get you down. Shut off that echo in your head, the guy with the lowest GPA in medical school is still called "doctor!"

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Snort! MD: Most Dangerous with the lowest GPA.

I love you guys.

I feel particularly bad right now and its just making that appt all the worse. I tell myself that I cannot mourn the appt. I need to quit the pity party and move on. But this weekend I'm particularly sick. I went to Target a few hours ago and thought I would have to go curl up under a rack of clothes. I feel like I am just really overwhelmed with everything and I feel really panicy about the future.

I'm still pretty spun around. I need to snap out of it. I should be a stronger person. Right now, I don't know how to get back there.

Kits

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Wow!! That's awful but parts sounded very familiar!! My last ER visit I heard the cardiologist say several times "there's no cure for it, we can't fix it, so there's nothing we can really do for her" I know there are several doctors out there who are in close competition for worst doctor of the year. I've met several I could nominate. I also have a great internal med doctor who has been more than helpful and he makes up for the rest of them a little bit!! Sorry you're having trouble and hope someone can help! I've struck out here with about 5 different cardiologists who don't even want to attempt to help treat the symptoms. I now drive 3.5 hours to see my doctor. I'm well aware there is no cure but I'm also aware there are numerouse treatments to improve life quality. Hope you find the right one for you!!

Brye

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I have also had bad luck with cardiologists. The one I saw inpatient said, "So you've got this thing, huh?" He sat me up to listen to my heart and I got instantly tachycardic and short of breath. He then said, "Do you want to go home?"

I was stunned! I thought maybe he didn't understand POTS, but when I read the medical records, I saw he understood quite well. He even ordered IV fluids (as much as I would tolerate) and an increase in Florinef. He knew, but he also found POTS patients too refractory to deal with.

I call it the malice of helplessness. The doctors I see, I imagine, are not truly this mean and dismissive to all of their patients...only to the ones they feel they can't help (or FIX.) They will not come humble and apologetic, most of them, so they come aggressive...or dismissive.

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Kits,

I imagine most of us who belong to the DINET family have encountered this type of medical person at one time or another along our journey. I did and, encouraged by my GP and a son, I 'fumed' for only one very short day, then put his ignorance and lack of caring behind me.

I knew there'd be someone else out there who'd be the opposite to him, and there was. So, don't give up. We have to do our best to put this type of doctor out of our mind, because if we don't we only hurt ourselves. The would be doc couldn't care less how he/she inflicts pain and distress on a vulnerable and sick person.

I guess your post has just reminded me of what I went through once because I find myself 'fuming' again, this time at what you've been through.

Take care and keep looking for a kinder more knowledgeable doctor. He/she will be there for you.

Mary P

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I don't blame you for being discouraged based on his words but I think it's good to move past that.

Some doctors just blow things off I guess. I reported to ER promptly when I realized I had chicken pox and was hoping for treatment with an antiviral. Guess what unfortunatly the doctor I got thought I didn't need one said I was half way through it so what, so what-a doctor I saw after said they are trying to kill people what are they doing? He thought it might have made a heck of a difference for me to receive antiviral treatment when I went.

So you can see some of this is opinion and bad opinion at that.

I was also put off when the endocrinologist flatly said-your serum norepinephrine is elevated-let's scan you for a tumor and almost directly sent me out of the office.

I could hardly sleep that night all I could think of was how long do I have?

I didn't know how I would hold up for the four day scan let alone if I had to have surgery to remove a tumor. I didn't exactly feel strong enough for that.

I should let you know I did not have the scan and have not been back to that doctor.

It took me weeks to get over that trauma-and I believe you can too.

If you just focus on how good you feel on your good days, and imagine that you can feel that way tomorrow too, next thing you know one day leads to another.

In the meanwhile you can try to get real help and look forward to that.

I don't think any doctor has the right to be that discouraging.

What is the point?

The mind is a powerful thing and can even heal the body in some cases.

Don't let what that jerk said cloud yours.

You are better than the picture he painted and you know it.

Hang in there!

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Doctors can be real tools at times... and like the rest of you, I have encountered some jewels who are a disgrace to the good doctors that I know. Granted, I would rather see a doctor who knows what's wrong with me and will try to fix it, or at least improve my quality of life even if he has the personality of, say, House than someone who was overfriendly and dumb as a box of rocks... but a healthy balance between the two would be great.

I most particularly don't like GI's, simply because I suffered greatly for 5 long years with gallbladder disease, unknown at that time. I only knew that my stomach hurt like **** and I was puking almost all of the time. They did a CT scan, an ultra sound, scoped me out.... and nothing else. My gallbladder was (looked) normal, there was nothing physically wrong with me. In this time period, I saw at least 3 different GI's, and after the tests, I was told that I needed to cut back on stress and that the cause of my nausea and vomiting was a stress reaction (aka, you're crazy lady.. leave me alone!). This happened over a 3 year period, and for the next 2 years, I wouldn't see a doctor, or go to the hospital, until one night, I literally spent the whole night vomiting (eventually dry heaving) at least every 10 minutes, even after I had taken phenergan. After about 6 hours of this, I had a friend take me to the hospital, where I was given IV morphine and Zofran. I also had pancreatitis, though I was kind of accused of being bulimic at that time (it had been at least 2 years since I was then). After a few hours, I was was released. I drove to my parents house, somehow, about 40 minutes away, and started getting sick again. I drove to my GP, and she had me admitted to the hospital. During my stay, they did the other tests that had been performed already, with the addition of a HIDA scan. Well, whaddya know? My gallbladder isn't working and needs to be removed!! When I heard the news, I was happy, scared, and mostly pissed off. I was so tempted to have the surgical records sent to the GI docs who I tried to convince that my gallbladder wasn't working (yet told me, without thorough testing, that I was crazy).

It was because of that bad experience that I didn't mention any of the other symptoms (the dizziness, fatigue, and everything that's related to POTS) to my GP until, again, they got unmanagable. I am just very glad and thankful this time that it took less than 2 weeks after telling her and being referred to a cardiologist that I have been diagnosed. I really like my cardiologist... he isn't exactly warm and fuzzy, but I can tell he's very caring, and moreover, he's very meticulous and careful, almost to the point of OCD (not that I mind at all) about examining me. He also is familiar with POTS, even though he doesn't claim to be an expert, he mentioned that he knew a few of the top POTS doctors in the country, and that he would consult with them if he should get stuck. He explained POTS to me thoroughly, but didn't talk over my head, nor was he patronizing. Although in his physical exam, he didn't hear the heart murmmer my GP wrote down that she heard, he still sent me to have an echocardiogram and doppler performed to just make sure everything was just fine.

So, see... yes, there are "doctors" out there that aren't deserving of the title, who themselves need to be taught (the word doctor comes from the Latin word for teacher), and there are good and decent and caring doctors out there who, I think, more than make up for the sins of their collegues.

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