Lesson learned ... why don't doctors pay attention?

[amyshields]

I went to a new family physician on Friday for the pluericy diagnosis I received last Monday ... yada, yada, yada. We also talked about my depression and I asked that he give me something. So, he sends me home with sample boxes of Effexor XR. I take the medication Friday, Saturday ... Sunday. Wake up this morning and my heart is racing to beat the band! I looked at the information in the box ... NOT good for a person with HEART DISEASE! Okay, the doctor knows I have heart disease!

I called the pharmacist (good friend) and he advised me to stop taking this medication NOW and call the dr. Still waiting for the doctor to call back after I left a message.

I am getting more and more aggitated that I have to be so "on the ball" whenever I see a doctor! I find myself explaining HCM constantly and having to make sure they don't screw up somehow. I simply want to be able to function like a real person. You know, do the housework, make meals, drive the kids wherever ... be alive! That is what I had surgery for in the first place ... to relieve some symptoms and regain a sense of normalcy.

Sorry ... hope this isn't the wrong place for a vent. How does everyone else handle all the information and stress over doctor visits, medications, etc. What should I be doing differently? (other than checking my obviously LARGE 'tude at the door)

[Lisa Salberg]

Venting is good - and heck we all need to do it once in a while.

VENT AWAY!!!

Lisa

[Reenie]

I say don't check the 'tude at the door. If it helps you get your point across and you aren't being vindictive, go for it. I'm sorry you've put up with so much recently. I hope it all falls into place for you soon.

Reenie

[Cynaburst]

Here is what I do..

(And I have more issues than you, having had a brain tumor removed which made me half deaf and having 2 implantable devices -- an ICD and a VP shunt which is like a drain from my brain to my stomach cavity.)

Humor and matter of factness.

Whenever I see a new doctor, I say something like...you better sit down. You have to hear my history now, and you might need a notepad. I then explain my various diagnoses, and see how they react. If they seem unsure of what something is, I explain it. Not in a condescending way, but the fact is, I have some very unusual issues, and since the medical world is so specialized now, I can't expect one specialist to understand the intricacies of another specialty. I tell them about it until I think they understand. And then, I still ask follow up questions.

In your situation I would have said...ok, are you sure that this medicine is safe for heart patients. You know, I have a tendency toward arrythmia, and I can't take anything that is a stimulant.

Or, another way to handle it is to say I would like to check with my cardiologist before I add any medicines, because I am very sensitive and my heart may react poorly. Can you check with him first?

In any event, I am sorry to say, that you no longer have the ability to assume that the doctor will automatically "know" what is right for you. The patient really must take charge, especially with a condition with HCM which is not so well known. Just being frank, matter of fact, and polite will go a long way.

[ItzKat]

Sorry that you are having issues with your family doctor. I know they are busy and there is a lot for them to remember, but I really think it is up to us to push them to be better.


I am sorry to say, that you no longer have the ability to assume that the doctor will automatically "know" what is right for you.

I can tell you that this case in more that just patients with HCM. My mother does not have HCM but is highly allergic to just about ever medication out there. More often then not the doctors would tell her it was all in her head. So she would try something they recommended and boom, she would break out with some sort of rash or worse. At one point I was standing at the nurses station of the hospital telling the nurses that I didn't care what time of night it was I wanted the doctor on the phone now to get her off the stuff that was making her so sick.

Finally, on her own she started a list of all the medicines that she has had a reaction to in the past and took it with her whereever she went. Anytime she had to see a new doctor, she pulled out this list. It took way longer than it needed to, but finally they are starting to listen. They classified the medicine family types that give her the problems and she uses that as a standard for any new meds.

[LindaG]

You have every right to be angry...vent all you like. It's a good thing you had the common sense to check. Now you know...NEVER ASSUME ANYTHING.
I truly believe that my son's doctor never fully impressed the severity of HCM on him or us. We knew he didn't have any arrhymia, etc. and never thought that this shortness of breath was such a bad sign. The doctor told him to move to a house on one floor...HOW ABOUT TESTS???????????? We trusted and now my son is gone.

So, VENT, CHECK AND DOUBLE CHECK. Ever watch the old series the X-Files??? They used to say "trust no one." How right they were.

Good luck and feel better. I'm sure there are meds for depression that you can take.
Linda G

[shirleymahoney]

Amy

I have taken wellbutrin and Ativan and have had no problems I now take Celexa and it is working

Shirley

[Abbygirl2]

Hi, I hope your feeling better. It can be so frustrating dealing with HCM and all the little extras, like tests and Dr's and emotions...

After I was diagnosed, and my Dr finally believed that it wasn't all in my head, there was a sense of relief. (It came after the shock and fear.)
Finally there was hope that I might eventually feel somewhat normal. It had been 6 very long years.
It didn't take long though for me to realize that the Dr's around me didn't know what to do with me. They couldn't even answer some of my basic questions.

I don't know if it was my frustrations with Dr's or my own curiousity that pushed me to research HCM but I feel safer knowing that atleast 'I' understand (for the most part) what is going on with my heart.

I have accepted the fact that most Dr's I see will not be HCM-smart. Therefore I don't generally deal with anyone other than my cardiologist for HCM related issues. I just don't feel safe taking medical advice from someone who doesn't know about this disease.

It would be like taking driving lessons from my 6yr old.:rolleyes:

My experiences have brought with them a lot of emotions, depression is one of them. I still haven't successfully beat it, but coming here helps tremendously - especially on 'bad HCM days' when I feel isolated from the world.
We will all continue to learn about this often confusing disease, and hopefully our Dr's will learn with us.

(By the way, my previous Dr had also given me Effexor XR- Thanks to you, I now know something I didn't yesterday).

Take care,

Pam

[Sarah]

I have learned the hard way that doctors are human and that you can't go by what they say or what they give you when it comes to having them hand you a prescription or a sample (my only exception to this is my team at the Mayo and even then I read up on it myself, but I trust them more than I trust anyone else).

Anyway, this is especially true for family doctors who are not used to seeing HCM patients and don't think about it when they see a healthy looking person in front of them.

I once had a doctor give me a script for something that had caffiene in it and I said, I can't have caffiene and he insisted that I would be fine. I was in high school, and had not learned to go with my gut yet, but one pill was enough to convince me to go with what I know about myself and my condition and not listen to a doctor if their recommendation conflicts with what I know.

There are doctors who still tell people that they can stop a beta-blocker cold turkey safely --and this is not true.

Read everything. Double-check everything.

Oh--and whenever I see a new doctor, I bring with me a three page summary of my medical history/medical "events" (a list of my hospitalizations and such). I find it IMMENSELY helpful. 1. I don't forget anything, 2. doctors are usually very impressed and don't think that i wrote it myself. 3. they take me really seriously.

Good luck and talk to your doctor. You can request that the doctor packet from the HCMA (free) to be sent to him.

[billyberry]

Keep on screaming Girl....I've been taking Effexor for over 3 years and was prescribed it by my cardiologists. I will be making some phone calls in the morning to my Pharmacist first and then my doctor. I have found in my situation that my pharmacist is the best resource for drug information and have depended on them for a lot of information and I never start a new Rx unless I go over it with my Pharmacist in a consultation. I'll Even bet most of you don't Know that your Pharmacist is required to do this by Federal law and most of us let them get by without doing it. They get by without doing this by asking do you have any questions? (SOUND FAMILIAR)

Billy Berry

[amyshields]

Thanks for your responses everyone. I had a message from my pharmacist last night to call him today so he can go over a list of medications with me and we can select the best one! I love this man! I know it's his job but he really does it well ;)

[tommysgirl]

Being a person that is on both sides of this issues I can give you honest insight through experience. Never, Never assume that a doctor knows or remembers everything from your history, allergies, to your complicated conditions. They do try very hard (most of them) to stay on top of things. There is an increasing demand of patients to be seen daily. There are people coming at them from all directions for pt phone calls, refills, referrals, extra patients that need to be seen, other doctors calling, and then there is us reminding them of the things they forgot or need to do. They are human and capable of making errors.

Does this mean that we are to accept it? Absolutely not! We need to be in control of our healthcare. Be prepared at every visit with an up to date medication lists, allergy list, questions needing to be discussed, and health history (especially with a new physician). It may seem like a lot on our part, but we need to protect ourselves as well. Be polite yet assertive, ask questions, let them know if we don't understand what they are telling us.

I'm very aggressive with Tommy's healthcare. I stand up to the best of them when I disagree. I'm respectful of the degree that they carry, but will tell them in a second, if I disagree and why. Yes, even with Dr. Lever. This attitude has helped keep my husband alive and it's made the physicains realize that we know what we are talking about. As Lisa says, Knowlege is power. Learn all that you can about HCM and any other condition that you have. Challenge them when things don't sound right, after all it's your life.

Family physicains do mostly try to treat the whole person, but they aren't specialists. They keep as up to date on all conditions as much as they can. When they are in the office 5 to 6 days per week,. seeing pts 8 to 10 hours a day and then some off them have to round at the hospitals or do ER shifts also. This doesn't give them much time to read the journals. Specialized care should be with specialist that see these diseases daily. That way you know you are getting a doc who is on top of that field of medicine.

God Bless!
Sherry

[suttonmadvm]

I can see how it can be frustrating trying to communicate with doctors about the seriousness of HCM. I went to the local urgent care for a ragging sinus infection and strep throat. The doctor put me on Ketec some kind of expensive long lating antibiotic. I thought I thoroughly explained my condition and meds to the doctor and pharmacist, apparently they missed the boat. I swallowed the three pills I was supposed to take on day and about four hours later thought I was going to die. I went to my computer and pulled up the drug insert see if it interacted with any of my meds and low and behold most of meds I am taking were on that list. Called to urgent center and finally got hold of a different doc who promptly ordered me to return so they could couneract my reaction. It definately never hurts to double and triple check.

[Ladydoberman]

ALWAYS pay attention to the meds your taking. When I was placed on Amiodarone, my EP and my pharmacy KNEW I was highly allergic to Iodine. Neither told me it had iodine in it. After I had a severe reaction I called my pharmacist and asked them if it had iodine in it. They did not know. That's when I headed to the computer to look it up and low and behold it was iodine based. Amiodarone has a long half life. Needless to say, I had some miserable days ahead of me that could have been prevented. Now before I put any med in my body, I research it first. Trust no one but yourself. It can wait a day to make sure it is right for you. BTW this was the second time it happened to me. There will not be a third.

[cynthia]

Well, I think everyone has said it all. I'm fortunate that my primary care physician knows a lot about HCM and whatever he prescribes, I have full trust in him. He prescribed a medication for me once and was 99% sure it was fine for me to take, but to be 100% sure, he took me in his office and googled it on the computer. It was fine as he thought. Unfortunately, there are many doctors that do not know much about HCM and have to be educated by the patient. However, when it comes to prescribing meds, he should have done his homework and all he had to do is what my doctor did for me. What Sarah suggested is a good idea. Maybe carry a condensed medical history summary with you and present it to any doctor you go to. Good luck and take care

Cynthia