My New Heart Doc Appt.... Horrible

[hilbiligrl]

I saw my new heart doc yesterday. There's not a whole lot to say about really, but I wanted to share it. She was the only female heart doc and i had such high hopes, to only be treated, yet again, like a nut case and like she could care less if I was on death's door, which often i feel I am. I had be lapsing into an aggressive episode the day before that was getting worse as each hour progressed. So, taking a shower and getting ready was a major feat (as it always is).... i was so out of breath, short of breath and severely weak. So, i was very symptomatic going to the appt.

Basically, she came into the room with a very mightier than god 'air' about her. All she wanted to do was look straight into her computer the whole time i was there.... about 5-10 with her alone = no where near enough time to appropriately **** what's going on. To make a long story short, she says in these exact words "I don't agree with vanderbilt, as im sure you have researched Autonomic dysfunction and you should know that it and orthostatic intolerance only affects the elderly population..... it's possible, but not likely for you.' I was already fuming, i wanted to correct her so bad, but didnt. I thought anyone who knew slightly about this disease, knows that it affects mostly young women. I already knew at that point she was not well educated on the issue, nor did she wish to be. She wasn't good with eye contact, and she was very cold as if she didn't have time to deal with me, as all doctors seem to treat me. So... i was nice, despite having to hold my tongue, which was so hard. I discussed wiht her the catastrophic weakness which i know all to well is a different feeling than fatigue. And also discussed the shortness of breath 24/7 which has been so bothersome this past week that it has had me in a panic state so much.... really scary. And i discussed with her aobut urniating a good 32 times in only 12 hours (wasnt going to mention that, but she asked if i urinated frequently). She typed and typed away never discussing it, yet kept on insisting i need to be tested with my primary doc for other disorders. I had already told her twice that over 8 years i had alrady been tested for everything possibly known around here and seen many specialists with many repeated tests, bloodwork, etc. She then went on to ask if i was so sick: 'how did you manage to get plastic surgery done'. I was appalled. It took all i had to not get up and walk out. I managed it for one, i had no idea i had dysautonomia, and two, it was during a 'remission' time. This is one of the exact reasons why i fired previous fam doc, because she had issues with me getting plastic surgery and didn't agree with it.

Basically to make a long story short, she didn't LISTEN. I gave her a 'report' of my bp and hr readings from home..... she didnt even look at them, or take them for that matter. My bp in their office was 139/79 at that time and my HR was 111. She also said my TTT was inconclusive and that if I had pots that it would have been without a shadow of a doubt have showed it on the TTT and that it wouldnt have resulted in a borderline test. My bp didnt start to drop until 45 mins was up and right before they were lying me down it was dropping yet they said 45 min is the cut off, so they wouldnt let me stay standing for even a sec longer to see if the bp continued to bottom out.

She said she didn't see the need in me being seen aagain by a heart doc. Even after i told her that i had numerous palpiations daily and that it seemed i could provoke them by laying on my left side a certain way. I also informed her that the palpitations sometimes felt like bubbles or knuckles popping iinside the heart.

When she said she didnt see any reason why i needed to come back, i got irate and insisted on an echo and holter monitor. She disagreed, but i told her i had the right to get them, then she took a moment of silence and ordered them and said she would only see me again if the tests turned out something noteworthy. I insisted the holter montitor longer than 24 hours, she wouldnt' budge..... so i insisted to be 'handed on over' to the 2 heart specs in her practice who were more familiar with vanderbilt and dr. Raj.... she refused and said it wasn't needed. She had no clue of Dr. Raj in the first place, cuz i had to spell it and she didn't even know his first name.

I tried to get her to understand that im getting worse every day. 8 years of this getting worse and not one doctor out there has been wiling to probe deeper or even care to take more than 10-15 with me. And when test results show nothing, then they just shove me off and arent even the least bit caring. And to think I only told her about the symtoms they asked about or what i felt was due to the heart issues.

I was pass out-ish the whole time, and even more so after she opened her mouth. I was in sheer disbelief and her comments and carelessness. I fought back tears, but when i got out, i cried all the way home, and went off to a room to be by myself most the night. I can't count how many docs this makes who have turned me away. I am so angry as to me, there should be a protocol taught to docs to offer more compassion and more probing into rare and challenging cases.

The hope in this situation: my friend who works there in research came down to talk to me after the appt before i left. He knew i was pretty much losing it, angry, sad, hopeless, crying (i am sooooo not a cryer). He said he was very close buddies with one of the heart specs inside who deal with rare cases and as i said before, knows alot more about dys and pots than this heart doc i just saw and that this heart research spec is the only one of 2 who actually talks to Dr. Raj and that the one that i just saw, never has. So, he's already discussed me with this spec and he is now trying to go behind the scenes and get me in with him, or have him take over my case in their practice. (see, i had to see this 'generic' heart doc, in order to get 'inside' to the 2 research heart specialists..... and well, since she refused, i have to keep trying right? So.... big hopes for geting some help.

I am so tired of the severity of my case being ignored and being treated like it's a mental thing. Im smarter than that. I KNOW my body and mind all to well. Now, im second guesssing myself and afraid once i get to Raj, he'll say the same, that im not typical of dys..... everyting i am screams it though. If doctors only knew how badly they affect those of us who pose challenges, when they treat us with such a 'mightier than thou' attitude and treat you with such insignificance.

Sigh..... never keep trying right?

many thanks to you all,

hilbiligrl

[comfortzone]

Oh My Gosh -- My heart just BROKE in two reading your post.... I have to run to an appt. now (Weight Watchers - sigh) ... I want to write more about this later. Just know you are an awesome worthy wonderful warm beautiful person who's just had a very bad shake in a run of simply awful heartless, know-it-all-but-are-really-stupid-physicians. I mean really stupid. There is tons of hope for you - you just need a chance with a good good doctor.... they ARE out there.... they WILL help you. Don't give up -- Rest and heal from that wicked experience - I could literally feel the trauma as if I were in your shoes - you write so well. I do gotta run - but know it's not you - it's just rotten luck with less than worthless physician care -- I mean the first rule is do no harm - and they have harmed you -- FOUL she cried! Chin up - Much better interactions with docs are in your future...Much Better. Big Hugs!

[Sallysblooms]

I am so sorry. Well, she sounds like most of the clueless, uncaring, VERY ignorant cardios. I saw two. My first one was discusting in the way he treated me.

MINE DIDN'T even SIT! He kept the door open and took two LONG CALLS and left. A nurse interrupted us over and over again. I could not believe my eyes. I cried all the way home. I can't believe these people. They are so ignorant.

My 2nd cardio was VERY NICE!!!!!! He had no idea what was wrong. Did some tests. They looked ok. But he put out some effort! This is before I knew I had POTS.

He went into the hall and talked to another doctor! He came in and told me it could be Dysautonomia. That is when I was able to start to get better. My CFS doctor took over and has done a great job.

I am SHOCKED that she said only old people get it. BIZARRE.

Please know we all understand and I send hugs. YES, you keep looking for a good doctor. Rest up and try again. This is a full time job. I am used to it. CFS for 18 years. I have a doctor that knows what each supplement does and does good blood testing. Can you find an integrative doctor?

Do you have a friend of family member that can go with you next time? This is helpful when you cannot speak from being in shock at how dumb they are.

It always hurts me to read about others in pain from a doctor. Doctors should, at the very LEAST, LISTEN and tell the patient they do not know and try to find another doctor to help them. Most cannot accept that they do not know much at all. FIRST DO NO HARM!!!! That is their job I do believe.

[juliegee]

(((((Hilbiligirl)))))

My heart breaks for you too. You are getting no help or treatment??? I pray you get in with the right docs too. If it helps, I had a very similar appt. with my cardiologist a few days ago. You are strong and wonderful and will get help. Stay strong. Better days ahead.

Hugs-

Julie

[firewatcher]

I am so sorry! I wish I could say that I was surprised.

It sounds exactly like my first neurologist appointment, my husband went with me and was just stunned! Don't let that bleepedy-bleep-bleep excuse for a doctor get you down! YOU know your body! I know it is hard to stay strong, but it is the only way that you will ever be able to get any true help. Keep looking for someone who will listen, and look. Rest up and re-gather your strength.

((hug!))

[MomtoGiuliana]

What a terrible experience--not the right doctor for you--or for anyone. I am really appalled. Although I have also gotten similar dismissive, even critical/judgemental treatment.

I'm intrigued that this doctor only looked at blood pressure readings from your TTT (from your description). POTS is defined by change in heart rate on standing. It has nothing to do with blood pressure. A lot of people (including doctors) don't realize this.

[Sarah4444]

I just wanted to add my two cents. Just for kicks the other day I counted the number of different doctors I have seen in my life and I stopped counting at 44. To be fair, most have them have been quite nice, if ultimately unhelpful. The worst of all though (so far) is my current cardiologist. I went to see him when I was terribly sick this summer, and brought along my husband and my mother (who is a doctor). He still treated me like dirt. What is it with cardiologists?

Does anyone think that this pattern of being dismissed and treated badly is at least in part due to the fact that POTS and many of its related conditions are more prevalent in women? Isn't it a form of malpractice or systematic discrimination to mistreat and ignore an entire disabling health condition due to gender bias? The whole thing gets me so mad. I know I am a competent, intelligent person who happens to be sick and am tired of going to see a doctor who invariably leaves me on the verge of tears.

hilbiligirl, have you looked into the MCAD/POTS connection? What you described reminds me of how I feel when I'm really doing poorly. Thank goodness for this support forum. My New Year's resolution was to not murder any medical specialists this year.

[songcanary]

I am so mad for you I could spit. Same thing happened to me for three years. My primary doc kept blowing me off and sending me to the gastro because my worst symptom was nausea. But it was in a tie race with the lightheadedness, appetite loss (duh),flushing, body temp of 95.0 in the middle of the day, profound weakness, blurry vision etc. He even had the nerve to state that 'you'll probably feel better tomorrow. Because you ALWAYS DO'. Sure, I could manage the occasional rally because I'm tough like you. But they didn't last and that doesn't mean I'm well. Cripes!!!

Hang in there sweetie and hopefully your friend will get you in with a decent doc. We all need an angel now and then, maybe he's yours. If not, press on. I got help at the Cleveland Clinic but I referred myself. Best thing I ever did. My heart goes out to you.

[Lovebug]

Wow!!! So sorry you experienced this. The next time you are in that position, you can say "HELLO...I'm right here, I'm the patient-remember-and I'm telling you that this is how I feel..." and list your symptoms in an orderly manner as well as how they are affecting your life. I can't stand when healthcare providers treat the numbers and not the patient. I teach nursing and all of my students learn from me upfront that measureable things are important (such as vital signs, labs, etc) BUT the most important observation & source of information is the patient!!!

Hang in there! I wish I could send all of you to my cardiologist...he's been a Godsend (so far). Ironically, he has accumulated a population of patients with Dysautonomia through the years due to word-of-mouth. He told me there isn't any money in treating us which is why many doctors don't treat Dys. Keep the faith.

[sue1234]

Wow!! I could have written 3/4 of that story recently!

I had seen a new cardio a couple of months ago, went over my whole story, and prescribed a beta blocker. I tried it and my b/p plummeted and it seems I would be in a "stupor" almost. You can't get the heart rate down to a reasonable rate at the expense of inadequate b/p(65/45)--my body is too sensitive.

AND, this doctor told ME to give him time(he said it might take a year), that we would figure this out. I said I have plenty of that right now, so, yes, I will put the time in necessary to figure this out.

I go for my follow-up, explain how poorly I reacted to the med(had quit it). Well, I am told, oh well, my heart is fine. No need to come back!!!

I left there dumb-struck. I rant to my poor husband in the car. This doctor said we would work on this, and now that's the end of it.

Is there something on our charts that tell doctors from one visit to the next, "don't do anything for this patient". I know how ridiculous that sounds, but that seems to be the vibes I get from visit #1 to visit #2.

Are we missing something here? What happens between the first visit where the doctor shows some interest and promise, and then the next visit, that ultimately ends up being the last??? I honestly don't understand how to get care for a complex problem these days. I can't seem to get a doctor to try anything past a beta blocker. I've read all the protocol that Vanderbilt puts out from their research and have yet to find a doctor that will WORK on my case.

I AM VERY FRUSTRATED ALONG WITH YOU, HILBILIGIRL!!

[cordellia]

oh yes... the self censoring... the dismay... the tears... the frustration... the fear...

your story sounded sadly familiar... i am so sorry that your were subjected

to such mistreatment and blind ignorance. my heart truly goes out to you.

your friend sounds like a caring individual-- hoping that you are able to connect with the doctor of your

choice! please persevere! you deserve to be heard and to be treated with courtesy and respect.

healthful wishes,

cordelia

[kayjay]

Sadly I think many of us can tell you similar stories. When I finally found out that I had POTS I wanted to smack some of the doctors I had beg to help me over the past 10 years . You are not alone. Don't let some moron get you down. Can you imagine how unhappy a nasty person like her must be!

I had a doctor "fire me" because I would not agree that I was depressed! She sent me a letter.

Hope you get to a good doctor soon. They are out there. Don't let yourself care what she thinks about you or what she said to you.

There is a certain doctor at Johns Hopkins that I would like to hurt . He sent me to NIH to be a lab rat. I have no idea how much radiation I was given...I get angry... And then I remember he is not worth even thinking about! (hug) to u!

[dianne.fraser]

Hilbiligirl - I feel devastated and horrified at the treatment you received from this horrible doctor. I hope you are surrounded by loving, nurturing people right now - I know that it can take a while to recover after a consultation as brutal as this one. I don't understand how these doctors can justify holding out their hands to us for payment after delivering such ignorant, inadequate care.

I feel certain that better care is coming for you.

With best wishes

Dianne

[hilbiligrl]

Oh my everyone, I am so amazed at the support here. This forum and all of yall are my refuge and my deliverance. Even if i havent been on here long, ever since i found this forum in sept, i have clung to it, as it is priceless to me. Thank you each so very much for your kindness and empathy and warm hugs, as it helps in a healing process. I am so sorry each of you and so many others of us have to endure this again and again. I could tell horror stories from many of my visits and different docs. It seems ever since Vanderbilt gave that er diagnosis of autonomic dysfunction, no one, including my family and friends and colleagues just can't bring themselves to fathom the possibility of it. It's completely ridiculous the bias and persecution we suffer through, especially those that we rely on and hope in for medical intervention.

I knew this one cardiology practice was going to be a challenge, but i guess i allowed myself to let my guard for one moment and actually allowed myself to hope again in a doc, which is something i seem to repeat. I just didn't expect to be treated so nonchalant. I am resting up as we speak, but contending with a bad migraine since yesterday, which has delayed my reply and may thanks.

now what~ you have no idea how much the compliment of good writing meant to me. I wall telling my pharmacist the other day that i really missed my intellect due to this disease.... i was in tears as i read your post

mack's mom~ right now im on no meds. When i came back with a diagnosis, my long time family doc wouldnt budge. She was very offended and 'wrath like' when she found out that i had someone take me to vanderbilt because she refused to do nothing. When i came back with a diagnosis, she never once looked at it, just put it inside my chart. So, from sept till a month or so ago, my many phone calls for her to consult with vandy went ignored, and then i started faxing her different info i had found on the net. She refused to even ponder the fact. It was when i lost complete ability to swallow for over a week and was in a pretty life threatening state and hubby called her office and told her i need to be admitted to the hospital for observation and some type of intervention as I had no way of communicating anything other than small scribbles. She refused, said to go to the er if i wish, but she was not going to do anything about it. So, i dropped her like she was hot... which she wasn't. She was always condenscending and very controlling as a doc. I hid my breast aumentation and tummy tuck from her because she openly judged it from a religious point of view, yet it was none of her business.... she said YES it was ber business to know why i choose to dome something so rash. I am not shy therefore, i have no problem talking about my experience and reasons of getting the BA and TT done, but with her, i knew she would 'attack' me, so to speak.... so, end of her.

I did by luck, i had to change gynocologists, as my long time one was going back to school (she was a nurse practitioner at the gyno office, and she was good). Anyways, waited 3 hours to see a new one, their office/practice/group was restructuring and it was a complicated day for them.... but the wait was worth it. The gyno was my age, my 35 though, as im 33. And she was an intergrative doc. She actually supports legalizing cannibas. And she KNEW about dysautonomia, so my appt with her lasted over an hour, as she was teaching a student (i never care if they teach students, they alwasy ask first, and i love be able to be apart of a teaching protocol).... but she talked about my symptoms and agreed and rationalized that vanderbilt's diagnosis was right on, but that she had no clue how to treat it. But she supported me. And when she saw I had plastic surgery, she was like 'wow, great job on the BA, who done it? looks awesome!'.... so then we chatted about that for a while. She was so down to earth and real, so glad i have one doc like that.... let's just hope i find some more like that.

to mack's mom and sarah4 both~ i do very much suspect mcad with hyper pots. This is something i am insisting upon once i can get a doc to listen and want to recognize this disease and learn with me. Mack's mom... i had been meaning to reply to one of my previous posts, as to how does it feel for yal to have an anaphalactic episode and how does a doc test for this? I had told the heart doc i felt i was having either that, or mvp (as someone has mentioned), vasovagal episode or an autonomic attack. She ignored me of course.

I do have the flushing that i have read about with the mcad.... so much. Its aweful.

sallysblooms~ when i fired my long time doc, i submitted my case to an integrative doctor, his name is Reid Blackwelder. You can search him on the net from the city of kingsport, tn. He is well known, well respected in this are and has be awarded some awards and several articles have been written about him. He is also a professor at our local college of medicine. He preaches doctors should have much less patients and spend much more time with them. He is quiet out of the ordinary and someone before his time it seems. I have deep hopes, but im gonna keep my gaurd up, as now im getting to were i dont trust any doc any more. I am however, going to give him some information on Dys and POTS and also have him ready some things i want to be tested for : mcad, eds, connective tissue disorder, vasovagal episodes, mvp, etc..... He only accepts rare difficult cases, and it took him twice as long to screen my medical history, but i was finally accepted as his patient about 6 weeks ago i think... i totally cried to the nurse that called and she proceeded to say, she had never had that reaction before. My first appt with him is on monday.... early in the am, when i am at my utmost worst! But if i have to have someone to carry me in, i will have to just do it. I just hate it when i took weak to even talk, its so hard to try to talk to a doc when your speech muscle ability is totally impaired in some form or fashion.

To all of yal...... You guys helped whip my 'psychee' back into shape, as im no longer dwelling on that horrible appt from yesterday and now trying to put together some facts, info, symptom list, etc about me for my new family doc. You never know, if he takes me seriously and accepts me as prob one of his biggest challenges, then maybe he can teach this desease to his students and perhaps a small trickle effect of knowledge may take place. Who knows? I sure hope so.

I hate to allow things to upset me so much, but it seems where i was once so steadfast stronger than everyone, over the years, i feel me crumbling quickly. You guys help to keep the pieces together.

So many thanks,

tennille

hilbiligrl

[Sarah4444]

Hey Tennille - I only started to think about MCAD after Julie told me about it, and because I realized in retrospect that I had been having lots of trouble all summer with skin itching at the same time that I was having awful "POTS attacks". For me, if it's very severe my blood pressure goes really far down, my heart rate clunks over to 200+ bpm, I get itchy, flushed, and short of breath. Sometimes I just get the last three and I don't notice the severe bp collapse/tachycardia to the same extent. I also had an awful feeling of impending doom during these episodes. I still have lots of episodes of flushing and feeling crummy after eating, if I stand too long, if I try to concentrate too long, when it's hot or if I get upset. It's very weird.

I am excited that you are seeing Dr. Raj. If anyone will know about this stuff and have an idea about research that might be going on or treatments, it seems like it would be him. My only small experience with him is that he was kind enough to answer an email I sent him looking for an autonomic doctor up here in Canada, which led to my diagnosis (still haven't seen the actual doctor yet, just had the TTT). Keep us posted.

[Christy_D]

Just want to add my 2 cents- Don't think they look down on you just because you are female. My son has also been treated poorly, maybe because he is a teenager, I don't know. Every doctor we saw said he had anxiety, was depressed or just didn't want to go to school. Even after a psychologist cleared him of anxiety or depression, they kept pushing the anxiety theory. Even after a cardiologist gave us a general diagnosis of 'autonomic dysfunction', they still said anxiety for the nausea-including the cardiologist who diagnosed him.

We have not been back to a cardiologist since. Neurologists have been the most sympathetic and understanding doctors we have seen so far. His Cleveland dr was a neurologist and his current POTS dr is a neurologist.

Anyway, I don't necessarily think it is just a female discrimination, possibly add teenagers to that.

Christy

[Sarah4444]

I'm so sorry to hear that Christy. My mother always said that some doctors operate on the "if you don't know the answer, blame the patient" principle and I guess it applies across the board. It may be easier when the patient can be stereotyped in some way (hysterical women, lazy teenagers). It takes so much energy just to manage day to day with this illness, I wish they would realize(or care) how much harder their behaviour makes things for us.

[issie]

So sorry you got a bad doc. Hoping for better ones in the future.

[comfortzone]

Hello Again :-)

You might already know this - or maybe not ... but if we skip disciplines from Cardiology to Neurology - the question seeking answers about urination often enough are directed toward gleaning if you may or may not have a tethered cord issue. Also other issues of the spine sometimes have these related symptoms too - such as spinal stenosis and cervical spine myelopathy....

The basic Occult Tethered Cord Screening tool asks:

Do you have:

Urinary Urgency

Urinary Frequency

Urinary Incontinence

Nocturia

Problems starting the urinary stream

Constipation

Diarrhea

Occasional incontinence for stools

Decreased interest in sexual relations

Difficulty reaching an orgasm

Decreased sensation in the pelvic area

Low Back Pain

Numbness under the soles of the feet

Keeps knees bent at night

Low back pain, leg pain, or urinary symptoms while walking up stairs

History of severe growing pains during adolescence

If you score on a number of the above it is then that sometimes the doctor will order urodynamic testing for tethered cord. It's an invasive procedure in that I believe you'd get a catheter for the test - it measures things like residual volume after urination etc. I've not had it - when I tried to get it done locally - the hospitals acted all confused about it - as if it had to be done in a urologists office????? I think for sure Mayo does them with no confusion lol....

So for what it's worth I share the above ... take care!

[comfortzone]

I'm so sorry to hear that Christy. My mother always said that some doctors operate on the "if you don't know the answer, blame the patient" principle and I guess it applies across the board. It may be easier when the patient can be stereotyped in some way (hysterical women, lazy teenagers). It takes so much energy just to manage day to day with this illness, I wish they would realize(or care) how much harder their behaviour makes things for us.

I edited my scathing writing and apologize for it -- no need to doctor bash the ones we rely on for help as a profession. There are going to be all kinds of docs -- those that we find helpful and those we find less than helpful - May God bless us with a path that includes many more docs that are helpful! Sorry.

[issie]

WHEW!!!!!!nowwhat - I wish I'd had YOU with me. I'd like you in my corner.

[comfortzone]

I'm so sorry to hear that Christy. My mother always said that some doctors operate on the "if you don't know the answer, blame the patient" principle and I guess it applies across the board. It may be easier when the patient can be stereotyped in some way (hysterical women, lazy teenagers). It takes so much energy just to manage day to day with this illness, I wish they would realize(or care) how much harder their behaviour makes things for us.

I edited my scathing writing and apologize for it -- no need to doctor bash the ones we rely on for help as a profession. There are going to be all kinds of docs -- those that we find helpful and those we find less than helpful - May God bless us with a path that includes many more docs that are helpful! Sorry.

I wrote the above because my original response to high agreement with experiencing blame the patient - was too harsh...way to harsh and I am sorry if the post offended anyone. I was feeling very empathetic toward the original poster and my anger at how she was treated lead to a dissertation as to how anyone might treat a patient so harshly...later came to think it was in poor taste~

[Sarah4444]

nowwhat, I certainly understood your anger.

[issie]

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Somehow double posted.

[issie]

I wrote the above because my original response to high agreement with experiencing blame the patient - was too harsh...way to harsh and I am sorry if the post offended anyone. I was feeling very empathetic toward the original poster and my anger at how she was treated lead to a dissertation as to how anyone might treat a patient so harshly...later came to think it was in poor taste~

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Me too - I think it triggered me wanting to warn people of my horrible time too. I've deleted it from this post as to not take away from the original post. I started a new post instead of including it here. Sorry!! I think just hearing the horrible time that was had with this doctor has us all upset.

Sorry that you had this experience and that we all have to suffer these injustices.

Issie