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Discouraged and Disappointed

joyce114
2 Recommendations

My hat goes off to all of you who have the tenacity to fight to find answers to your heart problems. As for me, I am throwing in the towel. Doctors continue to tell patients to "report new symptoms"; however, whenever I do just that the answers are always "everything is normal." Well.......if everything is "normal" then I guess it really isn't necessary to take five medications for my blood pressure and cholesterol. I have always walked 1-2 miles every other day, I now am lucky to make it three blocks before I start "huffing and puffing" because of my shortness of breath. I can't even walk a flight of stairs without having to bend over to get enough air to catch my breath! I've had it!!!! Time to let "mother nature" take over and stop thinking there is a problem. I no longer believe in "PREVENTATIVE" medicine.....it does not exist in today's medical system. Been there.....done that! The only thing the medical professionals like to deal with are the "EMERGENCY" situations! Guess when I DO have a stroke or heart attack they will then know how to answer my questions. Thanks for allowing me to vent. I'm tired of having to "prove" that my symptoms are REAL!!!!!!

Explore topics in this discussion:

Exercise Heart failure Tylenol Chronic fatigue syndrome Verapamil Beta blockers Anxiety Angina Bronchitis Coreg Stent Fibromyalgia Pulmonary hypertension Stress Asthma Heart disease Arthritis Stroke Sweating Cardiomyopathy Hypertension Pain Metoprolol Heart attack Edema Congestive heart failure

15 replies

careh

I am so with you on this.....I have had diagnosed heart problems since I was 22 and was put on beta blockers back in 1981. I have progressively gotten worse over the years (I just turned 50), and I just get more medications and my doctor likes to "blow me off" too. It's funny because when I first switched to my present cardiologist, he took me very seriously, but when I cancelled tests because I am uninsured, he started to blow me off and told me that an echo from January of 1999 shows okay, and a cath from back in 2001 showed my major arteries are clear, so my problems are micro vascular and "no big deal". I also had an "abnormal" stress test in 2004, but he said my whole problem is micro vascular, and even after a failed ablation in 2004, my electrical problems are "just a nuisance". All this, but he wanted me on 300mg of Verapamil (CCB)...I stayed on 200mg, 180mg of my beta blocker am and pm, 0.25 of digitalis, 0.8 long lasting nitro patches, and sublingual nitro as needed. I have very bad angina problems, and my electrical problems are unstable again, but I just go in once a year so he can say "you're fine...let's ram up the meds...see you in a year." I have gotten to the point now that I just ignore my symptoms and wait for them to go away. I even threatened to stop all my meds cold turkey after my last appointment, but my husband and feeling rotten brought me back to my senses.

I am so sorry to hear that you are in this boat too. Please know that you are not alone....there are a lot of us out there who have to fight for proper care. Please don't give up!!! My thoughts and prayers are with you!

Carolyn

1spudcat

Vent away!! This is the place to do it because so many of us can relate. I am hoping that the thought of switching up cardiologist might have crossed your mind. And as you follow these posts we all have good, bad and those ugly days when you have just had enough. I call it my armadillo mode. Be angry, vent but don't give up.

I was reading this great book," How Doctors Think" that there are some docs that become frustrated when they cannot resolve a patient's issues or identify it accurately. It is an uncomfortable place for them and that turns into frustration that is then morphed into annoyance. Suddenly you are at fault ....It is either in your head or you are non-compliant in some aspect of their care. This book is written by a doctor Jerome Groopman so it is not a doctor bashing book...but it is an illuminating one about how human our doctors are, how they learn and how they diagnose.

One point was clearly stated a good clinician is a listening one who does not interrupt and make the diagnosis 18 seconds into your explanation of why you are there in his office. There is a study that states that is the cumulative time it takes for physicians to start formulating a diagnosis and opinion about you.
Spuds

mmuff

"I am tired of having to "prove" that my symptoms are real"
I hear that. It is so frustrating to sit there in a room with someone usually when you are half dressed (which is another thing I don't get sometimes)with the feeling that they have already decided it is all in your head.....and I am not surprised to find it takes only 18 seconds....very disappointed, but not surprised.

The thing is we can not let them just brush us off and send us on our way. We have to question why are you changing my med?, or putting me on this new one?, do you think it will eliminate the problem or are we just treating a symptom? If this doesn't work what will we try next because I just can't walk around feeling this way. The best thing for me is to ask enough questions so they have to stop and think for a minute...then I feel as though I have heard maybe. If I am giving them something to think about it is a good thing right? Of course they are probably thinking how do I get rid of this pain in the neck but I don't care.
Please hang in there and don't allow them to brush you off you deserve to be treated with respect and what allot of doctors don't realize is how frightened we are sometimes!
Good luck but don't give up please!!!!

martzj

Joyce,

The extremes of what the patient is living with are rarely met with a matching response from physicians. It is a cruel, destructive disparity over time. It is like walking into an exam room with a severe burn the size of a seared bagel yet the dr doesn't even look in that direction. There is no way to reconcile exerience sides and treatment sides that gape like the Grand Canyon chasms. Much of what is spoken to female cardiac patients may be as absurd as recitations of THe Cat in the Hat....and just as helpful.

"It looks normal' is medical speak for 'I don't know, have no intention of testing further, can't help at this time.' The phrase 'looks normal' may not be remotely physically accurate. Doctors don't have the tools to precisely assess and treat many of our symptoms yet, so hang on and keep taking your meds while waiting for the breakthroughs. They ARE coming!

I've never gotten lifesaving measures until I reach acute stages. During an ER emergency cath the cardio chose to pull out and leave both RCA and LAD at 70 percent restenosis and stay with drug therapy. Never any acknowlegment that living w steady reduced blood flow to a now damaged heart vastly reduces quality of life and ability to sustain normal life activities on many fronts. And no, they will not necessarily have answers to your questions even during a critical event. That is left to you, the patient, to explore on your own via internet and books. The up side of that is you learn an enormous amount...the downside is that you grasp how little your doctors actually understand, how that may have already impacted your life.

I go through heavy research phases....than take 'vacations' from dealing with all that. When I'm ready to hit the Google medical journal trails again, I learn something useful every venture. I've read 'How Doctors Think'.....good to know because you need to be able to protect yourself from medical culture.

Like Carolyn, I've now experienced differing treatment from my doctor when fully insured vs uninsured. When insured via job, I went years without a physical....doc just kept authorizing medication refills when my pharmacy called him. When COBRA insurance ran out and I became 'self-pay', suddenly I was told I had to come in for checkups every six months ($90/visit + $35 blood labs) to get printed prescriptions for my medications. Now that I'm remarried and insured, the 'every 6 month visit' vanished. I'm assuming this is because insurance companies frown on paying for extra office visits for chronic patients who simply need refills. But without insurance, the doctor is free to schedule as many visits as he/she wants and doc gets to keep the entire fee.

joyce114

I want to "Thank" all of you who have added your stories to my frustrations. Martzj.....I am appauled that nothing was done with your 70% blockage!!!! Give me a break!!!!! I called my cardiologist to tell her I was only going to exercise minimally because of my shortness of breath. The decrease in Metoprolol did not decrease my SOB or cough. Then she suggested seeing a Pulmonologist. She had told me my CXR was "normal" but the written report I received stated there was "blunting at the costrophrenic angle". After researching on the net what that meant I found this represented pleural effusions. So why didn't she tell me that???? Why "skip" that part of the report and tell me that my CXR was "normal"? I also read that SOB can be caused by mitral and tricuspid regurgitation which I have also. These simple explanations would have sufficed for me but the clinic found it necessary to be non-commital. I have concluded that our "medical expertise" is not a "science" but more like "guess work". Many of you are correct.......our medical doctors can't figure things out any better than we at times!!! I have yet to decide if I want to see this "pulmonologist" only to find "nothing is wrong". I flat out refuse to take that. Should I decide to go forward with this, before making the appointment I will speak with the doctor's nurse and TELL them I want ANSWERS when I leave that appointment....they HAVE to find out the cause. I adore my little grandchildren, two beautiful little girls age 2 1/2 and 9 months. I play with them a lot and when I can't breath going up a flight of stairs it is worrisome to me. What if one day I am babysitting with them and I CAN'T catch my breath? What then? It becomes a dangerous situation. That's why I need answers. Thank you, Thank you all very much for your stories and encouragement. Guess I have been living in the "old school" mind-set that the doctor is always right!!!! Time to "break the mold"! Time to stop being timid and brushed to the side. I will continue to visit with you wonderful people whenever times get frustrating.

goingstrong

My SOB was made MUCH better by switching from Metroprolol to Coreg. It's greatly improved.

Yes, I think you both need to consider a new doc who listens. There is more to treating a patient than writing prescriptions. In fact, I learn more from MY patients by listening than by most testing! (I'm an NP)

That was a 180 degree turn around for me when I found a new doc. Really!!!

Lynn

mamaellie

Ya know what? I use to be able to do so much more. My brain still thinks I am the old me but I am the NEW ME and I have to keep reminding myself. Angry, annoyed, frustrated, absolutely, but not as much as I use to be. I just go with the flow.

Last week I was huffing and puffing while trying to speak with 2 workmen. They told me to get out the sun. Not me. I told them if I fall over just get me to E R. I knew it was not the sun. It was the sweeping I had just done minutes before they arrived. How dare I think I could sweep the driveway and not be winded. Ha.
So I huffed and puffed, but did not get out of the sun.

Sit, time out, take a few breathes, rest my head, a little daydreaming, and then up again for a whole 15 minutes. Just a new me. 15 minutes do, 15 minutes rest. Just the new me.

Ellen

Sarcasma40

This is what I said to my doctor when he passively told me that sometimes a feeling is just a feeling and everything is fine.

Yes, a feeling is just a feeling if it comes momentarily and then goes...
A feeling or change becomes a SIDE AFFECT OR SYMPTOM WHEN IT COMES AND STAYS OR IS FREQUENT AND ON-GOING!!!!!

Somehow that made sense to him and we dug deeper and yes, it was a sypmtom of a vein dying on the back side of my heart, small and non threatening, but none the less painful and frightening.

Love and PEACE OF MIND,
Stacey

primetimelady

Please don't trust or expect the ER to help or listen to you. Pasted below is my story that was published in Eaminer.com by Lois Trader RE: Women's Heart Disease information: haven't got there yet. Lois posted my story after she heard this happened to me in May 2009.

Hi Lois,

I have a heart story similar to yours. I went to the ER complaining of left side to mid sternum chest pain. My first EKG was normal and my enzymes came back negative - because an EKG doesn't predict an impending heart attack and the enzymes usually take 4-6 hours after the onset of the heart attack before they show up positive. I was told that I was having a gall bladder attack. The gall bladder is on the right side but the pain can sometimes radiate to the left. I had no right sided pain whatsoever. But I was like you and felt intimidated by the medical professional. Down deep I knew it was my heart... it was kind of like knowing you are pregnant before you actually miss your first period. They were going to send me home and told me to follow-up with my own physician but the pain intensified so they decided to keep me so a general surgeon could come in the next morning to discuss removing my gallbladder.

While I was still in the emergency room I started sweating profusely - my hair was soaked and wet from perspiration. I was nauseated and begged for an emisis basin because I thought surely I was going to vomit. I was so ill that I can't recall the intensity of the chest pain except that it was all on the left side including my neck and jaw. I was ignored during this time period. The ER nurse said that it was probably the Dalaudid pain medication that was making me sick. I didn't argue with her. I should have spoke up for myself. I should have demanded that the doctor return to my bedside, but I didn't. I just suffered through a right inferior myocardial infarction and nobody noticed. This was about 9:00 or 10:00 pm. The next morning when the general surgeon came into my room it took him less than five seconds to recognize the fact that it wasn't my gallbladder bothering me. At that point - 12 hours later the EKG was positive and so were my cardiac enzymes. I was immediately transferred to CCU and within an hour I was in the cardiac cath lab.

Unfortunately it was too late the damage to my heart was done. Cardiac intervention needs to be performed within six hours of the heart attack. Once the tissue is dead it is irreversible. Four days later while I was still in CCU I had another heart attack. The second time I was in the cath lab within 30 minutes and a stent was placed in area that had 80% blockage. That is the difference with prompt attention.

The lesson here is that women MUST speak up and doctors NEED to LISTEN! I was a 139 pounds, hypertensive, diabetic, 53 year-old female, with a strong family history of heart disease, and a smoker coming into the ER with chest pain... and they missed it. I had a heart attack right under their noses and they missed it. I wish I would have screamed, cursed, and demanded to be examined... but like you, I felt intimidated.

Thank you for listening.

AZMommy

I'm the young duck here on the board...I see SOB and have no idea what that really means...other than the traditional abbreviation-lol.
I just wanted to throw my support out here for you. I am young so the docs do take me serious...actually my echo kind of shocked 'em just for the fact that I was still able to chase my kids around.
Have they put you on a moniter? The one that I am on will record for 2 mins total...when I feel funky I just press the button and it loops back (?) to record 60 secs prior.
I really do not have any experiance with cholesteral or high blood pressure issues...just low blood pressure. But they did give me metatoprol or something named like that they other day for my CTA scan and my heart rate dropped REALLY low. Please don't throw in the towel! Always remember to believe!
You are in my prayers.
Tanya

aussieheart

dont know how many of you ladies are in Australia but here I have been lucky to get good care.
Last year I had a blinding migraine/panic attack 'funny turn' thing which had my hubby dragging me to our local public hospital (we have no private insurance :( ) the minute he said 'heart problem ' I was put on a bed and swung into emergency room.No mucking around. I was impressed.However reading the experiences my suggestion is to go 'dr shopping' . I have had several different Dr's to find a 'good one' and have asked friends and family if they have any recommendations.Shop around ladies dont settle for a Dr who doesnt listen or take you seriously.I am lucky to also have my best friend who happens to be a G.P in another state but an email is never as good as a visit and cos she luvs me she scares me to death sometimes too xxx lol

primetimelady

SOB = short of breath
I assume you know the alternative definition LOL

hipmama42

I have a different tale to tell, but in a way, it's just as instructive. I went to the E.R. by ambulance because I had what I thought was a bad asthma attack, coughing up gobs of mucus, coughing uncontrollably so hard that the small vessels in the back of my throat were bleeding, so there was blood in my mucus. I have been an asthmatic for many years, and I am usually able to bring the attacks under control using my home nebulizer breathing treatments, which are similar to
what is given in the E.R. This time it wasn't helping - I was getting shorter of breath and extremely light-headed and dizzy when I stood up, I had been fighting viral bronchitis and sinus infection for nearly a week, getting weaker and weaker and more light-headed each day. I had a wheeze that didn't sound any different from past attacks during a bout of bad bronchitis. In fact, I get something similar every fall. My ankles, hands, and face had been puffy and swollen for a few days, but this happens to me when I am pre-menstrual, and it was 90 outside with high humidity, which also causes me to have some edema.

I wasn't looking forward to my ER visit, but I figured I'd be out of there and back home within a few hours, maybe with an antibiotic prescription. Asthma is another chronic, self-managing disorder where the patient usually knows way more about the severity of their own symptoms than the ER doc, esp. if it's a new resident. I didn't have a lot of confidence in ER docs after years of bad experiences, but I figured this was pretty cut and dry - no one could fail to see the racking uncontrollable cough and gobs of phlegm I was coughing up and could not stop, not even after breathing treatments.

This brand new ER was swift and efficient. I received my two breathing treatments, an EKG and a chest X-ray, my oxygen level was measured, and I was given some Tylenol with codeine for my cough. I was feeling quite a bit better, and ready to be sent home.


So when the ER doc came in, I considered it just a legal formality, and I barely listened to him. Then through a dim fog I heard the words that jolted me to attention, "has anyone ever told you that you have aserious heart problem? - you have fluid on your lungs and you are in congestive heart failure. You had a serious arrythmia when you arrived, and your potassium is dangerously low, and your heart is enlarged and not getting enough oxygen to your system. I am going to order that you be admitted. You need to be tested and this is not something that should be treated as an outpatient..."

I was so sick and weak and exhausted that the words didn't fully sink in...at first. I was groggy enough not to totally freak out, but I was there alone with no family, my kids expecting me to be home that evening, and school had started that week. My first thought was, "I don't have time to be this sick. He must be wrong about this. I have fibromyalgia and chronic fatigue syndrome and a weak immune system. If something was this seriously wrong with me, wouldn't my doctors have found it?

This was a switch all right - a strange ER doc telling me that I have a serious condition with real diagnositic abnormalities and an actual X-ray showing an enlarged heart and fluid- filled lungs - that I was actually sicker than I knew, but with something I had never suspected and none of my doctors had caught. In this case, being new to my case was an advantage, because all of my symptoms had been automatically attributed to the fibro, weak immune system, arthritis, chronic fatigue, or asthma.

Never in my life had an ER actually caught something serious that my doctors had missed, or that I hadn't suspected. This time, I had only had a very fleeting thought when my feet and hands were swollen up so badly that just maybe it was something to do with my heart - but I had quickly put the thought out of my head. No family history of heart disease....no past heart problems. Never in a thousand years would I have imagined that I had "idiopathic cardiomyopathy."

After reading all of the posts on this forum from women who were dismissed as depressed or having anxiety and panic attacks, gas pains, or being "too young to have heart problems," and not being ordered key diagnostic tests, I consider myself incredibly lucky. If I had not gotten bad bronchitis and asthma, and gone to this particular ER with this particular doc, I might not have been diagnosed until it was too late.

If a cardiologist suggests a consult with a pulmonologist, I would consider following through with it. Many heart problems are linked to lung or kidney problems, and cardiologists seem to be focused with tunnel vision on the heart as an entity unto itself, it seems. I am trying to get into my pulmonologist with my tests and labwork to see what he makes of all of this. It may turn out that pulmonary hypertension caused by damage to the small vessels in my lungs has caused or is part of the heart problem.

I've always been as proactive and assertive in my medical care as possible. It's my body and my life, and the doctors are working for us, in a way - we are paying for their Porsches and country club memberships. The good ones know that they don't know everything, and are open to patient's opinions, gut feelings, observations, and suggestions - they know that an informed patient is a more successful and compliant patient. The good ones also see their patients as real people with real lives and feelings, and not just a medical chart with a condition and a set of symtoms.

jeanncnc

good to vent. i believe lots of us have been very athletic in some way or another. i do not climb stairs anymore nor do i run. now i sit and take the elevator. i like my docs, but if i didnt i would change. i am also very grateful for the docs being quick to diagnose and place an icd that is the reason i am here today , i take every day as it comes.

sherry54467

My feelings right now exactly

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