A Story Illustrating the NECESSITY of a Second Opinion (and following your gut)

[CathyK.]

Piper - Thank God for the good Docs!! No, you may not leave us here. You have contributed much and can still do so! Let us know what is going to happen with you and your heart!!

 

[marky]

Wow Piper.. that is quite a story!
So glad that you finally got the Right Diagnosis!! and saved yourself from the zipper club LOL..but Hopefully you will be feeling much better SOON!!
of course no one would kick you out of here!

 

[pipersmith]

Wow, piper ...

You should be on Oprah! WomenHeart.org has a symposium every year at Mayo which trains you to be an advocate for women with heart disease. I went this year, and met an incredible group of young women, all with various diseases. I left feeling less alone in my diagnosis, and ready to challenge any doctor who implys that my symptoms are "all in my head."

I also was diagnosed with AI three years ago, and my doctor at the time said he couldn't explain my symptoms, that they were "all in my head." A cath to check my coronary flow found occlusion of the small arteries feeding my heart, microvascular disease. The medications I take have slowed down the disease process, and have improved the symptoms.

Best of everything,

I would love to learn more about advocating for individuals health - especially women - especially heart health. When I first went to the doc more than a year ago - he thought my symptoms could be premenopause (AT 33 ). I know it happens - but my complaints sounded like a list of cardiac symptoms - he did not even listen to my heart beat. The statistics for women/ heart and women/ stroke are startling - and often overlooked in the first instances of seeking medical attention - scary stuff!!

Your story sounds similar to me. I don't think he ever thought it was in my head so much - as he did not realize the impact on my life - and thought it unimportant and unrelated, since he already found his "diagnosis."

I am glad that you found a proper diagnosis as well. I am so glad your meds are working. Is this something that can be corrected - or always treated?

Best wishes for you - thanks for the kind words!!

 

[pipersmith]

EireCara
PS. Just wondered what tests they did in the end to diagnose what was happening in your chest and arm etc.

I am so sorry for all the problems that you are having. I can certainly relate! If you cannot seek a second opinion at this time - my advice is to research AS MUCH AS YOU CAN on your own. Use your computer - type in any combination of words describing your symptoms as you can get results. You must do this with caution - and not become a hypocondriac - you must gauge your sources wisely, but the info is out there. I read extensively about giant cell arteritis before this happened but neglected to mention it to my doc (my symptoms fit very closely) because it is common in elderly people. For a time, they thought that is what I had. You should journal your symptoms, journal your questions - and present yourself to the doc in a very professional, prepared way. If a doctor is likely to disregard or ingnore the patients feelings - it is much harder if you have documentation!!
Please let me know if I can help you in ANY way. I really want to see you have some resolution - I know how scared you are.

As for your question - I think the first indication came from the blood pressure/ lack of pulse(which has been common for almost a year! In the hospital, they did a CT which showed the blockages. They also did some blood tests - the only one I remember that was significant in the diagnosis was a Sed Rate. At Vandy, they did some Ultrasound/ doppler scans, and what I fondly refer to as the MRI from hell . They wanted to see ALL of my vessels - they did from the top of my head to my ankles. I think it took about 2 hours .

Jkm7
Will you still be using your regular cardiologist? Should be interesting to hear what he now has to say given all you have learned/been diagnosed with.

This would be a resounding NO. I will be sticking with the awesome team of docs at Vandy. I lost my confidence knowing that I came so close to two procedures that I did not need. I am happy that events conspired that led me down the right road - but I do think that some should be aware of how they dropped the ball with my care. I have considered writing a very well-thought letter, explaining as professionally as I can - not in a negative way, for I feel that would be ignored. He really should be aware - and he should not just find a problem and stop looking. How many people here have only one issue? Not many - docs should be more thorough - not assume they just know! My cardio never even came to the hospital while I was here - someone from his office(another cardio) acted as mine while I was in the hospital. hmmmm.....

Thank you ALL so much for all the kind words. I am so happy to have found this place. It has become a great source of information, but moreso kindness, optimism and support.You all are AWESOME!!!!

PS - I can already tell a dramatic difference in my life. I know the meds are working - 3 days with almost NO brightness and I have only gotten really dizzy a couple of times. This is down from every time I would walk sometimes even stand. AND - I am (so far) NOT ravenous - as I hear is common with steroids. I am actually down 8 pounds from last Sunday - YAYAYAYAYAY

 

[KAJ]

Holy smoke! Your story is a classic example of why it pays to be persistent.
I am very glad that you are able to get the help you need .

Karl