ANGINA! Must see tv docu on cardiac nurse w microvascular spasm onsets!

Ladies,
I hope you will watch the 30 minutes this episode, ANGINA, entails. Joan Jahnke was a long time cardiac nurse/charge nurse and describes her journey from first spasm 'full stop' (my term) during activity all the way through finally having an LAD vasospasm onset during her 3rd cath that sent her into SCA (sudden cardiac arrest).
The MANY symptoms that can present are well described by Joan.

http://www.youtube.com/watch?v=XNscccmgtbQ

If you've ever heard...."you have vaso-spastic angina but we don't know why'......

Published on Dec 20, 2012

Meet Joan and Fred Jahnke as they describe how they learned of Joan's illness. Initially her main symptom was shortness of breath, but that progressed to chest pressure and ultimately to chest pain. Learn how Fred and Joan live with her microvascular disease and the often frightening symptoms.
Visit http://www.SecondOpinion-TV.org

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Wow, thank you for sharing this, very informative, especially for my husband, it is so hard to our mates also.
I have always been the caretaker, and i know this has taken such a toll on him also.

Blessings to you for posting:)

Shannon

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You are so welcome Shannon. I can't think of a more credible patient to feature than a long time cardiac charge nurse can you? Joan was doing all the right things and still got hit with microvascular spasms. It isn't just the large vessels that cause heart attacks. Itty bitty ones can infarct too!

Take care,
Jaynie

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Hi Jaynie and Happy New Year to you!

I believe that Joan Jahnke is the ideal poster child for vasospastic angina and microvascular disease along with a resulting severely diminished quality of life - particularly considering that - like so many women with those diagnoses - she had 2 1/2 years of "normal" cardiac test results along with 30+ different meds over that time while desperately seeking an accurate diagnosis.

Two years ago, I linked to an earlier Emory Heart Institute video also featuring Joan's story (along with Emory cardiologist Dr. Habib Samady) here: http://myheartsisters.org/2010/04/25/microvascular-disease-women-blockages/

Love Dr. Sears' comment on how stressful it is when no clear diagnosis is evident: "Ambiguity can equal anxiety in both the patient and the spouse while this unknown problem of high potential severity is occurring, adding one more level of fear and arousal over top of the condition." BINGO!

The sad party of Joan's story is that her symptoms are still severe, her spasms are still ongoing, her ongoing quality of life significantly impacted. Thank goodness her meds, especially nitro, are helping to manage symptoms.

I also love her advice at the end to other patients like her: "Don't ever be dismissed!" but I was dismayed by Dr. Salgo's parting comment: "Well, you look GREAT!" - even as Joan is doing a final spray of nitro!

Sheesh....

XOXOXO

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Jaynie,

Thanks for sharing this "must see" PBS episode about CMD. Joan & Fred were outstanding.
I too appreciated Dr. Sears' validating comments acknowledging the stress and anxiety created by this condition. I felt heard!

Happy New Year Jaynie! May it be filled with radiant health and much peace.
Warmly- Swiss

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Yikes!! That was quite an experience for the Jahnke couple!!! Lord have mercy and grant both of them peace about her condition. She is such a trooper and so blessed to have such a great helpful and understanding spouse. Love to both of them!

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Jaynie,

I'm so glad you posted this. If we could have the equivalent of the Nobel Prize in cardiac patients, I'd say Joan has gone far above the call of duty in leading the charge from a patient's POV and in advancing her knowledge and experience to her doctors and in sharing with us. It is not easy to watch, and I certainly had tears rolling down while watching it and reading it. Her background, experience, and ability to credibly portray this journey with Fred, has done all of us a deep service we are indebted to her for doing it. She has championed this condition all along the way, while grappling with this herself. Of course we can't leave out Fred, who has been by her side throughout this unchosen journey. Spouses like Fred are heroes, too.

That said, I trust that Joan will keep herself low and slow, and not get too worked up over all this adulation. Low key adulation only!

Love to all, Mary

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I was particularly touched by the discussion of the term cardiac cripple. It was explained in a way that did not blame Joan for being crippled as I felt blamed by my first cardiologist. When my doctor said it it sounded like he thought I could change my attitude and not be crippled by the almost constant angina pain.

My take on the you look great was that he was saying she looked much better after she sprayed than before she sprayed. I loved how she held up her spray. I've talked about it just like that in a group before.

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yarnkitty, I agree about that 'cardiac cripple' remark, which in Joan's context seemed like a reasonable description of her limitations based on these debilitating symptoms.

NOT like the cardiologist I heard about once who boasted: "None of my patients are going to turn into cardiac cripples!" as if he had anything whatsoever to do with that fate!

The 'you look great!' comment threw me - especially coming from a guy with the letters M.D. after his name. I even rewound the video to see if, as he claimed, she actually looked "pinker" after the nitro spray (she did not, at least on my computer screen). Commenting on somebody's appearance even as they are telling you of the significant suffering they are enduring is like saying, yeah, well at least you LOOK good - as if one's appearance matters at all during a time like this.

I have sometimes gone to considerable heroic efforts on some really bad days to simply wash my hair and put one foot in front of the other to make it out the front door, only to hear "You look GREAT!" - to which my inner voice wants to scream: "If you only had a frickety-frackin' clue what I went through to get here...."

When I worked in hospice palliative care, that 'you look great' scenario was often reported by our bereavement counsellors, too, about clients grieving a profound loss who were "complimented" on their appearance. It often comes from an awkward need to say something, anything - and sometimes even a sweeping sense of relief that somebody suffering so badly could look kind of "normal".

In fact, once at the end of one of my women's heart talks, an audience member came up to me and said "I'd always been really afraid of heart disease because it runs in my family - but seeing you here today walking, talking, looking so GREAT has now eliminated that worry for me!" She had feared heart disease because she'd look sickly? But as long as you can look "GREAT", it must not be that bad?!

Yikes....

XOXOXO

www.myheartsisters.org

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Thank you so much for posting this, and also the video with Dr. Samady. Dr. S. is the doctor that did my last heart cath. Mine didn't present during the cath, but did later while in recovery (leave it to my heart to be difficult).

I was touched by how they recognized the effects of this on the spouse. I'm definitely going to have my husband watch this tonight. He's been my rock through all this!

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Kennarina, we are all different, I follow Joan almost exactly and yes I pink up and it is noticeable. Or it is noticeable that I am not a deathly pasty white anymore.

You look at your hands and see a dead persons hand (yellowy/creamy pasty white) and you think upsa how bad is this breakthrough event going to be and then your told your face as gone pale and your lips are white and that feeling of oh shit not again, why! You spray gtn and wait hoping that it does the full trick not just takes the edge off. Then you hear somebody say your colours coming back and the relief is clear because this time you stay at home so never stop these comments (I can understand bereavement) they can offer more than is known.

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Turns out this was our joanincarolina featured in this tv segment! She comments more in the link below.

https://www.inspire.com/groups/womenheart/discussion/how-is-chronic-angina- pain-treated-without-using-nacotics/?msg_activity=reply_posted&reply_id=365 6970

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Hi there Jaynie:

Once again ... you are right on the money with this post. I would like to have a copy of this for each of my people who say ( Just get out and exercise more and it will go away ) NOT.
Joan explained the symptoms very well and she does have a severe problem.

By the way, First heart attack was on Christmas Day 2007. Christmas Day 2012 just fine, not even a twinge.

Life is good and every day a blessing. All the best in 2013.

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fantastic video!!! Thanks

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I think everyone should watch this !!! Thank you !

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Thank you for sharing this. This made me so sad, to cry actually, thinking this is as good as it gets?! Even after 3 1/2 years I still flirt with denial, thinking it might get better, still thinking I may be able to go back to my former activity level. Of course I know I never will. And I do have times when symptoms ease but the symptoms are always waiting around a corner ready to attack. I was struck how Joan didn't outwardly look distressed when she was experiencing chest pain. I think that is why many in health care have a hard time "believing" we are so much distress. When Joan was told she looked good, I love Fred's comment about they hate hearing that.
Happy New to all!

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Thank you so for this post .some times I fell like I'm loseing it . to be in denial of my own symptoms this is just what I needed.

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I am so grateful for Joanincarolina we can all relate to her and feel her pain, I showed the video to my husband, he said "thank God for nitro"

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Wonderful video, Thanks so much for posting it. It is so factuall.

Trissie

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Hey Sternum,
Wonderful to read you started 2013 with nary a spasm! Wonderful to see you smiling face too!

I'm not on-line much lately due to advancing heart issue kerfluffles but it makes my day to see old friends here. Lost my little brother, 55, to heart attack in October 2012 and New Year's Day was his birthday. On that very day I started to feel better somehow.

XOXO,
Jaynie

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Hi Mary,

Happy 2013 to you too! With far less endothelial 'acting outiness' : )

I was struck by the term 'cardiac cripple'...which I don't believe any doctor would have used in front of a patient other than 'joanincarolina'. She is a credentialed part of the cardiac team world, well-respected and tough. Wish there was a kinder gentler terminology for heart status catagories but this one is appropriate. Much of women's heart disease care should realistically be considered palliative in nature rather than 'cured'. We do what we can to manage the changes.

XOXO,
Jaynie

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