Medical News Today - Gender Differences in Heart Failure

• By martzj
• Posted July 30, 2009 at 2:04 pm
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They will read this stuff when they get paid to read it. That is why the WH founders have been on this amazing expanding mission to get medical practice changes passed into law. That is what it takes in the US....It must be a law or doctors will continue to ignore it for the most part.

It has to cost them to change them at this time.

Jaynie

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• By iowachris
• Posted July 30, 2009 at 3:48 pm
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Jaynie,

I see that you do a lot of writing here on this site regarding what WE/US can do to change how women's health is dealt with.

Since I am new and starting to feel like fighting back I will check out some of your past posts.

I have read your journal and you too were a victim of precious moments being wasted from the EMT's all the way to the ER. Not to mention your doctor.

I was lucky that I have a good MD who listened to me when I said "I'm having this squeezing pressure right here...." he looked at my risk factors and said he wasn't going to take any chances. He got the tests and the whole ball rolling. Of course, he is a heart patient himself. So, he knows the seriousness of it.

I was also lucky that with those heavy duty blockages I didn't suffer a major heart attack. They thought I might of had a mild one because my heart wasn't "mirroring" what ever that means. But, they found no heart damage when they did the bypass.

This site has been very helpful in my healing process and also a place to get good moral support. The other two places I go to is "Medical News Today" because I want to know the latest news on heart health. And since I live near Mayo in MN I check into see what clinical trials and updates they have going on.

My cardiologists and surgery was not done at the Mayo because they are about 1-1/2 hrs away . I am lucky that I live about 25 minutes away from one of the nations top 100 cardiology Heart Centers in Mason City, IA. It might not be in the top 10 like Mayo and Cleveland Clinic but for a rural serving hospital their Center is awesome.

If I stay on top of what's going on then I can make suggestions on how my heart center can get even better.

Chris

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• By martzj
• Posted July 30, 2009 at 5:58 pm
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Hi Chris,

How good to hear you didn't suffer major heart attack damage...and that you are now determined to educate yourself on this vast topic of female cardiac world. AND you live 25 minutes from a major Heart Center! wow

I'm just another American women on the heart problem journey. When I found this site and began to spend serious time reading the posts, I realized pretty much nothing had changed in the 13 years since I'd had life imploding heart attacks. Women were still showing up daily here with the exact same questions, being told the exact same WRONG things I was told back then, trying to cope with mild to horrific challenges, many created by the health industry supposed to (and billing for) offer ethical healing practices.

I stay on this site at least several times a week or more rather than straying to FaceBook or blogging because I want to keep up with the trends in what is happening to women across the US. They all show up here in some form or other and sadly, every single day. Every day we get new women joining who've been discharged from a hospital cath, bypass or cardiac testing pretty much completely clueless, mystified by the brusque ways they are being treated.
It seems important to me that some of us stick around to help them in some little way...let them know they are by no means 'crazy' because they have to depend on a medical industry that isn't particularly patient oriented. It has been a terrific learning experience to find this unique discussion board...the learning curve is fierce. Every day I pick up new things still.

When I speak of 'we' and 'us', it is because that is how I am thinking of American women in regards to cardiac treatment overall. Nothing happens for women in this country that we don't fight for. Including, taking responsibility for learning about ways to help ourselves in our lifestyle choices and cultural pressures.

I'm just a lady who wants to help and stay continuously on the education curve. Yes, medical culture cost me probably decades of life and ensured my daily quality of life would be quite low. No way I am going to sit back and take that now that I am seeing it happening to other young women and then described as 'rare'. I'm not able to believe that for a minute. As technology/diagnostics improve, much will come to light in time to prevent women from life imploding 'health bombs'.

Like you, I've found the women on this site offering info on precisely what I need at the moment, or kind words, or virtual helping hands when there is nothing to do but get through it. Mostly, they are great listeners, empathic and practical too.

take care,
Jaynie

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• By NewAllie
• Posted July 30, 2009 at 6:22 pm
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Dear Jaynie,
I've been meaning to write about this for awhile, but thionk of it lying in bed at night and not with the laptop on my lap. Just a residual pumphead oversight perhaps! I am so grateful for everyone who has stayed months and even years after whatever "event" first brought them here. While it has been wonderful to hear from those fellow newbies, I received tremendous support, relief and encouragement from those who had years on me, yet obviously felt nothing but compassion for those of us fresh from the OR or cath lab or doctor's office. So, thanks Jaynie and Lidia and Dianne and Rose and all the rest of you who stayed.
After just a few months, I no longer consider myself a newbie. I'm getting comfortable in my new skin (and it's grayish shade). I've learned more in those few months than the previous ten years.
And I thank you for it. Love, Allie

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• By Kennarina
• Posted July 30, 2009 at 8:10 pm
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Hello Chris

This is a particular peeve with me: women make up over half of heart patients, yet only about one quarter of cardiac research participants. While for decades it may have been tempting to explain away by assuming that the (male) researchers were just too clueless to include females in their studies, it's actually way more complex than that.

Even thought in the past several years, research funding has actually been tied to gender balance in participating subjects, researchers are still having trouble recruiting and retaining female subjects. Women are NOT SIGNING UP FOR CARDIAC RESEARCH.

An interesting example of this is in emerging research on the usefulness of cardiac rehab after an MI. Turns out that North American MI survivors have a high dropout rate in all cardiac rehab programs across the board compared to male survivors (who have a high rate of rehab program compliance and completion) - so including women in these studies means it's just way harder coming up with gender balance in participants!! It appears to be a double-edged sword.

And not volunteering for research participations is not just because we are too busy taking care of everybody else! We DO come forward to volunteer for hormone or breast cancer trials and studies - but it's women themselves who somehow perceive heart disease as a man's problem only, so cardiac research lags far behind other gender-balanced research, in spite of recent efforts by your National Institutes of Health, for example, to tie gender and socioeconomic balance in study methodology with further research funding.

This reluctance of women to come forward to participate has deadly ramifications. We'll continue to see the same diagnostic procedures and the same treatment options that have been largely researched and developed for men (and may work pretty well for men!) but not for women, unless more women step up to the plate and pro-actively decide to participate in cardiac research in order to advance knowledge of women's cardiovascular diagnosis and care.

I now urge every woman I know to consider volunteering for cardiac research, and support programs like The Heart Truth (in Canada this program focuses on researching women's heart disease) and I write relentlessly about gender differences and this topic.

Anybody who lives close to a large cardiac centre or a hospital that does cardiothoracic surgery probably lives close enough to conveniently participate, yet few women even know if cardiac research is going on in their cities.

There are also websites like http://www.nlm.nih.gov/databases/alerts/clinical_alerts.html that list current clinical trials and research projects - including cardiac trials - looking for participants.

We have a long way to go, ladies.... :-)

XOXOXO


http://www.myheartsisters.org

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• By Linda_RS
• Posted July 30, 2009 at 8:59 pm
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Just looking at the number of women who join this site daily reveals how wide spread the problem is. And yet, I don't see nearly the public attention that other conditions have.

I am in favor of many of the suggestions that have been made on this site to educate the public and the medical community... I personally feel responsible for sharing my story with the hope that another woman won't have to experience the same. I would welcome opportunities to share outside of my personal circle. Any suggestions?

Linda

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• By martzj
• Posted July 30, 2009 at 9:10 pm
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Hey Allie,

You are definitely no longer a newbie. Glad you came here. You write interesting perceptions, from a compassionate viewpoint. I'm too tough skinned by 15 years of hard core heart life sometimes to remember how raw and strange it all is in the beginning. Happily, there are women coming from many different angles here.....mine tends to be more practical and to the point at times. I try not to be too scary : O

take care and try to turn more pink-ish : )
Jaynie

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• By iowachris
• Posted July 31, 2009 at 12:30 pm
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Jaynie, thanks for sticking around on this site. I was one of the scared and lonely people who got on here a couple of months back.

You and many others where there for me. Thanks!!! Even though I am lucky that I live near great heart centers doesn't mean that they are educated on care of women. You all were there when I first got online a couple of months ago because I was frightened and hurting from an infection and fluid buildup.

When I was released from the hospital and given the "go ahead" from the heart surgeon - I was clueless as to what "go ahead" he meant. Go ahead with life because I fixed you, go ahead with rehab, or go ahead and start driving again. Yeah, yeah, go ahead and eat healthy and exercise. I have been eating healthy for the past 12 years and I do exercise.

Then I'm assigned to the non invasive cardiologist for routine care. He's a darn pill pusher. I tell him I'm still in bad pain and he pushs anxiety meds at me.
He doesn't really even look at me when he is talking - his eyes are in my chart. I don't like him - I'm requesting someone else on my next checkup.

I have been educating myself online about women and heart disease. Like I said, I come to this site for moral support and also have learned about HD from all ages. Honestly, I did not know there was so many things that go wrong with the heart. Heck, I didn't even know what a stent was until this year. Nor why some heart problems are non invasive and others are.

Kennarina,
I am a firm believer in clinical trials. I just wish I can find one that fits my cardio problem. I do like the government database of what is out there in trials.
I want to be one of those heart patients on the news that have her stem cells released back into the heart. But, I have to educate myself to try to figure out even if I could be part of that research.

Thanks everyone for being there for us.
Chris

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