Feb 01, 12 04:07AM
|
0 comments
Pull out those red shoes, that red dress, or your flashy little Red Dress pin. February is Heart Month! A Heart & Stroke Foundation survey reveals that Canadians are not making time for healthy choices, which is contributing to the frightening fact that cardiovascular disease is the #1 killer of women, and the cause of one in three deaths in Canada. This year, the Foundation is urging us to "make time now, so we can have time later". Their short-term goal is to have Canadians take one million heart-healthy actions by the end of this month in order to "Make Death Wait".
Comments
To add a comment to the original post, click here.
You must be signed in to post a comment.
Sign in nowHi Mirjami – you are now a longterm survivor of your triple bypass. Congratulations! You’re right, most of us know nothing when we have our first cardiac event, and then suddenly we get the opportunity to learn A LOT! I’m doing well, thanks for asking.
Oddly enough when I started my cardiac rehab a year ago it was vastly more women than men in the class. 10 people…9 were WOMEN! Poor old guy never knew what hit him lol. The youngest women were myself and another woman both 47, the rest were mostly in their 60′s and 70′s.
Late for a response but BMI is often out of kilter for fit people because it is a calculation based on a certain percent of body muscle weight. Find a place where you can get a percent body fat test and that will give you a better sense of whether or not you are ‘healthy.’
Thank you Carolyn for these 16 things. I need a bonk on the head to remind myself to take care of myself first. This is a great blog. You always provide thoughtful and intelligent information. Thank you,
Chris
Very good column Carolyn. Keep bonking us on the head!
Okay, Lauren – I will!
Yes, we all seem to need a reminder to take care of ME FIRST sometimes! Thx Chris!
Thank you for the bonk on the head.
You’re welcome, Sandy!
Thanks for the reality check. Sometimes it gets confusing but this helps keep it in perspective.
Thanks for your comment, Susan.
After my heart attack, there were times that I joked about sounding like a two-year-old who’s just learned a new word: NO!
It seemed like every time I turned around, I was having to take a firm stand and say “No,” and finally put my own needs first.
Almost three years later, though, I find my self-discipline slipping and I need the reminder that NO is not a bad thing to say. Especially as someone born in the Southern United States–we Southern women are raised to be polite, to not talk back to our elders, to call people “Ma’am” and “Sir,” and one of the unspoken messages of that kind of upbringing is that it’s not polite to say “No.”
Well, it’s not exactly polite to fall face-first into the bowl of potato salad at the church pot-luck, either, so NO it is.
Laura, that image of you doing a face plant into the potato salad is not a pretty sight. So keep saying “NO!”
Carolyn, I’m fortunate not to have had a heart attack (just an A-fibber who’s had three ablations), but I really get a lot from reading your posts. Especially this one. It’s a reminder to appreciate what we can still accomplish. I’m not sure I’ll ever be able to forgive dismissive healthcare professionals, however. Any suggestions?
Hi Campy – I’ve had both the most wonderful AND the most dismissive health care professionals, all at the same hospital – including the E.R. doc who misdiagnosed me with acid reflux in mid-heart attack and sent me home. It’s not so much that I’ve “forgiven” him as much as I’ve just decided to move on and focus on what I am able to control these days. I could stay justifiably pissed off at this guy forever – but that would not be good for my heart, right?
I used to read Alexander’s Terrible, Horrible story to my children years ago, too. Thanks for bringing back this fond memory! It still has wisdom for adults, too.
Congrats! Wow! Ladies Home Journal is a huge magazine!
I still love that story too, AussieGal, especially since it doesn’t have one of those happily-ever-after endings – just like real life.
Thanks, Junie.
Hi Carolyn Thomas, I don’t know that sugar is so dangerous. I have to be more careful.
Thanks B.
Dear Carolyn,
Your post inspired me to send a link to 4 dear friends & give them “homework” for our next date night. I requested they read the post & report which of the 16 things they are doing and which ones they are not. The menu of the evening is now “heart healthy” & you can be sure there will be lots of heart healthy wine being served!
Seriously Carolyn, I look at my dear friends (all in their late 40′s and early 50′s) & their risk for heart disease is terrifying! I hope to be able to complete the assessment for each one of them or at least encourage them to go on-line & complete in private. Thanks for a thought provoking and motivating post.
As the nurse in the group I am trying to lead by example & have successfully made some much needed changes in my life. Keep up the amazing work.
Wow! I love your idea, Paula. Should make for an evening of lively discussion. Would likely work best, however, if each one does her own “assessment” (’cause nobody likes a list of their shortcomings handed to them!) Your heart healthy menu suggestion sounds perfect for Heart Month! Good job!
cheers,
C.
I am 44 years old. I have been experiencing numbing of hand and arms, indigestion, fatigue and pain in my neck, shoulders and behind my left shoulder blade area. These symptoms are really scaring me. I went to my Dr. And he told me that I just had indigestion and that I was probably just sleeping wrong. I know that I have a heart murmur but I cannot get rid of the above mentioned symptoms. Any suggestions?
Rhonda, these symptoms may or may not be heart-related, but at this point you just don’t know. Something is causing them – if it’s indigestion, what course of action is being recommended and is it working? Ask your doctor for a referral to a cardiologist. Be persistent.
[...] to relate to. If most of your company consists of young females, invite a young female to speak. Here are a few survivor stories to give you a better understanding of what you can expect to hear. [...]
As a graduate of the 2009 WomenHeart Science & Leadership Symposium for Women With Heart Disease at Mayo Clinic, my thanks for everything that you and all of our heart-sisters from that first class started and accomplished! Tomorrow I will be wearing red for myself and all of us.
Thanks, Icha, for leaving your nice comment! Happy Heart Month!
Another informative, invaluable piece, Carolyn – Thank you!
I will re-post & utilize some ideas during my WomenHeart @ Work presentations this month!
Cheers!
Steph Hammar
Hello Steph – thanks for passing this info on to your workplace audiences. Good luck!
cheers,
C.
Great post. Thanks!
The truth is this is cute but when you have a mountain of stuff to do in front of you and lots of house stuff to do it is not very funny. I did the same last week, I sat and cried with what I wanted to get done but cannot get myself up to doing it. I’m one month from surgery and I also have a lot of arthritis pain. Heart surgery doesn’t help that. I am hoping now that the holidays are over with I will be able to not be so tired and painful.
Cheers, Rae
Hi Rae – you are in VERY EARLY DAYS still. This is the post-op stage when all we want is to feel “normal” again, even when our bodies are clearly telling us to rest and recuperate instead. LISTEN TO YOUR BODY! – that “house stuff” will wait, believe me.
Take it easy . . .
C.
Excellent informative site – I’m so glad I stumbled across it whilst looking up the difference between indigestion and heart problems!
Thanks Margaret – welcome to Heart Sisters!
This is really helpful. I have read as well the other article in this website about how it really feels to have heart attack and I find myself really taking down notes; this is because I don’t want to lose a loved one because of a heart attack. Thank you so much for sharing.
I haven’t even read past the first paragraph yet, Carolyn — I’m laughing too hard!
Also, what planet does this person live on, where doctors have a laser-like focus on women’s heart health? Because that’s a planet I’d really like to live on, and so would millions of other women.
Still laughing,
Laura
Yeah, I’d be happy to just go VISIT that planet of his . . .
Good Carolyn! Put on my FB page!
Thanks Lynn!
As matter of fact they eat a lot of bread and potato in the Eatern Europe, specially in Ukraine and Russia. In the past it was difficult to get anything else, so it was bread for breakfast, lunch and dinner eaten with soup, salami, bacon.
It happens to a younger population too so that’s where it is connected to the thinking that nothing really happened and it tells that our way of life needs to be changed, for the better and if possible. That’s what I get from this video and we need a way to have healthier and more fulfilling life in order to prevent any disease from happenning in the first place. But, we’re not living in the ideal world and we have to go to work, have some nice amount of stress there, eat whatever is available if we have time to eat at all, and keep up with all the bills and troubles at home. So, it can be quite hard to, for example, quit smoking and live healthy in such life I guess?
I had an angioplasty last year for unstable angina that was found to be a 99% blockage (LAD), so it wasn’t optional and I did talk to a heart surgeon at the time to see what he recommended – though I was a bit drugged up by that time. When I first met with the cardiologist and learned of my issue, I was in a panic over the procedure and my cardiologist kept insisting there was no reason for me to be upset and angioplasties are very common, they do them all day, low-risk, etc.
I was all alone and crying nonstop for about an hour before they started the procedure and he didn’t think anything of my anxiety, just kept insisting that it was going to be fine and I was over-reacting.
I have a new cardiologist now. But I’m a bit surprised to read of the risks involved, as these were not presented to me when I was being admitted for an angioplasty. They made me feel like it was the same as having a root canal really, but less painful.
Hi Carolyn,
I understand that a patient with a 70-80% blockage may have equal footing with just using medication with stable angina and their outcome being somewhat the same as those having angioplasty and stent. Very good research “IF” you are stable, the operative word being stable. I can see a doctor taking time with a patient in this condition.
In saying that, I know of no medication that works right away. They can give you something to break up a clot, but I know of nothing that can instantly remove plaque or make a collapsed artery open. Nor of a drug that will make it stay that way until the heart heals. I fully understand the need for all of this research but at what cost. Something of this nature doesn’t effect just those with a small amount of blockage but it will effect us all. I truly understand that there is always a margin for error, and that we have doctors that are only in it for the money. Btu it has always been my understanding that ruling on things of this nature hurts the good as well as stops the bad.
I had been suffering an AMI for just about twenty four hours. I fully understood what my cardiologist was saying, the thing that threw me off was my having a HA. I didn’t just have a HA, I died and I am now living with CHF but I am living. I never want a doctor to have to think on if I truly need this form of treatment or if a tiny piece of chicken wire will save my life.
True I didn’t know all about a stent at that point but that was not a time to go into a discussion about the stent. Sometimes we have to trust and I do mean TRUST someone other then ourselves. Heart medicine is not an exact science and no one is perfect. But I want you to look at the stent in terms of science.
Chicken wire/stent both are metals. One is outside in the elements, the other inside a blood vessel. The man who sold you the chicken wire can not tell you that over time that the chicken wire will not deteriorate, there are corrosive elements in our air that will cause it. Common sense should tell you that no one can put a wire in your heart and tell you it will last forever, your blood contains far more corrosive elements than does the air. Your own antibodies are attacking it on a daily bases and each time your heart beats your artery constricts around it. All any of us can do is follow orders for maintaining it as long as possible. I am fully aware that if I live long enough I will have to under go bypass surgery. All any of your doctors are doing is teaching you how to maintain your stent so that it is later and not sooner. Simple high school science.
Robin
Only a physician who has never actually been in your shoes (or rather in your flimsy hospital gown) while experiencing frightening cardiac symptoms would ever dare to describe your response as “over-reacting”. See more info about this very common problem of doctor-patient miscommunication at: “Do Patients Really Hear What Doctors Are Telling Them?”
You make a good point here, Kaylen, about the difference between “stable” (symptoms come on with exertion, go away with rest) and “unstable” angina (symptoms come on more frequently, more intensely and even when at rest). Current practice guidelines do not recommend angioplasty/stenting for treating stable angina.
Hi Robin – please read my response to Kaylen for the definition of “stable” vs “unstable” angina. My (limited, patient-only) understanding is that the degree of blockage does not necessarily define stability.
Clot-busting drugs (called thrombolytics) are actually demonstrably effective in dissolving clots in coronary arteries. For example, an analysis of the National Registry of Myocardial Infarction found that women treated with the clot buster tissue plasminogen activator (tPA or Activase) were twice as likely to survive compared with those women studied who had not received clot busting drugs.
You might also be interested in the work of cardiac researcher Dr. Rainer Hambrecht of Germany on the superior protective role of regular exercise vs angioplasty for heart attack survivors. In his 2004 study published in the journal Circulation, he found:
“Nearly 90% of heart patients (non-angioplasty) who rode bikes regularly were free of heart problems one year after they started their exercise regimen, compared to just 70% of patients who were problem-free after undergoing coronary angioplasty instead of exercising.”
In 2009, Dr. Hambrecht presented findings from his five-year follow-up research to the 2009 European Congress of Cardiology meetings, confirming his earlier results that regular exercise training is superior to angioplasty at preventing subsequent cardiovascular events. He said at the time:
“It’s difficult to convince people to exercise instead of having an angioplasty, but it works.”
More on this at: “What Prevents Heart Disease Better Than Any Drug?” –
Also, I believe that it’s counterproductive to say things like “I died”. No, you did not die, or you would most certainly not be reading these words right now. You did survive an acute myocardial infarction – congratulations!
Thanks so much for your kind words, Lynn. Your mother must have died at a relatively young age. I was just reading this yesterday: “We may have lived enough years to be an adult, but we will always be a child in relation to our parents. Even if we find ourselves ‘parenting our parents’ before their deaths, it is the parent of our youth and childhood that we bury.” Isn’t that the truth?
BTW, If I took your friend’s good advice, I’d have nothing in my fridge but liver and brussels sprouts.
hugs
C
Brilliant. Sums up perfectly what our family experienced last fall after my dad’s death, we just could not seem to stop these crazy cravings for sweet and starchy comfort foods. Luckily for our heart health and our waistlines, they did not last long and we soon got back to “normal” eating. Funny thing was that my father had been a lifelong health nut – he would have been very disapproving of our sudden crazy menu choices.
My condolences to you on the passing of your mother. Sweet photo of her and her Easter “paska”.
Thank you for your comment, Karinne. It seems that “bereavement eating” may indeed be a common phenomenon. I too love that happy picture of my mother.
People deal with sadness and stress differently. While some eat more, others eat much less. While it’s sometimes hard, it’s important to be aware of how we are treating our bodies during difficult times.
Quite true. I was very aware – I just didn’t care.
Oh boy, does this hit a nerve with me! I have endothelial dysfunction with no risk factors for heart disease and recently had surgeries to repair an aortic aneurysm which could only be explained as a cellular weakness there since birth.
I have no heart disease, live(d) a very healthy life and there is no “fix” for my dysfunction. When I encounter people (and there are so many) who have the option of improving their heart disease by making healthy life style choices and still carry on the old path, I see red, no pun intended.
How do we convince a culture that has come to depend on instant everything – from food to gratification to cures – that ultimately we are responsible for our choices? Why is it acceptable to sue McDonalds or the tobacco company when your choices produce unwanted consequences? Some days I struggle to walk 2 blocks and I love exercise so I know that change is hard, but I believe that too many people have embraced the idea that when something is too hard just don’t do it.
I continue to live healthy because even though it won’t reverse or cure my condition it helps me manage my symptoms, boosts my overall health and will enable me to really “live” my life for longer.
Thanks for your comment, Lauren. You ask some important questions – I don’t know if we have any answers to them yet, however.
[...] Some women experience gaslighting when actually in mid-heart attack (You can read the article from HEART SISTERS [...]
Carolyn – This has nothing to do with your current post, so forgive me, but I’ve just read an article recommended by a friend on FB. Here’s the link.
I’m interested to know what you think about it.
Don’t trust people. They’re able to greatness. There isn’t any tips for success. It does not take response to preparation, efforts, and gaining knowledge from failure.
Hi Deborah, yes, I’m familiar with this article. Inflammation is widely considered to be one of a number of likely culprits in heart disease, although Dr. Lundell’s illustrations seem a tad extreme.
It may also be relevant to note here that in 2008, the Arizona Medical Board revoked Dr. Lundell’s license to practice medicine, the fifth of five previous regulatory actions the Board had taken against him. Always helpful to “consider the source” in All Things Scientific.
Last fall at 42, I survived the “widow maker”. I was in the cath lab within about 55 minutes of the onset of symptoms. I was extremely embarrassed to call, but if I hadn’t, I would be dead. Because of the quick timing, I was fortunate to have very little permanent damage. Always call!
Great advice, Jodi! Your quick response time is a good role model for the rest of us – 55 minute “door to balloon” time is awesome. Stay healthy…
Hi Carolyn,
I didn’t wait, I have asthma and I was having the symptoms of an asthma attack. My doctor told me that when I woke unable to breath to just use my inhaler, something in my head told me not to, that something was wrong. I waited from 1am until 7am to call 911 and no one answered. I got my sister to take me, had I listen to my doctor I would not be here. I have massive heart damage.
Robin
Robin, it sounds like you DID wait – at least six hours before making that 911 call.
I read interview and I think. That you are one lucky woman, you are also lucky that your family and friend’s gave you all the support that you needed, am sure that this recipe that you have given out most be great.
PS Jenn – just got an email from a reader who suggests giving a light spray of Pam or something similar just before baking to give a shiny and slightly “crispy” touch.
Carolyn, my doctor said it was asthma and not my heart. I was told to use my inhaler to relax my air ways. When I used the inhaler I would fall into a deep sleep, I didn’t use it that night and yes I waited. Asthma isn’t an emergency.
Robin
I feel similarly about “new normal,” a phrase so many heart attack survivors use as a benchmark of recovery. Just the idea of it mourns the loss of a state of being that may or may not reflect who we are (or were). The “new normal” implies a negative state that the patient is forcing herself to embrace.
Acceptance of ourselves “warts and all,” as you say, is a lifelong challenge in itself!! Surviving a heart attack definitely heightens our awareness of who we are and how we want to live.
As always, enjoyed your thoughts, Carolyn, and insights of Dr. Holland.
Thanks Katherine,
For me, “new normal” is actually an accurate term to describe my life now compared to my life, BMI (before heart attack). There is no doubt that what I’m able to do now is far different, so “new normal” is not so much a benchmark of recovery, but a simple statement of reality. I could grieve those daily losses (and admittedly sometimes do!) but it seems healthier (physically, mentally, emotionally) to just try to accept this “new normal” – as Buddhists say: “What is, is.”
cheers,
C
I had exactly this dx with my first pregnancy too – never gave it another thought once Baby #1 was delivered,everything just fine afterwards. Well until my STEMI/double bypass surgery 22 years later that is. None of my cardiologists even asked about my pregnancy history. Thx for this, I’m going to folow up more on this important and under-appreciated topic.
This made my day. I am DEFINITELY happier now than when I was 18. Would not turn back the clock, no sir!
Thx for this, Miss Carolyn. Wonderful perspective here esp for all of us aging boomers. You’re as young as you feel, right? Love your site here!!
Good for you.
I had the opposite experience with my dentist and his hygienist. They are honestly interested in me, how I am coping with a bad cancer diagnosis and treatment. They are so careful not to cause any pain or discomfort unless necessary (even numb my gums before a novicaine shot or rub something on gums before cleaning). They see ME when I am there. I am more than grateful to them, they soothe my soul.
Your experience is just as it SHOULD be for all of us, isn’t it? Your dental staff are role models for other health care providers.
Thank you Outlet Gal – yes, in more ways than one, apparently!
Oh Carolyn! It is terrible to have such experiences.
My dentist is an angel. He always asks me at first: How is your heart? Have you got new stents? He makes the hygienic procedure himself once a year in my case.
But not all doctors and nurses are so nice.
We have a cardiac center about 20 km of here, but I refuse to be brought there once again having had 9 days of rude and unfriendly nurses. As I had my heart attack because of a stent thrombosis 4 years ago, the ambulance came, wired me with EKG and wanted to bring me to this nearest cardiac care, because it is the usual practice. I cried: “I do not go to this hospital. They are so unfriendly and terrible. I prefer to die than go there.”
The doctor in charge looked at me as if I were a fool. My hubby said them: If you do not bring my wife to the cardiac care she wants to go, you can took all the wires away and I bring her myself to the other hospital. The problem is that the the doctor has to order a helicopter to bring me to my favourite hospital, because it is over 100 km away from our village. This has been the case 3 times.. Till now we have always won. But it has always been a matter of dispute.
Usually my hubby brings me to my cardiac hospital 100 km away from here, when my family doctor orders it. I have only to go to my family doctor and say that I have unstable angina. The cardiac hospital is one of the best in Germany and I am happy to be a patient there.
In the case of a heart attack ( when I think it is one) we have to call the ER and this has always been a great dispute. I hope I will never bee alone at home and have to call ER.
AT the moment I have no problems with my heart and I am very happy about it.
Greetings.
Mirjami
Hello Mirjami – I’m so glad your heart is doing well these days. Having to debate where the ambulance should take you must be horribly stressful in the middle of already stressful cardiac symptoms. Most patients just go where the nearest hospital is, despite the quality of care.
Thanks for sharing your perspective here.
C.
I was excited to discover Heart Sisters. I wanted to thank you for this wonderful read!! I definitely savored every little bit of it and I have you bookmarked to check out new stuff in your heart site.
[...] For more on this, read How Does It Really Feel to Have a Heart Attack? Women Survivors Tell Their Stories. [...]
Right-on Heart Sister! I’m fortunate that my dentist and his assistants know me well and focus on my care while I’m in the chair (hey-that rhymes!). However, I’ve had some absolutely awful experiences with cardiologists.
-While taking my history (the first one I’d ever had with a cardiologist), the Dr. interrupted, telling to be quiet and let him talk.
-In preparation for a trans-esophageal echocardiogram, the same doc smirked and giggled when I gagged.
-An electrophysiologist allowed a doc into the exam room to chat about another patient and then took a phone call from someone else.
-The same electrophysiologist called to scream at me after I ended-up in the ER upon being overdosed on warfarin post-ablation.
-After I told my primary care physician about the smirking, giggling cardiologist, the cardiologist cancelled a pre-procedure appointment at the last minute and then fired me at the rescheduled appointment. Hilariously, one of the things he said during his 20 minute rant was that I shouldn’t tell my friends how he’d disrespected me.
Campy, the part that disturbs me about this list (more than the screaming, the smirking, the giggling) is: “…allowed a doc into the exam room to chat about another patient and then took a phone call from someone else.” A perfect example of the patient as merely an invisible piece of meat on a slab…
Carolyn,
Any discussion on how they differentiate patients with MVD who likely have plaque build up on those small vessels and someone like myself and others we know who have 0 risk factors meaning no high blood pressure, very good cholesterol numbers, exemplary healthy life styles etc. In essence have no disease, but rather a condition that to me seems more akin to an auto immune disorder.
Other than the patient with MV disease possibly being able to improve their condition with better life style choices our treatment plans would be the same I guess, so maybe that is why no “splitting hairs”? I should be content that there seems to be a greater awareness of MVD in general, right?!
Carolyn, Thank you for writing on this topic!
I would like to suggest that you revise this posting in the main body, to include the video made by Dr. Habib Samady at Emory along with patient, Joan Jahnke. It supplies even more validation. In the description as “treatable”, there is debate on how the outcome is depending on the “stage” of the disease.
According to my own cardiologist, some women experience improvement with exercise, but as you know, some women (even former, young, athletic individuals who were in their prime when the symptoms arose, find that exercise worsens their function. (Sort of like cancer treatment…you’ll be just fine – if the treatment doesn’t kill you first!). MVD has a higher rate of MI and sudden cardiac death (SCD). The reason I presume is oxygen starvation to the heart. Nitro and Xanax are my trustiest tools. The vessels can become “irritable” and till they are settled down with adequate medication, they keep sending symptoms of shortness of breath, chest pain and others.
As a first hand patient with experience, I can say that with exercise, I can spend my energy that way (with meds) or I can spend it living life. Hard to have energy for both in my experience. Even with exercise, I find that emotions (happy AND sad AND angry AND stressed) can lay me out flat … E.R.-style flat. That doesn’t make me “crazy” though, the “anxiety” presumption.
A recent article on meditation demonstrates (in my own opinion) why it helps cardiac patients and MVD patients:
Note the focus on the insula. The insula is the “traffic cop” of the autonomic, physiological and emotional systems in the brain. It touches the amygdala – the seat of emotions. Per WISE researcher Dr. Richard Cannon in 2004, differences were noted in the insula response of MVD patients vs standard cardiac patients; however the research was not followed up. It was as if the insula (and I can’t remember if it was the left or right (I think right), showed that it wasn’t properly responding as compared to “normals”. Dr. Cannon postulated that this might have to do with abnormal pain “perception”.
Amateur that I am, further reading that I did of a textbook chapter on the insula, written by Dr. Bud Craig – Barrow Neurological Institute, convinced me that this is the primary source of where our body symptoms and emotions and cardiac symptoms is “off”. How that comes about and why is still an open question. Is it heart or it is brain? As the famous old commercial goes: It’s two, two, two mints in one! It’s both. If you have an hour, watch Dr. Craig’s presentation to Swedish neurological doctoral fellows – about a one hour lecture. It ties together after about 30 minutes.
Last night, I fell asleep with my hot water bottle on my lap. I awoke with pain on my lap, shortness of breath and chest pain. That was not “emotional”. It was an abnormal cardiac and vascular response to my pain. My brain sent the brain alarm of the burning hot water bottle, but signals also went to my vessels and heart, as it tried to cope with this unexpected demand. Normals would just feel the burning of the hot water bottle and throw it off, right? This was not “emotional”, because I was asleep!
Understanding this helps you understand WHY the meditation can help – it strengthens the insula! Ditto for EMWave training. You can help to compensate behaviorally and not just with medications. But you do need the medications in hand. It can be too life threatening to ignore those.
As the last piece of my commentary, let me direct people to EMDR and Francine Shapiro. For those with a baseline of all emotionally provocative history in your lives – perhaps abuse, or stress, or foreclosure, a traumatic E.R. or hospital experience (or many of them) that have left you feeling that you were alone and dying, or any other emotionally demanding experiences, EMDR can neutralize and vaporize those, so they no longer “consume” emotional space in your head – and the function of the insula. That can be a good thing when you are “compensating” for your MVD or cardiac dysfunction.
Read this New York Times column, written by Dr. Shapiro:
It is an ongoing column and there are several other columns. In my own experience, EMDR helped rid me off the baggage of this, to free up my cardiac “space”. This can also help with “little t” trauma – nothing earthshaking, (maybe being teased in school) or whatever stick in your craw. It can be miraculous and freeing. LIfe changing. Find a therapist who is certified here.
Thank you, Carolyn, for the opportunity to share my own thinking on this subject.
Hi Lauren – by now, my personal (and very unscientific!) observation is that there is simply no such thing as somebody with “zero risk of heart disease”. It seems every week, we’re learning of yet another culprit identified by scientists that can be added to the growing list of suspected cardiovascular risk factors (consider pregnancy complications like pre-eclampsia, for example, which we’re now being told is linked with a 2-3 fold increased risk of subsequent heart disease, usually years and even decades down the road). Last week, sugary soft drinks were implicated, too. Next week, it will be something else, too.
If you watch the Emory/Joan Jahnke video, you can appreciate the causal mystery of the origins of MVD: is it viral insult? Toxins? Hormones?
One more clarification, Carolyn ~ My comments (BELOW) about the insula are related to MVD dysfunction or symptoms vs standard cardiac patients. There is NO information I have that indicates MVD originates in the brain. I am making the point that it is possible that along with direct cardiac risk factors, there is a brain interplay component that demonstrates symptoms that seem to not make sense, given the “gold standard” angiography model giving us the “you’re fine, it must be in your head” result.
On the lipid front, I have been diagnosed with LP(a), as has Joan Jahnke. This is a genetic predisposition of lipid and atherosclerotic accumulation and MI/Stroke risk. Even though she and I both have clear coronaries as seen in a cath, we both have demonstrated abnormal endothelial function with the (special) provocative portion of the cath.
I have had no children, so pre-eclampsia didn’t “cause” my MVD nor reveal it. My father did have CHF and type II diabetes, so there is a CAD family history. I suspect the LP(a) came from my mother’s side.
As we all have wondered about, there is no full universal terminology for this dysfunction or syndrome. It can be titled endothelial dysfunction (which pops up as terminology in a variety of disease processes), it can be microvascular dysfunction, microvascular disease, ischemic heart disease, microvascular ischemia or microvascular ischemic disease, small vessel disease, or the old standby, Syndrome X, ad infinitum.
Thanks Mary – you are a true student of this mysterious diagnosis. Not surprising for those of who live with these symptoms day in and day out. I admire your scholarly zeal.
The Emory/Jahnke video, by the way, was already included in the recommended links list at the bottom of my post.
Speaking of which, thanks for the links here, including the meditation study (albeit small – just 23 meditators studied, average history of meditating = 20 years! – which means that if I start meditating today, I might start seeing some good insula folding numbers by the time I’m 80!) and the info on EMDR (Eye Movement Desensitization and Reprocessing), a therapy that’s been successfully used in patients with Post Traumatic Stress Disorder.
And as we MVD patients know, anything that’s shown to be helpful might just be very good.
Well, time to get cracking, then
!
I can’t hear you . . . I’m meditating . . . .
Thanks for posting the very interesting video with Dr. Kaski. It was nice to see CAS recognized. All of my six heart attacks have been due to Coronary Artery Spasm, which involved spontaneous intense angina, ST-Elevation on ECGs, and some MIs which were caught naturally on angiograms.
I never had to have coronary reactivity testing – it was a very obvious diagnosis. I have been told by two cardiologists that I may also have MVD. One time an interventionist tried to stent an LAD spasm, it spasmed even worse, and they could not get their equipment/guidewire back out of my artery. After an hour battle with about every type of vasolidating drug available administered via IC or IV, it finally released. Quite traumatic to say the least, and was not a “stent and go” procedure but a few days in ICU & down before heading home. Yes, tons more research needed on CAS, MVD, SCAD for sure.
Many thanks to Dr. Kaski and my doctors at Mayo (and Emory, etc.) for their dedicated work and desire to find answers for better patient outcomes.
Yikes – what a traumatic experience you describe with your spasm. Thanks for reminding all of us that these are patients being treated here, not diagnoses.
Perfect. As I read this I cried, remembering my own pain, fear, prayers and thankfulness for the people who reacted quickly and with gentleness and love. I was thankful for the ER nurses who acted so quickly, the EMT who rode to the cardiac hospital with me and held my hand, my surgical nurses who were so gentle and soothing when I was so scared, cold and alone, and the ICU nurses who took care of me that night and into the next few days as I struggled to deal with what had happened to me.
I was 39 years old and until the day I leave this earth I will never forget them. Thank you for the reminder.
Hello Marisha and thanks for sharing your own experience here. Those who care for us with skill and kindness during such traumatic events are angels!
Thank you for sharing this, keep us posted with more relevant articles.
Thanks for your comment, Joyce.
Carolyn — I am so glad you wrote this! I seek out every bit of knowledge I can on heart disease. I had no idea that had a fancy name! Sadly, none of it was passed on to me from the medical community. The medical treatment for my symptoms I received was stellar and absolutely saved my life. After that, everything I know I have learned myself.
Hi Jodi, and welcome to another “information flâneuse”! I was just reading an interesting article this morning on what medicine could learn from car dealerships. Car dealers give you a business card as you’re driving your new car off the lot and say: “Any questions? Call me!” Hospitals, on the other hand, hand you a giant whack of paperwork as they boot you out the door while telling you: “Any questions? Call your doctor – not us!”
I was wondering how to describe my quest for heart-related information. Now I know…and can add another title to my business card: Cardiac Flâneuse-In-Training.
I was on your site today because I am another information flâneuse. Yes, every day, there are heart sites I visit.
Welcome, fellow flâneuse . . .
That sounds pretty impressive, doesn’t it, Campy?
My coronary arteries have been “squished” and “burned” and still I feel like something dire is inevitable any minute now. Living with sheer terror and anxiety is just becoming “normal” by now. No doctor or nurse in the hospital warned me of this post-op minefield. Thank god I found this website.
“Women patients are more likely to be falsely reassured – when in fact there really is a problem.”
This is exactly what happened to me. Thanks so much for publishing this post. You have hit the nail right on the head. Love your site.
Absolutely loved this Heart Sisters piece. When you write: “I must move from identifying myself as a ‘heart patient’ to being just a regular person again with countless facets of life, family, friends, work, plans – a person who just happens to have heart disease.” – you have nailed it.
So many of my patients somehow fail to reach this transition point, and can become STUCK in “heart patient” mode forever.
Thanks so much for your perspective, RN.
Dear Ringer – please don’t become too used to feeling this “sheer terror and anxiety”. It is NOT normal to feel this way. Please talk to your physician or a skilled counsellor.
It is my experience that all cardiac events have collateral effects on family, friends, loved ones. Most of those are “feelings”, in reality very strong emotions, and are unacknowledged by our present medical providers.
As an example, during rehab I was twice reminded that I could begin having sexual intercourse in six weeks – but never was the breast paresthesia and hyperesthesia (pain) mentioned, nor the normal fears of death during sex, nor advice about sexual positions that would be least difficult for someone with a sternotomy that is still healing.
I think that counseling should be part of cardiac rehabilitation.
Thanks for your perspective, Anne. You are so right. I suspect this is because cardiac care is largely still provided as if it were merely acute medicine – like getting a list of wound care instructions – with little appreciation for the emotional trauma that survivors can experience.
I agree – counseling should indeed be part of every cardiac rehab program, yet up to “90% of programs report having no dedicated psychology time for their patients” according to Heartwire. Dr. Kathryn King‘s research on cardiac rehab programs – and specifically women’s high dropout rate – has reported: “Many women don’t find rehab programs relevant to their needs, suggesting that women may find programs more appealing if there is a strong psychological emphasis, rather than exercise being the main focus, as is currently the case.”
I hope she gets a better response than I did; I got a blank look from my cardiologist when I told him about my feelings, then he offered a tranquilizer.
I’m still afraid, but I carry on with three stents now and another looming in the future or even a by-pass. No one wants to discuss my fears and I think this is prevalent in cases such as mine. The thought pattern is, you’ve got stents, your blood work looks good, your not ready for another procedure, yet what is your problem?
Thank you for this site.
Thanks so much for your perspective, Julia. When I was at Mayo Clinic, cardiologists there told us that few heart docs are trained in psychological issues surrounding the traumatic diagnosis of heart disease.
My own family doctor actively discouraged me from seeing a professional therapist despite severe depression and anxiety (“oh, there’s a one-year waiting list…”) until one year later when I reminded her that, had she referred me one year ago, I’d be getting help by now. Within ONE WEEK, I had my first therapy appointment. So much for those “one-year waiting lists”….) It was the best thing I could have ever done.
Moral of the story: we have to be our own health advocates!
Really helpful suggestions here and so simple. It just shows that no matter how “busy” we are each day, we can still build in easy stress-reducing exercises as part of our normal day. Thx for this great post.
This is brilliant. I love the idea of checklists – no patient should be sent home without something like this. THANKS! Love your site…
Hello Caroline. My girlfriend in cardiac rehab just sent me this article, it’s exactly how I’ve been feeling since double bypass surgery. My family was so worried about me during my heart attack & surgery experience, I had many complications afterwards & the doctors actually thought at 1 point that I wouldn’t make it.
To think that I put my family through this nightmare was very upsetting to me once I got home & started recuperating & I became determined to act as if I’m fine now no matter how I’m feeling really. When they walk in the door, I paste on my HAPPY FACE smile, everything is FINE JUST FINE no matter what. It’s been EXHAUSTING & until I read this article I thought I was the only one feeling this way. THANK YOU for this.
Thanks for sharing your perspective here. I’m glad you’re in cardiac rehab now – make sure you stick it out until the very last program session (most women drop out!) Maybe this topic would be a good one to share with all your cardiac rehab participants – you’re NOT the only person feeling like this!
I’m 45 and have been experiencing chest pain and other symptoms for some time now. I recently visited a fairly young (late 40′s) experienced cardiologist.
I went to the appointment very prepared (having done my research) because I knew based on my age and otherwise good health I was likely to be dismissed.
While he took the time to make sure I was well aware of how many studies he could quote from memory, he failed to truly listen to me. When I told him about “Heart Sisters” and how valuable I found it, reading countless stories that I could relate to, his response was, “I take sites like that with a grain of salt, the problem is women like to talk about how they feel but don’t actually explain their symptoms”.
I was speechless but only momentarily. I pushed back and told him in fact the stories are filled with descriptions of symptoms which in most if not all cases led to a diagnosed heart condition. He gave no acknowledgment and moved on.
Bottom line, he told me he didn’t know what was wrong with me but it wasn’t my heart. When I continued to push back, he talked about a test that is now available and better than a nuclear stress test BUT because I’ve already had the stress test he didn’t recommend it because the test involved a nuclear component as well. When I asked him what would be an appropriate time period to wait to safely take the newer and better test he responded by cautioning me that there is a link between nuclear tests and breast cancer as well as dementia. While there may be some truth to this, I’m all for informed decision-making.
I went to explore my heart health and left feeling like I would put myself at risk for breast cancer if I were to take any further exploratory steps. Not a pleasant experience!
Your doctor just might end up featured in a future edition of my post Stupid Things Doctors Say To Heart Patients.
Trouble is, your doc knows nothing of sites like mine and is uninterested in learning more because he already knows everything he needs to know about everything. You might forward him this (all-symptoms! no feelings!) post called How Does It Really Feel to Have a Heart Attack? Women Survivors Tell Their Stories.
Your story, Terri, is every patient’s worst nightmare. How is a woman supposed to proceed in the face of such dismissive and distressing responses from the very person she turns to for expert help when sick, desperate and worried? Right now, you just don’t know if your symptoms are heart-related or not, but something is causing them and you have the right to learn what that is. Good luck to you – please keep us posted.
Mine was a gastroenterologist. Took downloaded articles from a national gastro newsletter to appointment. He wasn’t impressed, despite my showing him the source. He said: “I only read from my trusted sources”.
Said my gastro pain, that with some regularity masks as heart pain, could be helped with antibiotics followed by an antidepressant.
I reminded him I am a heart patient and was concerned about side effects. Not to worry!
Went to pick up at the pharmacy.The pharmacist told me side effects can cause heart irregularities and high blood pressure and that I should contact my cardiologist.
Needless to say, the meds stayed at the pharmacy and the gastroenterologist is no longer my provider.
Wow! Thank goodness for your pharmacist, Leslea – and a wise reminder here about what a useful and under-appreciated professional resource pharmacists can be, especially for those of us taking a fistful of meds every day.
Such arrogant, dismissive responses on the part of these doctors. You would actually think that they believe the only people who are capable of doing critical thinking in this world have, at the very least, an M.D. after their name!
I’m eagerly anticipating your column, Carolyn. Makes me think of my first cardiologist, who despite my increasingly worsening nuclear scans post by-pass, continued to only discuss losing weight. Never did a Berkley Lipid Test, never tried other statins, but when it was finally determined I’d lost my bypass graft after about 20 months, he decided we should be a bit more aggressive! I was so angry that I had to actually lose my graft and NOW be compromised (as I wasn’t before) in order for him to look beyond my weight!
That’s when I changed cardiologists, and at my first visit with the new one, I made it clear that I was interviewing HIM because I wanted a provider who would LISTEN as well as TALK to me! He has turned out to be a ‘gem’ and I have not regretted for one minute questioning the first doc’s quality of care!
Your first cardiologist’s insistence on a (wrong) diagnosis is a great example of the “thinking error” that cognitive scientists call Confirmation Bias: “looking for evidence to support a pre-conceived opinion, rather than looking for information to prove oneself wrong”. Trouble is, for far too long, patients have felt far too intimidated to even dream of upsetting/questioning people with the letters M.D. after their names . . .
Thanks, Lynn.
Here are some of the sites this information flâneuse checks:
- Cardiology News
- Seconds Count
- Cardiobrief
- Cardiology Today
Thanks so much, my flâneuse-sister Lora – my favourite on that list is Larry Husten’s blog Cardiobrief on Forbes.
I’m a googler, too. I’ve read many articles on the doctor sites (Cardiobrief is one), about how the new a-fib drug Multaq is failing both in safety and efficacy. I’ve read on dr. blogs (admittedly less scientific and not peer reviewed) regarding doubts of safety and effectiveness of cryo catheters for pulmonary vein isolation to treat atrial fibrillation.
My cardiologist just suggested both. When I mentioned Multaq has been implicated in deaths from liver failure I got poo-pooed. WTH? My previous level of comfort with this man, due to a successful atrial flutter ablation, is now shaken to the core. At this point I just do not know how to proceed. It just annoys me no end to be poo-pooed.
Hello Allison – you have a dilemma on your hands. But, as the heart patient quoted here on this post wisely wrote about her own cardiologist: “I knew he was interested in my health, but not nearly as interested as I am. It’s his job, but it’s my life.” Ultimately, this is, of course, your choice. But know that if you do not choose his recommendations, you will be, of course, labelled a “non-compliant” patient – which is just about the worse slur a doc can throw in our direction!
I like to refer Multaq queries to electrophysiologist Dr. John Mandrola, who has this to say about this drug manufactured by Sanofi Aventis: “I’ve said it before, but I guess it has to be said again: Multaq simply doesn’t work to control AF. Nearly everybody that isn’t paid by Sanofi admits this.”
A lot of people including at my Cardiac Rehab classes have talked about this “NEW NORMAL” that I’m supposed to get used to from now on.
I hate that term. I want my OLD NORMAL back again. I don’t want to have to adapt and adjust to what seems like a stranger’s life, not my own anymore. To give in to this “NEW NORMAL” would feel like just giving up hope. I am a competent successful active outgoing business owner but since my double bypass open heart surgery I feel weak, anxious, weepy and frightened at every little twinge or pain. THIS is what I’m supposed to get used to? No way.
Love love love the extra info. Even though I had my heart attack 14 years ago, neither me or my doctor picked up on the PAD for 4 years. Surgery scheduled. As much as I preach to other women, it helps me to hear it again from another survivor.
Oh, yes. We’re far better at advising other people than ourselves, aren’t we? Thanks, Eileen!
Well it is like this for me (YMMV); I have had heart disease for 17 years, I have seen 6 cardiologists and have had three stents inserted in my heart arteries.
NONE of these doctors has ever mentioned diet, exercise or other life style changes except for taking medication they prescribed and aspirin. I told several I was on a vegetarian diet and they said that they thought it was too hard for most patients and ignored it.
I get the feeling I am another body that is on a conveyor belt – if the doc sees an obvious sign of disease when I roll past he’ll use the obvious protocol and feels he has done his job.
By the way I have never gotten a brochure from any doctor, clinic or hospital either. All the information I have is from my own research from the internet and books by doctors on heart disease. ‘
If I were more cynical I would think they wanted me dead.
Thanks Carolyn, for another wonderful piece from the heart! I will be sharing this with my hospital staffers where I have 2 support groups!
)
Cheers!
Steph
Julia, UN-frickety-frackin’-BELIEVABLE that in 17 years none of your docs have advised lifestyle improvements!!
Great! – good luck with your support groups, Stephanie.
I believe this 100%! I share my story every chance I get for the sheer shock value and the hope that someone will take it seriously and go have their heart health checked out. Julia–I went no added oil vegan after my heart attack last fall and my family doc doesn’t believe it is a good idea. In fact I received little to no helpful nutrition information other than watch your sodium and fat from anyone in the medical community. All of my information has been driven by my own research. We will see what my cardiologist thinks when I see him. If he doesn’t subscribe to the role nutrition plays in heart health, I will find a new doc!
What’s with doctors’ resistance to vegan diets for heart patients? Dr. Dean Ornish in fact actually suggests reversal of heart disease can result with an almost-vegan program (lots of veggies and fruits, whole grains, legumes, no oil/sugar/meat/fish/fowl, and very restricted low-fat dairy).
Refer your doctors to Ornish’s many published studies in The Lancet, JAMA, or this one in the American Journal of Cardiology: (Ornish D. “Avoiding Revascularization with Lifestyle Changes: The Multicenter Lifestyle Demonstration Project.” American Journal of Cardiology. 1998;82:72T-76T)
I’m going to buy a blood pressure kit today, thanks to this article!! Why aren’t we hearing more of this known intervention from the medical profession? We are hearing that we should now be buying AEDs for all public places – we should now add blood pressure kits to that defibrillator shopping list!
Hello Josie – many survivors feel just as you do as they try to come to grips with what the heck has just hit them. Nobody warns us about the traumatic emotional toll that heart disease can bring, and we can easily assume that because our doctors have patched us up, everything is fine, just fine now.
Often, this readjustment can take a long time – as Dr. Stephen Parker likes to say, a cardiac event is a “deeply wounding” psychological experience and, just like any physical wound, it takes time to recover from it. It can feel even scarier for those of us who have always been ‘in charge’ successful types – suddenly, we don’t feel so ‘in charge’ at all! Please don’t hesitate to seek professional counselling to help you as you try to make sense of all this. Talk to your rehab coordinator about local resources to assist you.
And you’ll find lots more about this here.
Hei Carolyn,
Je suis aussi une information flâneuse. I am wondering how much work you are doing with gathering all the information. I do not know any similar blogs in Germany or in my home country. All the blogs I have found are commercial and I do not like to read them or write in them.
Spring greetings. I hope you are well.
Bon jour, Mirjami. I’m a very early riser (crazy-early… 4:30 a.m. most days) which is when my brain actually functions, and that’s when I can spend 2-3 hours each morning noodling around here, writing, responding to comments, researching. Best time of the day for us flâneuses - watching the sunrise while at work! (I call this “cardiac rehab for my brain!”)
I too ignore commercial blogs, or any site selling anything (especially when run by those with the letters M.D. after their names). What I do look for in other sites is Health On The Net Code certification – a sign of “trustworthy health information”.
Happy springtime to you, too. I love this time of year!
cheers,
C.
I ask myself the same question, Alec. Why doesn’t EVERYBODY know about this?
I am just currently learning myself, I had suffered SADS this past January and they put an ICD in me. Thanks for this post it is always helpful to read more information.
Thanks for your comment here. For the benefit of our readers, SADS is Sudden Arrhythmia Death Syndrome, a genetic heart rhythm condition that can cause sudden death in young, apparently healthy people. Luckily, you have your ICD implanted now, but you and your family are still in relatively early days yet in adjusting to life with an ICD. Good luck to you!
Thank you and yes we are still very new to all of this and we are slowly adjusting.
I was wondering as well if you recommend any other blogs that I could follow, that others suffered the same or just with heart conditions??
I’m not familiar with specific SADS or ICD blogs, but if you haven’t already done so, you might want to check out Inspire.com’s WomenHeart online support community which has two topics of interest to you: Younger Women With Heart Disease http://www.inspire.com/groups/womenheart/topics/younger-women-with-heart-disease/ as well as one called All About Arrhythmias – http://www.inspire.com/groups/womenheart/topics/all-about-arrhythmias/
This was such a great article! I am a heart disease advocate because I have lost too many people to chronic conditions related to heart disease at the end of the day. I read this statistic recently. “Until an artery is more than 70% obstructed with plaque there is no reduction in overall blood flow.”
I am working now to help prevent and reverse heart disease. No more slapping band-aids on the problem calling it a cure. The first step is engagement and you really hit it on the nail on how to go about it. I am going to keep these things in mind as I help organize events myself. Ill keep you guys up to date because this post will be responsible for my success.
Katrina
I am going to look at this article too. I was a pharmaceutical rep at one time in my life and the reason that they don’t want to hear is because a lot of doctors are afraid to stand alone, they are more worried these days about billing and their lifestyle, and the GOD complex. I had a lot of ethical conflicts in the field because I saw how they treated their patients.
People need to remember that Doctors are human and they just went to school just like an engineer and a teacher (who deserves a nobel peace prize these days). Anyone could be a physician too if they had just put in the time. FYI…Not all doctors are the sharpest tack in the box…LOL. Again we are all human.
Keep looking for one until you find the right one!
Wow
Hi Katrina – that 70% statistic is indeed interesting. Yet our health care system responds more like a ‘disease care’ system, waiting for that 70% blockage to morph into a fully occluded coronary artery and catastrophic heart attack. Good luck with your heart health advocacy mission!
I think the story that begins this post (male patient with “normal” cardiac test results being kept overnight for observation while women are being misdiagnosed and sent home) is the most telling illustration of how pervasive this issue is. Thanks for your comment here.
80% of heart attacks occur in arteries less than 70% obstructed by the blockages we call plaques even though there is still no reduction of overall blood flow.