Author Archives: Cynthia Brown

About Cynthia Brown

Cynthia Brown - Strong Advocate for Women & Heart Disease Awareness and National Patient Advocate. Also an Author, Freelance Writer & Public Speaker.

Not Enough Hours in the Day or Lifetime!

I look back on the date of my last post and shudder!  UGH!!  Between my own heart health issues, a recent across-state-lines move, and advocacy, I somewhere along the line lost my way in finding the road back to my Post Page.  I apologize for that, but sometimes, life just gets into the way!

I will be conducting an overhaul of my website in the months to follow, in order to include Patient Advocacy & Education For All, so stay tuned and stay Heart Healthy!

God Bless…

Cynthia

Emotional Support from Family & Friends

One of the recurring  themes at the monthly WomenHeart Support Group meetings that I provide, is that each of us in the group is struggling with having better communication outside the group itself.  Although the time spent during group sessions are both helpful and informative, not to mention that we’ve been able to attain a unique camaraderie in our group, the issue of trying to get our spouse, family or friends to open up and have a discussion about what we’re going through, what our emotional needs are, is harder than sticking that camel-through-the-eye-of-the-needle quote in the Bible!

How are we supposed to reach our community, our state, our country, in regard to what we as women go through when it comes to heart disease, when we can’t even reach those individuals who are the closest to us – spouse, family and friends?

Is it the age-old issue of “denial,” or is it that we just live in such a fast-paced lifestyle today that our family and friends don’t have time to deal with it? 

Our support group only meets once a month…but we see our family, for the most part, every day, and our friends frequently.  What I, and the women in not only my support group, but women everywhere living with heart disease, is that we need YOU, our family and friends, to reach out to us more…ask how we’re feeling?  ask if there is something you can do to help?  ask if we need a shoulder to cry on, and/or a pair of ears to listen?

It has been proven that women with heart disease, who do have that emotional family and friend support, have a much better quality of life and a prolonged life.

Don’t let the fear of what you might not want to hear keep you from listening.  We, women living with heart disease, need to know that you care…our lives depend on it!!!

Stand Your Ground

The term “stand your ground,” has evolved in recent years due to individuals having the right to protect their homes and loved ones.  This no longer is just a term, but a controversial law in most states.  A “stand your ground” law states that a person may use deadly force in self-defense without the duty to retreat when faced with a reasonable perceived threat.

I am in no way going to even touch on the heated debate that has been swirling around this law since it’s inception.  I am, however, going to use the term “stand your ground,” in regard to the patient/physician relationship, removing the “deadly force” portion for obvious reasons.

For many of us, we were brought up to NEVER question the doctor…EVER!!!!  It was viewed as being very disrespectful.  Even when we knew that there was something physically wrong with us, we would just quietly walk out of our doctor’s office, defeated and beaten down, pay our co-pay, and then head on home.

“Stand your ground” in medical terms means exactly that, especially for women who present with heart disease/attack symptoms!  NEVER retreat and never back down!  Stand your ground if you truly believe that you have a legitimate health concern, no matter what a physician says.  They work for you, and that includes giving logical answers.  The most common answers given by physicians are, “everyone has it….it’s very common….you’re under a lot of stress….” with my favorite being “I think everything is okay.”  You “think” everything is okay?  Your physician is not getting paid to “think,” but to “know.”

Women have always been more intuitive than men, and are much more astute at recognizing when something is amiss when it comes to their bodies.  Women are also much more likely to seek medical attention, until it comes to their heart.  Heart disease has always been viewed as a man’s disease, and even now, many physicians miss, or ignore, the signs/symptoms of heart disease/attacks in women.

Medical text books for years have ONLY dealt with men when it came to heart disease/attacks.  Even today, most clinical trials and research include all, or mostly men, even though heart disease is the Number One Killer of Women over all cancers, all diseases, and all other leading causes of death (murder; suicide; accidents)…this according to the National Center for Disease and Prevention Control’s most recent study.

The only time you should ever “retreat” from your physician’s office, is after you have received logical answers to your concerns, or on the flip side, have not received answers, let alone logical, to your concerns.  In the later case, retreat, but not before making sure that they know that they have been FIRED, and you will be requesting all of your medical records asap!!!

Even having knowledge of my long list of heart/lung issues, I can still show up at an ER and have at least one, if not more, doctors, nurses, and other medical staff roll their eyes, and talk down to me.  If this is happening to you, STAND YOUR GROUND!!!!  This isn’t a matter of whether or not your newspaper was delivered on time, or your car wasn’t repaired correctly…this is a matter of LIFE & DEATH – YOURS –  STAND. YOUR. GROUND.

 

 

When You Get “Bad” News

One would think that after a decade of getting “bad” news that one would get accustomed to it…not true!

There’s “bad” news, and then there’s “bad” news.  Let me explain…

The first “bad” news is that you have heart disease.  And from there it somehow snowballs into a huge monster of a snowball, with no warehouse to store it!

For some patients, not myself mind you, the bad news is “hey, you have a blockage in one artery and we can fix that with one stent, and then send you on your way!”  For patients such as myself, however, it’s just not that easy.  One heart diagnosis leads to another, and sometimes into other diseases, like in my case, lung disease hop on for the ride.

At last week’s follow-up visit with my cardiologist, I was told that the heart and lungs work very closely together…like a marriage.  My first thought was, “I’m screwed!”  If my marriages (three to be exact) were indicative of how my heart and lungs were going to work together, like a marriage, then there was very little hope.

I was placed on a new medication, as I could not tolerate the previous medication for my Pulmonary Hypertension.  We were not at a place where we would need to replace my mitral valve, but we were heading there at some point…kinda like a divorce.  You know it’s coming, but you have to go through the angst and exhaustion of getting there, and then wondering if it will all work out!

I am one of the lucky ones though, in that my cardiologist explains everything to me, and answers all of my questions in a way that even I, the patient, can understand.  I’m still not sure who was more shocked, however, when I asked her the million dollar question at the end of my last visit, “What is my life expectancy?”  She gave me the longer version, but for the sake of space and time in this blog, I will give you the short version.  If this next medication that she was providing me, in order to prolong my life, and give me the best quality of life, did not work, well then…

That “well then,” quickly turns into 3 years, maybe 5, maybe more….It’s a crap shoot, and I’ve never been a fan of Vegas and all of it’s gambling antics.  I like the simple concept of I hand you money and you hand me something back.  My crap shoot did not work…I was unable to tolerate the second medication given me, so now it’s on to Plan B….hope and pray for a miracle.

Being a Christian, I do believe in “miracles,” which will serve me well in the future, as it will take nothing less than a miracle to not only give me quality of life, but to also prolong my life.  I have grandkids, and I would rather be there in person, just as every grandparent would want, rather than be there in “spirit,” as family is quick to point out when a loved one has died and cannot attend a special,

So, for now, it’s back to work…back to helping save other women’s lives…back to being…I am extremely Blessed!!!!

Yours in learning to “never give up!”

Cyndi

Putting “Bad News” into Perspective…

Let’s face it.  No one wants to receive bad news, but life has a mind of it’s own.  As Forrest Gump quoted his mama, “Life’s like a box of chocolates…you just never know what your going to get!”

I received not-so-good news from my cardiologist this past Wednesday, and here it is already Sunday.  I wanted to write about it earlier, but I was still attempting to “wrap my head” around the information I was given.

Others have received worse, but there have been others who have received better I told myself.  Thus, the “pity party,” at least for several hours, but not for days.  There was no hop-in-the-bed-pull-the-covers-over-the head drama…just a few hours and then it was back to the work at hand.  Helping other women living with, or at risk of, heart disease.

My issue(s) involve both my lungs and my heart.  The heart and lungs  work together, kind of like a marriage…a partnership.  When one is not functioning properly, the other suffers.  Well, if my previous marriages (3 to be exact) were indicative of how well my lungs and heart were going to work together, I was definitely screwed!!!!

I have Primary Pulmonary Hypertension (PPH) and Pulmonary Arterial Hypertension (PAH), which is “double the trouble!”  There is NO cure for these, and the patient, in this case, me, will only get worse.

The bright light in this very dark tunnel however, is that with some medications, PPH and PAH can be stabilized giving the patient not only a better quality of life, but a prolonged life expectancy.

For approximately 4 years, Nifedipine held my Pulmonary Hypertension at bay, keeping me stabilized.  Then one day, I noticed that I was out of breath doing things that I normally was not out of breath doing.  This lead to a stress echo, leading to a right and a left catheterization.

Having access to my health records online, I retrieved them soon after, printed them out, wrote questions and concerns near those issues I had, and took them with me to last week’s appointment.  I got, as always, straight-forward answers from my cardiologist but with compassion, hope and empathy.  There are questions that you want answers to, but sometimes, those answers can sting.

My last question was a doozie!  I asked what my “life expectancy” was with PPH/PAH, not to mention the heart conditions that I also had?  For the record, there is NO “set” answer for this.  There are suppositions, but my life will undoubtedly be shortened.  I was given a new med, after the first one following the procedures did not work, which after the first few pills, had not lowered my blood pressure, which was an expectation due to lowering of my already low blood pressure being one of the side effects.  However, it did create cases of “heartburn,” with the final pill resulting in a four hour painful experience of heartburn and chest pressure – two down and ? to go??

I know it’s a “crap shoot” of sorts when trying new meds, but you see,  I’ve NEVER been a gambler, so this process is exceptionally hard for me.  I never liked Vegas and the gambling….I like the concept of handing someone money and then they give me something tangible in return…sadly, with my heart/lung issues, it’s not going to be that cut and dry.

So, I now await the next new med, continue doing those activities that I can do, even if it means pushing myself.  I already eat right, exercise, am a non-smoker, non-diabetic, not obese, have never experienced high blood pressure, so for me, and for many others, it comes down to this…

Trust my/your cardiologist, or any other physicians dealing with my/your PPH/PAH, that they are doing everything in their power to give you and I the best quality of life, as well as to prolong my/your life.

More importantly, know that your life is in God’s Plan, in God’s Hands, in God’s Timing….then relax and enjoy every day for what it is…a PRESENT from God!!!!!!!

Blessings!

 

HEART DISEASE: Seen Through The Heart, Not Through the Eyes

In the last week, I think the last count, where others have said to me, “You don’t look sick…you look so healthy!” is well over one hundred.

I feel as if I should be apologizing for not looking sick…for looking healthy.  If they only knew what it takes to NOT look sick…to LOOK healthy.  So many times, where I have been invited to go to dinner, to hear music, or attend some event, I initially get excited, but then when it comes to getting ready…shower, make-up, pick outfit, get dressed and then get out the door, my excitement fades.  By time the shower is over, along with all those girly things us ladies do to get ready, including make-up, I’m already exhausted.  Sometimes I forge forward in the hope that I can get a “second-wind,” but usually as I stand in my closet looking over my outfits, shoes and purses, I decide it’s just not worth it!!!! 

Out come the pj’s, off goes the make-up, and here comes the depression.  The only other time I have ever gone through this type of depression was when I was going through “the change” after my total hysterectomy, many years ago.

What cannot be seen through the eyes, can be seen, and felt, through the heart.  I wish my heart could talk, because if it could, it would be better able to explain what it goes through, so I could better explain what it’s like for me to go through.  You know what?  Let me give it a try…it’s the least I can do for my heart:

Heart:  What’s she doing now?  I need to rest, and it feels as if she’s running a marathon!  I’m not sure if I can keep this pace up!!  Wait, she’s sleeping, so how could she be running a marathon?  This 24/7 race is getting old already.  When do I get to rest?

Blood Flow: I usually swim upstream, but I just keep getting knocked back down, like a fish attempting to swim upstream against a strong current.  It’s been all day, and I don’t seem to be getting anywhere…now I know how “she” feels.  Sometimes I even come up against a wall I can’t pass, and have to find another way around in order to get to my destination.  Whew – this is really getting on my nerves and definitely wearing me out!!

Lungs:  Where is that blood flow?  It’s never on time, and sometimes doesn’t come at all…so very frustrating!!  I need it to keep the pressure in my lungs low, so I can breathe easier.  When it’s late, it really slows down my day, and on a really bad day, even doing the normal everyday things are difficult to do, if not impossible.  Even though the good days are few and far between, I sure do love those stairs, walking longer distances, even the grocery shopping, which I hate by the way, without becoming short of breath.

Chest Pain/Angina:  OUCH!!  That hurt!!!  I feel as if someone is placing me in a vice, just to see how much pain I can take, and for how long.  Thank God that was a short one.  Most last longer, and only increase in pain level as time goes on.  Here comes the “spray” (Nitroglycerin in doctor terms) which usually results in the pain going away…sometimes not.  ER here I come, again.

Cardiology Visits:  These are the worst, because it’s NEVER good news 🙁  It’s always the same story, so I don’t even know why I need to be there?  “There is no cure for what you have…we are just going to work at prolonging your life, and giving you the best quality of life we can…so here’s the next step.”  Yadda, yadda, yadda!   Although I appreciate all that the cardiologist is doing, it doesn’t help in wondering when you’re gig might be up.  It might help me to know that when “she” goes, that I might be able to be transplanted into someone else’s body, giving them life, but in my condition, that, sadly, is not going to happen.  Uh Oh…here comes the DEPRESSION again.  That lonely feeling, that helpless feeling, that feeling less-than.  I often hear “her” listening to a Christian song, and when it gets to the verse, “the night can’t last forever,” …”she” changes the words to “the day can’t last forever,” because she is so tired…I break for her!

I wish I could do better for “her”….she has been so good to me!  She exercises, eats right, has done wonders in keeping the stress off of me, and loves me with all of her “me!”  She works hard for me, so I’m not going to let her down…I’ll work twice as hard!!  It’s not as if I have a choice.

The moral of the story?  When a woman tells you that she has heart disease, PLEASE refrain from telling her that she doesn’t look sick…that she looks so healthy.  Instead, let her know just how sorry you are, and ask if there is anything you can do.  Remember….HEART DISEASE IS SEEN THROUGH THE HEART, NOT THROUGH THE EYES!!!

Blessings ✝ ♡

 

Heart Disease = Depression/Anger/And More

I sometimes Blog on the WomenHeart Blog site, called Inspire.  The other night, I logged on, and one of the titles was No Need To Respond!!  Of course being a curious one, I logged on and WOW, I was both shocked and saddened, at just how angry this woman was about her heart disease.

Even though she didn’t want anyone to respond, I felt that the content of her blog was a “cry for help,” so I responded anyway.  I told her that I wasn’t going to give her all of the common cliches, or talk down to her, but I was going to tell her that from what she had blogged, that I felt it was a cry for help, and I wasn’t about to let that go by.  I told her that I agreed with her…that heart disease DID SUCK, and then I offered my support.  Others responded, some with the cliches she had said she didn’t want, others responding similarly to what I had said.

It gave me pause in regard to just what women living with heart disease “truly” feel…what they “actually” go through.  So many women tell me that they can’t talk to their own families, even more often their spouses, including their best friends.  I know what they are feeling, because I too have, and still do, experience the same thing.  It’s as if no one brings it up, then it’s not real.  But that “big elephant” in the room remains, whether anyone talks about it or not, leaving the woman with heart disease to fend for herself when it comes to the “circus of feelings” that she is left to deal with.

I have felt, and still do at times, anger, frustration, depression, feeling of being less than a woman, anxiety, panic, and just about every emotion one would feel who has a chronic disease.  There is an unspoken distance, since I have been diagnosed, even thought it’s been years ago, with both my family and friends.

I mean no disrespect to anyone by stating this, it’s just fact, but if I had cancer, and lost my hair, there would be no way of ignoring THAT!!!  With heart disease, especially if you don’t look sick, which most women with heart disease don’t, there is nothing to see, therefore it does not exist.

So, we just go on pretending, for the sake of others, not our own, that we are “just fine.”  Then we cry ourselves to sleep.  During the days, however, the other emotions rear their ugly heads, with anger, frustration, anxiety, depression, and more.  It’s during these times that it would beneficial for our family and friends to just get out of the way.  But the truth is we don’t want them to “get out of the way.”  We want them to hug us, to let us talk about our heart disease and the feelings that go hand-in-hand with having heart disease…to just listen.

Initially, after being diagnosed with heart disease I began seeing a psychologist in order to deal with the emotions of all the changes I was having to make to my lifestyle, not to mention the fear of dying.  Since moving to the Nashville area, I have not seen a psychologist, but will be doing so in the near future, as just recently I have been told I will never work again, and there is NO cure for the heart disease(s) I have.  OUCH!  It hurts when that door gets shut in your face!

And then, the old saying appears, that when one door closes, another is supposed to open, but with heart disease, we keep banging on that closed door, wanting to get back in and retrieve the life we used to live.  The sad truth ladies, is that the closed door, for us living with heart disease, will never open again.

We can either continue feeling angry, frustrated, depressed, anxious, fearful, or we can put on our “big girl panties” and do whatever it takes to help us get through all of those “big elephant in the room”  feelings, whether that’s through a Support Group or psychological help.  Life is too short, especially for us, so let’s let go of those ugly feelings, and get on with living life…every day above ground is a GOOD day ♡

Blessings…

 

Giving Myself a Heart Test

The 4th season of Nashville begins filming today.  Normally, I would be excited about being invited back for another season, but I am worried, or maybe the right word here, is anxious, about how my heart will do?

The hours are long, but as long as I get to sit for most of the time, then I will be fine.  The other issue, is that it’s a late call time, and if filming goes into the wee hours of the night, I am confident that I will not be able to stay and finish out my role, as late nights are no longer part of my world.

I should be used to giving up doing those things that I love to do, as it’s now been eleven years of doing so, even if it has been a little at a time.  I guess, some things you just never get used to.  I feel like I’m 90 years old when I have to tell family and friends “I can’t do that anymore.”  It’s like that phantom limb syndrome where you’ve lost a part of your body, but still feel like it’s there…with heart disease, it’s your “being,” what you “used to be.”

But, heart disease is not the whole book, just a chapter…a chapter that I refuse to let define me, so I’m going to get dressed, show up for filming today, and give everything that I can to doing something that I love and just might still be able to do…I won’t know if I don’t try!  Hollywood….er, I mean Nashville, here I come 🙂

I Got Involved!!

I’m always on the hunt for articles or news stories dealing with women’s health, especially heart disease, as well as anything to do with those issues surrounding advocating for oneself.  Although they are rare, they are out there, you just have to look harder sometimes.

As stated in an earlier post, The Tennessean recently had an article entitled, “Hospitals Look To Patients, Family For Voice on Experience,” and through my Blog, I encouraged everyone to get involved.  That meant me as well!

I was turned down by LifePoint’s “patient and family advisory initiative,” due to me not having ever been a patient in one of their hospitals.  I jokingly offered to have a heart attack and be transported to one of “their” hospitals if that what it would help get my foot in the door…thank God the lady I spoke with had a good sense of humor!  So instead I tried another approach stating , REALLY??!!!  I’ve been a patient, many times might I add…that should count for something.  A patient, is a patient, is a patient, and any information that patient can share, whether one of their hospitals is involved or not, is a moot point.  That input just might help them to become more proactive, rather than reactive, instead of waiting to see what a patient’s satisfaction rating is, after the fact.

Next stop….St. Thomas Health.  They had recently begun a “patient advocacy committee,” so, not being shy, I called.  After being transferred several times, I found the right person, and she was more than worth the wait.  I had liked what she stated in the article, “When we look at feedback from patients about where we have opportunities…a lot of times it’s around communication.”  Amen Sista!!!  Communication!!!  Communication between the patient and the physician, although preferably before the “feedback,”  is paramount to both sides.  The patient wants to feel better, and the physician wants to, at least most of them, help the patient feel better.  Without communication, I can guarantee that’s not going to happen.

I reached out to St. Thomas’ Chief Experience Officer, explaining why I knew I could, and would, be an important asset to their committee, especially if given an opportunity to work with St. Thomas Heart.  We talked for a while, and it only took one day before being invited to their August patient advocacy committee…I’M NOW INVOLVED!!!

Previously I had worked diligently with a wonderful young lady at Vanderbilt Heart, trying to get them involved through a partnership with both WomenHeart and our local WomenHeart Support Group.  Sadly, after over two years of trying to make this happen, politics, once again, reared it’s ugly head, alleviating any chance for a partnership to take place.

I approached Williamson County’s Cardiac/Pulmonary Rehab Unit, with the same result…no.  The ladies working in the Unit loved the idea, but the higher-ups nixed the proposal to work together.  It was bad enough that a partnership could not be formed, but when I requested at least a tour for my WomenHeart Support Group, I was turned down…one of my Support Group attendees was already a patient there, and still, no….ahhhhh, the politics, even when people’s lives hang in the balance.

When it comes to partnering with the medical world in the greater Nashville area, I’ve been turned down more in the last 4 1/2 years, than the bedding in my home!

So, THANK YOU St. Thomas for “getting it!”  For being proactive instead of reactive, and for truly caring about your patients concerns.  It is my HONOR to partner with you!

 

Research for All Act (H.R.2101)

Although I didn’t approve of the 21st Century Cure Act (H.R.6), that doesn’t mean I won’t support other Acts.

The Research for All Act (H.R.2101) is a great example of an Act that will without a doubt benefit women living with heart disease, and I encourage everyone to support it!!

This Act was introduced by Representative Jim Cooper, R-TN-5 on 4/29/15.  On 5/1/15 the Act was referred to the Subcommittee on Health.  This Act provides for research, in cardiovascular clinical research studies, to include adequate numbers of women, analyzing results for gender differences, thus answering many remaining questions about how best to prevent, diagnose, and treat CVD in women as well as men.  The Act would also eliminate any inequities by requiring the National Institute of Health (NIH) to develop guidelines for the inclusion of female subjects in basic research, by authorizing funding for NIH’s Special Centers of Research on Sex Differences.

Being your own best advocate is not just about speaking up for yourself at your physician’s office…it’s also about knowing what is going on in legislation.  Knowing what you are voting for, is important, as you might be voting for something, or against something, that might just save your life one day!

WomenHeart is all about Advocacy, Education and Legislation…let’s follow in their footsteps….