Go Red for Women- Why I've been Missing

If you've been following my blog for long, you probably already know I am a woman living with and fighting heart disease.  I wrote a post last year about my story up until that point and shared one of our favorite Heart Healthy Smoothie recipes here. 

I'd like to say that was the end of my story, that everything has been teddy bears and lollipops and that the health care community has changed and now fully respects women in their times of need and treatment of heart disease.  Unfortunately, I recently discovered we still have a fight, we still have a road ahead of us to create gender fair treatment of this silent but #1 killer of women!

This is my story a year later, some recent events that have given me pause, have taken me from my regular farm posts to you, taken me from my family for a bit, and kept me from doing my daily tasks that I love so much.  Many have wondered where I've been, why the Facebook page has been so "dead", and why I haven't posted.  I was back and forth on sharing this, after all, it's not about farming so much or caring for our animals but in order to spread the word and fight for this cause, I need to share anytime and everywhere I can.  Lives are worth fighting for, right?

**warning- some photos are a little graphic, not horrible, but enough some will not want to see**

If you haven't read the first article, a little background is necessary.  I was diagnosed with a global cardiomyopathy about 10 years ago when I was just 27.  By the time I was 30 I had my first ICD implanted- a dual chamber defibrillator.  After 3-4 years of looking for answers, and seeing specialists from Va. to NC. to Dr. Grubb in Oh, I was told I have a global cardiomyopathy, arrhythmia's, and a severe autonomic dysfunction causing POTS, NCS, and other related problems.  With my wonderful local doctor's help, we'd managed to tweak my medications and routines to live a fairly normal life with low activity and periods of rest when needed.

About a month ago, however, my ICD began to vibrate in my chest.  After an ambulance ride and meeting with my St Jude's tech in the Emergency Room, we discovered my battery needed to be replaced, it was below the treatment levels.  This means if I needed the shock, it may not give it.  I was admitted to the hospital for a new ICD.  We knew I'd have to replace it for this reason every few years and having had it for six years, and three electrical shocks later, I was okay with that.  When I awoke, the news wasn't what I expected or wanted to hear.  I wanted it to be over and out and about again within a few days.  Instead I sadly discovered that the lead wires to my ICD had frayed and the local EP (my trusted doctor) could not replace my ICD.

I was then put on rest for about a month while we waited for me to get an appointment at a hospital in Richmond for a lead extraction and a new set of leads (dual chamber) and ICD to be implanted.  Although riskier and performed in the OR, it was still a fairly minimally invasive procedure.

Ready to go in

The operation was unfortunately delayed on the day of surgery by 4 hours.  I had a terrible feeling from the beginning since the prep nurse managed to vaso vagal me (cause me to faint) right there in the prep room while attempting to insert the IV improperly and draw blood.  I'm not afraid of IVs or needles after all of the procedures I've been through, they're really not a big deal.  She apparently was new and I tried to be patient but my body wasn't quite so agreeable.  I became quite ill and then (as usual with these episodes) the next thing I knew there were 4 experienced nurses talking to me and one singing opera to draw me back.  It was a great nursing team in the long run.  I awoke after surgery and was told everything went well and I would be ready to go home the next morning.   The next morning, I was having pain in my left arm (the side the ICD was implanted).  They performed an ultrasound on my arm and told me I was fine and should be sent home. 

By that evening I was in excruciating chest pain and shortness of breath.  It was agonizing even in comparison to my past cardiac troubles and C sections.  I was kept again due to the pain but the hospitalist on the floor continued to tell me that it was just my "anxiety" over the surgery.  I knew this wasn't true, I had "that feeling" that I had in the past during my vasospasms that was my body telling me something was not okay.  I continued to plead with this physician for the entire next day into the evening- almost 2 full days and he continued to press on the painful area and tell me, " I didn't know what a pain level of 10 was, to calm down and not be so worked up, control my anxiety."  At the end of the second day, a nurse who noticed that I became increasingly tachycardic with the pain, went around the physician and called in her RRT.  The RRT agreed with the nurse that I wasn't "just nervous" and insisted on an echocardiagram.  The echo seemed normal but the technician couldn't get a clear picture on the angle of the leads.  She couldn't say for certain but told me later they didn't, "appear to be at the right angle."  She and the RRT then went to the hospitalist and insisted he have me sent down for a CT Scan.

Almost immediately, I was taken from the CT Scan back upstairs in a whirlwind of activity.  It turns out, the elecrophysiologist had perforated my heart.  The ICD lead and penetrated my pericardium and went clean through the left ventricle and outside of my heart putting a hole in it.  The hospitalist's comment to me was simply, "Aren't you happy I had that CT done?"  He then told his staff I was to be moved back to the CICU and a surgery needed to be scheduled for Monday.  This was a Saturday evening. Although enraged, I was in too much pain to say anything.  I just cried, grateful that now someone was willing to listen and help me.

I was taken back to the CICU where I met the cardiac surgeon.  He explained to me that there was a hole in my heart that must be fixed immediately.  He advised me I could not wait for Monday because it was life threatening.  They frantically tried to reach my husband while some techs and nurses explained the basic procedure to me and the fact that I'd need a chest tube and line in my neck and my stomach would need to be pumped immediately.

When I awoke I was told the surgeries went well.  They performed a thoractomy to repair the hole in my heart, a chest tube was inserted, a line put in my neck, arterial pressures put in my wrists, and the leads for the new ICD had been reinserted and the ICD implanted again.  I was in pain, a lot of pain and breathing was a terrible struggle.  I was alive, however, and very grateful.  The worst was the breathing I think.  I couldn't speak without running out of breath which was awful for my children.  The chest tube wasn't horrible until it was time to come out and then it was quite uncomfortable.  It only took her two pulls to get it out but I pray I never have to have that again.  The line in my neck was better.  Both the chest tube and line in my neck had to be stitched so there were some small stitches on my neck and side.

The thoracotomy is the slowest to heal.  My ICD incision is pretty well sealed up but the incision from the thoracotomy isn't.  It was performed under my left breast and between my ribs, requiring the surgeon to cut the muscles and nerves between my ribs which are SLOW to heal.  That seems to have given me the worst trouble (this is what makes breathing so difficult and painful.)  I still look forward to a day without pain from that or a day where I can walk further than the length of our bottom floor without being desperate for breath.  I know it's coming soon.

chest tube out, 4 days later able to sit up

I'm still healing from both surgeries.  I spent two weeks in the hospital and finally convinced the doctors to let me come home to complete my physical therapy and healing.  I've been at home another week and I still have pain, worse yet- extensive shortness of breath.  I was told I was lucky to be alive.  The cardiac surgeon said the small cap on the end of the lead was at the perfect angle to prevent a lot of hemorrhaging from my heart at the hole.  My arrhythmia's are giving me some trouble and we are back to the starting board on adjusting my 16 medications.  Due to having 3 surgeries within a few days, I developed a low blood count and anemia.  Hopefully that will resolve soon and I can cut those pills out.

At this point, I want to get back to my "normal" life.  I had complained in the past that I couldn't run with my children like other moms but now I will be happy just to venture outside of my home with them at any pace or just be able to perform regular "mom duties" such as cooking or cleaning.  I know it will take several more weeks and I'm trying to be patient.

As for the hospitalist that refused to believe me or offer me up treatment, I still have nightmares of being in a room and needing help and no one coming or listening.  I am working on getting a patient advocate to review my file.  Being only 38, I did have some strength to fight his decisions and try to voice my needs, some of the older ladies on that floor may not be able to do that so I'm hoping things will change after my case so that the other women that are there can receive the treatment and care they need when they need it and not be bullied into submission.

The other women with heart disease are the reason for me writing this post.  We must advocate for each other and for ourselves.  Take care of ourselves and each other, get second opinions, be courageous enough to disagree if we feel something is wrong.  Don't just accept the "anxiety" and "too much on your plate" quick diagnosis from doctors if YOU feel something more is going on.  Trust your body and your instincts!  Know your numbers and take care of yourselves.  Fight women's heart disease!

With Love,
Tiffany

Go Red for Women & Heart Healthy Dark Chocolate Strawberry Smoothies

I'm a woman and a survivor of heart disease. I am blessed each day I wake up alive to spend another day with my family. Friday is Go Red Day where across the nation, we wear red in honor and memory of women with heart disease. The American Heart Association reports cardiovascular disease to be the number 1 killer of women in America. Those numbers can change. I'm a living testament to that. 

I was 27 years old when I was diagnosed with Autonomic Dysfunction, a Global Cardiomyopathy, and fatal cardiac arrhythmias including Ventricular Tachycardia.  It was overwhelming.  It almost killed me but thanks to an insightful, brilliant Cardiology Specialist, my Electrophysiologist, Dr. Clemo, I am alive raising my children, being a wife to my wonderful husband, and living on our small chicken farm- here to fight another day. 

Traditionally, heart disease was thought to be a "Man's Illness" and sadly even today, many women are neglected by the health care community.  The American Heart Association's Go Red for Women seeks to change that and they've made outstanding progress.  Just since I was diagnosed 10 years ago, the treatment I receive when its necessary for me to go straight to the hospital has changed dramatically. 

My husband and I fought for almost 3 years to get a quality diagnosis and care.  Three days prior to having my dual chamber ICD (Implantable Cardioverter-Defibrillator) an ER physician pulled my husband from the room and told him to get me evaluated for depression and anxiety.  Now, not to say I wasn't anxious- BOY was I ANXIOUS!  I'd been fainting regularly- several times a week regularly.  Sometimes on the treadmill, my heart rate would shoot up to the 200 range within 3-5 minutes of my warm-up.  I was seriously fatigued (which can also be a classic sign of depression) and often short of breath.  I was beginning to think it was all in my head but then I felt so strongly something wasn't right with my body.  I accepted the prescription for Zoloft from my primary care physician on the terms that if I took "his" route he would agree to write a referral for a cardiologist.  Although the preliminary EKG and chest X-ray came back normal, I couldn't shake the feeling that I was not.

Seeing a cardiologist allowed me to have some more extensive testing done.  Not everyone who has a cardiac disease will have an abnormal EKG!  If you take nothing else away from my post- take that as one of the two items to rememberm the second is to trust your body!  Never be embarrassed to get second opinions.  After having an echocardiagram, I was told I DO have a global cardiomyopathy.  Global meaning it was my entire heart muscle and not just one of the four chambers, cardiomyopathy meaning basically my heart was sick.  Your heart is a muscle and it needs to stay strong like your other muscles to function, mine is no longer strong.  My ejection fraction was very low which basically means it's not pumping as well as it should.  This explained why I was fainting, short of breath and so physically exhausted all of the time.  I am at risk of sudden cardiac death and dangerous cardiac arrhythmias.  I was stunned- I suddenly wished I was "just depressed or anxious" as I'd been told.  Thank God for my loving and supportive family and that my EP, Dr. Clemo happened to transfer to our little town 10 years ago from Richmond soon after my diagnosis. 

 

I was in and out of the hospital quite frequently while they attempted various cardiac drugs and tests.  Unfortunately, I continued to lose consciousness often and my symptoms appeared worse (beta blockers will make you feel as if you're 120 years old!)  By this time we had met Dr. Clemo and he'd made attempts to speak with my attending cardiologists about looking at implanting an ICD.  They refused based on my age, they even insisted I must have my husband's written consent to have the EP study done by Dr. Clemo!  My husband's consent!  Folks, this was 10 years ago, not 50.  My husband is amazing- he laughed when they told him this, looked me right in the eyes and said, "YOU know your body, YOU have done the research, YOU know much more about this than I ever will.  Do you want this done?" I said, "Yes" of course and we were done.  Several days later my heart decided to stop and then start up and race in the 200 range and then stop again and then race again. 

 

Dr. C is also a great surgeon, my scar is minimal and you can barely see my device.

I awoke to Dr. Clemo saying in his British accent, "You scared the piss out of us last night!  No worries- I'm taking over and we're putting a piece of metal in your chest to take care of this.  Chuck signed the papers."  I was off to have my first ICD implanted.  Dr. C saved my life but he also gave me my life back.  He uncovered and diagnosed my Autonomic Dysfunction and teamed up with my husband and I to ensure I saw the best specialists in the country to help us balance the Autonomic Dysfunction treatment with my Cardiac disease treatment as they often counter each other.  It's been 10 years, 3 times being defibrillated, and 3 heart attacks until now.  I am happily at my desk, homeschooling my children, being a wife to my husband, and running our small chicken farm with the help of my family. 

Until my own heart disease, I knew nothing about what my numbers should be, what a heart attack could feel like, nor signs of trouble.  After three heart attacks, I can honestly tell you never once did I have chest "pain."   I felt a pressure- almost like an elephant was standing on my chest and it took much effort to inhale and exhale, a focused effort to breath; exhausted, terribly and physically (not the mental tired- this is different); I was sweaty- GROSS sweaty ladies, drippy, nasty sweaty; and nauseous- oh SO sick to my stomach in a way that was "different" than I'd felt before.  Amazingly, I also began to feel a sense of dread- I tried to ignore it and chalk it up to anxiety or panic at first but then I realized it was real and it was there.  I did not imagine it, my body was screaming for me to get help.  Praise God, I have an ICD so anytime my heart stops or starts running in dangerous arrhythmias, it shocks me.  It's also a "pacemaker" so when my heart decides to run low (for me it's set at 74 beats per minute) it gently paces me back up to the 74 bpm.  Find out all of the typical symptoms of women's heart attacks here and more information here. 

A little bit of my morning, afternoon, and evening regiment

Go Red for Women is so important to me for obvious reasons!  I credit the Go Red for Women movement and doctors like Dr. Clemo for pushing the movement of diagnosis and treatment of women's heart disease forward!   Take care of your bodies, know your numbers, and know the signs! 

Now without further ado, my Go Red for Women & Valentine's Day Heart Healthy Strawberry, Dark Chocolate Smoothie!

I enjoyed this smoothie with my children, 3 of my favorite Valentines so the recipe will make an entire blender full.  You can cut it in half for less or stash the rest in the refrigerator! It's so delicious but it has the heart healthy ingredients of dark chocolate, strawberries, and yogurt!

Ingredients & Directions
2/3 cup of your favorite dark chocolate or dark chocolate chips
4 cups of frozen strawberries
1 cup of Vanilla Yogurt (I like Stonyfield Farms organic French Vanilla)
3 cups of Milk (almond milk or soy milk are also good)

Now- here's the super easy part- throw it all in your blender, hold your lid on tight and pulse.  I started mine on the chop or low setting for a few minutes before upping it to blend until smooth. 

 My husband and I don't drink wine but we have some wine glasses my mother in law gave us a couple of years ago so whenever it's a special occasion or we make fun drinks, the kids like when I put it in the "fancy glasses" so I did this and topped each off with 3 dark chocolate chips on top. 

Enjoy your special Valentine's Day drink!

Blessings,