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