I have had the joy of being a Registered Nurse for over 40 years. I was born wanting to be a nurse and started bandaging teddy bears at the age of three. By the age of 5, I was creating “medicines” by spinning blades of grass mixed with clover flowers in the front wheel well of an upside down tricycle.
As I got older, I moved on to be a Candy Striper and a Nurse’s Aide, and then I went on to get my degree as a RN, a BSN, and MSN and became a teacher, administrator, and researcher. All of this cannot REALLY prepare you for; “Being on the other side of the bed” which is what happens when a health care professional who is used to caring for patients becomes a patient themselves.
After years of “unexplained” heart palpitations and increasing shortness of breath there was a sense of relief, in 2006, when a cardiologist finally put a name to what I was experiencing: HOCM: Hypertrophic Obstructive Cardiomyopathy. He put me on some medication and the relief of symptoms was full and immediate. I was delighted! I paid little attention to his warning that this condition can often deteriorate into the need for surgical intervention. My feeling was “That won’t happen to me, I take care of people who have had open heart surgery, I am not one of them.”
I began some on-line research and found a discussion forum for people with HCM where I didn’t participate. Instead, I lurked in the background. I read lots of posts and decided not to participate because the people posting were REALLY sick! They had ICDs, and needed open heart surgery and heart transplants. That wasn’t me!
I was in denial. I had closed my mind to any more information and decided I would just be on my own; after all I was a nurse and I had access to a lot of medical information and numerous doctors and surgeons.
Hint #1- Being in fear and denial is an unhealthy coping mechanism and prevents us from mastering information we need to advocate for ourselves within the medical community.
Over the next 6 years…my symptoms increased and my medications increased. I asked my cardiologist, “If I ever need a myectomy, would you refer me to Cleveland or Mayo.” He said “Oh no, Myectomy is a really simple surgery, they can do it right here at our hospital.”
Even though I had read in the HCM standards of practice that Surgical myectomies were best done at hospitals with a high volume of myectomies and I ignored that when my personal cardiologist said something different.
Hint #2 – Blind trust of a health care professional over what has been researched and declared as a standard of practice by experts is not always in our best interest.
By 2012 I had to leave my job and go on disability. My symptoms were consuming my life and my medications were maxed out. So, much to my dismay, I needed to consider surgical myectomy. At this point; nurse or no nurse…I was a patient. I was desperate to be well and get my life back. That was the only thing on my mind. I was referred to a Cardiovascular surgeon at our local “Heart Hospital.” I met with him and felt pretty comfortable with him. He was kind, he seemed calm, confident, and had a good reputation among the doctors and nurses I knew at the hospital. He said he was quite confident in doing the procedure and that he had performed a couple of myectomies a year over his almost 30 years of practice.
Hint #3 – A couple myectomies a year is NOT HIGH VOLUME!
Later on in my pre-op visit he mentioned as a casual aside: “you know, I don’t really believe in extended myectomies or papillary muscle re-implantation.”
Hint #4 – Extended myectomies and papillary muscle re-implantation are within the scope of practice of a well-trained HCM surgical specialist. If a surgeon is doing the same type of myectomy he did 30 years ago and has not updated his skills, he is probably not the one you want to do your surgery.
I buried my intuition and knowledge and told myself “Staying near home is probably best, it is easier, and it costs less. I didn’t want to have to take my daughter away from her children to go out of town with me or to fly home on an airplane right after surgery. So instead, I scheduled the surgery for March 2013 at my local “Heart Hospital.”
Hint #5 – Ease and expense should be far down on the list when choosing treatment that can either threaten your life or improve it.
What can I say, hindsight is 20/20. Desperation to be well again blinded me to the situation I signed myself up for. I got the results of the surgeon’s best effort: an outdated limited myectomy that improved my symptoms for only about 6 weeks. I had gone through an open heart surgical procedure with ALL of the inherent risks and had absolutely nothing to show for it. In fact, my post-operative echocardiogram looked virtually identical to those done pre-op except that you could see what looked almost exactly like a 1cm by 1cm rat bite out of my ventricular septum, directly under the aortic valve.
I was right back where I started!
With the encouragement of several people in an online HCM support group. I went back to my cardiologist and asked to be referred to the Mayo Clinic in Rochester, MN. My cardiologist was behind the referral 100%. He was devastated by the lack of results from the surgery he had recommended to me.
In July, 2014. after advocating for myself, I was able to go to Mayo Clinic where I underwent a repeat surgery; an extended myectomy performed by Dr. Joseph Dearani – a surgeon who performs hundreds of these procedures each year. He removed a 4cm by 5 cm chunk of muscle and scar tissue which had been left behind by my original surgeon.
As the result of my experiences, my case was presented to the head of cardiology in my health care network. Now, I am happy to say that they will ONLY refer HCM patients who need surgical myectomy to a high volume center of excellence.
It was only after this second surgery my journey to true health and wellness began. At 67 years old and 2 years after my second-myectomy. I am now back to a productive life without chest pain or arrhythmias. I still have HCM and I still take medications, but now I am able to walk and swim and work in my part-time practice of Spiritual Counseling. I still am not an athlete, but I never was. My life is good.
If putting my twice in a lifetime experience in writing helps even one person avoid the mistakes I made, then my experience was worth it.
Remember: Knowledge is Power! Ask your doctors and surgeons hard questions. If they pat you on the head and tell you not to worry… you may need a different doctor.
And above all don’t let your desperation to be well overshadow your intuition.
You know yourself better than anyone.
About Jill Celeste:
Jill Celeste MS RN has worked over 40 years in both hospitals and universities across the country. Retired from traditional nursing, she enjoys traveling to India and studying the body, mind, spirit relationship to health and disease. Jill now resides in Denver, Colorado and has a private practice providing spiritual counseling and working in the field of vibrational medicine. She can be reached through her website www.HealingImprints.com
WARNING – GRAPHIC IMAGE BELOW!
The photograph posted below shows the actual tissue that was removed during Jill’s second myectomy. Don’t scroll to the bottom of the page unless you are prepared to be SHOCKED!!!