On Monday I had my routine followup visit at Stanford Medical Center with my Cardiologist, and well known and respected Stanford heart transplant surgeon, Dr. Michael Fowler. Also scheduled was an Echo cardiogram test of my heart, which had not been performed for nearly 18 months, and which previously reported an EF of 18% both in August 2013 and January 2014, not to mention the Echo with my Santa Rosa Cardiologist, Dr. Sanjay Dhar in July and October 2013 which reflected an EF of about 12-15%.
And all of these previous numbers, as well as other exams of me, my heart, and failing condition, made me a sure candidate for a heart transplant; as hard as those words were and still are to say and type. But, you see, I was not a heart transplant candidate because I was not yet 5 years cancer free. So the LVAD (Left Ventricular Assist Device) procedure was being planned, which is considered a Bridge-To-A-Transplant therapy. Mark, Alura & I even went through the LVAD training in April of 2014. Yes, just that short time ago, a little over a year ago. The funny thing was, that from January to April 2014, I had started to feel oh so much better.
As I look back now, from my diagnosis in June 2013, right at the end of a wonderful trip we had taken to celebrate our 40th anniversary, it really wasn't that long of a time. But the way I felt, and how quickly I declined, from that June until January 2014, was something I hope to never EVER experience again. Not being able to walk up a half flight of stairs, or make the short walk out to our alpacas, or do really anything for that matter other than sit around, with terrible edema, bloating and indigestion, hardly any appetite, unable to sleep without several pillows, gasping for air. Oh my, these memories are almost too much. But it is good to remember and reflect, AND be oh so thankful.
At the time, Dr. Dhar immediately referred me to Dr. Fowler at Stanford. And I know why. He too knew that a heart transplant was my only hope. Thankfully, though, the latest technologies and medications helped me so much, and my very strict regime (on doctors orders), of treating sodium as an allergen and keeping it to a very minimum in my diet. Then there was the recommendation to be as active as my heart would allow. All this, and the horrible indigestion, helped me to drop 40 lbs, and I know that was a huge contributing factor in my improvement as well. Less weight, meant less work for my failing heart.
While all this was going on, I went through test, after test; and several changes and increases in medications. Then there was the Holter Monitor, and the three grueling months with the Zoll Lifevest, which is an external defibrillator -- a cumbersome gadget, worn 24/7 like a back pack, with a huge controller over my shoulder and a long "tail-like" cord attached to the vest which hung down off my back. It was uncomfortable to sleep in, and just depressing to wear. But it had a job to do and I was glad to have it there just in case. Finally, after 3 months of the vest, Insurance approved an ICD (Implantable Cardioverter Defibrillator), which is surgically implanted into the chest wall, just above the left breast, and has two leads (wires) that go into the two chambers of the heart. Mine was implanted on October 25, 2013.
The ICD is not a pacemaker. It is a defibrillator calibrated to shock the heart back to life whenever alerted to do so, based on settings individual to the patient. I later learned that this gadget also took all sorts of readings that the technician and doctor would "interrogate" at each appointment, and read to see all the history captured since the last appointment. An ICD will also pace the heart back into rhythm, should that be necessary, trying to avoid the shock if possible. Fortunately, I have never been shocked. I hear it can feel like a horse kicking you in the chest - YIKES!
The ICD surgery went well, with the exception that I caught a very nasty cold right afterwards, fever and all, and my ICD immediately had to pace my heart and I felt absolutely horrible for quite some time. As a matter of fact, I felt very bad for the next 3+ months. It was not until I saw Dr. Fowler in January 2014, when he made adjustments to all my medications, and then talked very seriously that we prepare for transplant or LVAD. The thought on the LVAD is that it would then move me into the transplant wait list, even with the cancer history; and keep me going until transplant, or possibly even without transplant. These were some pretty scary times. The LVAD training alone was enough to scare me out of my skin; not to mention Mark and Alura, who were there with me for the training in April 2014.
But low and behold, the changes in medication, and possibly some new probiotics I began to take, along with the continued lifestyle changes, all took effect and I began to feel better immediately. I began to walk a bit when I could, sometimes only to the mailbox. But heck, that was a huge accomplishment. I had lost some weight. And, I began to sleep better. So even though we had the LVAD training, we all knew, even Dr. Fowler, that the procedure probably would not take place, at least not right away.
So dial ahead about 15 months, and here we are today. Sorry for the long recount of things, but it just seemed important to tell this story and share with you how instrumental this new EF number is in the scheme of things.
The left ventricle is the heart's main pumping chamber, so ejection fraction is usually measured only in the left ventricle (LV). An LV ejection fraction of 55 percent or higher is considered normal. An LV ejection fraction of 50 percent or lower is considered reduced. Experts vary in their opinion about an ejection fraction between 50 and 55 percent, and some would consider this a "borderline" range.
Keep in mind that ejection fraction is just one measure of heart function. Even with a normal ejection fraction, overall heart function may not be normal.
So you can imagine that my previous EF of 18% was quite low and very serious. But an increase to 40% is HUGE, and makes my heart sing. AND, so much more closer to the normal range.
So I'll take it, and be very grateful for all that I have -- a loving husband and best friend, amazing daughters and SIL's along with the three most adorable grandchildren in the world. And oh, did I mention the most supportive sisters and brothers, and all their families. And then there are amazing cousins and friends galore. You are all so wonderful and have supported us both during the last five years of cancer and heart disease. We love you all and thank you for standing with us through thick and thin.
AND now the Cardiomyopathy warrior!!!