Turning “Why me?” into “Why not me?”

by Carolyn Thomas  ♥  @HeartSisters

Cathy Aumack-Bandy of Florida wrote this open letter in response to another heart patient’s question to her last month. I’m running this compelling essay here with her kind permission. Hold onto your hats . . .

♥

When first diagnosed with cardiac problems, many people ask, “Who Me? No…” My version of the question “Who me?” was “Why Me?” – until the day my Mom asked, “Why NOT you?”  I hadn’t thought of it that way.

I went into the hospital because of a bout with “asthmatic bronchitis” that I just could not shake. I never imagined it might be a heart problem (neither I guess did my former primary care physician). I’d had a full cardiac work-up in October and been declared “heart healthy.”

Talk about shock… Who knew?

Just two days after my admission, a doctor (I didn’t know him at the time, or that he was a cardiologist) came into my room and, totally ignoring me in the bed, told my husband Gary that my heart was barely functioning and that without a transplant, I would not make three months. 

My response was a giggle, a nervous giggle. Partly because I was certain the doctor was in the wrong room, and partly because I genuinely felt terrible for the actual patient he had to deliver that news to. Thank God I only had a bad case of “asthmatic bronchitis”. I was already feeling much better with the IV steroids, treatments and oxygen, and certain that I’d be home in just a couple of days. Certainly not a heart problem… Who knew?

By the time he finished speaking, we both realized that he had seen my “stellar cardiac report” from October and had deemed what he’d seen in new tests as being very different. I sat there in shock. No longer giggling. He never did acknowledge me in the bed.

“Hey, Mister!”

“Hey. I’m over here.”

I was totally shut down. My husband sensed this and said to the doctor (later determined to be a staff cardiologist assigned because I did not have one): “What would you recommend?”

His matter-of-fact response marked the last words that doctor would speak to either of us.

“Take her home. Make her comfortable. Get her affairs in order.”

I could not believe doctors actually said such things to relatively healthy fifty-something women. Who knew?

It was 2013. The first thing I “got in order” was to ask our new primary care provider a couple of questions. This was the PCP who had admitted me to the hospital, immediately after a consult (requested by my husband) to find out why “asthmatic bronchitis” (as the former PCP had called it for 10 weeks), seemed to be killing me.

I asked that the staff cardiologist (who had come full of good news that morning and seemed willing to send me home so I could be made comfortable while I awaited my death) not ever come into my room again.

Then I asked a more personal question: “If your wife, mother, sister went from ‘heart healthy’ to needing a transplant in matter of months, which cardiologist would you want her to see?” Both my wishes were granted and very soon we were meeting with a new, more helpful, a more hopeful cardiologist. Who knew?

The next few months were a dizzying cycle of tests and hospital admissions. I wore a Zoll Wearable Life Vest 24/7 both at home and in the hospital except for when I was in ICU. Doctors said the vest would respond immediately by shocking me if my heart stopped, whereas it “can take a few minutes for a code team to reach your room, so we like to be ready.” Certainly not the way I had envisioned the year. Who knew?

By July, I was sick enough that I needed to be seen by the transplant team at the Regional Transplant Center. Once again stabilized at my local hospital, I was packed up and shipped to Tampa General Hospital. I even had Surgical Intensive Care Unit ambulance escorts, which apparently you get if you are still quite unstable yet need to be moved. Who knew?

On my second day as a patient at TGH, Gary and I met with a cardiothoracic surgeon from the Heart Transplant Team.

This was the big time. We felt like we already knew this doctor because my cardiologist is on staff at both hospitals. We thought we had the lay of the land. We were feeling hopeful. Not…

Did you know that being overweight (mind you, I’m not talking 200 pounds type of overweight) can make you ineligible for a heart transplant? Despite all we thought we knew from our cramming those past months, we learned a lot of things that day. We had much more to learn. Who knew?

The next morning, while feeling quite low since I needed a transplant to survive but was ineligible for even a transplant evaluation, we met the man who would join the effort to save my life and who took me from an ejection fraction (EF) of under 20% to around 45% in just three months. He was the cardiac electrophysiologist (EP).  Not only the most brilliant man in the world, he taught both my cardiologist and PCP in medical school and their postgraduate studies. They trusted him and believed he could help me.

He came to our room (I say “our” because by now Gary, and my aunt and uncle, were camping out in Tampa). I was inconsolable and angry. He discussed putting in an ICD (an Implantable Cardioverter Defibrillator) so that I “could have a bit more time.”  Then he left.

Gary went home to get a few hours sleep, and Aunt Lee and Uncle Dan came back on duty keeping me company and trying to raise my spirits. A short time later, the EP returned and asked if I might be interested in becoming part of a clinical trial for a new type of “complex cardiac device.” He said that if it worked for me he “thought, but could not guarantee”, that it might help me a bit more than a regular ICD.  His explanation was far over our heads. He made no promises. I think I surprised everyone when I said, “Where are the papers? I want to sign them.”

Funny, when you have nothing else to hang your hat on, how quickly experimental medicine becomes (at least in my head) lifesaving medicine. Maybe I thought I was at Seattle Grace and Dr. Burke was taking care of me. Good thing I kind of was… Who knew?

Actually, it takes days to arrange such a procedure. There are “The Patient Understanding” forms and “The Patient Rights in Clinical Research” forms, and this form and that form.  The paperwork is endless. So are the discussions with various staff (and all the forms to document all the discussions) to make sure you actually understand what is going on and what is going to happen.

Frankly, I was in a fog and so weak, I barely understood anything they said. I had barely a clue about “what was going on.” I hadn’t even been able to walk to the bathroom in my hospital room by myself without fear of passing out in months. But I sure did know what was going to happen. My cardiologist (who by the way explained the device and process in a manner more easily comprehended by ordinary humans) and my PCP had a teacher, a colleague, a friend, whom they trusted with my life.  The life they had spent many hours, days, and months sustaining. They trusted him to help them save my life. That was enough for me. I was getting an “experimental complex cardiac device” that was going to save my life… Who knew?

I got my device, a Medtronic Viva Quadripolar S CRT-D several days later.  I know that device name by heart. It is the little machine, comparatively speaking very little, that runs my heart. I had a lot of pain from the procedure (my EP has Gigantic Hands that were down inside my chest for several hours getting everything “just right”) and, medicated, I slept right through the night.

It was the first decent night of sleep I’d had since getting sick in early January. The next morning, without even thinking about it, I got up and went into the bathroom. When my husband shouted to a nurse that I was gone (he was not in the room when I got up), and I heard the Nurse running, only then did I realize that I had done it Myself.  Wow! Just a day before this, I’d been unable to get out of bed.  Now, less than 24 hours after my device was implanted, I had gotten out of the bed and, like a big girl, had gone to the toilet without assistance. First time in more than 5 months.

It had been many years since anyone applauded me for going to the toilet by myself.  But it’s little things that make the biggest impressions when you are 54 years old and dying no more. Two days later I dressed myself (another first in months) and asked to please be left alone in the bathroom. Then we went home… Who knew?

I sure didn’t.  Thank God somebody did.  

My struggles did not end there. As a matter of fact, we still face battles. I went into kidney failure twice in reaction to a diuretic drug. I was back in ICU, where the nurses who had not seen me in months said that, even as sick as I was, I looked “amazing.”  I spent most of a year in and out of South Bay Hospital as my body fought to stay on the right side of that thin blue line between dehydration and fluid overload.  Eventually, because of complications, I had to be taken off all diuretics. A precarious spot for a cardiac patient…  Who knew?

Then, almost nine months after my lifesaving investigational device (aka the Quad) was implanted and “saved my life,” my husband found me on the floor, unresponsive. He called the medics. Though I was talking to him as they took me from the house to the ambulance, by the time we made the 10-minute ride to the ER, I was in sudden cardiac arrest.  

I woke that night in ICU with no memory of anything that had happened since the previous evening.  I spent a few days in ICU, and was again transferred to Tampa General (to their ICU because although I was in a consistent heart rhythm, it was one deemed “incompatible with life.”) I had a cardiac ablation done, and was once again sent home “back in working order.”  

As had been done during many other tough episodes (and tough procedures, and tough days), during the resuscitations (yes, plural) and then again during the ablation, I was given medication. My husband was never offered any of that “magic” (my word for you won’t remember a thing) medication. He remembers. He knows… He still gets a look of panic if I say I’m not feeling well… Who knew?

This past year, we’ve dealt with two TIA’s, a mild stroke, and several episodes of cardiac vasospasms – common complications for cardiac patients. I have mostly recovered from these.

I say mostly because I don’t think we (either individually or collectively) ever fully recover when something like this comes into our lives.  Now there are “severe cataracts” and “two broken teeth” to be dealt with under the shadow of a damaged heart. This “should be a piece of cake”.  Life goes on… Who knew?

All of this went on as my parents and most family members watched safely from afar. Other than several very uncomfortable attempts at “normal visits” between New Jersey (my home state), and Florida (my adopted State), my parents were kept out of the fray. Those living nearby were subjected to one of those educations none of us signs up for and we pray we won’t ever have to get. That’s the toughest part of all of this. At least to me. What our family members, both near and far, have to be exposed to. What they have to see.  What they have to learn… Who knew?

My Mom died two years ago. After knee replacement surgery.  She’d had heart disease for many years. The real stuff. The kind with CAD, blockages, stents, CHF, COPD, TIA’s, and diabetes. She was sick for many years. Mom did little the doctors told her to do, but she did take her medication. That was about the only area where she complied.  I sat by her hospital bed many times over the years while she told me I “worried too much.” She died quite suddenly during a seemingly successful recovery from knee replacement surgery.  We were in the ER, me again “critically dehydrated”, when the call came. I was too ill to go to Jersey for my Mother’s funeral…  Who knew?

I’ve written about this before to heart disease patients asking “Why me?” after being newly diagnosed. At three and a half years post diagnosis, I’m a relative Newbie around here, but far enough out to have gained a bit of perspective.  A former journalist and therapist, I am always wordy, but rarely melancholy like today.  I can tell you it’s certainly the first time I’ve found myself crying while answering a patient’s note…  Who knew?

Part of my thoughtfulness about the issues, my melancholy, is that I’ve been playing with the answer to a challenge put out by the American Heart Asociation/American Stroke Association to its members last month. They asked us to look at what happened in the beginning, during our initial cardiac diagnosis.

“Where were the gaps in your treatment?”

“What might have made it better?” 

I have no brilliant answer to those questions. Perhaps if I’d had a more inquiring or astute PCP in the very early days of my “asthmatic bronchitis”?  Well, could any doctor have known that a virus would attack my Perfectly Healthy Heart and decimate its electrical system?* In a matter of weeks? Really?  

What about if the original cardiologist, the one who thought that sending me home to die was a proper treatment plan, had a clue about bedside manner? Nah. He was gone in a New York minute. The cardiologists who came onto my case are still my doctors today. And they are the Best of the Best. So he doesn’t count.  

How about if I had gotten to the Regional Transplant Center sooner? Well, that was not possible. I was there the first minute it was determined the other treatments weren’t working.  

I know. What if the Transplant Director had been willing to bend the eligibility requirements? Nope. That man has a spine of steel. With all the sadness he sees in the eyes of patients and their families, he would certainly fall down if he didn’t.  Now that I understand the How’s, the Who’s, the Why’s and the What If’s of heart transplants, I totally understand why they have Rules for Transplant Eligibility.  With as few hearts and other organs that become available for transplant each year to “harvest,” I pray they continue to choose transplant candidates who are the most likely to have a successful outcome. Besides, I’ve lost much of the weight that kept me off the list that year.  And with an EF currently over the 50% mark, at this point I don’t need to see the transplant Team for evaluation or even for updates. I pray I stay out of their line of vision forever… But who knows?

What I do know is this.  I am (whether I like it or not, whether it’s fair or not, whether I want to be or not) I repeat I Am a Cardiac Patient.

I have a PCP and a cardiologist and an EP. But much of the work that goes into keeping my health as stable as possible lies with ME.

Each day I make choices that impact my life as a person with complex cardiac issues.  Basically, the choices I make impact how much longer I will live. Three months has become three years. I’d like it to become thirty. Doctors say, and research shows, that 50% of those identified with several of the diagnoses I have are dead within five years of diagnosis. I am determined that will not be me… But who knows?

At this point, we were able to fire (or make that “temporarily lay off”) the nephrologists, the neurologists, the vascular surgeon, the gastroenterologist, the pulmonologists, the respiratory therapists,  the nutritionists, the home nurses, the physical therapists, and the occupational therapists who were part of my care. I know I’ve missed an “ologist” or two, so forgive me. Wait a minute – the Tampa General Residents and Cardiac Fellows. See? I’ve remembered two groups already! Oops. I forgot the ophthalmologist who caught the “mild stroke” when I had pain in my eye. And how could I forget the researchers who developed the investigational device (now fully approved, by the FDA) that runs my heart. Oh boy, I forgot the Medtronic staff who built the device I have and who, from afar with a wireless connection, keep track of how it’s working.

You see, when you get sick, I mean really sick the way I did in January of 2013, each organ has its own doctor. As you get sicker, each body system gets its own treatment team. Eventually, there are so many people involved in your care, in keeping you alive, that it’s hard to keep them straight without a playbook. I pray they remain “laid off”… But who knows?

The ER doctors and their saff. The Telemetry, PCU, ICU, and the rest of the staff at South Bay Hospital, and all the others who care for my husband and me so very well when I’m not doing so well: they are always there waiting in the wings.

My husband is always on duty. Family and friends who rode out the storm with us may never be off guard.  My congestive heart failure Facebook family is never far. Those who send up prayers for my health and praises for the many miracles God has brought these past years never go off duty. I’m often asked “What comes next?”  I am doing okay at this point. Compared to others, I am doing quite well… But who knows?

“Why Me?” Why Not Me?  I pray no one is ever born with congenital heart defects again. I pray coronary artery disease becomes obsolete. I pray no virus, bacteria or anything else ever gets into a person’s body and decimates a “perfectly healthy” heart.  I pray and I wish. I wish and I pray. Too bad it doesn’t work like that. I wish it did…  But who knows?

There is no time for the Why Me’s? No time for the Who Me’s?  No time for the What Ifs?  

We are alive and we need to start living.  You see, we carry on the journey for not just ourselves, but for many others.  We carry on for all the “Why Me?” and “Who Me?” and “What If” askers that didn’t get to ask the questions. We carry on for those yet to come who won’t make it far enough to seek the answers, to live out their lives. We owe it to all those who go before us and wait on the other side.

We owe it to them to live as complete a life as we can.

If only because they will surely ask us… “Who knew?”

© 2016 Cathy Aumack-Bandy

* Cathy’s cardiac diagnoses ultimately included Dilated Cardiomyopathy, Heart Failure -Systolic,  Mitral Valve Insufficiency, Atrioventricular Block, multiple arrhythmias including Atrial Fibrillation, and secondary disorders from the heart damage were COPD and Chronic Kidney Disease.

Q: Have you had to learn how to go from “Why me?” to “Why not me?”

See also:

• My patient-friendly, jargon-free glossary of hundreds of confusing cardiology terms

NOTE FROM CAROLYN:  I wrote more about how women adjust and adapt to a serious heart condition in my new book, “A Woman’s Guide to Living with Heart Disease“ (Johns Hopkins University Press, 2017).