Turning “Why me?” into “Why not me?”

24 Jul

3heartsby 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?

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Cathy

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:   Because I’ve started a new writing project  – stay tuned for details! –  I find myself temporarily with fewer hours in the day when I’m able to write new blog articles here.  I’m hoping that running interesting guest posts like Cathy’s essay (or some updated favourites from my Heart Sisters archives) will keep you informed, entertained and involved each week for a while.  And although I’m not able to write as many brand new blog posts for the time being, I do love reading your comments – so please feel free to leave your response to Cathy’s guest post or to anything else you read here.  Meanwhile, thank you so much for your amazing support!

16 Responses to “Turning “Why me?” into “Why not me?””

  1. Irene Hill August 19, 2016 at 10:10 am #

    Carolyn thank you for posting this and Cathy thank you for sharing your story.

    I was diagnosed with idiopathic cardiomyopathy 4 years ago, but after many questions to my cardiologist, it was confirmed that is dilated cardiomyopathy. So far my symptoms have been minimal. I am on very high dosages of medications that have made no difference (maybe kept it from getting worse?) but I do worry about kidney and liver damage.

    I have struggled with the why me? Why not me? question. I wish I was at why not me, but I am somewhere in the middle.

    I have been educating myself about this disease, since the cardiologist gives me almost no information. If anyone else with cardiomyopathy is reading this, I have found Cardiomyopathy UK to be the best source. There is also a Facebook group associated with this. You do not have to be in the UK (I’m not).

    Cardiomyopathy is a progressive disease. So I must admit that I also get a little scared when I read Cathy’s story – are all these procedures, surgeries, kidney issues – also in the future for me? What I have learned from the FB group is that cardiomyopathy presents a different face to everyone with it. And one person can do very well with a low EF and another not at all well with a higher EF. But it is a progressive disease. When I was diagnosed, I had almost no symptoms at all so perhaps I am lucky it was found early.

    Like

    • Carolyn Thomas August 19, 2016 at 3:16 pm #

      Hello Irene – few people diagnosed with dilated cardiomyopathy would describe this as being “lucky” but I can sure see your point. It’s always better to be diagnosed early, especially since not all patients living with this scary diagnosis experience any warning symptoms. I’m so glad you have found a good resource like Cardiomyopathy UK (what a terrific site!)

      I always like to say both here on my blog as well as to my women’s heart health audiences that the only job of a heart patient is to become the world expert on her condition! Sounds like you are well on your way… Best of luck to you!

      Like

  2. bveltrop72 August 10, 2016 at 7:41 pm #

    I often have to advocate for my mother. Since I have 16 years practice as a cardiac RN, I find they just talk over my mom and not to her. It aggravates me to no end. How is it informed consent when you speak at someone and not to someone? My mother has a master’s in elementary education. She is ill, not incompetent. Also my mother is very stoic. She will not complain until she is very uncomfortable.

    As an RN my first duty is to my patient and to advocate for them. As her child and closest family member, my duty is the same. She has no advance directive or living will so I’m in an awkward position. My sister lives a continent away in Austria and I bear the brunt of all decisions and care. I also bear the repercussions of the decisions made.

    I went through the same situation with my late husband during his battle with melanoma. We differed in opinion so he made my mother his medical power of attorney. He refused to discuss his wishes with me, so ultimately I chose what was best for our children going forward. The best way to be prepared is to have an advance directive or living will on file with your physician or medical facility.
    S. Beth Veltrop, RN, BSN

    Liked by 1 person

    • Carolyn Thomas August 10, 2016 at 8:14 pm #

      Hello Beth – you raise an important point about informed consent. Most consent is NOT actually informed at all – it seems to be more of a CYA checklist box to avoid future liability (as a number of studies have confirmed). “Talking over somebody” is not just limited to the elderly patient. When I take my blind friend grocery shopping every Monday morning, the staff behind the deli counter ask ME what my friend would like to order, and she has to pipe up herself, perfectly clearly, with: “I’d like 200 grams of the Black Forest Ham, please!” And YES we should all have our advance directive AND living will signed and ready to go…

      Liked by 1 person

  3. Kimberley Krug July 28, 2016 at 10:31 am #

    My concern is: I had a stroke after brain surgery while in post op that affected my left side. If I were to have a heart attack, how would I know since it is expected to feel most of the symptoms on left side?

    Liked by 1 person

    • Carolyn Thomas July 28, 2016 at 1:35 pm #

      Good question, Kimberley. You’re right that many heart attack symptoms involve the left side, but you may be surprised to learn that heart attack symptoms (especially in women) may be felt in a variety of locations, not just on the left side. The chest pain of heart attack for example is typically described as central chest pain. Pain that radiates to the arm, shoulder, neck, or jaw (all relatively common in women) can be felt in either left or right sides of the body.

      I really hope that you never have to even think about this prospect though – you’ve been through quite enough already with brain surgery and a stroke!!! Best of luck to you in you recuperation…

      Like

  4. Elizabeth Katz July 27, 2016 at 7:25 pm #

    So did she live? I am a patient with asthmatic bronchitis. I’m now a diabetic, things changing in my body. I have COPD and I use a nebulizer twice a day. Am I a candidate for this? I’m having feelings of anxiety and panic attacks again while I’m taking my medication for anxiety panic disorder.

    Like

    • Carolyn Thomas July 27, 2016 at 7:59 pm #

      Hello Elizabeth,
      YES! Cathy is alive and well! In her case, she did NOT have asthmatic bronchitis (that’s what they thought it was at first) but it turned out to be dilated cardiomyopathy and heart failure (not asthmatic bronchitis). In your case, I think you already have enough on your plate to cope with, right? Please take good care of yourself and see your doctor about those panic attacks to review your treatment plan for that. Best of luck to you…

      Like

    • Cathy Aumack- Bandy July 28, 2016 at 9:19 am #

      I am alive and kicking, Elizabeth. Still dealing with residual issues from the damage to my heart, but it’s better than the alternative.

      Thanks for reading about my journey.

      Like

  5. Cindy Cater July 24, 2016 at 9:32 am #

    Thank you for sharing your story. I was born with a genetic disorder that causes upper extremity and heart defects. I had my 1st surgery at 3 1/2, another at 5 and the biggie -open heart- at 7, 4 days before my 8th birthday. At 37, I received my pacemaker and this past October, I wound up in the ER with what I thought was a bad asthma attack that turned out to be cardiac failure.

    You’re so correct in the statement that every choice you make affects how much longer you’ll live. That’s a lesson I’m still learning so you’ve given me food for thought. Thank you for that!
    Best wishes…

    Liked by 1 person

  6. The Accidental Amazon July 24, 2016 at 7:02 am #

    Wow. What a story. Thank you, Carolyn and Cathy for sharing it. Anyone who is diagnosed with a severe and life-threatening disease can relate to so much of this: the crash course in specialty medical treatment, the sorting out process of finding doctors you can work with, the clinical trial participation, the never-being-done part of your life. I have to say, I think being a healthcare clinician is why I never did say “why me?” when I was diagnosed with cancer. I’d already learned that “why not me?” is more apt.

    Random health catastrophes happen to so many. Cathy, I hope you get way more than those five years.
    xoxo, Kathi

    Liked by 1 person

    • Carolyn Thomas July 24, 2016 at 7:24 am #

      Hello Kathi and thanks for sharing your perspective. You’re so right – Cathy’s dramatic story is compelling because, no matter the diagnosis, what she went through will seem familiar to many other patients. The part that first caught me was when the cardiologist walks into her room, ignores her in bed, and speaks only to her hubby. Sheeeesh….

      Liked by 1 person

      • The Accidental Amazon July 25, 2016 at 12:30 pm #

        Yes, that was unbelievable. Like she wasn’t a person. Idjit.

        Liked by 1 person

        • Carolyn Thomas July 25, 2016 at 3:42 pm #

          Idjit indeed! Reminds me of lying in the E.R. and hearing the nurses standing right outside my little curtained cubby refer to me as “the MI (myocardial infarction) in Bed 8″…

          Liked by 1 person

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