“Are you there, God? It’s me, Cheryl.”

Three more months of waiting concluded yesterday with meeting a new specialist at a transplant center 3.5 hours from our home. The distance didn’t really bother me, but having only traveled it once, I cannot say if the constant back-and-forth trips will not become tiresome. My husband is quite sure it will; but what other choice do we have? You would think that with the amount of snowbirds living in Southwest Florida, having heart failure specialists with the facilities available to perform heart transplants would be a profitable venture here. Anyway, I digress.

This transplant center was a complete opposite from the previous jail-like structure we visited a few months ago. It was welcoming, calming and, in general, just well-designed. I guess that isn’t always important to some, but to me, as a designer, and more importantly, as a patient, it is. It means that the establishment cares about the comfort of their patients – that thought was given for the nervous sick people and caregivers who would visit here. This immediate first impression was soon supported by our experience with the friendly in-take staff. We watched other staff emerge and greet patients, who were obviously returning after transplant. Staff would come in and embrace these patients as if they were family. It didn’t feel like a corporate business machine that healthcare often feels like. It was different, and it was palpable. This was point 1 in their favor.

We arrived at our appointment too early, as we weren’t sure if traffic was going to be an issue. I settled into the back of the waiting room; ready to sit for at least an hour, as I was an hour early, and feared it could be even longer. It is my experience that no cardiologist is on time. Pleasantly, within minutes I was called for vitals and then taken back into a patient room minutes after that. Ahh, but we weren’t to be tricked by this quick response! As you may remember, Bryan and I sat in the last transplant center patient room over 3 hours before the doctor blessed us with his dripping arrogance. Again, this was different. The aide immediately took our information and then the transplant coordinator came in after that. No unbearably long waiting – a solid point 2.

The transplant coordinator was younger than I would anticipate. She was somewhat abrasive, but probably had to be to get to the position of such importance.  It seemed that she was reading a script; one of which we had heard many times before. The narrative of condescension; of what they couldn’t do; what they wouldn’t do, with a background of who was to blame for my declining health along the way, including my previous doctors and myself. It is so old to me that I barely hear it anymore – just blah, blah, blah. But Bryan, was put off by it. So much so, that I was concerned he was going to say something to compromise any possible working relationship at this center. Of course, his frustration is justified. He and I have been searching for answers so long, and this woman seemed to be verifying that we reached another dead end. After her negative speil was over, we were to see the doctor. I still had hope that maybe the doctor would be more “reachable” than the transplant coordinator. Bryan seemed to have lost all hope already. Emotions run high in these situations, and when you are desperate for answers, but just get kicked in the face over and over again, you get angry. He was clearly angry. Seething, in fact…and then, even tears. This sucks! We are solely dependent on if they are interested in my case, and if they care enough to figure the intricacies of “me” out.  The waiting and wondering has taken a toll on all of us. For me, an uncertain future is scary; for him, the man who loves me, feels responsible for me, it is downright terrifying. He has been the upright structure I have clung onto throughout this mess, so he deserved his moment of exasperation. This exchange with the coordinator was clearly strike 1.

No waiting for this doctor. He walked in quickly after the coordinator exited. I am clearly nervous, with a lot riding on whether we “liked” him, or not. A slight, middle-aged man entered. He was soft-mannered with a warm smile. I was relieved that the usual bravado was absent. He actually reviewed some of the thick file I brought in – his brow furrowed; he asked questions; I answered; more furrowing brow and then lots of typing on his computer. This went on for an hour. Bryan and I have never been so quiet in an initial appointment, as there is so much information to exchange. We answered his pointed questions, offered what we thought was important, but then just watched him “think,” as he flipped through pages of my ailing life. It felt odd – acutely distant from previous experiences. I am guessing that this is what thoughtful consideration looks like.

I then received a physical exam from him and more questions. Very little talking, lots of furrowed brow, some slightly awkward smiles and an hour later, he states, “Well, you have heart failure.” I almost bursted out laughing, thinking, “Yep, doc, tell me what I don’t know!” Umpteenth doctors have confirmed this. All the cardiac MRI’s have confirmed this. This is a widely accepted diagnosis. It seemed absurd almost to hear him declare it so. He is the specialist on heart failure so I guess it is appropriate. However, I wasn’t there to get his stamp of approval on my diagnosis, I was there for a solution. “You won’t like it, “ he said. He was right, I don’t. Drugs – lots of them. This was strike 2.

I am no stranger to them, having 3 pages on file of all the drugs I have taken for heart failure; all of them, which made me sick and miserable. Sick, like I cannot walk the dog a block; do dishes without feeling like I am going to pass out; sleep constantly, sick. Miserable, like sitting on the floor of Walmart crying because I don’t know where I am; thinking of ways to kill myself, miserable.   All of the drugs I have ever been prescribed were at the lowest dosage because I am super-sensitive. All of them I was taken off of, because of the extreme side effects. His plan is to give me the same low dose my body could not handle, and then double that dose every 2 weeks. And continue to do this until I have the recommended dosage – which is ultimately 20 times more than the dosages that made me sick. He is saying this to me and all I could think was, “Umm…what the actual hell doesn’t this man understand about I can’t handle the drugs?” And then, he tells me in his soft-mannered voice, but with a surprisingly firm hand, “You just have to be sick and get through this until your body adjusts.” I am not sure he understands the level of “sick” this is going to make me. Internally I am screaming, “I can’t do this!” Fight-or-flight mode kicked in and I was ready to run.

But instead of running, he taught me in the hour before, to just listen. And indeed, he said things that I have never heard from any other cardiologist. I will try to articulate what he told me the best I can. He told me that after 8 years of this affliction, that my body had adjusted to my failing heart. That it was working in a capacity in which it could not sustain itself (which explains my constant high-heart rate). That the system in which I internally operate will fail, and I will die. It is true that in the last month, I can feel it flailing. He then explained when I took the drugs before, my body had to act according to it, and it didn’t like doing so because it had a system in place to placate me for the time being; that was why I was having side effects. And, that the only way to extend my life was to force the body to accept the drugs. He told me that he understood I would be miserable. That other patients before me were miserable. But in the end, he basically stated, in his nice way, to “buck up” and get my head into “the fight.” No other doctor has said that. They didn’t care enough about my continued existence to. (That might be too harsh and not a fair assessment. I will give the benefit of the doubt that the previous cardiologists simply didn’t have the knowledge or experience – except the last fucker). This was point 3 for the win!

This doctor told us that all the modern drugs he would prescribe me were ones that he, as a young doctor, worked on as part of the research team, many years ago, to prove effectiveness on heart failure and get approved by FDA. That he personally had conducted hundreds of case studies and as a young man could, “care less how sick patients got and pushed his research until he got the result he wanted.” Although this was not comforting to hear (he did make some disclaimer that he cares about patients now, however) – it does prove his statement that, “it gets worse before it gets better, and you just have to wait it out.” He was adamant that the drugs were the only resolution I had to prolong my life. Then he dropped the “bomb.” He explained that if I could not handle the drugs, that when my heart finally gives out, that I would not qualify for a heart transplant. In order for a heart transplant to be successful, patients take 15 prescriptions a day. In consideration for a transplant, your ability to live with this regimen of drugs would be a determining factor of approval. Well, shit. There goes my plan of just living “as is” until my heart fails and then seeking heart transplant. This plan was never as a way to negate the process, but always as a way to negate the sickness of the drugs. He also affirmed what Bryan and I already knew – living with a heart transplant is difficult. It isn’t as though your life is back to normal. A donor heart also only lasts about 10 years – and if you can’t tolerate the drugs well, the donor heart only lasts about 2-3 years. Heart transplant is not a permanent solution and once you start that clock, there is no stopping the end point.

So his plan for me is to endure the drugs, no matter how miserably, and acclimate my system. He is somewhat hopeful that my heart function will improve with the correct “recipe” of drugs. But if no improvement is seen, that the drugs will give me more time before a heart transplant; and at the very least, my cooperation with taking these “capsules of horror” will ensure I will get approved for transplant when I need one.   So the plan sucks for me, and probably my husband and children who will have to deal with my sickness. But at least it IS a plan. I am sure the next 6 months will be hell on earth for me. I have stated before that I will endure all torture sweetly for the chance to see my children have their own children, so it is time to “put up or shut up.” I will lean upon those who love me. I will also garden, be close to nature and allow that serenity to help heal me.

Nature has always been my church. I never feel closer to God than being outside with the sun kissing my face and my toes in the earth; it could be a beach or a forest, no matter, it all is my temple. Growing up our household wasn’t particularly religious. Of course, we knew of religion and practiced Christian values much of the time, however religion wasn’t a constant. When facing a life-threatening illness, I suspect that religion is a huge part of self-comfort and reliance to those who are passionately religious. I would feel like a complete fraud if I called upon God only because my life faces a crisis, but yet, I felt deeply compelled to do so. There is a quote that says, “When life gives you more than you can stand, kneel.” So I have prayed…a lot. At first I felt awkward. I felt unworthy. I felt like if he answered my prayers that maybe some sick child with cancer would not have theirs answered. I know, sounds silly. I have never prayed for more than enlightenment: to understand what He had in store for me, and to offer my acceptance of such. Over the years I have felt much like the saying, “Are you there, God? It’s me, Margaret.” The epitome of what others call “faith” is praying to an open sky and hoping you are heard. Hoping that there is sense to it all that you just cannot understand. Many years have passed and I still understand nothing. Faith is a long course, it seems.

But as we returned home yesterday, I saw this sunset and I felt a peace wash over me. Maybe I imagined it, maybe not. But somehow, I felt like He has heard me, and He will be with me throughout this journey.