After months of sending medical records and going back and forth with hospital transplant centers and my insurance company, I have received the news that I was accepted for an initial consultation. Yep, three months of toiling and I get an appointment.
Three months ago my regular cardiologist cancelled my appointment with him, yet again, and I was advised it would be at least 2 months to reschedule. After a year with this cardiologist, many appointments had been cancelled; including one where I was in the hospital and ready to be geared up for a medical procedure. I was told (hush-hush) with the appointment admin that this was a huge issue at the practice. Anyway, I had reached the point of being disgusted and decided I was no longer taking his shit. I called the supervisor of his practice and voiced my dismay at the length in which it is taking him to evaluate me for a referral to a specialist, as that was the next step in his failed attempt at “fixing” me. I stated the obvious, but some-what inflammatory, accusation that unless I was able to see him, he was effectively putting my health in jeopardy and therefore, all the delays were being documented by my family. That got some traction. By the next day, I had my referral.
The referral was for a hospital transplant center that I requested. The transfer of my medical records was botched at first, being sent to the wrong department, but after a couple days, the transfer was complete and then a week later, I was approved for an initial consultation and had it scheduled. Easy-peasy. This hospital transplant center had received my records a year before when I was referred by a different cardiologist. At the time, I felt I wasn’t ready (aka: chicken-shit) and didn’t follow-through with it. That referring cardiologist left the State and I had to seek a new one; who upon meeting me the first time declared it was silly and presumptuous to refer me for a heart transplant. Great! I was to be “fixed” after all! One day they tell you that you are dying, the next day, it was all a farce. This is the ups and downs of heart assessment; the process is exhausting. Anyway, one year later, this cardiologist too has raised his white flag of defeat and referred me out. I am an ass, and should have gone through with it the year before. Live and learn.
So I have an appointment for a month later and all is good. I am FINALLY going to be seen by a heart failure specialist. I live in Southwest Florida. There are no heart specialists in all of South Florida so this is a big deal. I am content we are moving in the right direction. And then, I receive a phone call from the insurance company. This person, she tells me, is my personal claims assistant. Because potential heart transplant is an expensive surgery (1.3M) and recovery ($??), all my insurance “hoops” are now guided by the experts. Of course, they are watching their money too. In one fell-swoop of this phone call, all my plans were fuzzy again.
Insurance is an intrinsic part of planning – unless you are very wealthy. I was told by my personal claims assistant that the hospital transplant center I chose was a two-tier and not a top-tier center. That is insurance-talk for, “we don’t like that center and we want you to go to this one.” Her explanation was that the top tier one has a better success rate. I like success rate percentages, so how could I argue? What this meant for me financially was that the coverage (after my deductibles and out-of-pocket was met) at the first chosen transplant center, the surgery and recovery would only be covered at 70%. In real-life cash terms that meant at the minimum, $400,000 out of pocket. Yeah, um, I don’t have $400,000 in my bank account right now. Also they would not cover the LVAD, if I decided on that procedure, or travel and lodging. Lodging is important, as some have to live within a certain distance from the center to be in the transplant program. Therefore you have to rent some place to live. This entire endeavor is a very expensive one, and for someone like me who has closed their own business, been unemployed and with very expensive student loans looming, this is a huge problem. Especially when the guilt of placing your family in financial distress is more disabling than the heart condition itself. Guilt is another post entirely – but the struggle is real. I keep telling them to “push me down-river” to no avail.
So, I needed to consider a different hospital transplant center that was top-tier, again told, with bright shiny carrot dangling, a “better success rate” and would be covered at 100%; LVAD included and travel and lodging expenses all at 100% (after all deductibles and out-of-pocket was met). This carrot did, indeed, appear more delicious. We will see after I actually get to taste it though.
With this new direction, I was starting all over with medical records and coordinating an already pissed-off, unstructured local cardiologist office (who was probably happy to be rid of me), to transferring all my records again to a second place. They were none to pleased. This process, even though it was over Thanksgiving and Christmas holidays, still took forever. The difference between this center and the last, was that the doctor was going over all my medical records to determine if they even wanted to see me. Their referral specialist explaining that they are “far too sought after to just accept everyone for an appointment.” He asked for some supplementary CD’s of my echo and my MRI, and a detailed report of my sleep study. The request for a detailed sleep study was interesting, as even though I was diagnosed with moderate sleep apnea last summer, no one has given a second glance to it. With hope, I think maybe this Center will be more thorough in assessment. I have still to receive the echo CD, as I am dealing with imbeciles, but I was granted an initial consultation for 2 weeks from now. I will have to get a new chest x-ray and blood work next week before I go. Chest x-ray is to see if I have plural effusions in my lungs and enlarged heart (congestive heart failure) and blood work as a way to rule out other conditions. Of course, no one has told me this is what they are exactly looking for, but after 8 years, I am somewhat self-taught.
Not sure if “excited” is the right word about getting through the first “hoop” but I am grateful to get this opportunity at seeing someone with expertise on my condition. Now, “lets not get ahead of ourselves” yet though, as my insurance rep tells me today, because this does not mean I have been accepted into the heart transplant program (this is important to note financially as none of the 100% coverage sets into place until you are accepted into the heart transplant program. All insurance deductibles and coverages, up into approval into the program, is your regular medical coverage). This appointment just means they will consider it. It is a first “date” if you will, which most likely will lead to many other “dates” but not necessarily to marriage. Which is ok, as I would like to see how much we accomplish with “dating” first. I am not ready for a commitment either. I would like to know my options and see if there are better proposals. Maybe LVAD, maybe something else, who knows? I am not the expert but it seems to me that there could be shinier carrots out there: maybe none of them diamonds, but I have never been into “all that glimmers” anyway. I like substance, with clear goals and reliability – in my men, and in my cardiologists. Let the dating begin.
** I have a background in law, and so that education has taught me not to share here the names of the hospital transplant units or the doctors.
Whatever happens at least it is a starting point, thank God!