Paul's Heart

Raw And Unfiltered

(photo courtesy of CFHP)

When I write my posts, really when I write anything, I try to write as professionally as I can. Which means that I do not normally publish anything immediately, so that I can proof read for errors and mispells, or perhaps tone down the temperature of a topic if needed. I want to come across unbiased, informed, and if necessary, looking for or offering a solution.

This post is not going to be one of those posts. As I write this, I am not going back and reading over it, double-checking anything. I am certainly not going to turn the temperature down on this post. I’m fucking pissed!

To preface, anyone who has followed my blog, knows I have a long and complicated health history. Also well known is my reliance on the caregivers that I have established over my both my lifetime and my survivorship. If there has been any issue ever, it has been when I was left to my own device due to an emergency where I had no choice in the caregivers assigned to me. But if a doctor was involved in my care, it was not just because they were that good, that knowledgeable, but because I have trust in them.

This year has been a difficult year in my care, not because of conditions or status of my health, but I have lost direct care of three of the most important caregivers in my care. Some due to time, and I could not be selfish to expect them to stick around. Some due to corporatization and interference taking away not only their ability to practice, but also their passion for what they are truly blessed at.

A phone call I just received a little over an hour ago (I have spent the previous hour before sitting at my keyboard putting contacts out to figure out what the Hell to do next), explaining to me, that I was going to need to find a new cardiolgist. I tried to explain to the penpusher that I did find the new cardiologist, in fact he came recommended to me, I had already been referred to him by two of my former doctors including former cardiologist.

This penpusher went on to explain I lacked a proper diagnosis to see this cardiologist which had I had a drink in my mouth would have been spit up all across my windshield as I was driving. I asked her what diagnosis would that have been. She responded “amyloidosis.” I had heard of it before, likely on television, but definitely not something in my records, which with my heart alone has an extensive list of issues along with the other late side effects with my body that I deal with. It turns out, “amyloidosis” has something to do with abnormal proteins with the body, and since I am dealing with cardiology, I am guessing it has something to do with impacting the heart. Well, the one thing I know I do not have an issue with my heart, is abnormal proteins. A blockage to the LAD and RCA main arteries to the heart, aortic and mitral valves, a left bundle branch block, and some electrical thing I don’t really understand, but abnormal proteins, no.

So one of the advocates I have working on this has gotten back to me, that this particular doctor I was referred to, who coincidentally does see other long term survivors with cardiac issues, is simply not seeing new patients, only if they have an amyloidosis diagnosis. It almost seems as if “corporate” has said “enough of those serious patients, you have enough.” And for those of you against universal health care because “you won’t be able to see the doctors you want,” I PAY FOR FUCKING INSURANCE TO SEE WHOEVER I WANT AND NEED TO SEE! and I am being denied by corporate for the level of care I need, whether it be by the provider or possible directed by the insurance company #luigi .

To be clear, I do not fault the doctor. I am losing them for a reason. Medicine is not what it used to be. Now privatized, medicine is all about profit over patient, even if you are paying through the nose for insurance to cover what is needed to keep you alive. As of right now, his “areas of expertise” still list in his top two skills, “cardio-oncology” and “cardiomyopathy and heart failure,” both of which pertain to my situation. But while I was referred to him, had an appointment scheduled because he was the best fit for my heart’s history, something happened corporate over the last month, and now I must find someone else.

Yes, I am more emotional right now about this than usual. I did not ask to have these health issues, and it isn’t like I did anything or have a family history. The issues I have with my heart and other body parts were done to me! This was the trade-off for beating my Hodgkin’s Lymphoma. Medicine did not know that all these bad things could happen 35 years ago. They do now. But the hard part is finding doctors who have some idea of understanding how much more intricate a patient, survivors like me are.

Last week, a fellow survivor passed, due to complications from her heart surgery, something many of my fellow survivors and I have gone through. I need a doctor that understands the needs of a Hodgkin’s Lymphoma survivor who underwent extreme radiation (4x the lifetime maximum exposure limit) and some of the most toxic chemotherapy drugs. I had one, and has now access has been taken away from me.

I’m pissed! I’ve survived 35 years because I have been able to find the care that I need which has not been easy. And now corporate says “no more.”

A Question Of “When”

Of all dates that I recognize, or “anniversarize,” this is likely my most difficult and traumatic, even more so than my original diagnosis of Hodgkin’s Lymphoma back in 1988. At the age of 22, being told I had cancer, has only left me with a surreal feeling, having survived cancer more than thirty-five years, should be filled with many anniversaries and milestones. Not once did I ever allow myself to think of anything other than reaching, and remaining in remission, for the rest of my life.

That all changed in April of 2008, when by chance, I got annoyed with a pain/chest tightness I experienced multiple times a day, for at least four months, and finally reached out to my family doctor. On a hunch, she ordered a “nuclear stress test,” not looking for anything in particular, definitely not what would eventually be discovered. Part way into that test, the testing was stopped as “something” became apparently concerning. Thirty-six hours later, at the age of 42, I was on an operating table having emergency bypass surgery. I was expected to have a triple bypass, but in the end, only had two completed. As my original angiogram above shows, I had what was diagnosed as blockage of the left anterior descending artery (LAD), less nerdy known as a “widow maker.” While I may likely have to explain the physiology of the LAD, you get the idea without explaination, what a “widow maker” references.

That phone call that I made, prevented what could have easily ended up being a fatal heart attack. My doctor making the arrangement for the test instead of me, likely saved weeks or months in delays to be scheduled as most have experienced trying to get something health related scheduled. But it was the comment by my newest doctor, a cardiologist, that jarred me the most I have ever experienced and to this day, triggers my PTSD, even more so that my experiences with cancer. “It wasn’t a question ‘if’ you were going to die, but ‘when’.” At 42 years old, I was slapped in the face with my mortality.

Unlike when I went through my treatments for Hodgkin’s, I did that for me, surviving this episode with my heart, I needed to get through this for someone other than me, two someones.

When I left the house that morning of the test, I said “I love you” and goodbye to my daughters as they were off to daycare and kindergarten. I would see them at the end of the day after school. That never happened. I did not get that chance, because everything was put into hyper motion to get me set for emergency heart surgery the next morning. I was devastated thinking I would never get to see my daughters ever again. I was actually facing my mortality, though for the second time, with the risks involved, that mortality was more imminent this time. At that time, my daughters already had friends who had lost their father, and to cardiac disease. The cause of my heart problem was not the typical cause, but rather late developing side effects from my cancer treatments. That changed nothing in regard to the fact, my daughters could very well lose their Dad. And it broke me that I could not hold them one last time before the surgery and tell them that I loved them. And that seemed to drive me all the more, that I needed to get through this surgery.

The story is a bit more complicated than I can put in one blog post, or what I really want to make this post about. But as you can see, the story has ended happily, not without other twists and turns with my health and other issues. But my daughters still have their Dad, and I still have them, seventeen years later, both now in college, and I have gotten to witness that.

My daughters were too young at the time to understand what was happening back in that time. And conversations were kept to age appropriate information, even when they had been brought into the hospital four days following my surgery, I still hooked up to machines, with tubes coming out of me, it was a necessary reunion to let them know “Daddy was going to be fine.” And for me, I had something inside me that pulled me through this crisis that I did not know that I had. My daughters and my love for them is what got me through this.

Every day, I make sure that my daughters know what they mean to me and they remind me what I mean to them, a bond between this girl dad and his daughters, never to be broken. My daughters believe that I can get through anything, that I am their protector, there for them at any moment of need, and do all I can to prepare them for the world. And as they reads this, I hope they know that from the days they were placed in my arms, they gave me purpose, a reason for living, unconditional, stronger than I could ever know existed.

I do not take for granted all of the extra time that I have gotten with them, the bedtimes, birthday parties, special school dances, and of course graduations, and these are all memories that they are able to have. And as they begin their adulthood, I have more time to be their example of how they deserve to be treated, what love, safety, and respect look like, and how important that needs to be to them.

As hard as this day is for me, I need to write this post annually, just as a reminder, my life did not end with that surgery, it continued. And it is my hope that I get to celebrate more of these years. It is not easy, as I do have other health issues related to my Hodgkin’s survival, but for now, they are all managed and dealt with as needed. And my daughters are now old enough, and there with me every step of the way. And that gives me a whole other level of strength and fight, not just for me, but for them.