Month: February 2017

Man, has it been a week! The complete insanity of dealing with super-egos of professionals you look to for a lifeline in the rough seas of your life, can be draining, and just an unnecessary “harm” to those already down.  Last week I was knocked on my ass by such an ego.  After I nicely, and somewhat timidly, explained to the transplant center of the “incompatibility” issues with the doctor I was assigned to, (which really was a nice way of saying that he was a jerk and already figured he couldn’t help me anyway) I received a call that the doctor in question mandated that if I did not want to see him, that I would see no one else at that hospital.  No matter how vulnerable or sick I was, he kicked me out of the program and told me to seek counsel elsewhere. 

Just like that: months, and months (hell, years if you calculate into it my trudging the uphill battle with local cardiologists) to get there and seen by a specialist, all was dashed in an instant by his ego; which is apparently larger than my own health issues.  If only this transplant specialist could figure out a way to excise his own bad temperament and replace it with a kind “heart” that upholds his Hippocratic oath of “do no harm.”  You, sir, have caused harm.  You have jeopardized my recovery by making me start over in finding another specialist.  May I remind you of uttering this empty promise upon taking your Oath:  “I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon’s knife or the chemist’s drug…May I always act so as to preserve the finest traditions of my calling and may I long experience the joy of healing those who seek my help.”   You should be ashamed of the ego you have acquired at the expense of those seeking refuge in your education. 

For this particular specialist, the “joy of healing” is his own, and it’s meaning warped by his egotistical illusion of “playing God.”  Apparently, I am not worth saving, because I dared to doubt him.  I guess he showed me, but I will not cower to “false prophets.”  I remain undistracted by his hasty assessment, and the search for an ethical and talented doctor will continue.  “I am happy to call your bluff, sir, and will never shadow your door again.  I haven’t neither the stomach, or time, for such games.”  So now what?  I wait…again, for another hospital to accept me into their program.  Who knows how long it will take?  But this is for certain; there will definitely be a lull in forward-movement for a couple months.

The lull is hard.  We all seem to “pick up arms’ when a fight is looming.  Most of my friends are eager to offer their kind words, advice and help when the flag has been raised.  But the lull, that is when I find that the loneliness seeps in and the isolation of illness most pronounced.  I understand that there is some difficulty in being friends with chronically ill people.  “What if I say something wrong, or am inadvertently condescending?  Do I invite them out to socialize?  Can I talk about business opportunities? Will that insult them or make them sad that they are not in careers right now?” – amongst countless other scenarios.  I get that being a friend of a sick person can sometimes be a figurative minefield, and it is just easier to stay away to avoid any conflict.  But I also would say that this is the best time to engage with this friend.  Maybe learn something new about them such as only being sick will reveal: where they find their hope from; how they apply their grit and determination, but also where their vulnerabilities and fears lie.  Sickness opens up a different type of connectedness that crosses the line of polite conversation.  The truest of friends will want to go there to the dark areas and offer some light when needed.  These friendships are essential.   

I have my own difficulties in bridging the gap of what our friendship once was, and if whether that relationship can survive the tides of sickness, or pass the test of being real or superficial.  The good news is, that fake friends become glaringly obvious.  But the real friends still have leaps to make over their fear of death – mine and their own.  I tried once to joke with a friend about my illness; it didn’t go well.  I made some flippant remark about “not dying” and it was met with a deafening silence, by my most humorous of friends.  Apparently my sickness isn’t funny.  Death cannot be funny, I guess.  It is a shame, as sometimes laughter in the face of something so ominous is a relief: politically correct or not.  I mean my favorite joke in the world is, “Why did the monkey fall out of the tree?  Because it was dead!”  That is my humor, it seems. I need someone to laugh with me about my life, and like it or not, this is my life for now.

I believe, mostly, that having a long illness can emotionally benefit your friends and loved ones in their grieving process, because they get to essentially have the chance to say how they feel; enjoy more quality time together; maybe clear-up previous misunderstandings or tensions, and just to say “good-bye” if that end comes.  They get to come to terms with it slowly.  You always read about those whose loved ones pass unexpectedly, that their state of grief is in not having the ability to say “goodbye.”   However, there is awkwardness in knowing and waiting: and sometimes the feeling of evading that person altogether is just easier, or that it is a better option than witnessing the parameters of a friendship changing.  And some friends simply feel helpless, not knowing what to do or say.  The truth is, I don’t need you to do anything other than just being the person I enjoyed having in my life; knowing I can count on a laugh, helping hand or beautifully choreographed “fucker” slipped into conversation.  Right now I need you to just be you, and help add some normalcy to my life.  

So as my friend, I offer this advice in trying to navigate me on this journey: invite me to be part of your events; go to painting parties; crafting stuff; do lunch and hang out at bars.  I am up for it!  I miss the socializing!  Ask me questions if you want, or don’t!  I am happy not to talk about it too.  Talk with me about other things that made me “me” before this illness became all I am about.  Tell me about your lives, and allow me to be part of it.  Make me interested in life again.  Boredom is my absolute enemy right now, as it allows me to think too much and become engulfed in the “what-ifs” of an uncertain future.  Take me away from all that by engaging in the here and now with me.  Life is constantly moving and I am doing my best not to get stuck in that lull between being sick to finding recovery; asshole doctors aside, the process is taxing, and I need to offset it by finding recluse in strong friendships. 

I am constantly trying to find a balance between “sharing my truth” and focusing on living life happily regardless of my current issue.  I still will make mistakes in gauging what you want to talk about.  There will be times I make light of it as a way to not make you feel uncomfortable – make me tell you how I feel anyway!  There will be times that I am so angry at the process  – curse at the sky with me!  I need that camaraderie because underneath this illness, I am still “me,” and we are still friends.  When you are sick, it is easy to sit down for a while to take stock in what is happening and how best to deal with it.  It is also easy to not get back up.  If I am not moving, I am not living.  So even when I lose sight of what I am moving towards, and doctors kick me out on my ass, I ask you, as my friends, to make me get back up! 

This week amongst the chaos of a political transition, and watching all the advocating and demonstrations, I found myself contemplating being an advocate of a different nature – my own. After an initial consultation last week at the transplant center with a specialist, I walked away feeling as though I was not actually heard, or even worse, that my health history wasn’t adequately considered. This lack of communication and trust is no way to begin a relationship.

Starting over with a new doctor is always difficult for me because my health history is somewhat confusing. Being an “outlier,” as I was called at my last appointment, has done a disservice to my recovery because as the doctor put it, “I am not easy.” That is right, Doc. When it deals with matters of my “heart,” I have never been easy. But when it comes to my heart health, that presents a huge problem, because most patients follow the same trajectory of sickness and recovery, therefore that predictability makes treating patients successfully just “another day at the office.” Then walks in me. No preconditions; young with no other health issues; somewhat asymptomatic with mild-moderate limitations; medications not tolerated even at the lowest dosages and no foreseeable progress to recovery. What to do with me? All before did exactly what this specialist has done; order a bevy of tests – most of which I have taken numerous times before.

Per my experience, first the new cardiologist completely denounces all cardiac diagnosis, tests, and any hands that had anything to do with their completion. It is my understanding that anyone who came before was unqualified and that ALL the tests will need to be performed again; the caveat being this time, and only this time, they will be done correctly and the results will be the “true” results. However, most results are consistent with the last.  This specialist made a dismissing remark about my file of 8 years and 5 cardiologists being so thick with test results. Hmm, you think? I should have explained that it simply was a crypt of those egos that came before him; all pierced through and attached for the next ego to judge – “don’t be the next victim.” Not sure he would have seen the humor but I find the metaphor satisfying. I understand that tests are necessary – until they are unnecessary. Tests are expensive, even with insurance. And more pointedly, some tests are invasive, painful or just plain bothersome and embarrassing. Why put me through more without justification other than stroking your own ego? If you think I may be angry by this constant prodding, your assessment would be correct.

So, on par with my previous experiences, this specialist called for tests – tests I have completed before and was provided in his file. I expected it, and was willing to participate in the spirit of searching all nooks and crannies. Not happily, but willingly. I went home that day knowing the following week I would begin with stroking the new specialist’s ego – but also knowing something else, the new tests would show the same results as the tests I took last summer. I hemmed and hawed for days on whether I should say something, even though I wasn’t heard in the initial consultation the first time; or just pay and endure the testing I would take, even without an explanation as to why I was doing them again. My husband listened to my bellowing patiently and echoed my own frustration at the circles we seem to constantly plod along in our journey with heart failure. We have passed this patch in the field before, we both know it, but we also know that part of being a good patient, is patiently waiting as the doctor comes to his own conclusions. No matter how much money or pain it costs us.

My husband and I are intelligent. We stay informed on my health and what the purpose of the testing ordered is; and how a diagnosis will determine our future. We come to appointments prepared, each with our own questions and, we think at least, something constructive or useful to add to the conversation. We are never passive. But this specialist dominated the conversation and didn’t listen to what our experience with MY condition in particular, was. He missed an opportunity to confer with “experts.” Yes, I AM an expert at my own symptoms, what has and hasn’t worked in the past, how my testing has mirrored or disproved my condition, and in general, what it is like to live in THIS body and with MY particular ailment. You would think for someone that says, “I am not easy,” that any additional information would be welcomed. My husband knows this information second to myself, because I am verbal with him on those symptoms and he is actively involved with my health issues. We should be conferred with just as much as any other “expert.” Coming together with a heart failure specialist should be a “meeting of minds” or a meeting of “experts.” This is what makes a healthy doctor/patient relationship and has also proven in medical research to increase the chances of a successful recovery. This meeting was one-sided however.

It is deeply embedded into our society that a doctor’s opinion (especially a specialist) is unquestionable – a wisdom beyond refute. And therefore, we showed respect to the establishment of the transplant center we were at, and of the employees in it. And beyond that, we are southerners, so in everything, we are polite. It is difficult to point out that our experience there was less than stellar. Finding your own voice can be intimidating because you are looking for a solution outside your own understanding in that environment. You lean on your health professionals to search for answers for you. And sometimes of even greater importance, in such a shaky time in your life, you look for “care” in healthcare.

We came to the conclusion that the lapse we had in communication with this specialist last week was too gaping, and really just a “deal-breaker” in building a strong relationship. There are certain “non-negotiables” in my medical care. Not listening is one of them. I mean, I am trusting this man with my very life! My husband is trusting him to save his wife and the mother of his children! As in any relationship, without communication, we have nothing.   The risk of losing my fight because of communication issues, or ego, is too great a price. As this is not a trivial matter, we decided to cancel the tests he ordered and request a different specialist at the hospital. This decision came with some nail-biting as they do not have to assign me a new specialist and unfortunately, this will be viewed as somewhat of an insult. I hope it isn’t, and more seen as an incompatibility issue, but conjecture, his and mine, being just that, who knows? We had to base future results on one meeting, and that takes a bit of gambling and “going with your gut” instincts. So we rolled the dice in the hopes of a better outcome. Only time will tell if it was a sure bet.

When you are sick, you lose so much. The life you once lived is behind you and new “normals” are internally negotiated and constantly tested. The biggest is our loss of ability to control our situation and, not only how it affects us, but also our loved ones. Losing that ability to control your own path is frightening. And having to trust people, such as doctors, that you really have no frame of reference in doing so, even more so. Each time is a leap of faith. I like the firm ground. I know where it is, and I know what to expect. It is concrete (pun intended).  I know I am a control freak; this is what makes putting my life into the hands of another so challenging. But I think I am fair in their assessment. I don’t want anyone to conclude that I think I know more than doctors, I don’t. I don’t presume to. What I do know is when I am being dismissed; when I am considered as an unimportant partner in my own healthcare – and that assumption is careless, if not dangerous.

In this world, we all face times that are simply out of our control. But what we always have control of is how we react and respond to those difficulties.   In healthcare, gaining some control means asking questions, pushing back when you feel railroaded and saying “no” sometimes. Yes, it is scary to do this, and has effectively taken 8 years for me to find my own voice, but what I have learned is that I am my own best advocate – alongside my husband. Nobody wants more than we do for a successful outcome and so we have to trust in our own instincts. And, we have to trust the staff in which we share that responsibility. I cannot trust anyone who cannot take the time to listen. Southern or not, I should not feel like I have to apologize for that. There are times in life to be polite, and to sit back quietly and listen. When it comes to your health, your very life – blush if you must – but protest loudly and unapologetically if needed. If you don’t, then who will?