Uprooting For The Better?

    A opportunity to move out of the area I grew up in had become feasible. I grew tired of my hometown and desperately needed a change. My goals were to experience life, and find new ways of thinking. The "vote for the lesser evil" mindset was deeply ingrained in the culture of where I grew up. A "keep your head down, and don't rock the boat" mentality was embedded in us. As teens we fought against it, sadly as we aged, many of my peers adopted the complacency their parents had. I became an outcast from the outcasts. I needed a change, but how would that look for my health?

    I spoke with my doctors. All of them were so helpful and supportive, that making this decision became more difficult. With their encouragement, we found specialist that my doctors approved of, and I started making the calls. During those calls I had learned that the area I was moving to was the leading clinic in the world for the type of surgery I have, a Fontan Clinic. I could do this. I was ready to grow. I was ready to challenge myself in new ways. This meant putting my health and trust in new hands. 

    When making all the preparations to move so far, I picked a doctor who not only specialized in my Fontan surgery, but also in women's health. I had read that this particular doctor helped women who have Fontans' through pregnancy. This interested me for the "what ifs" I always had about raising children. My mind was set: I would be this doctors patient. 

    The day of my first appointment with this hospital; the doctor I was to meet had changed. The hospital did not let me know of this ahead of time, so when a different doctor introduced himself and shared that the doctor I had picked to meet wasn't available, I was disappointed. Everyone had reassured me that soon I would meet the doctor I had chosen, in the meantime the rest of the care team wanted to meet me. That reasoning felt safe with me so I continued on. During the first appointment the care team really laid on some information that I did not know about (and now upon reflection didn't need). The nurse had thrown so much information on me that I became overwhelmed. My PTSD started to become uncontrollable, and a strong wave of missing my old care team drown me. I didn't say much, and that didn't sit with the nurse well. When she pushed for me to say something, tears started to pool in my eyes. I had hit my limit of information to take in, and they didn't seem to respect that. I looked up into the fluorescent light for a weak attempt to stop the tears, but they came. 

    When the tears started pouring out, it was clear this nurse wasn't someone to handle emotions. She quickly brought in a social worker, and pressed that I should seek a therapist from them. I explained everything I was going through, and that the information was just too much for one sitting. The social worker understood and reassured me that everyone was there to support me. I left feeling overwhelmed, confused, and really missing home. Unfortunately, this would not be the only time I would leave feeling like this. 

    By the time my second appointment came around I had done a CT scan and stress test. The same doctor and nurse I had met before were there again. The doctor had told me that I needed a surgery. Keeping in mind of what I had told him about my medical trauma last visit, he was very kind on breaking the news "lightly". I was very upset and crying about it. When the nurse came in and saw me crying, the first thing out of her mouth was "crying again?" as if she couldn't even be bothered with me that day. When she learned that I was upset about having yet another surgery, she didn't even apologize for what she had said. When the surgery came and went, and the follow up appointment was scheduled to be with the original doctor I had chosen, I received an interesting phone call. A different nurse had called me to cancel my follow up appointment. She insisted that because I "felt fine" that there was no need for this doctor to see me. She also insisted that because "this stuff stresses you out", there's no reason to put me through it. Never in my life did I ever experience such lack of care from professionals. It was to the point where I started thinking that I was actually their healthiest patient, so there was no need for visits; until I turned 31.

    Shortly after my 31st birthday some strange issues started to surface. My typical mornings I would run my puppy, and workout on outdoor workout equipment. When I got home I would do yoga for 30min. Somehow I was gaining weight. I also would start to fall asleep at work. I brushed it off to being active and not really liking my job. It wasn't until I saw that my ankles became swollen, and my feet were hurting so bad, I knew something was wrong. In my gut I knew what was happening. I was going into Fontan failure.

    At my next typical appointment my doctor told me I was in pulmonary failure, not Fontan failure. He was surprised to hear that my follow up appointment was canceled, because the other doctor (who I had originally picked) was supposed to tell me this, and prescribe a new medication. For 6 months (or more) I was living life without the proper treatment I needed. The doctor I had been seeing prescribed the highest dose of Lasix along with Jardiance. I took the Jardiance for 3 days and then stopped due to being allergic to it. I let the care team know, but no one got back to me about what other medications I should be taking. I sat in a medical limbo and was told that this low energy painful existence was my new baseline. I wasn't going to accept this. 

     During the coming year I work with my therapist on advocating for myself with this hospital. Not only was my main cardiology team really dropping the ball, but so were other doctors. My symptoms weren't managed well, and I always felt like hell. I was growing desperate for help, so I called my original team.

    My original team was happy to hear from me, however there was a caveat. The hospital I was enrolled in could see all my calls and emails to my old team. Little to my knowledge they were watching me. At my last in person appointment a different face appeared. The doctor I had been seeing wasn't there, nor was the very first doctor I had picked. A brand new doctor came in with smiles and all excited to meet me. I expressed my anger with them, and all they could say was "we will be the best of friends". I didn't need a friend, I needed a consistent doctor. I walked out of the appointment full of rage. When I got home I made a virtual appointment with my old hospital. I saw my doctor right away, and we made plans for me to fly back for a physical appointment. That same day I received a private phone call, and the person on the other end had a lot to say.

    The caller was the last doctor I saw at the local hospital. They went on about reading my files, and trying to understand the position I was in. Rolling my eyes, I kindly let them know I was seeing my old doctors again. There was silence for a minute, and then a scolding. I was informed that the local hospital will not work with other hospitals, and seeking a second input is "unfair to the patient, and confuses them". I pressed on how it would be confusing, and the response was weak stating that "if you (I) chose to have a baby, and we (the local hospital) say no, but someone else said 'yes', how would that be fair? If something were to happen to you, how would it be fair to the both of us?". I found this argument to be absolutely pointless because I believe in bodily autonomy, and free will. I sighed and just placated along. This doctor drove the nail in the coffin so hard that I cancelled all remaining appointments with them. Shortly after I was back home with my trusted team. 

    Sitting back in the hospital I knew so well, and catching up with staff members, I learned the hard fact that I was right this whole time. I wasn't in pulmonary failure, but indeed, Fontan failure. The Lasix was the right drug to start with, but because of the delays I needed something more. I was put on to a new medication that is actually helping my quality of life. My doctors are very convinced that we can work on bring my energy back to where it was before I left. Working with a very complex heart takes time and patience. You need a team that is dedicated to you and responds to your symptoms properly. 

    In the medical world it is crucial to advocate for yourself. No one else will do it for you, and no one else knows your body like you do. If something doesn't sit right, ask questions. If you need a second opinion, go find it. No hospital can ever tell you what to do and what you can't do. Only you know yourself, and only you have the power to stand up for yourself.