My three volume asthma journey
At a recent specialist appointment, the doctor remarked that my chart was on to its third volume... He was referencing to some data that he wanted his resident to look up, however it was in a different volume than the one at my clinic appointment.
While I know that may not seem like much to many people but our relationship is only 6 years deep and there and for only one aspect of my health. My asthma is complex, like so many other severe asthmatics, however I had not really considered how much we had been through. There were so many appointments, test, ruling things in or out, not to mention the buffet of medication and my many, many, questions. It turns out that it all gets documents, while I have a lot of the information and at times, I go through and reorganize it. It is amazing what information that you need to have at your fingertips.
Part of the journey is when you have to look at other options. I will be the first to admit that my doctor patient relationship was not one that was always stellar. We struggled to get on the right footing at the beginning but, then found a way to find a common ground. That being said, it is never easy to hear that your doctor is out of options for you. One of the things that may have led to my chart being three volumes thick and growing, could be my search for other options independently. I have seen three worlds renowned pulmonologist. I receive ongoing care by one, but there was a time where we almost broke up. We were out of options, I was still considerably unwell and our frustration were boiling over. I decided to seek opinions elsewhere.
I sought the best that I could find. I took my understanding of my phenotype and researched who was doing research in the area. I looked for translational medicine applications, access to research studies and if other patients in similar situation felt that the doctor made a difference in their care. I researched what patient’s experiences were and, if they felt like their asthma or their understanding of their asthma had improved. In some cases, the reviews were mixed or they provided a controversial treatment with limited improvement. wherever, I still stand by the decision that I need to seek out further ideas in my care. There was one opinion that I received in which I am still hoping that the drug will come to market. It has had a few set backs, but uses a theory and molecule that could potential prove to be life altering for me.
I have to caution you if you are going down this path. It is exhausting and you will need every test, scan, PFT, list of medications with dates that they were tried, medical history and some good rationale why you are seeking outside opinions. It is absolutely the patients right to seek opinions and care elsewhere, however, try not to burn your bridges as many of the "super" specialists are highly connected. The reality is that doctors have egos and often don't want to be seen as unable to solve the puzzle, like it was a Sudoku and not your life. The flip side, is that you can sometimes create a beautiful harmony and really develop a care team, if you can get the doctors to work together. Be mindful of competing theories, your doctors will not always agree and you will need to navigate some tricky waters in what will be the best for your care.
Looking back on where I was six years ago, to where I am now, I am a much more empowered place. I am mostly well controlled and I have had the pleasures to learn something from every step of my three volume journey.
Do you get muscle cramps caused by your asthma medicine?