I went to a nurse practitioner that works in Dr. P's office this morning. She was extremely concerned about the episode I had on Tuesday and did suggest I go to a neurologist. Even though I have been to two neurologists in the past, there is a particular neuro doc that Mom Mary recommended because her husband was having problems and when she took him to this doctor, he was wonderful. The doctor said, "You won't leave here until you have an answer." That is the kind of doctor I need! So, hopefully we will be adding a neurologist, Dr. M to my care team. The nurse practitioner also wanted to have Dr. P come and talk with me. We have already discussed how Mitochondrial Disease causes my autonomic nervous system to act up. This is known as dysautonomia. It makes it so that my blood pressure and heart rate do not regulate themselves, and are very high. My resting heart rate is usually about 100-110 beats per minute, but many times it is over that. The easiest way I can explain this is that my body is always stuck in the "fight or flight" response. Meaning, no matter what, most of the time it can not regulate blood pressure and heart rate. Dr. P's idea was to put me on a beta-blocker called Propranolol, which will hopefully help to regulate both of these. I have to say, I'm not sure exactly how I feel about being on this new medication. It makes me kind of nervous, because I don't necessarily want to be on this type of medication for a long period of time. But, a big part of the reason my body is so tired is because it is working so hard. Normal heart rates run at about 60-80 beats per minute, and mine is far too high. This means that my heart is working much harder than it should, and probably much harder than it needs to. In addition, the nurse practitioner also said she would call Dr. M's office to make an appointment with him as soon as possible (hopefully). My hope is that she will call me by Monday or Tuesday with an appointment day and time. However, I'm somewhat nervous about this whole thing. I want Mom Mary to come with me to the appointment because she actually witnessed the episode and could easily describe it to Dr. M. This will give it some more credibility. I did not actually see myself during the episode, so I can't provide any information beyond what I experienced. Telling Dr. M what I experienced is certainly valuable, at least to a point. But, it will probably have a lot more credibility if a person (particularly a nurse) can give an eye witness account of the episode. My hope and prayer is that 1) Mom Mary will be willing to go with me, and 2) It will work for her schedule.
I have a whole lot more to do in the near future. I just submitted my financial aid application tonight for college, but I also have my advanced directive to finish and request a copy of my medical records. After looking through some articles on MitoAction (which I highly recommend for anyone with a family member who has Mito or anyone with Mito), I have realized there are quite a few other things I need to do to advocate for myself. It is up to me to educate all of my care providers, including my PCP about Mito. That is a very difficult task, even for someone who has an actual confirmed diagnosis. Oy. I just don't know what else to do. The only way I'm going to get better care and better quality of life is for me to advocate for myself. There are only a select few that I would be willing to allow to advocate for me in the event that I can not do so myself. With that amount of people being so low, I have to make sure that my wishes are outlined very deliberately. I still have a great deal to think about as far as my advanced directive is concerned. The biggest issue at hand is mainly who I will choose to be my Healthcare POA in the event that I can not make decisions for myself and/or I can not advocate or assist people in managing my care. As difficult of a decision as this is, I also know that it is a huge responsibility and not something that anyone should take lightly. With that being said, if I were to ask a person to be my POA, I am afraid that they would say that they are not willing to do this for me.
So, needless to say I have a lot of organizing to do, and it is not all going to be very easy. I have to coordinate everything so that I am able to provide my doctors with up-to-date and (hopefully) concise information regarding my case and my diagnosis. This won't all happen overnight either, in fact it will probably take weeks to put together. Oh well. At least I decided to take on this project now, during the summer instead of later when I have school to worry about as well.
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