The past month has made it apparent to me that I need to ensure that my medical care doesn't fall through the cracks any more. Too many things have been shrugged off, ignored, or written off by doctors. My former PCP is very difficult to get ahold of. When I've said getting an appointment like him was like getting a meeting with Jesus, I was only exaggerating a little. I have had to call several times a day before or for several days in a row just to get something addressed. Suffice to say that when a person is medically fragile, this doesn't fly. I have let this go on for far too long. This isn't the first physician I have had issues with. However, I have finally decided that enough is enough and I have to strive for better care for myself.
I currently live half an hour away from work. And I don't plan to keep that going. Once I am done with my RN year, I plan on moving either to the town where I work or a town that is closer. I can honestly say that I am very comfortable with my current job and plan on staying there long-term. My nursing assistants can't be beat; they take great care of me and the residents, not to mention each other. We have a great time at work, there's a lot of humor and we get along well. More importantly, they seem to be much more sensitive and understanding of my health conditions and potential/current limitations. That in and of itself is extremely comforting. So, plans to move will be underway either shortly before, during, or after graduation. Yes, it's a lot to take on, but I can't deal with another winter being away from work for that long of a distance. This has been one of the most treacherous winters I have been through in a very long time! And definitely one of the worst I have driven in.
Similarly, I have decided that the Mayo system offers little benefit to me. They have their flaws, like all healthcare organizations. I have met some wonderful doctors through the Mayo system, but I have also dealt with many other issues, some which should never have happened in the first place. I have to decide whether or not I want to keep some of the current specialists I have through Mayo or if I want to completely change. Dr. Lightner, the urologist I saw about a year and a half ago for my Interstitial Cystitis is a pioneer in the disorder, and there aren't many others in the area that really know much about the disorder and its management. The neurologist I have seen through Mayo is also quite good, but I haven't decided how closely I want/need neurology to follow my case. There are definitely some neurological issues that need to be addressed. As far as GI goes, I haven't quite decided. There are some major GI issues going on as well which need to be addressed also but it's difficult because currently my reflux is quite bad. I have had to take PRN Maalox quite a few days lately. There's also the general tummy pain with digestion. No matter what part of the digestive process is happening, there is always pain, unfortunately. I'm not under the mistaken impression that all of my symptoms are going to be resolved by any means, but management is definitely something I am hoping for. There are several measures that could be taken, some which may or may not be extreme. So, there's a lot to think about. But, things need to be assessed further before all of this can happen. Namely, I believe a gastric motility study will have to be done. I would like to have my current PCP (whom I have just made my PCP in the past week...that's another story) Dr. Kline consult with Dr. Kane, my GI doc to see exactly how the process needs to be done. Generally people who have Mito who have GI issues have some sort of dysmotility. Dysmotility means that the muscles of the digestive system do not move things as effectively as they should throughout the digestive tract. Depending on how extensive this dysmotility is, that determines the course of management.
So, I have a new PCP. He is an awesome doctor, very compassionate and understanding. One of the things that kind of made my choice for me is the fact that he has seen me at my very worst. He was the doctor who had to airlift me to Sioux Falls after intubating me and putting me in a medically induced coma. The very last person I saw before I went under was him. He didn't leave my side the entire time. The next day he made a special call to my friend Emily at work to ask her how I was doing. In addition, I have worked with him at the nursing home and he's the only doctor I've encountered in my eight years in the nursing profession that will come in the middle of the night to the facility to check on a resident. At any rate, I just feel that he's a much better choice for me and someone who is really going to help me with everything. I have already ordered the Mito handbook for him. He told me that he would read any literature on Mitochondrial disease that I provided. That is incredibly reassuring. I have my first actual appointment with him on Monday. My hope and prayer is that this will actually help things start to change so maybe I can acheive more symptom management and quality of life. While there is no cure for Mito, nor are there incredibly effective treatments, generally some things are done to help maintain comfort and some semblance of quality of life.
Things are going to improve, but it is going to take time. My hope and prayer is that things are finally headed in the right direction.
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