About Me

My photo
I am a wife and mother who also has cystic fibrosis and a mitochondrial disease.

Wednesday, October 17, 2012

Doctors appointment

So yesterday I had my first doctor’s appointment with my primary care doctor in over a year. It went well; but the news was not good. I’m not sure how much sense that makes; it went well because she immediately ordered treatments and medications.

So at my hospital stay in February I was in NIH, where I get treated for my cystic fibrosis. I had several consults that visit to try to get someone to help me with my mitochondrial disease. They did a ton of lab work while I was in, but I still could not be fit into a study for the mito. So yesterday my doctor looked over my copies of my labs and she freaked out. Freaked. Out.
My test showed severe malnutrition. Because it isn’t CF related, but rather mito related, NIH knew about it…and did nothing. So the reason I have been feeling progressively worse over the past 7 months is because I am still not absorbing enough vitamins, mineral and fats and according to my doctor my body is slowly starving to death. I’d like to think she was just being dramatic. (NIH did nothing because I didn’t fit into a current protocol, and as a government run hospital- I have to fit or they can’t help.) Anyhow I got a copy of my records for my SSDI hearing, and brought it along with me, b/c I knew some of my levels would be low and that my CK was 3294 (normal is 38-252). My prealbumin level was low, which is an indicator of malnutrition. Not to mention my Vitamins A, C and all of the B vitamins, selenium, iron and magnesium were low; my Vitamin D was undetectable. Oh…and my cholesterol was 80; which is too low. So she sent me for blood work, and is rechecking 21 of the labs to get a base line. Next comes the IV therapy, which I am really happy about. She is planning to double the dose I got last time, which was doubled from a normal dose already. I’m excited to start IV therapy again and I can’t wait to feel better. In addition to the IV therapy I have 9 new prescriptions, which include things to help with my pain. YAY! My doctor is also sending me to get a port (double?) which I am nervous about but so many people who I am friends with on Facebook have been able to give me information on the process. I am so grateful for them.

Now I know a lot of you probably looked at my picture and thought malnourished? This chick is fat!! While it is true I don’t *look* malnourished, sometimes I don’t *look* sick at all. I get very frustrated with some family and friends sometimes. I don’t like being treated like a sick person, but I am. I do a good imitation of someone who is just a little tired, and I'd like to think I can still pull of acting healthier than I really am most of the time. I don’t want pity, but just consideration or even acknowledgement would be nice. Maybe that is selfish of me?

Anyhow, I haven’t been able to lose weight for years and I haven’t gained either. I have staying within 10 lbs of my current weight. I can’t exercise due to my mito issues (although with my new pain meds I am hoping that I can start something light) but my biggest issue is that (according to my doctor you have to absorb fat to be able to burn fat. Sounded weird to me, but this article explains it
I eat pretty healthy, although my portions are huge and I almost always feel hungry. My doctor says I feel hungry and eat large portions b/c I am not absorbing what I need from normal amounts of food. So my body always wants more.

Frank and I discussed telling our friends and family and what we would say. My doctor is on top of it, and now that I have health insurance I can start treatments in addition to the new medications. I don’t want anyone to worry, but I want to keep everyone updated.