About Me

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

Monday, October 19, 2015

Update fall of 2015

I haven't updated in a while, and I'm sorry about that. I have just been so tired and on the days when I have energy I am out living. My PCP doctor is back and my IVs are set up again, and I'm happy about that. My last appointment I had to wait for almost 2 hours to see her though, and I'm not happy about that. I have been discussing getting a new PCP but I really *LOVE* the one I have, and my case is complicated. So I'm really not sure what to do yet, its a lot to think about.
My IVs have been going pretty well so far. I've got a few more supplements to take, and my cholesterol has finally gone up. My vitamin levels are still not up to par, but we'll get there. I have hope.

I did go to NIH this past week for my CF clinic. My lung function dropped, I could tell without the test though. I could feel a difference every month. I'm waiting for the sputum culture results, they're going to send me some antibiotics to take. If my sputum shows no change then this drop is muscle related, and I have had increased muscle weakness here lately. I'm also going back at some point to get some tests run, to check my digestive system, my lungs, and nerves. Next week I am hopefully going to the dentist to get my teeth fixed, which will be nice to finally get it done.

As for the rest of life, it's going well. My daughter is still in college and doing very well, my husband is still amazing, and I am still extremely thankful for my life.