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

Saturday, February 9, 2013

Doctors visits, treatments and medication, oh my!

It has been quite some time since my last post, so I have several topics to cover. First IV therapy and my port, Dax. Things are going well in those areas, the port is one of the best decisions I think I have made for my health. It is just so much easier now to get IV therapy! I am still getting the multivitamins, minerals and lipids and they have added amino acids to the mix. Well not really, because it is in a separate bag. So now I get 3 bags and it takes 5 hours (average). Depending on whether or not I have labs. I get them every week. I have the weekly labs and every other week they add in a PT INR and once a month I have a HUGE list in the place of those. I enjoy getting the IVs, I think of it as a spa (LOL). I go in 3 days a week, so it is exhausting but I think it is helping.

When I say helping, I don’t mean it stops the pain or anything, hell I don’t really think it is doing much for the
fatigue either. My Dr. says that my numbers are getting back up; I think she is hoping that my numbers would go up and everything would fall into place but I’m not that easy. Plus there is a national shortage on lipids so I haven’t been
getting them for the past 2 weeks. My cholesterol has dropped since then, and my Vitamin A is still undetectable and my
D is still low, I’m slightly anemic; but other than that my numbers are better. My Dr. also gave me 4 new prescriptions
to start off the year, and they seem to be helping too.

In family news, we got another dog! His name is Mack and he is really cute and very funny. He is 2 so he needs a lot
of play time, which has really helped me try to be more active. My doctor had said something about starting physical
therapy, but with flu season she decided I should try to do more at home to start off. I go out every other day to
throw a Frisbee and walk around the yard. He is really gentle with me so I’m positive he knows that I am sick.

My Dad has been in the hospital this week, so I canceled all of my IVs so that I could go in to see him. Unfortunately
driving back and forth 3 days a week is too much. I wasn’t able to go see him yesterday or today. Yesterday I was just
so tired, and today I can barely walk without pain medicine. I even had lunch delivered because I couldn’t stand. Dad
was very understanding and told me not to worry about it. He is a pretty private person so I won’t say what was wrong
but I will say that he is doing better, they may release him on Monday. I am so happy that he is doing better; I have a
tough time dealing when I am not the patient, LOL. I am a self admitted control freak!!