My Genetic Report came back, I am an MM which means I am like most other people in America…normal. Far Guy is an SZ. Which means our children are either MS or MZ, they are carriers of the Alpha 1 Antitrypsin Deficiency. From what I have read a MS carrier would be better than the MZ carrier because the MZ carrier could get some symptoms. So that is it in a nutshell. Genetics was not one of my strong subjects in school.
We survived our first home infusion. It was a bit rocky. Trica our oldest daughter who is a Nurse Practitioner came over to see how the medication was mixed so just incase I am ill/ or croak she could take over. It is a good thing she was here, I am not sure why but what the Infusion Center used and what we were sent in the Infusion Kit from Coram was different. They sent outdated instructions also. We figured it all out…but for what that company charges for the serum ($5,000 a week) you would think they would be on top of little things like instructions. I called their Pharmacist who was a helpful gal, but she could not answer my questions because she has never witnessed or performed an infusion. I finally called one of the Nurses (Lynn) at the Infusion Center and she answered my questions.
I am tired and a bit cranky. I don’t think it is too much to ask that big Drug Companies get their poop in a pile. They also sent really lousy thin sterile gloves…I will find some online that are not so flimsy. I shouldn’t have to…but I will because sooner or later I will rip a hole in one. Why does everything have to be such a struggle?
Far Guy still suffers from the side effects of this serum (Aralast), extreme fatigue and shortness of breath for five days. But he hasn’t had any infections either…that is what the serum is supposed to do…protect his lungs if he gets an infection.
We try to take it all one day at a time.