My New Normal

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In February/March 2015 I had pneumonia, as I do every year. Thanks to the Affordable Care Act, I was able to go to the two week follow up appointment. The doctor thought I had some ongoing problems and ordered some tests in April. The results sent me to a pulmonologist. She was reading off the findings, and breezed right over the words Alpha-1, but luckily my daughter was there and informed her that it wasn't the first time we'd heard that, and that she'd better test for it.

 

In May, I got the results... I had Alpha-1 Antitrypsin Deficiency. I was a ZZ with a level of 19. I cried; I was overwhelmed; I started doing my research. My daughter, Manda, is an MZ with a level of only 77, and has Auto-Immune issues. It turns out that A1AT is one of the main Anit-Inflammatory proteins in the body. We are joining a growing movenent to force the medical community to recognize that MZ's are not "just carriers" but often have the same issues as ZZ's, since the Z is NOT a recessive gene, but a heterozygote.

 

By early June, I received my first Augmentation Therapy and have been getting plasma every week since. We've postponed two vacations, I've had numerous symptoms from my genetic condition and many side effects from my Zemaira (plasma), Advair, and Singular.

 

My father was also an Alpha and had to have a liver transplant in 1991. He had so many health problems after that, but he lived for over 13 years  I know all of the ins & outs, the good & bad of a transplant. So, when my brand new pulmonary doctor hit me with wanting to get me listed for a double lung transplant the first time I saw him, (last Monday, December 7, 2015), I was very shocked.

 

He's a really good doctor, though, and he put in an order for me to get a port, and rushed it through. My veins have always been hard to find, and now they see a needle and go into hiding. I got my port last Thursday, (December 10, 2015) and while I've been super tired and in a good deal of pain, it seems to be healing nicely.