We spent a morning at the clinic in Fargo this week. Far Guy is in a five year study. This is his second year. They did a CT Scan of his lungs, nothing has changed in the last year…his nodules that showed up last year are unchanged. They appear to be non cancerous nodules that the Dr is not worried about.
Road between Lake Park and Hawley
A few weeks ago he had a Liver Biopsy; he does not have a fatty liver so no change in diet is warranted, he has some damage which is consistant with Alpha 1 Antitrypsin Deficiency. The biopsy made him sore and uncomfortable for a few days. We are not big alcohol drinkers…Far Guy would not be alive if he drank more than one alcoholic drink a week…that is info straight from his Liver Specialist.
The test for Alpha 1 is a simple free blood test, we wish that more cousins would get tested so that we could help make two and two = four. So far everyone seems to be afraid of the results. I can understand that…I was afraid of the results too. Since it came from both sides of Far Guys Family…we can only guess where the lung problems were and where the liver problems are…since both are affected by Alpha 1.
Not everyone that has Alpha 1 is affected, some live normal healthy lives and don’t realize they have it. That is the hope we have for our daughters and our Grandson.
The weekly infusions are becoming old hat now, the whole process takes about an hour and thirty minutes. He is getting much better at sticking himself! He can do the entire process by himself but I usually help. Is it fun? No, he usually spends about two days every week not feeling well…he tires easily and just feels yucky. BUT he hasn’t had to be in the hospital with lung infections since he began the infusions in May of 2015.
I wrote an email complaint to the clinic this week. We had to wait one hour for a blood draw in a perfume filled waiting room. Four people were working, but the best they could manage was five draws in an hour.