Wonderful time to have to drive to a big city for a Doctors appointment. Especially an early morning appointment.
The highline wires lead the frosty way.
The roads were actually pretty decent and sanding/salt trucks were out. We made our appointment in plenty of time and were called in earlier than our appointment…no waiting. The new Pulmonary Dr K. is going to be alright I think, he explained some test results and prescribed two doses of antibiotics to be kept on hand. The liver scan showed some liver damage because of the Alpha 1 Antitrypsin Deficiency…not a surprise. We got to see the MRI of Far Guy’s lungs…and where his port was placed.
He answered all our questions about Far Guys port. We have been having problems with the port. We were taught at the infusion center to check for a blood return before giving the infusion. Lately blood returns have been few and far between. Two weeks ago when I was gone Far Guy went to the infusion center where the gals checked his port for a blood return and couldn’t get one either, he received a medication called Cathflow. It is a potent blood thinner…it usually takes a half hour to break through a clot or fibers at the inside end of a part…well it took an hour to finally get a blood return. Since then we have not had a blood return….even though Far Guy is well hydrated (think floating away)and he does everything but stand on his head. Dr.K said “What is the intention of your port? To check for blood flow or to administer medication? If it is to administer medications and they still flow through the port then everything is okay. IF at some point we cannot get anything to flow through the port then we will get a Radiologist to feed a wire through and clean it out.” Alrighty then…we are supposed to keep keeping on.
Far Guy can do his infusion from start to finish, both with me sitting across the room ( when I was ill and germy) and then when I was taking care of Jen he did it all by himself and Facetimed me to show me that it was going okay other than he got no blood return.
The infusions are given weekly on Thursdays…the protein only lasts 5.9 days in your system. He had more lung function tests yesterday, he is holding at 21% function. That is good news…not that the 21% is anything to celebrate but the fact that it is holding means that the infusions are doing what they are supposed to do = protect the lungs.
We were both really discouraged yesterday when the CDC came out with the blanket statement about antibiotics and how they are over used. To a person with undiagnosed Alpha 1 and bronchitis…without antibiotics to fight the infection your lungs will be destroyed bit by bit…part by part…that is what happened to Far Guy…the medical community failed him. If he had been properly diagnosed even three months before he was it would have made a difference…a diagnosis a year sooner and perhaps he wouldn’t be on oxygen.
Bottom line, if you know someone with Emphysema, Asthma or COPD…they should be tested for Alpha 1…it is a free test…and can save someones life.
Far Guy’s funny for the day was as we were driving away…his Oxygen Bottle slid around in the back seat, making the oxygen tubing pull at his nose…he said bad word a couple of times right out loud and ripped the nasal cannula off. I told him to calm down…he said no one realizes that where the hose goes so does the nose.
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