Well Far Guy has a port. We spent one morning last week at the hospital. The procedure went just fine. Far Guy has known the surgeon for years. After reading through his chart he suggested several times that we make a trip to Mayo. So that is in the works.
The Nurses accessed the port for the first time this week.
He was happier than he looks.
I have the mixing of “the stuff” down pat. This week I learned all about “the sterile field” and the steps in accessing the port….blood returns…clamping on and off…saline and heparin. I am going to make a step by step list this week. I believe the nurses will have me do it with their help this next week.
Am I a little nervous…heck yes. I am sure Lynn will have to remind me how to do some things. I told them all that I won’t do it at home until I feel comfortable.
I can barely look at it without needles in it. I have been known to get a tad dizzy
almost pass out when he has cut his hands…I am not very much help from the floor. If he were someone else it would not be a problem. Once I make it through the first few times… I will be fine. Eventually he can possibly infuse himself.
Why do we want to do it at home? Fewer germs…the germs we have here he is used to. Going in and out of the Clinic every week where there are a bunch of sick people is like Russian Roulette…sooner or later you will catch a bullet. Plus that if we travel someplace we will be mobile. Supposedly each weeks “stuff” will include everything we need to accomplish the task.
Far Guy reports that it was easier and less painful using the port versus an IV.
The side effects of the treatments are extreme fatigue and shortness of breath for about four days. This week it wasn’t as bad because he is on Prednisone for extreme shortness of breath.
The infusions are not a cure…there is no cure for Alpha 1 Antitrypsin Deficiency. The infusion in trials last for 5.9 days plus or minus and protects the lungs from further deterioration. Yes, I have read some of the trials and the results. Fine late night reading.
Oh yes, just so you know when I was doing the final push of saline and heparin he got all wide eyed, gasped, hung his head off on his shoulder and stuck his tongue out. Next time I may put a paper bag over his head.