June 17th, Need some prayers in these next few days, three weeks ago there were issues getting me access however I did get access and had my IVIG. But yesterday, none of the nurses could get me access as they each felt resistant and the needle wasn't going through like it usually does. Monday my dad will be spending most of his day making phone calls to the doc that put my port in 15 years ago, and to my primary physician since he was not working yesterday (FYI almost no docs works on Fridays apparently)
I've managed to get a hold of my immunologist yesterday after my dad called the triage nurse who doesn't know the difference between it being an urgent call or something else. I actually call the receptionist where you make appointment and told the women about the urgency that he needed to call me ASAP.
My dad and I talked with my immunologist, and the reality of the port is that maybe it's just time to have it out. It gave me 15 years and 7 months, weirdly enough I'm not getting an biological signs like a lot of people do. It's really all Mechanical from this point, there's no redness, nothing that my skin is showing signs of an issue.
So I'm kind of thinking and as a family decision, that the Port is going to have to come out rather than potentially fixing it. We are going to try and get an ultrasound scheduled to see if we can see what's going on because we won't be able to do an dye test because of the issues with the port.
So what's my next options? My immunologist suggested Sub-Q but with the amount of grams I get that it would be near impossible to do plus I could get more of a reaction and/or reaction Plural with Sub-Q than how things are now with doing it every three weeks for four and a half hours.
So yesturday how it went with me getting my infusion is that the wonderful nurse name Shelly, who actually used to work for Red Cross looks at my arm and saw some pretty good veins. So she prep me and I got my stuff via antecubital vein.
So the odds are that my next infusion, it will be another IV in the arms or hand if I can, we will be looking into PICC but for right now I think we'll do the regular IV method.
As of June 21st, there hadn't been much set in motion about getting an ultrasound or anything done. I will share details when I can.