UnknxwnTraveler

Big update with big news. TLDR: I'm being removed from pump therapy and pursuing inhaled treatment. This week of visits yielded incredible notes. Both transplant and specialists were EXTREMELY impressed with my progress in adversity. I shared with them finisher photos, progress photos, let them in on my routine, etc. Transplant eval in another 6months but looks completely unnecessary. I asked my specialist if he thought we were in a stable enough state to throw a wrench in strategy and move to Yutrepia - an inhaled tripostinil. HE SAID YES. Not only saying yes, but stating that the work I've put in, and the healthy outcome from fitness, puts me as a model patient for this switch. IV treatment is end stage. I was end stage. I am now no longer. He says that the pump isn't gone forever. This disease will eventually progress and overcome the inhaled therapy. But we will get a few years of pump free life- and that's what I want. Especially considering my risk calculators before IV treatment put me dead before 40. Now it looks like I'll be moving to the pump again at that time instead- meaning I'll still be alive! There are very steep hurdles to overcome still. I'm currently being treated at a very high dose of infusion. Stopping too fast will kill me. It will take about 60 days of downward titration from the pump and upward titration of the inhaled once insurance approves and med is dispensed. During this transition I'm expected to face the same severity of side effects I did before the pump. Overdosing side effects. Food aversion. Being really REALLY sick. HOWEVER. I'm willing and will pay that tax. Timeline estimation is med will be in hand in a couple of weeks. Which will start the wean/upward titration for each route. 60 days to titrate downward to the lowest effective IV dosing. They'll then do a RHC to check we aren't harming my heart. And if those numbers prove fine, the Hickman implant will be removed. Back in Dallas Aug 13th for face to face where I should be about halfway through the route transition. God. Is. Good.

After rereading my email, I don't think I was granted a pass. I think I have to "sell" 25 tickets to acquire it. Please use any other link but mine. I'll be in Florida during the con either way. I'm not about to encourage link use for @GCXEvent when I can't track it, and when it doesn't offer users any benefit. If I'm not at the status to receive a creator pass naturally, and leverage affiliate selling to add perks, then I choose not to sell at all.