So my local lung doc busted butt at my appointment on Friday & got my transfer with my previous supplier (before the debacle of this one that cut me off) reinstated.
They delivered me tanks & a concentrator on Friday. The problem is, they refused to give a second concentrator which I did have for the lower level of my house & for traveling. They are stating my insurance won’t cover it.
I’m currently exploring options of figuring that out & going around them.
I shot my transplant doc a quick email Friday with some questions, including some preliminary discussions on dual listing. (Dual listing is the process of being listed for transplant at more than one center.)
Next week I’ll write for information or call U of Maryland Medical Center to see what they offer & have to say, but so far it’s looking good because they have a great website with information just for dual listed patients or people curious about dual listing.
Their program & outcomes are good. The only qualm I have is my doctor doesn’t know anyone there on staff & I don’t know how they handle post transplant complications for their out of state patients.
So I do have some info to sort through before my doctor or I make any moves in that direction.
They have a guest house that while it’s not a transplant house, it’s a place to stay. It’s not that much more than the Penn Transplant house (still cheaper than a hotel). That is in Towson, so it’s not far, even though it is off campus.
I’m hoping it won’t come to dual listing, but with my quality of life & some of these issues as of late, it’s something I feel I at least have to look at & explore.
Many patients dual list with places like Cleveland Clinic, Columbia, or U of Pittsburgh. But Cleveland is way too far away for me to consider, especially getting treatment with any complications. I don’t like how Columbia manages their listing & their donation rates in NY are lower and waits are longer, & with the issues of mold at Pittsburgh I don’t feel safe there.
Johns Hopkins is in some sort of transition with their program, so this is the next best & closest option to explore for me.
I just have to see if I meet their criteria. If not, then no harm, no foul, I explored what I could in a place with a great program & great outcomes.
I’m just making sure I’m doing everything I can along the way to give myself the best shot at transplant I can.
I am fully comfortable & safe with my current center & they are still my first choice.
I just feel I want a back-up plan in another region with a relatively short wait time.