What A Week!

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.


5 thoughts on “What A Week!

  1. Good luck, Nikki. My first husband had a liver transplant at UMC in Tucson, AZ in ’98. We had to rent an apartment, but it all worked out. I will keep you in my prayers. Judy

    Liked by 1 person

  2. Nikki, a couple of additional thoughts regarding UMMC. Our home is 22.7 miles south (down I-95). We have a ton of extra room and happy to act as hosts for your family, friends who may wish to visit should your transplant occur at UMMC. One other small consideration is that my daughter is a 2014 graduate of the Emergency Medicine residency at UMMC. Although she practices in Annapolis, she still maintains close relationships with many attending physicians at UMMC, which might be helpful. For that matter, I’m happy to do what I can to assist you in navigating UMMC/Baltimore as well, aka Uber Friend.
    Knockin’ Wood 4U!

    Liked by 1 person

    • Dennis, I’m sorry for the delayed reply. That you would offer this really means a lot to me & I think it helps. This weekend I found a woman with LAM who I was friends with on social media that I thought had been transplanted elsewhere but was actually transplanted at U of MD. She’s contacting her coordinator to get some info for me & talked to me a lot. It was a great thing. I know we haven’t met, but I know we talk often and you’ve been supportive. This does mean a lot to have a connection & resource down there close should we need it. I just have a few questions I need answered first, like if I would qualify and how they handle the after care for out of state patients in an emergency. But otherwise I feel very good about the program and the info they did provide. I will keep you posted for sure.

      Liked by 1 person

      • Most pleased to do what I can to help you & your family. Yes, even though we haven’t met, your “Midwest Nice” shines through in all you do. You might also think about enlisting our Twitter friend, Sumit Patel (@S_P_MD) who is currently an EM resident at UMMC, as another Baltimore & inside UMMC resource.

        Liked by 1 person

      • oh yes, I forgot too that’s where Sumit works. Good to know 🙂


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