Sunday, April 27, 2014

And there it goes-lung function dropping...

We returned to Madison, Wi this past Monday for a routine follow up.  After my local visit with my pulmononolgist in late March where my lung function was 22%, my doc called Wisconsin to alert them and to discuss returning back to the active portion of the transplant list.  They called and wanted me sooner than April 21 but due to extenuating circumstances I wasn't able to get there sooner. They asked if I could wait to discuss the transplant list and I felt I could.
Monday's visit included labs, breathing tests, blood gases, 6min oximetry, and clinic visits.  My spirometry revealed a lung function of 19%.  I didn't walk as far during my 6minute walk but still walked further than most with severe lung disease.
During our clinic visits, we met with a pharmacist who reviewed all the many post-transplant meds I would be on and the enormous side effects that come along with the meds.  Its mind boggling.  The transplant coordinator came in and reviewed the protocol on being on the list and the need to get there in a timely fashion.  The transplant doctor came in and after seeing my numbers suggested I go back on the active portion of the list.  He stated that overall currently there is a shorter waiting list and a short A+ (my blood type) list, meaning that I may get a call sooner than the average 9-12mos.
He also suggested that I may need to stop working, I see sick patients and being on the list its important to stay as healthy as possible and as strong as possible. That is a hard pill to swallow, but something I will contemplate. I'm not looking forward to having the phone on me 24/7 or the tremendous battle before me.
Another glitch is my husband just started a new job last wk and our insurance will be changing to Blue Cross Blue Shield. I need this to be a seamless switch, pls pray that it is.  Benefits started on Day 1 which is great but not sure how BCBS is to deal with. I've had Priority Health for the past 16yrs and I know what to expect-I'm sure they are breathing a huge sigh of relief seeing me go.

Pray for perfectly matched lungs, seamless insurance switch, and the wait to be short.

So for now I must:


  1. Lord have mercy. Praying. Sending (((hugs))) also!

  2. Love you Joyce! I'm agreeing with all this in prayer! God is always with you. You are truly inspiring

  3. Praying in all ways for you...everything will work out. Gods timing is always perfect.
    This week i go for my pre tx testing. Hopefully a listing will follow shortly thereafter.

  4. Praying God answers all prayers for you and the family, soon. God Bless

  5. Joyce, I just took some time to go back and read your older blog posts. Wow, what a crazy journey you've been on the last few years. Interesting that we both got married the same year and I also have a son who started Kindergarten this year. I've been living in Hungary for the last 13 years and I just wanted you to know that I'm praying for you!
    Tamara (Hoffmann) Szogedi

    1. Thank you so much for reaching out! And I need all the prayers!