Monday, September 15, 2014

Special Edition: My Lung Transplant Jouney, September 16, 2014 - Oh, the Places I'll Go!

"You're off to great places, 
Today is your day!
Your mountain is waiting,
So... get on your way!” 
- Dr. Seuss, Oh, The Places You'll Go!

When I get to the other side of this mountain, and hopefully fully recover from a successful lung transplant, I plan to do and see things I haven't done in a long time like climb up stairs with ease, jump in the shower, run to the store, ride a bicycle, and complete daily activities around the house without dragging an oxygen hose behind me or stopping to rest every few minutes.

But that's not all. I also have bigger plans and dreams for post-transplant - a bucket list if you will.  Many items on my list include travel, something I haven't done in quite some time especially by plane. The list also includes new things I would like to see, learn, or do in the future. In upcoming LeMOMade posts, I will share my dreams with you starting today with places I'd love to visit with my new lungs.

So in random order, here's some top places on my travel wish list:

* New York to tour the city, see a Broadway show, and watch the Macy's Thanksging Day Parade
* Alaska to see the aurora borealis, polar bears, icebergs, and other beautiful sites
* Road Trip across the United States in a cool convertible to see quirky tourist attractions and eat at diners and other local joints
* Return to Maui, Hawaii where Tim and I honeymooned, one of our best trips ever
* Slovenia and Slovakia to see where my ancestors lived, worked, and played
* London and Paris - to visit my sis, and to see all sorts of touristy sites like Big Ben, The Tower of London, The Louvre, and the Eiffel Tower

What's on your travel wish list?

Tuesday, September 9, 2014

Special Edition: My Lung Transplant Journey, September 9, 2014 - Impatient Inpatient

15 months, 16 days and counting . . .
That's how long we've been waiting for my new set of lungs!

The wait now continues with an unexpected twist. I'm waiting at the Cleveland Clinic on the lung transplant floor because my condition has seriously declined and my supplemental oxygen needs are too great to be managed at home. The wait may be a few days, several weeks, or even months, but the ultimate goal for the transplant team is to keep my condition stable, build my strength, and boost my weight during the wait for the perfect match.

And that there's the rub, finding the perfect match. Although my lung allocation score is quite high, in other words I'm high on the list, it really doesn't matter if they cannot find the best match for me. The single most difficult problem with finding me the best match involves a complicated problem known as high antibodies. It's difficult to explain because although I'm a very educated patient, I'm not a doctor or scientist. The transplant team attempted to address this problem by giving me monthly IVIG infusions for the past six months in an effort to desensitize my body to the antibodies leading to the goal of finding a perfect match. However, as of today, they do not know if this protocol is working, nor if they plan to continue it until they obtain more information from recent test results. Without the best match possible, chronic rejection of the new lungs is likely, and with limited lungs available for donation across the country, lungs that are not not suitable for me could give new life to another person on the waiting list.

Yes, that's heavy stuff. That's what we're up against. It's been a very difficult journey for me (and the family). There's been lots of tears, frustration, anxiety and more along this road, especially during the last three months or so as my health declined, making it harder and harder to breathe even while doing the simplest of daily activities. I certainly will not be described as one of those people who "never complained about their illness" or questioned the fairness of it all, because I have many, many times over. I'm human.

My hope that with this huge bump in the road, I can be brave and patient, and have faith that God will bless me with new lungs very, very soon.

I will not go down without a fight!