Tuesday, June 11, 2013

Special Edition: My Lung Transplant Journey June 11, 2013

Insert dramatic world news music here . . .  Ya know, because it's a "Special Edition!"

Once again it's been quite some time since I posted on leMOMade - busy, busy, busy and sick, sick, sick!
After battling the worst pain ever aka the Shingles for more than 2 months, then completing some required testing for the lung transplant evaluation, I am finally listed for a double lung transplant at the Cleveland Clinic! My apologies to those in the know about this already - it's a re-run. But no matter, because life as we know it around here is never dull!


I just returned home from a lovely 6-day visit to Northwestern Memorial Hospital in Chicago for the treatment of pneumonia. For a person with underlying lung disease, pneumonia can be very dangerous, or even fatal!  Luckily, my quick-acting pulmonologist, Dr. C, was on top of everything after I was rushed to the ER of Rush Copley in Aurora in the wee hours of June 5 due to difficulty breathing and very low oxygen levels. Hats off to the Bristol-Kendall emergency responders who arrived in my bedroom within minutes of calling 911! Seriously, these guys and one gal were speedy-quick!
After an evaluation at the ER and a consultation between Dr. C and Rush docs, I was transferred within a few hours to the ICU at Northwestern. Two ambulance rides, cool, huh? But let's not remind my mom about this as she rode in the front of the ambulance on the way to the city! Just a little bit scary, but what a way to clear rush hour traffic, especially at the infamous Hillside strangler of Chicago-area expressways.

After arrival at the hospital, next came poking, prodding, monitoring and all that to determine that yes indeed I had pneumonia! Cue the antibiotics, more monitoring, and rest (Ha, that there is a misnomer while staying in the hospital!). Again, hats off to all medical professionals - it takes special people to take care of others!

So, now I'm home for rest and recuperation while I wait for a double lung transplant. How does that work you ask? Well, in a nutshell, more waiting. As a candidate on the nationwide lung transplant list,  we wait for a match from a generous donor (who has died). Of course, it's a bit more complicated than that, there is a lung allocation score which determines your place on the list, etc. and there is ongoing evaluation by the transplant clinic to determine if your condition is worsening, or perhaps getting better. In fact, we have a return visit at the Cleveland Clinic next week as a required part of the whole process.

When a match is found, I will be rushed to Cleveland via the clinic's own medical jet! Now that's really cool! However, the first call might be a what they call a "dry run" where after careful determination, docs decide that the lungs might not be viable for a successful transplant. In that case, I would return home (not by jet, but by car), then wait some more.

Phew, that's a lot of info! I hope y'all stuck with me so far!

With all of this going on, my family and friends are rallying around to help out me and the family. My sis J has set up a support planner site so volunteers can sign up for household tasks like making a meal, lawn mowing, things like that. My parents and my other sis D are going to assist with the kids and me around the house during my current recuperation period. If you are interested in helping out, you can email J at swfslovenian at yahoo dot com for more info, or you can locate the planner at http://supportplanner.caringbridge.org/  and search for U4Sue New Lungs New Life. You will need to complete a short registration process to access the planner.

Also, be on the lookout on this blog for updates about me, and for info about fundraising activities and events that are in the works. Thank you!



  1. Oh Sweetie I wish you the best with this process. Sending prayers, love and hugs.
    We need a cure for Scleroderma!!!

  2. I love the feel of the Blog, full of optimism, hope and fight! I send up prayers for you as you wait for your new lungs to arrive. Much love!

  3. A Special Edition of leMOMade by a very special person and friend!! Love ya!!

  4. Hoping your wait on the list is short...very short. xo