Sunday, August 31, 2014


So this is how I spent my Saturday.  Most of the day was spent relaxing, watching tennis and visiting with a friend. Then my cell phone rang. I was talking with this dear friend who came to visit me so I wasn’t going to answer it, but I took a quick look to see who it might be.

It took my brain all of about 1 second to look at the number and figure it out. You see, I know a Loyola Hospital number when I see one and this was them. It took another second for me to realize it’s 2PM on a Saturday afternoon, Loyola wouldn’t be calling unless it was for one thing. This must be THE call.

So I answer the phone and it is one of the Loyola Procurement Nurses. Now, don’t get too excited. They want to bring me in. They are not saying they have MY lung, but they want me to come in as a Back Up. I am told to sit tight, stop eating and drinking and wait for another call telling me when to leave. In the meantime, my family goes into overdrive preparing for the trip to the hospital (getting my portable oxygen in the car, getting things they’ll need etc.) About 2 hours later and they finally called back and said - leave now. We arrive at Loyola at about 6PM and I am admitted to the hospital and sent to a hospital room on one of the floors and treated like any patient is when they are admitted. Get the gown on, the socks, take my vitals. They even took it so far as to put in an I.V. and draw blood for labs, get sent for a chest X-Ray. 

Finally, at around 8PM, a Resident comes to meet with me to explain the situation. So, here’s the scenario on how this whole “Back Up” thing worked in my situation at least.  The person in front of me needed BOTH lungs and I only need one. Once the donor lungs would arrive and were examined if BOTH are deemed worthy of transplant then the other person gets them because they need both. If on the other hand only one of the donor lungs looks good enough to transplant I get it. I am told we won't know until midnight-ish so we sit here and cool our heels until I get the word.

My Mom and Brother go get something to eat. I wait. My Brother goes to a visitor waiting room where there is a couch and takes a nap. We wait. And we wait. And we wait.

Finally at 1:30AM, the floor nurse comes in and tells me what I was expecting all along. There would be no surgery for me last night. I can be discharged and go home.

By the time I got discharged, down to the car, drove home and got into bed it was 4AM. I’m exhausted.

The good news is, during all my Evaluation for Transplant meetings, they tell you about these types of situations. They tell us to expect it; it happens to many, many transplant patients at least once. I said all along I was going to expect the first call to be a “dry run” and it was. That way I wouldn’t fall to pieces when I didn’t get my transplant.

It’s a disappointment of course. But it actually gives me some hope. If I got matched for this person yesterday and the other A- patient got the lungs this time, it would seem to me that the next time the right size A- lungs become available, it would be my turn. I choose to look at it that way. It’s just how long will it take for that to happen.

Talk about your highs and lows. I didn’t get my lung yesterday. It wasn’t my turn. Next time. Next time will be my turn. So this is how I spent my Saturday. Now wasn’t that fun! 

Last Night Waiting


  1. I'm so sorry!!!!!!!!!!! My heart just aches for you. IV's are not fun. Sitting all day is -no fun. All the driving, everything.. Damn!!
    And though I know it is their choice to decide who gets lungs, and though I understand WHY they gave them to the other person, I get to decide that I don't have to like it. This sucks!!!!!! (((Hugs)))

    1. Thanks Sariah. Yeah, it's tough to take but I have to say they explain it all very clearly before we are accepted and agree to become a transplant candidate. The system is as fair as it can be, with the Lung Allocation Score being based on all your tests and ranking you; beyond that the only other determinates are blood type and lung size; i.e. a woman my size cannot receive the lungs from a man or woman 6' tall - they won't fit.