Thursday, August 21, 2014


Ever since I was diagnosed with terminal lung disease and told I needed a Lung Transplant, my life has revolved around my health, medications, hospital stays, doctor visits, tests, tests and more tests. As I was already on Disability for another medical condition already, I didn’t think it was possible to spend more time at doctor appointments etc. Boy was I wrong!

I don’t know how anyone else would react when told they need a Lung Transplant, but for me it was a very scary prospect. Very scary. Yet at the heart of it, it’s the only answer to staying alive and so for me, the answer became clear. YES, I want a transplant. Then you go home and begin to question your decision. Well, at least I did. But I want to live; I want more time. For me, there is only one way to get that - a Lung Transplant. It wasn’t on my “bucket list” - it is now!

It’s been a process. A process of going through all the testing and finding yourself fighting and fighting hard, to get the hospital to even accept you as a Transplant Candidate. As I went through all the steps of this very lengthy process, more and more I began to really want it.

I need a Spirometry test. No problem. I need another Chest CT. Let’s go. I need a MUGA Scan. Well, whatever the heck that is, I’m ready. I need a Coronary Angiogram AND a Pulmonary Angiogram. Bring it on and - no I will not do it with any sedation; just a local anesthetic for me please as I don’t want to spend the rest of the day throwing up! So suck it up, and just deal with it! I need an Arterial Blood Draw  - 3 times (NOT fun!!). Let’s do it! I need a surgery to have a Feeding Tube placed before my transplant because of my swallow dysfunction. Oh for crying out loud - fine, let’s go. How soon can we get it done!! Six weeks later I naively go to get the feeding tube shortened only to find out the way that gets done if I want the little button type is to YANK the original one out of my stomach and I’m told it will hurt. The doctor says it will be fast, but it will hurt. Seriously? Really? Close my eyes, hold my breath and on the count of three, go for it! The man did not lie - HOLY MOLY - that hurt!

They don’t make getting a transplant easy. It shouldn’t be. But man, if someone had followed me around with a camera I am confident you’d be surprised by the process. And this doesn’t even count the mandatory Lung Transplant Education Classes and mandatory Lung Transplant Support Group meetings, meeting with the Transplant Psychologist, Dietitian and Social Worker; get an updated PAP Test, Mammogram and Dental Cleaning. Get family members to commit to being my Primary & Secondary Care Givers and sign a document from Loyola that says they are committed to this. I must do Pulmonary Rehab to regain as much conditioning as possible before my transplant so I can do the post transplant Rehab. It isn’t easy. I have to crank the oxygen up but I’m doing it and I’m getting some strength back. 

I need a Bipap to sleep at night and I am hooked to Oxygen 24 hours a day. And as time ticks by, I am finding my baseline “at rest” oxygen needs keep going up. When I first got Oxygen, I was on 2 liters. Slowly, over time I had to increase it to 3 liters, then 4 liters. Now it’s 5 liters. Dragging portable oxygen tanks everywhere I go is no small feat. It takes a team to get me anywhere these days. 

Time takes on a whole new meaning. Waiting is hard. Will I get my transplant in time? These are the things a Transplant Candidate thinks about. The very things the Transplant Team said would be hard. Waiting. 

Nothing has ever been as hard as waiting for the phone to ring telling you your organ is here and come to the hospital for your transplant. 

Stay positive is what everyone says. I’m trying; it’s hard. I speak in the affirmative to reinforce that positive attitude. “When” I get my transplant. “When” I am recovered. I took the word “if” out of my vocabulary months ago. We all talk about “when”. 

I have been told the call could come at any time. So every night I go to bed wondering if tonight will be the night. I take my cell phone with me everywhere I go. I’ve taken everything they’ve thrown at me; more than I ever thought I could handle and come through it feeling pretty proud of myself. 

I want that Transplant! Bring it On!


  1. I lived through every word you have written I had the oxygen the non stop tests and so on... I actually missed THE CALL because I was in so much pain I couldn't walk very well. I needed a liver transplant...I got my miracle after my doc called back 5 minutes later:) you'll get yours . I waited four years...THE GREATEST HERO I NEVER MET SAVED MY LIFE. He is my angel. I'll pray for you .

    1. So glad you got your liver and hope you are well. Thank you for your words of encouragement and prayers. I'll take all I can get!