356 DAYS - MY JOURNEY TO TRANSPLANT!

Where to start.  Well, marking days on a calendar to track important events is something many of us do. To remind ourselves to do something, to remember important events. Well, I have been marking days on the calendar for the last year hoping that the most important date of all would show up in time. Unfortunately, the single most important date of all was impossible to put on the calendar. It was completely out of my control. 

I like control; those of you who know me well, know this. I dislike not knowing or not having control over most situations and have a difficult time dealing with it when that is the case. I’m getting better at this and if it’s one thing this journey has taught me, is well:

Sometimes we just have to suck it up and deal with it!

This has been a journey of the type I honestly find difficult to explain. I think, if you were to ask my family, watching me deteriorate at a very rapid & scary pace, unable to breathe, needing oxygen 24/7, barely able to speak let alone get out of a chair, I think they would tell you watching me has been hell on earth for them. Suffering through it has been no walk in the park for me either. Anyone with chronic illness and disease knows this, I am not special in this regard, but this Blog has always been about my journey, how I got through it, my successes, feelings of hopelessness, yet never giving up. A real mixed bag of emotions.

Dates I will never forget:

November 12, 2013: The day before I was fine (well as fine as anyone with IC on Disability can be). Then I wake up on this fateful morning coughing and wheezing. I figure I have a cold and will just have to ride it out. Great, a cold on top of my IC; just what I wanted. Weeks go by with repeated visits to my Primary Care doctor, moving up the scale from 1. it’s a cold; 2. well, maybe bronchitis - negative; 3. Probably pneumonia - negative. Next move, go to the hospital.

December 2-9, 2013: I was admitted to my hospital for testing and ended up there a week. I was assigned one of the most wonderful Pulmonologists (let alone doctor of any specialty). Throughout the course of that week, they threw the book at me test-wise. Yet my Pulmonologist said all the results were inconclusive, but felt it was likely Adult Onset Asthma. Discharged with many meds to treat that. Wrong. 

February 11-13, 2014: Between December and February I saw my Pulmonologists many times and each time, my symptoms were worse than before. He no longer believed I had Asthma and he referred me to multiple specialists who all thought they had their finger on it. Wrong again.  So my Pulmonologist calls me to say that he has a colleague up at Mayo in Rochester, MN who is willing, as a favor to my doctor, to see me and evaluate me! No problem; family goes into overdrive getting tickets and hotel reservations and I’m up there in1 day. What an amazing place! No wonder it has the reputation it has; my experience was amazing and everything ran like clockwork, having all the testing in the morning and then after lunch meeting the doctor to review the tests. I’m thinking he will have figured it out and prescribe treatment and I will go home and get better.

WHOA there! 

February 12, 2014 - Diagnosis is Idiopathic Bronchiolitis Obliterans. WHAT? It’s incurable and I will need a lung transplant if I am to survive! I just stared at him. How is it possible in a mere 3 months, I go from being fine to needing a lung transplant?!?!? They don’t know or understand it themselves. It’s rare, though they’ve seen it. A date I will never forget!

March 17-22, 2014 - Admitted to the hospital due to severe respiratory distress. My Pulmonologist comes to visit me, sits by my bedside with my Mom and delivers the news no doctor likes to deliver. I need that lung transplant or I am out of options. Well, at this point, one of only two hospitals specializing in lung transplants where I live in Chicago has turned me down and won’t consider me for one; says I’m too complicated. There is only one option left. My doctor promises to keep calling them until he gets through to them. Boy, did he fight for me!

April 1, 2014: I finally get an appointment with the Transplant Doctor at Loyola University Medical Center. It was a sobering appointment. They don’t sugar-coat what having a transplant entails: the good, the bad, the ugly. And it includes ALL of those and more. But at least he would take my case to the entire Transplant Team and they would decide whether to accept me. There would be further testing to do and once that was completed, they would make their decision. None of this moves fast. In fact, when your life depends on it, it could not seem to move more slowly. Another date I will never forget.

June 10, 2014: The call finally comes. I have been accepted and am now listed on the UNOS Transplant List! I cried tears of joy! At least now I had a fighting chance. Without this, there would be no chance. But as happy as one is to be listed, now it gets hard again as the waiting for “MY” lung to become available starts. There is no “date” that I can put on my calendar that says “Lung Transplant Day”. I must simply wait and hope that the call comes in time. Again, not easy for a control freak like me. But wait I do while watching the days on the calendar tick off.

In the meantime, I am required to go to pre-transplant Pulmonary Rehab, which was brutal and required much oxygen to get through it. But I did it! I told Loyola I would do everything they threw at me if it meant I could get my transplant. 

Tick, tock. The days on the calendar move slowly yet rapidly all at once. I get a call to come to Loyola as a “Back-Up” for a potential transplant. So off we go, only to discover, as I was the back-up in this case, the person in front of me got the lung and I could go home. This time my expectations were low so I was not too disappointed. Then in September I get called to come again and off we go to repeat the routine we went through before. We’re hopeful. Unfortunately, upon receiving the organ at Loyola and further examination, it was deemed “not worthy” of transplant, so I get sent home again. This one was tough to take.

So, the wait starts all over again. Every phone call that rings makes us jump. Is this the call? No, not today. Day after day, no phone call and each day that goes by with no phone call, gets harder and harder. You begin to doubt it will ever come. Staying strong through this is proving more and more challenging. But I want my transplant. So I continue my rehab and try to believe my turn will come in time. 

September turns into October and no call. Doubts and fears creep into your thoughts. Time is running out. Try to keep the faith.

NOVEMBER 2, 2014 - 11:30PM: I am getting ready for bed. Turning off the TV and my laptop when suddenly my cell phone rings. By now I know a Loyola phone number when I see one and this is Loyola! 

Mom hears the phone ring and comes running down the hall. Who would be calling at this hour on a Sunday, right?

Yes, it’s Loyola and my Transplant Coordinator telling me they have a lung for “ME”. We are to get to Loyola as SAFELY but quickly as possible. I am told that this looks good; my hopes are high and with good reason.

This time when we arrive at Loyola, the process is moving much faster. They are putting me through the process very rapidly. 

It’s what I’ve been waiting for but it’s scary, exciting and nerve wracking. But I want it. I am with my family and we decide to to send me into the O.R. with our favorite positive family saying ‘It’s All Good!”. 

And off I go to the O.R. Much of the first few days are a blur and my family has had to fill me in. But I woke up happy, smiling (well, once the intubation tube was pulled) and breathing! 

YES, 356 DAYS AFTER WAKING UP COUGHING,  I GOT MY TRANSPLANT!

My family tells me that the actual implant date is MONDAY, NOVEMBER 3, 2014! Put THAT on my calendar!  My family tells me it’s my “Re-Birthday” and we will celebrate this date too!

356 Days. 9 days short of one year to the day, I received the Gift of Life and I am so blessed, happy and grateful. Now, as I work at staying healthy and doing all I am supposed to do to keep my new gift healthy and strong, the next journey begins.