Sunday, February 22, 2015


When you find out you need an organ transplant, for me a lung transplant, I don't know about you, but I start to do some research. Transplantation isn't easy in so many ways. Just because you are told you NEED a transplant to survive does not mean a transplant center will accept you into their program and get you listed for the organ you need. Even if a center says they'll consider you, the testing a potential transplant candidate must go through is unlike anything you will likely ever experience. It took me a full week in the hospital of testing every single day for the hospital that finally accepted me to do all the testing they needed in order to make a decision about accepting me. Even after that, I still had out-patient tests and procedures I was instructed to get done and provide documentation that I had completed these tests (PAP Test, Mammogram, Dental Cleaning to name a few). 

The first hospital I consulted with where I live turned me down; refused to accept me into their program and get me listed with UNOS saying I was "too complicated". This was a very rude awakening for me. I couldn't imagine a transplant hospital denying a patient the OPPORTUNITY for the life saving procedure they need. Just because you get accepted into a center's program and listed with UNOS is no guarantee you will ever receive your transplant.

As it turns out, I believe I am lucky to have been turned down by the first hospital. I have learned from doctors and research that many transplant hospitals will not take on "complicated" cases because they have the potential to negatively impact their success rates. I have also learned that hospitals that do more transplants, more often - those doing the most every year - have more skilled, knowledgeable doctors and transplant teams, as well as excellent and top notch success rates.

I ended up being accepted by one of those hospitals, Loyola University Medical Center. It turns out that Loyola set the state record for the most lung transplants in Illinois in 2014.

If you read the above link to the press release, you will see that Loyola University Medical Center performed 51 lung transplants in 2014, the most ever by a single center in Illinois! I was lucky to be one of those patients to receive the gift of life last year! That's who I WANT doing my transplant and that's who I got. As far as I am concerned, they are the "A" TEAM! They saved my life and are working tirelessly to manage my post transplant needs, issues, complications and challenges. 

Transplant surgeons at Johns Hopkins have evidence that hospitals performing at least 20 lung transplant procedures a year, on average, have the best overall patient survival rates and lowest number of deaths from the complex surgery. Loyola did more than double that in 2014!

Having a lung transplant, while it can be a life saving procedure is not easy. As my doctor explained it to me, "you are trading one disease state for another." This is very true. The transplant seems a miracle to me every single day. Yet, the complex follow-up care and medications create a whole new set of medical issues the transplant patient must deal with and manage. 

The side effects from all the medication can cause serious damage to other organs. For example, I am struggling with kidney function issues because of medications. My team is on top of it and it seems we are getting things under control. Last kidney function test was trending downward, which is good. We want to see it go down further and the next blood test should tell the tale. In addition, as all transplant recipients are, I am immunosuppressed and therefore, very susceptible to catching all sorts of infections: bacterial, viral, fungal - you name it. I have had a lung infection and I am currently experiencing my first episode of rejection. 

Rejection: the scary word no transplant recipient wants to hear. However, my team assures me my case is very mild (the lowest score you can get as they score rejection) but it required an increase in my Prednisone dose for 30 days and then we will repeat the bronchoscopy to see if we halted the rejection. SO I anxiously wait for that to happen and hope it's good news. 

But the point is I KNOW I have the best team possible taking care of me and they are on top of everything. I talk to my Post Transplant Coordinator often. She is so kind, caring, knowledgeable, helpful - no question from me is too stupid. She doesn't mess around and is always contacting me with my test results, instructions on tests or medication changes.

Loyola Hospital is certainly doing the most transplants in Illinois and I believe it's why I even made it through the surgery. I am a complicated case and I couldn't see how I could even get through such a major surgery. But they listened to me, my concerns; worked with me and got me through it and discharged in near record time: only 7 days post transplant.

And regardless of the complications I am having, they feel confident about how I am doing. I am back at Rehab working on regaining my strength. I've been told by the doctor to start getting out and about (except it's freezing *** cold outside). I've gone to the store with my Mom, gone to the hair dresser for the first time in over a year and got my hair done. Something I wasn't sure I'd ever do again.

My original Pulmonologist fought for me. He wouldn't give up until the Transplant Team at Loyola at least met with me. I owe him my life too. 

I feel lucky that I was accepted and every single day is a gift. I'm working on taking this one day at a time and not looking down the road long term. But I am blessed and grateful for every single one of those days.

Loyola's 1-month, 1-year and 3-year patient survival rates are 96 percent, 86 percent and 68 percent, respectively; well above the national and local statistics that show that 55 percent of lung transplantation patients survive after five years. There are no guarantees; but I want the hospital with the better outcomes that wasn't intimidated by me being "complicated". 
So, what I've learned along this journey with transplantation is: 
The More the Better! 

Please consider being an organ donor!

"Roar" - Katy Perry

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