As a lung transplant patient, I have found myself drawn even more to reflecting on my life and how I ended up where I am. There are no answers.
Especially as I post Throwback Thursday photos of me from a young child throughout my life but all before I got sick. I realize it was a different life; that was then, this is now. There's before I got sick and after I got sick.
Life IS short; often we don't realize it as we go through our lives, work to build a career we like, love if we're lucky. But one day I post a Throwback Thursday photo of me at 28, healthy and enjoying life, when it really hits me I'm turning 60 in a month and I've been sick with one disease or another for 13 years! How on earth did I end up here, like this? Suffering from multiple diseases (Interstitial Cystitis and associated co-morbid conditions; cardiac issues and Epilepsy) has been challenging enough. And then, just to make my life even more challenging, in November 2013 I wake up one day with a bad cough and think I have a cold. Three months, multiple hospitalizations and a trip to the Mayo Clinic later, I am told I have an incurable, rare lung disease called Idiopathic Bronchiolitis Obliterans. WHAT? Now I really want to know how I got here, but the doctors can't tell me. It seems to have happened literally overnight; one day I am fine, then slowly I develop multiple medical conditions requiring I stop working and go on permanent Disability. And as if that wasn't enough, then I get this mysterious lung disease and within 3 months I am told I need a Lung Transplant or I will be out of options.
Luckily for me, I was accepted into Loyola's Transplant Program and finally got my transplant on November 3, 2014. It's now 7+ months post transplant. I am doing well, although there are issues that I must deal with, as do most transplant patients. My anti-rejections meds are causing kidney function problems requiring medication adjustments and weekly blood tests. Also, my body is building antibodies that want to attack my transplanted lung and cause rejection, so that has to be monitored with monthly blood tests. It's a juggling act. They must get the medication levels right so that they prevent rejection but don't damage my kidneys to the point I end up in kidney failure, on dialysis and waiting for a kidney transplant.
I look at the pictures of myself as a young woman and I just stare at them and can't believe that girl has ended up with all these major health problems. It seems like we are two different people.
I've said it before; Transplant isn't for sissies. Seven months post transplant and I still suffer from post surgical pain, need wound care and I will be working on my physical rehabilitation for a very long time. Being in a wheelchair on oxygen for a year caused such extreme de-conditioning, it takes a lot of hard work to get back in shape. I am making progress, but it seems so slow. Once, I was the girl who ran so many 10k's I can't count them, 5 Half Marathons and the 1989 Chicago Marathon. I was an avid skier. Loved anything involving the outdoors. Now, climbing a flight of stairs feels as hard as the Marathon did.
Who is this woman I have become? I don't recognize her. But here I am. I've gotten through things I never thought I could handle and I'm proud of that. I never thought I could handle a surgery like a Lung Transplant, but I did.
I think all that training I did, helped develop my determination; if I want something bad enough I'll work hard to get it. I have had to work harder than I've ever had to in my entire life over the past two years.
I am stronger than I ever believed I could be when I was that 28 year old. I think about that too these days. While I never expected to end up being on Disability and a Lung Transplant patient, I have discovered that I am strong enough to handle all those things. When things get tough and I have a moment, I am able to pull it together by reminding myself how hard I have fought to get to where I am today and with the love and support of my family and friends.
As I find myself reflecting on my life, I acknowledge it's been a long and very winding and strange road that has brought me to where I am today.
Getting so many diseases and needing a Lung Transplant were not on the list of things I wanted to do in my life. But as I reflect on where I am, it's better than the alternative. So, while I've had my share of challenges, I am glad I am here and will keep fighting and doing whatever my doctors tell me to do.
Here's to life and the long and winding road that has brought me here. I am looking forward to celebrating my 60th birthday, the one year anniversary of my transplant in November and lots more family birthdays, anniversaries and special events! Sometimes reflecting on your life is a good thing. While my life hasn't turned out as I would have expected or even wanted, I am here and for that I am blessed and grateful!