THE GRATITUDE COLUMN VS. THE CHALLENGES COLUMN!

I haven't written a blog post in a very, very long time. When I got sick and discovered I would need a life saving Lung Transplant, all I could focus on was staying alive and waiting and hoping I would get the lung I needed. I couldn't focus on blogging, let alone much else other than the oxygen tank I was attached to for 24 hours a day; the Bi-Pap I needed to be able to stay alive while sleeping, that is if I was able to sleep at all. I was unable to sleep lying down as it made breathing impossible, so I had to sleep sitting up.

I was focused on getting my affairs in order, at my doctor's suggestion, as he wasn't sure I would make it long enough to get my transplant. Even now, as I write this, I fear it sounds like I'm whining, which I never wanted to do. So that's a big reason I stopped blogging while I was sick.

Thankfully, I received the Gift of Life on Nov. 3, 2014 and am approaching my 4 year anniversary in two months. A goal that at one time, seemed impossible to reach.

But even after I was blessed to receive my transplant, I struggled with writing. I never wanted my Blog to be negative, poor me and sound self-serving. I wanted to share my journey through my illnesses, the challenges and the successes, but without it sounding like "poor me". As I've recovered from my transplant I have had many struggles and I didn't want to just write about what I was struggling with.

I don't know if I'll get it right or not, but I felt it was time to try a new post. I look at my post transplant life in two ways: I have my Gratitude Column and I have my Challenges Column. The Gratitude column is filled with so much for which I am grateful. I am grateful to be alive! That alone practically fills the entire Gratitude column, but it can be broken down further. I am grateful for the support my family and friends provided during the most difficult time of my life. I am grateful the amazing team of doctors and nurses that literally saved my life. I am grateful to my organ donor and family for giving me the Gift of Life. I am grateful my lung is doing excellent so far after transplant and that I've had no episodes of rejection, don't need insulin or blood thinners as many transplant patients do. So the Gratitude column is overflowing.

But then there is the Challenges Column that make being a Lung Transplant patient - at least this one - extremely challenging. The incision from my transplant still causes a great deal of pain and has made recovery very difficult. It's taken nearly 4 years to finally find a specialized pain doctor who is helping me with Scar Infiltration injections and I am hopeful I'll be able to take this one out of the challenges column at some point. This treatment is showing promise, but we are not where we hope to get yet. But living with this pain all this time, has been no fun. Then there are the medications I must take in order to prevent rejection, and then the many meds to counteract all the negative side effects of the anti-rejection meds. We get significant and serious osteoporosis from the anti-rejection meds; we get sky-high cholesterol from the anti-rejection meds.; short term memory loss, confusion, cramps, bruising and in my case (as far as anyone can tell at this point), drug induced myopathy in my legs making walking a real challenge. I have balance issues from the pain/weakness in my legs and use a cane to insure I don't fall down and break a bone from the nasty osteoporosis. Being immunocompromised is no picnic either. I must be ever vigilant about being exposed to sick people, food borne illness and various air borne pollutants. As vigilant as I am, I still got food poisoning recently because I'm immunocompromised. It was clearly something that I was only affected by because I was the only person who got sick. Right now, however, trying to figure out what is causing this pain and weakness in my legs is my biggest challenge. I can't get up from a seated position without something to hold on to and push myself up. It's very frustrating because I worked so hard at my post transplant rehab and was doing great. I could walk 3 miles in about an hour less than one year after my transplant. Since then, as time goes on, things have gotten worse and worse. I am not giving up and will be seeking a consultation with a specialist to see if he can help figure out what has happened.

So both my columns are filled to capacity. My Gratitude column is what I try so very hard to focus on when I'm having a bad day. I try to remind myself of all those things for which I am so grateful. But living with chronic pain, not being able to walk more than a few feet without having to stop, makes me crazy. I worked so hard to regain my fitness and it's disappearing before my eyes and no matter how much I try to exercise to try to make it better, I simply make it worse.

It's not like we weren't told being a transplant patient would not be easy. We were certainly told A LOT of the "bad stuff" to expect after transplant. Most of what I deal with was basically expected; some wasn't.

So I battle with the Gratitude Column vs the Challenges Column. It's difficult to just be positive every day when struggling to walk, deal with pain and all the side effects of all the meds. But I work with my Psychologist and try to focus on the things for which I am so Grateful. I don't win this battle every day, but every day is a chance to try again.