Special Edition: My Lung Transplant Journey, February 27, 2014 - The Waiting List Post 4-6

Hello all, I'm a bit behind in updating my posts for The Waiting List storytelling project. My apologies. My mind works much faster than my body. So here are a few posts from the last couple of days. Enjoy!

Post 4, Weary

The Waiting List, 2/25/2014, evening, Instagram

FROM GUEST EDITOR SUE BOROWIAK, YORKVILLE, IL. WAITING FOR A DOUBLE LUNG TRANSPLANT SINCE MAY 24, 2013. Photo by @suzib66. Weary. During the past few months, it's been getting harder for me to do things around the house. I get tired easily, and I always need to stop for a little break by resting my head. It's frustrating!

Post 5, Hopefully Devoted

The Waiting List, 2/26/2014

FROM GUEST EDITOR SUE BOROWIAK, YORKVILLE, IL. WAITING FOR A DOUBLE LUNG TRANSPLANT SINCE MAY 24, 2013. @suzib66 Photo by my daughter. Hopefully Devoted. Nearly every night before bed, my husband will rub my back because it's sore or itchy. I often sleep downstairs in a twin bed because it's much easier than climbing the stairs up to our bedroom, and sometimes my coughing keeps both of us awake. For now, It's better for us to sleep well than to be together, but I miss him. I think he misses me too.

Post 6, Tough Cookies

The Waiting List, 2/27/2014

FROM GUEST EDITOR SUE BOROWIAK, YORKVILLE, IL. WAITING FOR A DOUBLE LUNG TRANSPLANT SINCE MAY 24, 2013. @suzib66 Photo by my husband. Tough Cookies. I'm so proud of my children. Despite living day to day with a mom who is seriously ill, they are smart, athletic, funny, creative, musical, and all-around good kids. Recently, we prepared a special homemade pizza together for their dad's birthday. They help me with many things around the house, and for that I am grateful. They are resilient.

Special Edition: My Lung Transplant Journey - The Waiting List Posts 2 and 3

Dear Readers, I just want to express my gratitude to those of you who have been following my story. I've been getting lots of positive feedback about this project, and I appreciate all the kind thoughts and prayers. Perhaps you might be wondering why I would share so many details about our lives with the world. My main goals are to be an advocate for organ donation, to educate others about this journey, and to find my purpose in this life challenge. I hope to inspire others who are facing similar challenges, and to give people an honest look into what it's like to be waiting.

Post 2, The Bag

The Waiting List, 2/24/2014, evening, Instagram

FROM GUEST EDITOR SUE BOROWIAK, YORKVILLE, IL. WAITING FOR A DOUBLE LUNG TRANSPLANT SINCE MAY 24, 2014. Photo by @suzib66 The Bag. When they called to tell me I had been listed for a transplant, they said, "Pack your bag." So I did. This bag has been sitting in my bedroom for 9 months now. A friend of our family made this angel pillow for me to take along. I'm also bringing photos and artwork from my kids when the call comes. I didn't really know what to pack.

Post 3, Oxygen

The Waiting List, 2/25/2014

FROM GUEST EDITOR SUE BOROWIAK, YORKVILLE, IL. WAITING FOR A DOUBLE LUNG TRANSPLANT SINCE MAY 24, 2013. Photo by @suzib66. Oxygen! We all need O2 to breathe, but I need more than a healthy person. I cried 5 years ago when my doctor told me I needed it. Although it helps me breathe, it's also like a ball and chain. My tubing gets tangled up around the house, and it's hard to carry out and about. We always worry I will run out of oxygen, and it's very scary when I can't breathe or have a coughing fit.

Special Edition: My Lung Transplant Journey, February 24, 2014 - The Waiting List Project Post 1

Today marks exactly 9 months on the waiting list for new lungs, and it is my first "official" post of The Waiting List project. (I did a few test posts over the weekend).  Please keep in mind that addition to Facebook, this project can be found on Instagram, but you don't need to be an Instagram user to follow along. I will try my best to post my photos and writing here on the blog so you can keep up to date. Instagram is a little tricky, and I'm still learning to use it so bear with me. Please share my post with others as the purpose of the project is to promote organ donation for all of us nationwide who are waiting.

FROM GUEST EDITOR SUE BOROWIAK, YORKVILLE, IL. WAITING FOR A DOUBLE LUNG TRANSPLANT SINCE MAY 24, 2013. Photo by @suzib66. I'm Sue, a 47-year-old, wife, mother, daughter, sister, and friend. I'm living with Scleroderma, a rare autoimmune disease that has severely damaged my lungs. In my home office, I post some of my favorite memories like old photos of my beautiful children, Miss O and A, and my devoted husband Tim. I love them so much. The bottom left photo of me with my young children was taken ten years ago shortly after my diagnosis of Scleroderma. We really didn't know at that time how my illness would drastically change our lives. One of my greatest fears is that my children will only remember me as their sick mom, especially if the lung transplant is not a success. My illness is hard for us as a family in so many ways, but despite our challenges we just keep on keeping on. #thewaitinglist #whatareyouwaitingfor #organdonation #donatelife #lungtransplant #scleroderma #pulmonaryfibrosis #pulmonaryhypertension

Special Edition: My Lung Transplant Journey February, 21, 2014 - The Waiting List

It's recently been called to my attention that I have not updated this blog since November! Oh my! But in my defense, it's been a long, long winter wrought with cold and snowy weather that essentially has kept me in the house since Christmas Day. I know some of you may be thinking, "Hey, that's the life! She must lounge around all day and eat bon bons. I wish I could do that." Trust me, no you don't. It's boring and sometimes lonely, and there is only so much bad daytime TV to watch before you start going stir crazy. But enough about all that, I'm going to share with what's happening next week.

FYI - it's not the transplant surgery because if you've been following my story, you should know by now that I'm waiting for the perfect match, and that match needs to come from a deceased person who made the selfless decision to be an organ donor. It's been nine months since I've been listed at the Cleveland Clinic, and my match still has not been found. Geez, I could have carried and birthed a baby during this time! Anyhoo, back to next week.

Starting on Monday, February 24, I will be a guest editor on The Waiting List, which is a storytelling project focused on organ donation. The Waiting List can be found on Facebook, Tumblr, and Instagram (@the_waitinglist) I came across the project by following the story of a brave young girl named Angel who has been waiting for a double lung/bone marrow transplant since July 2013. I will be sharing my transplant journey with photos and writing focusing on the challenges of living with a serious illness while waiting for new lungs, and in turn, a new life. Please join me on this journey by following me here, on Facebook or Instagram @suzib66 or @the_waiting list. Thank you!