Special Edition: My Lung Transplant Journey, April 23, 2014 - Quote of the Week

Lucky me, a handsome guy I know has this to say about organ donation:

Simple and to the point! April is Donate Life month.

 Please register to be an organ donor!

Meanwhile, here's a brief update about me - we're still waiting! I did have a "dry run" on March 16, which was very exciting and emotional! To make a long story short, we received an early morning call that a match had been found. We had some time to get ready and get over to the Aurora airport to board the private medical jet to Cleveland. It's a short plane ride, just about and hour, so when we arrived, we were transported to the hospital via ambulance, then off to the transplant ICU to get prepped for surgery. At this point, we had no idea if it was a go or not as we still needed to hear from the team about the viability of the lungs. In a couple of hours, we received the disappointing news from the doctor that the lungs had pneumonia and were not suitable for transplant. We stayed overnight and headed for home the next day, feeling exhausted and defeated - sort of like having an ice cream cone in your hand and the scoop falls on the ground! Nonetheless, at least the run gave us some insight for what to expect when a call comes again! We are hopeful, and prayerful, that the call will come soon - perfect lungs at the perfect time.

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, 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 November 24, 2013 - In the Que

I've hit the 6 month mark on the waiting list for a double lung transplant. That's . . .

15,897,600 seconds

264,960 minutes

4,416 hours

184 days

26 weeks (rounded down)

During this time, I've discovered many things about myself. Here are just ten:

1. I'm not very good at waiting.

2. I still don't like using supplemental oxygen although it's necessary to keep me alive and kicking.

3. Eating a lot to gain weight is not as easy as it sounds.

4. I can spend hours each day doing a whole lot of nothing.

5. I cry over many things, but if it's spilled milk or messy things, I usually swear.

6. I am oh so proud of my children. They are smart, talented, athletic, funny, determined, helpful, and resilient people despite the challenges of having a sick mom.

7. At times, these same children drive me crazy!

8. I chose the best husband ever. I could not imagine navigating this journey without him by my side. I often do not give enough credit.

9. He drives me crazy too!

10. Pajamas or yoga pants are the new black.

Special Edition: My Lung Transplant Journey Oct. 9, 2013 - The Big 5-0!

No, it's not my half-century birthday! Not yet anyway. 50 is my new LAS or Lung Allocation Score, which means I'm much sicker than I was four months ago when I was first put on the transplant list with a score of 40. What is the LAS? Essentially, it's the transplant candidate's place on the waiting list. Scores range from 0-100, with 100 being the most gravely ill people on the list who are given the highest priority for transplant. However, how donor organs are matched to recipients is quite a complicated process. Many factors come into play: blood type, size of the donor and the recipient, and the antibodies of each person. In most cases of lung transplant, the donor is deceased. In other words, I cannot schedule this surgery. I have to wait for a person to die - a person who has made the selfless and generous decision to be an organ donor. "The perfect lungs at the perfect time." That's how one of my friends, who also has scleroderma and is a transplant candidate, describes the difficult waiting process. Recently, I discovered this video that explains organ donation in a straightforward and simple way:



Just in case you skipped the video, here is a chart that explains the transplant process:

Wow! That looks easy on paper, doesn't it? But it's a long and challenging journey! I sometimes feel if I can endure all the ups and downs and the twists and turns on this bumpy road, the actual surgery might be a walk in the park. Luckily along the way, I've met many inspirational people who are lung transplant survivors! Here is a photo of me with three survivors at a summertime U4Sue! New Lungs New Life fundraising event. These three dear people are a wonderful source of support for me, and I'm so happy to know them.

Joan, Roseann, Rick and little ol' me at the summer soiree in August.

Just a few notes: We have been truly blessed by so many people who have supported the U4Sue! campaign by attending events or making donations. As you can see by the thermometer to the right, we have raised more than $8,000! Keeping in mind the uncertainty of our health insurance plan (due to changes that might occur with the Affordable Care Act) as well as the unpredictable nature of the waiting period, which may require many more visits to the Cleveland Clinic than we anticipated, we've decided to increase our fundraising goal to $15,000. The next event on the calendar is a movie night FUNdraiser on Saturday, Oct. 26, 7 pm - 10 pm, at Community Christian Church in Montgomery, IL. We are seeking volunteers to help at this event or to donate items such as wrapped bite-sized or fun-sized candy, bottled water or pop (small and regular sizes), bright colored napkins and straws, and long glow sticks. Here is an online invite with more info:

Invite card customized with Smilebox

You also can check out the event page on Facebook or send me a message here by clicking on the email button, then I can happily fill you in on all the details. Thank you!

Special Edition: My Lung Transplant Journey July 10, 2013 - Life on Hold

I am in a holding pattern. That's just how one of my very good friends described what's happening with my life right now. I'm waiting. We're waiting. Again.

This time we are waiting for THE call from the lung transplant center. It can come at any time, day or night. We jump every time the phone rings. If the caller ID shows the Cleveland Clinic, we must answer the phone. However, if  the call comes after business hours, it might just be the unknown cell number of the on-call coordinator, so again, we must answer the phone. The call may come within days, weeks, months or even longer!

Meanwhile, while we wait, we are preparing as best as we can for the call. It's almost like preparing for the birth of a baby, but without an expected due date, it's so much different. One way we are preparing for the transplant is by planning and kicking off our fundraising campaign, U4Sue! New Lungs New Life. While our health insurance will cover most of the medical costs of the surgery, there are many other expenses that our insurance will not cover like travel, lodging, and household expenses for myself and a caregiver in Cleveland for at least three months after the transplant. Travel includes the clinic's medical jet, which will fly us out for the surgery when a donor match is available. Let's just say we will not be flying economy, instead it's more like super-duper first class for a rather large amount of dosh (as my sister from London would say). We also will need to keep up with our household expenses here in Yorkville. It's quite a huge endeavor!

So that leads me back to our fundraising campaign.  I created this little promo to spread the word:

A free newsletter design by Smilebox

The promo includes one of my favorite songs, "Whole Wide World" by Mindy Gledhill. It's upbeat and inspiring. I'm hoping my lung transplant will be a success so I will have the chance to do so much more with my life besides waiting . . .



If you would like to donate online to U4Sue, you can do so via PayPal by clicking the donate button in the right column. You do not need a PayPal account to do so. Donations also are being accepted at Old Second Bank, 26 W. Countryside Parkway, Yorkville, IL 60560 c/o Victor Ramirez, Universal Banker. Please make checks out to Timothy or Suzanne Borowiak, account number 12201033425. If you would like to keep up with the campaign on Facebook, just "like" our page, U4Sue New Lungs New Life . Thank you for your support!

Waiting . . .

is the hardest part.

As a person living with a chronic illness, I spend a lot of time waiting:

Waiting in the doctor's office

Waiting for prescription refills, test results, or insurance approvals

Waiting for pain to go away

Waiting for promising new medical treatments or research

Waiting for good news . . . or bad

All that waiting is a huge weight on my shoulders. It's a burden I carry with me every day. It's exhausting, and makes me quite anxious.

For about a month or so, I've been waiting for an upcoming visit to the Cleveland Clinic where I will be evaluated for a lung transplant. The organ transplant process is quite complicated, and I am complicated patient with a rare, incurable disease, Scleroderma. Earlier this year, I was turned down as a potential candidate by Loyola University Medical Center after more than a year of being watched by their lung transplant team. I was not accepted by them as a patient due to my various problems related to Scleroderma. I wrote a little bit about my Loyola experience on my archived blog, In Sickness and in Health.

After being declined by Loyola, I took a little break to re-group. Then my pulmonologist at Northwestern sought out other potential transplant centers with mixed results: Duke - no, too risky, University of Pittsburgh - maybe, but problems with my insurance coverage, then the Cleveland Clinic - yes, but . . .

Yes, they will take a look at me, my medical records and my history, and my complications related to Scleroderma. Yes, they will give me a series of medical tests, mostly pulmonary function testing, and I will meet with several members of the transplant team during my two-day visit. Then . . .

The waiting will begin again as we do not expect to have any answers during next week's visit. But we will have questions:

Will I be accepted as a transplant candidate? If so, when would I be listed? If not, what happens next?

The waiting is the hardest part.
Every day you get one more yard.
You take it on faith, you take it to the heart.
The waiting is the hardest part
- Tom Petty