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!

Special Edition: My Lung Transplant Journey June 13, 2013 - A Sign from Above




My blooming red roses

The power of prayer. It's amazing!

Since my roller coaster ride of chronic illness began, my friends, family, and even strangers have offered prayers to God on my behalf. As I became sicker and sicker, the prayer warriors kept pushing on, sending more and more prayers to our Heavenly Father.   Prayer is comforting. It helps ease the stress of a difficult situation by giving it up to a higher power. While in the hospital this past week for the treatment of pneumonia, the faithful kept the prayer chain going stronger than ever. People around the country, maybe even around the world, were praying for me. Wow!

But I will admit, sometimes prayer is frustrating to me.  Is God listening?  Everyone is praying but I'm not getting any better, I'm getting worse. During those times of doubt, I try to remember, "Sometimes God says wait."

Then, out of the blue, a small glimmer of hope appears. Early Tuesday morning, my first morning home from the hospital, I peeked out my patio doors to see some flower pots my sister planted for me as a surprise for my homecoming.  Then, the sign hit me - a big blooming bush of red roses right outside my door in a place where other plants, including a rosebush that only blooms creamy peach flowers, grow.  Now, you may wonder what is the significance of red roses? Roses, or the scent of roses, are often a sign sent by St. Therese of Lisieux, a French Carmelite nun known as the Little Flower.  There were even small red blooms on a weary rosebush that merely was a few scraggly branches before my medical emergency. Wow!

Skeptics may say the blooming rosebush is merely a coincidence and not a sign from God, but I need to believe that through the intercession of St. Therese, God is telling me that he is listening. That there is hope.

This is not the first time I have seen a sign from St. Therese. Before our beautiful daughter O was born, my husband and I experienced difficulties with fertility. Over a course of two years or so, there were doctor visits, tests, medicines, procedures and more, but still no baby to hold in our arms. At that time, we turned to the power of prayer to get us through this first big challenge of our marriage.  Cue St. Therese.  We attended a special Mass in her honor where they presented relics from her life to the audience. Afterwards, we prayed a novena to St. Therese for nine days asking her to intercede on our behalf in our desire for a family.  We waited. During this time, we continued medical intervention to conceive, and we also started the adoption process.

Then lo and behold, a sign from above appeared to me. I had been teaching third grade at this time, and often children in my class gave me special notes or drawings.  One day, a little boy named Domingo came to me and offered me a picture. "I made this for you, Mrs. B" It was a drawing of a rose! A short time afterwards, we learned we were pregnant, and our daughter was born later that year. Our prayers were answered! Praise God!

Domingo's rose drawing and St. Therese keepsakes

Today, my journey is far from over. Prayers are needed more than ever, not only for me, but for my family, friends, doctors and other medical professionals, the potential donor and their family, and for others awaiting a life-saving transplant like me. So keep them coming prayer warriors! Thank you!

 

If you would like to say a prayer to St. Therese, here is one you can use:

O Little Therese of the Child Jesus, please pick for me a rose from the heavenly gardens and send it to me as a message of love.

 

O Little Flower of Jesus, ask God today to grant the favors I now place with confidence in your hands .... (Mention specific requests).

 

St. Therese, help me to always believe as you did, in God's great love for me, so that I might imitate your "Little Way" each day.  Amen.

 

Special Edition: My Lung Transplant Journey June 11, 2013

Insert dramatic world news music here . . .  Ya know, because it's a "Special Edition!"

Once again it's been quite some time since I posted on leMOMade - busy, busy, busy and sick, sick, sick!

Ugh!

After battling the worst pain ever aka the Shingles for more than 2 months, then completing some required testing for the lung transplant evaluation, I am finally listed for a double lung transplant at the Cleveland Clinic! My apologies to those in the know about this already - it's a re-run. But no matter, because life as we know it around here is never dull!

Nope!

I just returned home from a lovely 6-day visit to Northwestern Memorial Hospital in Chicago for the treatment of pneumonia. For a person with underlying lung disease, pneumonia can be very dangerous, or even fatal!  Luckily, my quick-acting pulmonologist, Dr. C, was on top of everything after I was rushed to the ER of Rush Copley in Aurora in the wee hours of June 5 due to difficulty breathing and very low oxygen levels. Hats off to the Bristol-Kendall emergency responders who arrived in my bedroom within minutes of calling 911! Seriously, these guys and one gal were speedy-quick!

After an evaluation at the ER and a consultation between Dr. C and Rush docs, I was transferred within a few hours to the ICU at Northwestern. Two ambulance rides, cool, huh? But let's not remind my mom about this as she rode in the front of the ambulance on the way to the city! Just a little bit scary, but what a way to clear rush hour traffic, especially at the infamous Hillside strangler of Chicago-area expressways.

After arrival at the hospital, next came poking, prodding, monitoring and all that to determine that yes indeed I had pneumonia! Cue the antibiotics, more monitoring, and rest (Ha, that there is a misnomer while staying in the hospital!). Again, hats off to all medical professionals - it takes special people to take care of others!

So, now I'm home for rest and recuperation while I wait for a double lung transplant. How does that work you ask? Well, in a nutshell, more waiting. As a candidate on the nationwide lung transplant list,  we wait for a match from a generous donor (who has died). Of course, it's a bit more complicated than that, there is a lung allocation score which determines your place on the list, etc. and there is ongoing evaluation by the transplant clinic to determine if your condition is worsening, or perhaps getting better. In fact, we have a return visit at the Cleveland Clinic next week as a required part of the whole process.

When a match is found, I will be rushed to Cleveland via the clinic's own medical jet! Now that's really cool! However, the first call might be a what they call a "dry run" where after careful determination, docs decide that the lungs might not be viable for a successful transplant. In that case, I would return home (not by jet, but by car), then wait some more.

Phew, that's a lot of info! I hope y'all stuck with me so far!

With all of this going on, my family and friends are rallying around to help out me and the family. My sis J has set up a support planner site so volunteers can sign up for household tasks like making a meal, lawn mowing, things like that. My parents and my other sis D are going to assist with the kids and me around the house during my current recuperation period. If you are interested in helping out, you can email J at swfslovenian at yahoo dot com for more info, or you can locate the planner at http://supportplanner.caringbridge.org/  and search for U4Sue New Lungs New Life. You will need to complete a short registration process to access the planner.

Also, be on the lookout on this blog for updates about me, and for info about fundraising activities and events that are in the works. Thank you!

Sue

Quote of the Week: Smile!

Pure joy!

“Your smiling at me is my daily dose of magic. Smile at each other, smile at your wife, smile at your husband, smile at your children, smile at each other - it doesn’t matter who it is - and that will help you to grow up in greater love for each other.”
~ Mother Teresa
 

I need a smile, and I need to smile too. Do you? Let's follow Mother Teresa's gentle words of wisdom. Smile at someone today. It's free and easy.
Just do it!

Catching up, staying in, missing out

It's mid-February and I'm just now getting around to writing the first LeMOMade post of 2013. I could say that I've been too busy to write, but the truth is I've been hiding out in my house avoiding flu germs, sporting flannel PJs, and contemplating the "what if's" of my life. In late January, we headed back to the Cleveland Clinic for more testing and appointments as part of my lung transplant evaluation, and I'm still not done! To make a long story short, I'm closer to being listed as a transplant candidate, but the final decision is pending the outcome of more GI tests.

So once again, we wait.

Meanwhile, there are so many details to work out if the transplant is a go - travel, lodging, childcare arrangements, legal matters, caregiver plans, financial issues. The list goes on and on. At the same time, day to day life continues: kids need to be here or there, papers need to be signed, laundry washed, groceries bought, meals made, house cleaned . . . you get the idea. It's exhausting!

On top of all that, winter is not the best season for my health. Cold weather makes it difficult for me to breathe, and it flares up problems with my hands. This year has been especially hard because I require more oxygen to go out and about, and I need to avoid crowds because of my immune-suppressed body. I've missed gymnastics meets, soccer games, band concerts, recitals, church services, and more. The kids understand, but my heart breaks a little bit each time I say, "Mommy can't go because she is sick." It's sad to be left on the sidelines or stuck in the house. It is lonely too.

That's why the possibility of a lung transplant, although scary and overwhelming, fills me with hope. I might have a second chance at life - a life filled with simple pleasures or exciting adventures. Oh the things I could do with new lungs: walk up the stairs in my house without oxygen tubing trailing behind me, swim, bike, or hike with the kids, travel, ride a horse, climb a dune, skate, kick a soccer ball, or dance. Breath easy. Ahhh . . . that would be awesome!

If a successful transplant is in God's plan for me, the upcoming months will be busy with preparations. With the help of family and friends, we intend to work on a fundraising campaign to assist with the transplant-related costs that will not be covered by health insurance. We also plan to establish a household management team where we will seek volunteers to help out while I'm in Cleveland during the 2-3 month recovery period. More details about all of these activities will be coming soon in the event that I am listed. Stay tuned to this blog for updates.

For now, we seek your loving thoughts and prayers as this difficult journey continues.

So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand, Isaiah 41:10

Love and God's blessings, Sue

ps. If you are not up to date on my story, please take some time to read the November post, Waiting, or My Story found on the right sidebar. Thank you.