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.

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

Quote of the Week: Gratitude

Gratitude unlocks the fullness of life. It turns what we have into enough, and more. It turns denial into acceptance, chaos to order, confusion to clarity. It can turn a meal into a feast, a house into a home, a stranger into a friend. Gratitude makes sense of our past, brings peace for today, and creates a vision for tomorrow.

~ Melody Beattie, self help author

What are you most grateful for? Take the 30 day gratitude challenge during this month of thanksgiving. I'm posting my blessings on my Facebook page each day, but you don't need FB, a blog, or a fancy electronic device to note your blessings - a journal, a scrap a paper, or a quiet moment alone with your thoughts will do.

My post on Day 4: Today I am thankful for a son who understands when his mom can't go to his soccer game because it's too cold outside, and she's not feeling well . . . I missed him score a goal :(

Please join me on this journey. From this day forward, I will post my blessings on both my personal FB page and the leMOMade page, where you can post yours as well. I also invite you to follow this blog on Facebook or by email by using the tabs to the right. Thank you!

Wing It Wednesday: DIY Halloween Wreath

Yeah, this blog has been looking quite bare for about 4 months or so! YIKES! That's scary ~ just like Halloween which is coming up next week. My front door was looking a bit bare for the upcoming holiday, so I decided to get my craft on and make a festive wreath by using a bunch of craft materials I had on hand around the house. In other words, I didn't spend a dime creating this wreath, nor did I spend a lot of time precisely measuring my materials. I just winged it.

Here's what I used:

A needlepoint hoop

orange tulle

black pipe cleaners

glitter

striped ribbon

scraps of cardstock and orange construction paper

a black Sharpie

spray adhesive and a glue stick

scissors

Here's what I did, and like I said, I just winged it. If you are looking for specific craft instructions, you're in the wrong place. I do OK, but I'm no Martha Stewart.

Anyhoo, I sat down on my couch and cut a whole lot of strips from the orange tulle, let's say about 6-8 inches long or so. I tied the strips along the needlepoint hoop, cut more strips, tied, repeated until the wreath was full and fluffy. I trimmed the poufs that were a bit uneven, then added my embellishments such as the pipe cleaner spider, a ghost made from glittered cardstock. (I just love glitter!), and a "Trick or Treat" label I printed from The Graphics Fairy (awesome free clipart on this site) that I attached with a candy corn striped ribbon.

Here's my finished product:

TA DA!

Do you have a craft project, recipe, or other good idea you created on a whim? Shoot me an email and tell me all about it. There's a button on the top left just for doing that! Thanks!