tag:blogger.com,1999:blog-49305498846894216162024-03-05T15:17:10.444-06:00leMOMadeA place for sharing hope, inspiration, faith, and fun!
Suehttp://www.blogger.com/profile/07652516877464261484noreply@blogger.comBlogger39125tag:blogger.com,1999:blog-4930549884689421616.post-61316889064696162342015-08-12T08:00:00.000-05:002015-08-12T08:00:00.189-05:00Special Edition: My Lung Transplant Journey, August 12, 2015<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgLmVgcohWkNTDV4aQWkGFfdlXFUhZZ0HXqQvNNHYTjjTnvJ4X7WXwO7dMy_0hgtarjua_9b7Un6r4g3HJwuVVEv7j5wbrQy6Wc7gzFA28CK_-ULXIbkD7ExMSzOjA_NrbhOnYIZ7ftljg/s1600/bloggercard15.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgLmVgcohWkNTDV4aQWkGFfdlXFUhZZ0HXqQvNNHYTjjTnvJ4X7WXwO7dMy_0hgtarjua_9b7Un6r4g3HJwuVVEv7j5wbrQy6Wc7gzFA28CK_-ULXIbkD7ExMSzOjA_NrbhOnYIZ7ftljg/s320/bloggercard15.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My card to my donor's family with letter inside!</td></tr>
</tbody></table>
Good day LeMOMade readers! First and foremost, I'm sorry for not keeping this page updated in the past four months or so, but I've been busy enjoying my second chance at life! I recently celebrated 10 months post transplant, and I'm doing great! The test results and checkup from my recent visit to the Cleveland Clinic in July indicated that all is well - no rejection or infection, and my lung function has slightly improved since April. Woo Hoo! Cheers to me, my organ donor, and his family! Speaking of my donor family, I recently received a letter from my donor's mother via Lifebanc of Ohio, and I sent a reply just last week!<br />
<br />
Per Cleveland Clinic protocol, contact between recipients and donor families remains anonymous and confidential, and must be sent through Lifebanc. I didn't learn much about my donor yet, but from his mother's writing I know she loves and misses her son very much. She has been comforted knowing his gift of organ donation saved the lives of several people, and helped many others as well. I hope to learn more about my donor if our correspondence continues in the future.<br />
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As I mentioned earlier, I've been busy living life with my new lungs over the past several months. We travelled a little bit this summer. In June, we went to Wichita, KS to see our daughter compete in the YMCA National Gymnastics meet. My husband and I missed it last year, so it was fun to see her and her team compete. After a few days in Wichita, we stopped for a short visit to the City Museum of St. Louis and a drive by the Arch. After my CC appointments in July, we visited Indiana and Michigan on the way home, where we picked blueberries and enjoyed a picnic lunch in New Buffalo. Day to day, I've been busy driving kids here and there, and I also started a part-time, freelance project writing web content for a marketing company. We also added a rescue dog to our family - Lucy, an Australian Cattle Dog mix!<br />
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Here are some photo highlights from the last four months . . . <br />
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<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjAXt-si9rC_oND1qdYeePhGQa_KPkfmVgXRwGwUoGBPpx93UB0Ynpuk7SnKXFP3qUZ39yVCZXUd6yHDhHUlrNm3A0HF-G6c6zvVZzfsuFoky7-Qz-COzGcJUl8BJ_MKYYRMLQH09dodTs/s1600/bloggerApril15.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjAXt-si9rC_oND1qdYeePhGQa_KPkfmVgXRwGwUoGBPpx93UB0Ynpuk7SnKXFP3qUZ39yVCZXUd6yHDhHUlrNm3A0HF-G6c6zvVZzfsuFoky7-Qz-COzGcJUl8BJ_MKYYRMLQH09dodTs/s400/bloggerApril15.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">April</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjT_Guy_hxftkSm58NEpICZ3y5k-yi-uBpfcnqOA7fS5X0nEVrmB4kOZq1Ry4nuI02Wg-grE1Mm-2K5EaMiqHJdPU54dT78i-GX33rfsSNZB65xOMPanay9huE8Dr8cCRijuZNoybc9HFg/s1600/bloggerMay15.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjT_Guy_hxftkSm58NEpICZ3y5k-yi-uBpfcnqOA7fS5X0nEVrmB4kOZq1Ry4nuI02Wg-grE1Mm-2K5EaMiqHJdPU54dT78i-GX33rfsSNZB65xOMPanay9huE8Dr8cCRijuZNoybc9HFg/s400/bloggerMay15.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">May</td></tr>
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<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjrZQdzBotRQtkNIg81fYaG6dYsIrFH3AY0SeKUKXV9ydgOhfFWsFz-wOwe23tCblfyKstLk2-mamMPTijlvADg4Rmz7m6QM3ATN2kZPeQ24wqMzf07Q0fhVFtWyX35aQiUsLYRhRd7zQE/s1600/bloggerJune15.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjrZQdzBotRQtkNIg81fYaG6dYsIrFH3AY0SeKUKXV9ydgOhfFWsFz-wOwe23tCblfyKstLk2-mamMPTijlvADg4Rmz7m6QM3ATN2kZPeQ24wqMzf07Q0fhVFtWyX35aQiUsLYRhRd7zQE/s400/bloggerJune15.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">June</td></tr>
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<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJ-eeme0coqz7MllaHBx7Iwe3JZST9JmjT5-InSSGf-Qt84jFZccCoFc0YCnuPY0F1nIcBGMXaCgRFCfMThZISWCNyYUNxjwt4wXjrt5W61Bt-xCVIcF-pR2ssgIXB7LLtgxLUTsImcv8/s1600/bloggerjuly15.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJ-eeme0coqz7MllaHBx7Iwe3JZST9JmjT5-InSSGf-Qt84jFZccCoFc0YCnuPY0F1nIcBGMXaCgRFCfMThZISWCNyYUNxjwt4wXjrt5W61Bt-xCVIcF-pR2ssgIXB7LLtgxLUTsImcv8/s400/bloggerjuly15.JPG" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">July</td></tr>
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</div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZF8AkznoDgAi7aatldsff6y53OSefpoQIiKnQlsGEuE-Xx6YBSVfVmBxMSxyxNpt21DgFPk-A-C2lThLvjXbtqRXf0RES2Cp-lCNPCZsgfZWQwlDzeec3p-xTruXNpS7a6ogIMYeLXkM/s1600/bloggerAdam15.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZF8AkznoDgAi7aatldsff6y53OSefpoQIiKnQlsGEuE-Xx6YBSVfVmBxMSxyxNpt21DgFPk-A-C2lThLvjXbtqRXf0RES2Cp-lCNPCZsgfZWQwlDzeec3p-xTruXNpS7a6ogIMYeLXkM/s320/bloggerAdam15.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">And this just happened last week - broken wrist :(<br />
Never a dull moment!</td></tr>
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Good Times!</div>
Suehttp://www.blogger.com/profile/07652516877464261484noreply@blogger.com0tag:blogger.com,1999:blog-4930549884689421616.post-83584908831954553972015-04-08T08:00:00.000-05:002015-04-08T08:00:00.935-05:00Hope into Action: A Story of International Adoption ~ a guest post<div class="MsoNormal">
<i>Hello readers! Today it's a special Q & A here on the blog with my good friend Michelle, who so graciously agreed to share her family's story of international adoption. Enjoy!</i></div>
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<span style="text-align: left;">My friend Sue asked me to be a guest blogger
about our family’s adoption journeys. I am honored and excited to share the
amazing blessing that adoption has been for us. Before we get to the Q & A, let me give you some background on our family. My husband Tim and I are teenage sweethearts and have been
married for 25 years. Wow, that makes me feel old! Anyway, until a few years
ago we had three biological sons and all was good. We made God and church the
priority for our family. We lived in the suburbs of Chicago in a comfortable
home. Tim worked full time while I worked part time. The kids had kid
activities. Generally, we were an average family with typical challenges. We had
a happy, comfortable life. Then four years ago we embarked on our journey to
adopt a daughter from Ethiopia. A few months ago, we again boarded the coaster
of adoption. This time we’re adopting a son from China.</span></div>
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<span style="text-align: left;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjrEmsThm2djBxm8WS73rpSOM1avXBI4fT943UDIxDfIBnraB7-7YlvoBuBNnL06iZCgoFj9Amfc_LPgtkRln-wxE_J2WCacGriFUpJhKprkt9YE-MnIec7kmfRqb0aNQyX1dgVy2-gj9w/s1600/pic2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjrEmsThm2djBxm8WS73rpSOM1avXBI4fT943UDIxDfIBnraB7-7YlvoBuBNnL06iZCgoFj9Amfc_LPgtkRln-wxE_J2WCacGriFUpJhKprkt9YE-MnIec7kmfRqb0aNQyX1dgVy2-gj9w/s1600/pic2.jpg" height="198" width="400" /></a></span></div>
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<b style="text-align: left;">Q: </b><b style="text-align: left;">After having three children, why did you choose adoption?</b></div>
<div class="MsoNormal">
<b>A:</b> The short answer
is that God wanted us to care for children that did not have a family. The long
answer is that our church is committed to living out what God teaches, and that
is to care for his orphans. There were several families that had adopted or
were in the adoption process. Seeing them reach out to children from hard
places, bring them into their families and love them was like seeing Jesus at
work. It was clear to us through a series of events that we were to do the
same. So we set aside our comfortable status quo and dove into unchartered waters
to make a difference that would have a lasting impact on the life of a child.
What we have since discovered is that our live has been immeasurably blessed by
our daughter.<o:p></o:p></div>
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<br /></div>
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<b>Q: Why
international adoption?<o:p></o:p></b></div>
<div class="MsoNormal">
<b>A:</b> There are kids
on every continent and in every nation that need a family. There are nearly as
many opinions about adoption as there are children that need a family. Alright,
I might be exaggerating a little, but it is very real that people have very strong
opinions about adoption. I don’t think there is any one, right answer for every
family. <o:p></o:p></div>
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We chose international adoption for several reasons. Programs that
support orphans in the U.S. are more common and capable than those in other
nations. Although being an orphan is always a tragedy that no child should ever
experience, an orphan in the U.S. is more likely to receive care than orphans
in other nations. Also, after reviewing many profiles of U.S.-based children each
had specific guidance that did not fit our family structure. In several cases
the child was recommended to be the only child or the youngest child in a
family. That did not work for us. In the case of our in-process adoption from
China, a primary reason for international adoption was that our soon-to-be son
simply captured my heart when I saw his picture on the waiting-child list.<o:p></o:p></div>
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<b>Q: How did family
and friends react to your decision to adopt? What did you say to naysayers if
there were any?<o:p></o:p></b></div>
<div class="MsoNormal">
<b>A:</b> Each time our
children’s responses reflected their personalities. The first time we heard
comments like: Will she like it in our family? Will she be able to make friends
when she gets here? Can we afford this? Will you love her the same way you love
us? This time around the comments are different because our son will be older
when he comes home and he will not speak English. Instead, there is uncertainty
about having a brother, who is a stranger, in our home and being unable to
communicate with him.<o:p></o:p></div>
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Our extended family initially was very surprised because we had
never talked about adopting and our final decision was made quickly. It was
only a few weeks between first floating the idea and making the final decision.
This is also true of our current adoption. In general, naysayers just don’t say
anything. Maybe they remember their mothers teaching them, “if you don’t have
anything nice to say, don’t say anything at all.” There were some in our
inner-circle that played “devil’s advocate” to ensure we had thought through
all the ups and downs, but once we made our decision, even they were very
supportive.<o:p></o:p></div>
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<br /></div>
<div class="MsoNormal">
<b>Q: Can you describe
the adoption process?<o:p></o:p></b></div>
<div class="MsoNormal">
<b>A:</b> The adoption
process varies greatly depending on whether it is a domestic or international
adoption, and if international, the chosen country. Our experience is
international adoption of an unknown child from Ethiopia, and a now a known
child from China. When the child is unknown the family does paperwork, waits to
be matched with a child, then travels to meet the child and bring her home.
When the child is chosen from a waiting child list, the family has selected a
child, does paperwork, then travels to meet the child and bring him home.<o:p></o:p></div>
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Of course, this is a vast oversimplification of the adoption
process! There is a lot of paperwork, waiting, more paperwork and more waiting
all the while feeling somewhat in the dark about the next step. The adoption
agency is essential to navigating through the process. More information about
the process can be found at most agency websites. To see more detail visit <a href="http://childrenshouseinternational.com/">Children’s House International</a>. You can also
view the Asia Waiting Children listings while you are there.<o:p></o:p></div>
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In addition to paperwork, financial obligations are required to be met throughout the process. Adoption costs include a home study, domestic
and foreign government fees, orphanage fees, travel, training, and more. There
are definitely some misconceptions about the cost of adoption so anyone
considering adoption should get the facts from agency websites. We funded our
first adoption from savings. This time we are fundraising to offset some of the expenses. We estimate the total cost to be about $32,000 and our fundraising goal
is $20,000. We have had many generous supporters leaving some amazingly
encouraging messages at our fundraising site. See what they have had to say at
our site, <a href="http://www.youcaring.com/adoption-fundraiser/ciochon-family-adoption-from-china/282485">Ciochon Family Adoption From
China</a>.<o:p></o:p></div>
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<b>Q: What
adoption challenges did you experience or are you experiencing?<o:p></o:p></b></div>
<div class="MsoNormal">
<b>A:</b> As with any
worthwhile undertaking there are challenges both big and small. One of the
challenges with adoption that I believe is less tangible is the underlying
sense of being in limbo from start to finish. Until that child is home, there is
so much uncertainty and waiting that an unsettled cloud hovers over everything.
It’s like partially holding your breath for months on end all the while being
uncertain when you can breathe deeply and freely again.<o:p></o:p></div>
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Each day comes with questions such as: When will
that paperwork get approved? How will I be able to communicate with him? Will
we have enough money at each stage in the process so that we don’t delay it? Did
I get the email that we've been matched with our daughter - the one I've been
checking for five times a day for the last several months? What if the paperwork I
send to the U.S. government is not filled out properly? Will he have attachment
issues? Are we biting off more than we can chew? <o:p></o:p></div>
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And the beyond-measure benefits of these
challenges include: Coming to the end of myself and being reliant on a big God
that is faithful, the sweet words of a child’s prayer saying thank you for my
family, visiting the doctor for a checkup and knowing she is healthy and well-nourished,
observing the boys caring so sweetly for their sister and having my heart just
about explode with joy.<o:p></o:p></div>
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Challenges? Yes; Worth it? ABSOLUTELY!<o:p></o:p></div>
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<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-Tx2uouZN7RkEOzT3staWPUdu09g1xgQ9iVW3CXcWRKTd59aGoovUFlWk9OvYBUir9Fj1d5AiiVFwPDdNFho4AxuoxlVU8yPSO_jqa_vvybJEGZhI7TxLBAfn6byOWtmbUcKwRXNGkYE/s1600/grace.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-Tx2uouZN7RkEOzT3staWPUdu09g1xgQ9iVW3CXcWRKTd59aGoovUFlWk9OvYBUir9Fj1d5AiiVFwPDdNFho4AxuoxlVU8yPSO_jqa_vvybJEGZhI7TxLBAfn6byOWtmbUcKwRXNGkYE/s1600/grace.jpg" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Tim and Michelle with their daughter in Ethiopia</td></tr>
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<b>Q: Describe
your feelings/emotions when you first met your daughter? How did it feel to bring her
home?<o:p></o:p></b></div>
<div class="MsoNormal">
<b>A:</b> After five
months of paperwork, we waited to be matched with our daughter for another year
before getting our referral phone call. On that day which by the way was my
birthday, our agency sent us an email with photos. Tim and I sat at the
computer like the expectant parents we were…double clicked on the file…there
she was! We both gasped and whispered, “she’s beautiful!” Our hearts were
captured at that very moment.<o:p></o:p></div>
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<div class="MsoNormal">
About six weeks later we were in the agency’s
transition home in Ethiopia. It was a large room with indoor-outdoor green
carpet and a few toys. The coordinator asked the nanny to bring our daughter to this
room. The nanny, holding her, stopped in the doorway without crossing the
threshold and my eyes saw those many pictures which I had been staring at for
weeks just spring to life. There she is! It was just as momentous as when the
doctor announced three times over, “it’s a boy!” I remember holding her and
feeling her warmth, her presence, cradling her head in my hand. <o:p></o:p></div>
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<div class="MsoNormal">
Unfortunately, we had to leave her at the
transition home for an additional three months after we met her. On our second
trip to Ethiopia we picked her up and had her with us at the transition home
which was amazing! Then on her first birthday, we landed in the U.S. and brought
her home and she met her brothers! What a birthday gift!!</div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXrj_H1-Em7H4kRHc4a01nE8b4vpEcvjpeo_hga6BeMQj2NGJ8Dl5bVnQti8uXzi9s-3jSxH8vqb9rHkmRY1HXYHFvsqlXq6t59wqIYMQ8Xxc91OFgdVhKl-b8hyol5eadbn_D4qkWVfc/s1600/grace2.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXrj_H1-Em7H4kRHc4a01nE8b4vpEcvjpeo_hga6BeMQj2NGJ8Dl5bVnQti8uXzi9s-3jSxH8vqb9rHkmRY1HXYHFvsqlXq6t59wqIYMQ8Xxc91OFgdVhKl-b8hyol5eadbn_D4qkWVfc/s1600/grace2.jpg" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">She's home! Her brothers greeted us at the airport.</td></tr>
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<b>Q:
How do you or will you teach your children about their home country?</b><br />
<div class="MsoNormal">
<b>A:</b> We already talk
about Ethiopia regularly. She knows it is in Africa and she enjoys Ethiopian
food even when it’s spicy. She also has more than one friend who was also
adopted from Ethiopia at about the same time as her. We hope to return
there some day but time will tell whether we will be able to make that happen. <o:p></o:p></div>
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<div class="MsoNormal">
About China, we plan to take up some strong
traditions especially related to the Chinese New Year which is a huge
celebration in China. There are other festivals and traditions that we have
learned about in our pre-adoption training that we would like to begin
observing. Another excellent resource is being near a large city with both
Ethiopian and Chinese culture to experience.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b>Q: Describe
a typical day in the life of a working mom with 4 soon to be 5 children?<o:p></o:p></b></div>
<div class="MsoNormal">
<b>A:</b> LOL! The days
begin early and end late especially with children at varying ages. The younger
ones are up early and the older ones are up late. And they typically all need
mom for something. We rely heavily on being organized and coordinated. I have a
corporate job which I've had for 25 years. Due to the anticipated additional
cost of having a fifth child, I have added hours to my work schedule.
I now work 30 hours a week but I have the ability to work from home most of the
time. Without this flexibility I would not be able to do what I do. My commute
time from work to dinner preparation is about 30 seconds. Overall, it’s
challenging but it works and I wouldn’t have it any other way!! Unless of
course I won the lottery and I could allocate all my time to the family. <o:p></o:p></div>
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<b>Q: Do
you have any words of advice for prospective adoptive parents?<o:p></o:p></b></div>
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<b>A:</b> Being a parent
of any child, whether biological or adopted, will stretch and grow you in ways
you never anticipated! There are some unique challenges with parenting a child
who comes from a hard place. That child will almost surely experience grief,
loss and doubt to some degree at some point in their development. Don’t try to
handle these challenges without the support and help of people who have walked
in your shoes or from seasoned professionals. Also, dear prospective adoptive
parents, you are a fulfilling a unique role in God’s family by caring for an
orphan; God Bless!<o:p></o:p></div>
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<i>Thank you Michelle for sharing your family's journey. I can't wait to meet the newest member of your family. If you would like to help this amazing family bring their son home, you can do so at <a href="http://youcaring.com...option-from-china/282485" target="_blank">Ciochon Family Adoption From China </a>or for more information and updates, join their Facebook group, <a href="https://www.facebook.com/groups/389603967871753/" target="_blank">Operation "Bjorn" Adopting from China</a>. Also, if you are a leMOMade reader and would like to share your story, please send me an email by clicking the link in the left column.</i></div>
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Suehttp://www.blogger.com/profile/07652516877464261484noreply@blogger.com0tag:blogger.com,1999:blog-4930549884689421616.post-39106496498667386222015-03-23T20:20:00.001-05:002015-12-03T00:48:40.989-06:00Special Edition: My Lung Transplant Journey, March 24, 2015 - Six Month Lungiversary, sweeeet!<div>
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<span style="font-family: "times" , "times new roman" , serif;"><span style="font-family: "helvetica neue light" , , "helvetica" , "arial" , sans-serif;">Wow! Today I celebrate six months post double lung transplant! It's amazing! I feel fairly well, and I thank God and my donor every day for my second chance at life. It seems like the months have gone by so fast since September 24, 2014. We celebrated special days like birthdays, Thanksgiving and </span><span style="font-family: "helvetica neue light" , , "helvetica" , "arial" , sans-serif;">Christmas, but we also reveled in the simple joys of life like good food, a clean house, or time together as a family.</span></span></div>
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<span style="font-family: "times" , "times new roman" , serif;">For me, the most exciting thing that's happened over the past six months is waking up every day being able to breath with ease - no oxygen, no tubes, and much less worry! I'm able to do normal things like take a shower, cook a meal, or run errands with much less difficulty. Although I still need assistance with activities such as carrying groceries or lifting heavy items, doing laundry, and vacuuming, I've been getting stronger every day. I'm also able to do fun stuff like take my daughter shopping, play wii games with the hubby and kids, get together with friends, and most importantly watch my children participate in the activities they love: soccer, gymnastics, running, flute and percussion. </span></div>
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<span style="font-family: "times" , "times new roman" , serif;">There are many more little things that have improved since transplant. For example, I can sing along to hymns at church. I can sleep in my own bed, do something around the house without having to stop to rest every few minutes, and climb stairs without getting out of breath. I can talk, walk, and breath all at the same time, which makes exercising much easier. I also can eat and breathe simultaneously, which makes dining much more enjoyable than pre-transplant. Speaking of eating, I believe I've reached my weight gain goal already thanks to getting my taste buds and appetite back, and my cravings for fruity, chewy snacks like gummy bears, fruit gels, jelly beans, and a variety of dried fruits . . . and of course pie, ice cream, chocolate and other treats!</span></div>
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<span style="font-family: "times" , "times new roman" , serif;"><br /></span><span style="font-family: "times" , "times new roman" , serif;">All sweet things, just like my life with new lungs!</span></div>
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Suehttp://www.blogger.com/profile/07652516877464261484noreply@blogger.com4tag:blogger.com,1999:blog-4930549884689421616.post-67747112455651894012014-11-11T15:35:00.000-06:002014-11-12T08:58:14.732-06:00Special Edition: My Lung Transplant Journey, November 11, 2014 - Missing Home<div>
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Sigh . . . I just want to go home! I've been away on medical leave for two months and ten days now, and I'm so ready to head back to Yorkville! However, still no word on when I can bust out of here! Hopefully, after this week's clinic appointments they will give me the go ahead because . . .</div>
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I miss my kids (even though they just came for a short visit).</div>
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I miss my hubby (even though he was here for over a week taking care of me).</div>
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I miss my parents.</div>
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I miss my bed and my Lazy Boy recliner.</div>
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I miss my kitchen with full size appliances including a gas stove and proper equipment for cooking and baking. Yes, we've had some mini kitchen disasters out here like burnt puff pastry apple tarts!</div>
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I miss my master bath where the hot and cold water works just right. Not so much here.</div>
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I miss my own bathrooms in general.</div>
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I miss my thermostat that can maintain a proper temperature, rather than really, really hot or freezing cold. Again, not so much here.</div>
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I miss looking out my front and back windows to see what's going on in the 'hood or to check the weather.</div>
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I miss many good things about my house like the <a href="http://2friends3things1blog.blogspot.com/2011/10/our-house-in-middle-of-our-street.html" rel="nofollow" target="_blank">3 things</a> I wrote about once upon a time on my Good Things blog (that hasn't been updated in forever!)<br />
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I knew that this recovery period away from home would be necessary and just temporary, but </div>
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I'm feeling like Winnie the Pooh when he was stuck in rabbit's hole!<br />
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I'm trying to make the best of it, but the bottom line is I'm homesick!</div>
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Suehttp://www.blogger.com/profile/07652516877464261484noreply@blogger.com0tag:blogger.com,1999:blog-4930549884689421616.post-27511113123321332862014-11-02T05:30:00.000-06:002014-11-02T05:38:24.882-06:00Special Edition: My Lung Transplant Journey, November 2, 2014 - {Dis}Comfort and Joy!<div>
<span style="font-family: Times, Times New Roman, serif;">November is here, and it's nearly 6 weeks out from my surgery. Wow!</span><br />
<span style="font-family: Times;"></span> </div>
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<span style="font-family: Times, Times New Roman, serif;">All and all, my recovery is going well. My test results look pretty good, I'm adjusting to the medications, and most importantly I can breathe, but . . . </span><span style="font-family: Times, 'Times New Roman', serif;">Yes, there is always a "but."</span><br />
<span style="font-family: Times;"></span> </div>
<span style="font-family: Times, Times New Roman, serif;">The "but" in this case is a constant state of uncomfortable tightness around my chest and ribcage which can be painful at times, and generally makes it difficult for me to move my upper body. It's like wearing a really, really tight bra 24/7. I'm sure the ladies can relate to this comparison, except I'm not wearing a bra, just tank tops and camis, and I can't take it off! My arms are weak and achy too, often feeling like heavy blocks of concrete by the end of the day. In turn, this unpleasant side effect has left me tired and cranky because I need to constantly re-adjust my body position to find comfort. This, combined with medicine-related insomnia diminishes my quality of sleep during the night or rest during the day. To remedy this problem somewhat, we went out to rent a recliner this weekend as one was not available at our suites hotel. A recliner also helps me with my dreaded acid reflux! </span><br />
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<span style="font-family: Times, Times New Roman, serif;"><br /></span><span style="font-family: Times, "Times New Roman", serif;">It's the opposite problem I had before transplant where I could move OK, but not breathe very well. My body has turned the tables on me. I can breathe better now, but my body can't move that great. The doc said my new lungs need to adjust to their new home because they are a different size and shape than my yucky old lungs. They need to "squish" into place and that will take time. It's not a scientific explanation but it makes sense to me.</span><br />
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<span style="font-family: Times, "Times New Roman", serif;">This discomfort and pain is frustrating as the ability to breathe has offered me the new found freedom to jump back into the real world with gusto, but my body says, "Hey, not so fast missy. Slow down!" I'm trying to listen, keep the big picture in perspective, and remain positive that this journey will be worth it, not only in the end, but along the way as well.</span><br />
<br /><span style="font-family: Times, "Times New Roman", serif;">A quote from one of my very favorite movies "Steel Magnolias" comes to mind when I think about the worthiness of this journey:</span></div>
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<span style="font-family: Times, Times New Roman, serif;"><br /></span><span style="font-family: Times, Times New Roman, serif;">I've surpassed 30 minutes of wonderful so far, and I'm keeping the faith that I will have many, many more minutes, days, and years of wonderful to come.</span></div>
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Suehttp://www.blogger.com/profile/07652516877464261484noreply@blogger.com0tag:blogger.com,1999:blog-4930549884689421616.post-31870017962781494042014-10-29T14:20:00.000-05:002014-10-29T14:27:14.472-05:00Special Edition: My Lung Transplant Jouney, October 29, 2014 - Oh My GI!<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Times, "Times New Roman", serif;">It took the tech 3 tries to get the PH monitor in!</span></td></tr>
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<span style="font-family: Times, "Times New Roman", serif;">GI as in gastrointestinal, or as I like to say "tummy troubles" because words for problems with the digestive track gross me out - eeewww!</span><br />
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<span style="font-family: Times, "Times New Roman", serif;">Of course, GI issues can be much more than stomach aches or other yucky things that make one feel sick. They can involve many different parts of the body's digestive track. </span><br />
<span style="font-family: Times, "Times New Roman", serif;"></span><br />
<span style="font-family: Times, "Times New Roman", serif;">My GI issues include </span><a href="http://www.webmd.com/heartburn-gerd/guide/reflux-disease-gerd-1" rel="nofollow" target="_blank"><span style="font-family: Times, "Times New Roman", serif;">GERD </span></a><br />
<span style="font-family: Times, "Times New Roman", serif;">(gastroesophageal reflux disease), and a lack of motility in my esophagus. These problems are both complications of Scleroderma, which was <b>not</b> cured by the lung transplant by the way, but more about that in a future post.<br />
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My doctors need to watch these GI issues closely because they don't want anything aspirating into the new lungs. In fact, these very GI problems pegged me as high risk in terms of transplant right from the get go! As a person living with Scleroderma, I need to keep the GERD symptoms under control in order to protect my new lungs as well as my overall health and well being. This can be done via medications and lifestyle choices such as diet, dining, and sleeping. No spicy tacos late at night for me!<br />
<span style="font-family: Times, "Times New Roman", serif;"></span> </span><span style="font-family: Times, "Times New Roman", serif;"></span><br />
<span style="font-family: Times, "Times New Roman", serif;">So how do docs keep these GI problems in check? Well class, that would involve some oh-so-lovely testing taking place this week including an esophageal manometry test, a 24-hour PH monitoring study, and a visit to the molecular imaging lab for a gastric emptying study. All of these tests can be unpleasant as I have experienced them in the past during the transplant evaluation process and within the 10 years since my diagnosis of Scleroderma in 2004. The </span><a href="http://my.clevelandclinic.org/health/diagnostics/hic_Esophageal_Manometry_Test" target="_blank"><span style="font-family: Times, "Times New Roman", serif;">esophageal manometry test</span></a><span style="font-family: Times, "Times New Roman", serif;"> is a swallowing test where they place a thin tube down your nose then you drink sips of water over a period of 10 minutes or so - eeewww! I have failed this test in the past, and did so again today because my esophagus is essentially a "lead pipe." Food goes down the hatch by gravity for me!</span><br />
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<span style="font-family: Times, "Times New Roman", serif;">The </span><a href="https://www.clevelandclinic.org/thoracic/Swallowing/dia_24-Hour.htm" rel="nofollow" target="_blank"><span style="font-family: Times, "Times New Roman", serif;">PH monitoring study</span></a><span style="font-family: Times, "Times New Roman", serif;"> essentially involves placing a thin tube down one's nose and into the esophagus. Who invents these tests? Again I say, eeewww as this test makes me gag - no joke! The probe is attached to a little machine that records episodes of acid reflux for 24 hours, and allows the patient to note symptoms such as coughing or heartburn at the push of a button! Then, the </span><a href="http://my.clevelandclinic.org/ccf/media/files/Radiology/CCF_NuclearMedicine_GastricEmptyingSolidStudy.pdf" rel="nofollow" target="_blank"><span style="font-family: Times, "Times New Roman", serif;">gastric emptying study</span></a><span style="font-family: Times, "Times New Roman", serif;"> is essentially an x-ray that tracks the movement of food - usually cold (radioactive) scrambled eggs and toast, through one's stomach. It's not that bad, just long, boring, and the food is just yucky! These are just three of the tests on my plate this week to assess GI issues, get it - on my plate? Ha ha ha - I need to keep my sense of humor despite of everything, even if I am the only one laughing!</span><br />
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<span style="font-family: Times, "Times New Roman", serif;">Although these tests are annoying and uncomfortable, I do know they are important to the overall assessment of my new lungs and my recovery process. The good news is that these tests will be done before Halloween so I can enjoy some chocolates or other treats on Friday. I am a sucker for candy, and I won't have the luxury of stealing some from the kids' bags this year. BOO hoo!</span><br />
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<span style="color: black; font-family: Times, "Times New Roman", serif;">Happy Halloween!</span>Suehttp://www.blogger.com/profile/07652516877464261484noreply@blogger.com3tag:blogger.com,1999:blog-4930549884689421616.post-65172219284532822872014-10-22T04:37:00.000-05:002014-10-22T21:32:51.199-05:00Special Edition: My Lung Transplant Journey, October 22, 2014 - It's You, Not Me - The Mask!<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"></span>Well, it's not really YOU personally. It's y'all collectively and those tiny buggers lurking in our environment waiting to strike at any time causing cough, cold, or flu. Oh my!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjD4Ubpj-Ckl6km5wVb_Jx7pBoWhmDZOlNfXd4xv4iC5xaqugvLF4i_lOmvMl71cxFa1_JuMl5OYWUrKv0MMF8tm25bey8FkRGyN55Qf1YVD0PMs_Dz4swN_Wm5xhLEqTQFeiES3L2lDYM/s640/blogger-image-1122212188.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="318" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjD4Ubpj-Ckl6km5wVb_Jx7pBoWhmDZOlNfXd4xv4iC5xaqugvLF4i_lOmvMl71cxFa1_JuMl5OYWUrKv0MMF8tm25bey8FkRGyN55Qf1YVD0PMs_Dz4swN_Wm5xhLEqTQFeiES3L2lDYM/s320/blogger-image-1122212188.jpg" width="320" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjD4Ubpj-Ckl6km5wVb_Jx7pBoWhmDZOlNfXd4xv4iC5xaqugvLF4i_lOmvMl71cxFa1_JuMl5OYWUrKv0MMF8tm25bey8FkRGyN55Qf1YVD0PMs_Dz4swN_Wm5xhLEqTQFeiES3L2lDYM/s640/blogger-image-1122212188.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br /></span></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjD4Ubpj-Ckl6km5wVb_Jx7pBoWhmDZOlNfXd4xv4iC5xaqugvLF4i_lOmvMl71cxFa1_JuMl5OYWUrKv0MMF8tm25bey8FkRGyN55Qf1YVD0PMs_Dz4swN_Wm5xhLEqTQFeiES3L2lDYM/s640/blogger-image-1122212188.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br /></span></a></div>
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<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Germs!!!</span></div>
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<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Let's face it, we live in a not so sterile world and as a recent organ receipient, I need to take extra precautions while out and about in public by sporting the latest fashion accessory - the mask!</span></div>
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<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">I don't really mind wearing the mask per se because I can breathe through it easily, it protects my new lungs, and I can make faces at the people who are eyeballing me oddly without them knowing it! However, there are a few things I don't like about wearing it:</span></div>
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<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">- The mask fogs up my glasses making it difficult to see especially outdoors.</span><br />
<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">- The standard "procedure" masks are not that attractive. (But a little browsing on Etsy turned up some super cute masks to remedy this problem)</span></div>
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<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">- Most of all, I simply do not like people staring at me and, as of late, steering clear of me!</span></div>
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<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">I'm sure most people are just curious about the mysterious woman behind the mask, or perhaps they are just scared especially with the Ebola hullabaloo in the news right now. I do wonder what some people might be thinking as they gawk or walk away. The number one thought is most likely "Does she have some highly contagious disease that I might catch?" If so, "Why is she out and about at church, a restaurant, the mall or other public venue? or "Why is she putting my health at risk? She should stay home!"</span></div>
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<span style="font-family: Times, Times New Roman, serif;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">I </span><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">would like to speculate that some of the curiosity seekers are thinking, "Wow, she must have had an organ transplant!" I'm cool with that. Others might have their own take on the mask like a young boy of about 3 years old we encountered at a local nature center last week. "Hey, there's the doctor!" he exclaimed when he saw me. I think his mom was mortified by his innocent remark, but I was not. Under my mask, I just laughed and smiled!</span></span></div>
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Suehttp://www.blogger.com/profile/07652516877464261484noreply@blogger.com0tag:blogger.com,1999:blog-4930549884689421616.post-46928210159628851652014-10-15T00:51:00.000-05:002014-10-15T16:27:34.869-05:00Special Edition: My Lung Transplant Journey, October 15, 2014 - Kudos to the Care Crew<span style="font-family: Times, Times New Roman, serif;">Wow, today I celebrate 3 weeks with new lungs! I can't believe it! Nearly everything seems like a brand-new experience because despite some pain, discomfort, and fatigue, I can breathe so much better now than I have in years!</span><br />
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<span style="font-family: Times, Times New Roman, serif;">My successful recovery would not have been possible without an awesome crew who took great care of me before and after my transplant on J82 - the lung/heart transplant floor at the Cleveland Clinic. From the lovely ladies who brought my meals to the excellent nursing staff, I can't say enough good things about these dedicated people!</span></div>
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<span style="font-family: Times, 'Times New Roman', serif;">Here are a few photos that represent just part of the care team.</span></div>
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<span style="font-family: Times, Times New Roman, serif; margin-left: 1em; margin-right: 1em;"></span><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjWvH3lPXl2RPcjwuE4QySt1L_gS3JrTe8vFbpZh4g5STFirlER6krka5jeEuRVzhrbKgY4yTD_n3usUPBegSORmeyzoycBuq5JKP0I6ieniWBJcDpI7y3l9o5RtpkycPdYoEjQyMQOff8/s640/blogger-image--1839678543.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjWvH3lPXl2RPcjwuE4QySt1L_gS3JrTe8vFbpZh4g5STFirlER6krka5jeEuRVzhrbKgY4yTD_n3usUPBegSORmeyzoycBuq5JKP0I6ieniWBJcDpI7y3l9o5RtpkycPdYoEjQyMQOff8/s640/blogger-image--1839678543.jpg" /></a></div>
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<span style="font-family: Times, Times New Roman, serif;">This is character is Cisco. He kept me laughing! He's one of the many patient care assistants on the floor who are responsible for vitals and helping with daily personal tasks. We secretly called them "greenies" because they wear green of course!</span></div>
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<span style="font-family: Times, Times New Roman, serif; margin-left: 1em; margin-right: 1em;"></span><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKY-R3zH6aKt3NLoGMz8T_5Z5ut0uyHCEr-ubyxTTURaiHBxvXTdqeCsAeM0ndc3jC-5CpWoqfNKkT8CMi-ThhCLWN0ErDYEezljvOHYVVnZfPRzsU2NAyvxWQvi7-3I3reMkRBdxDNcA/s640/blogger-image--679130369.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKY-R3zH6aKt3NLoGMz8T_5Z5ut0uyHCEr-ubyxTTURaiHBxvXTdqeCsAeM0ndc3jC-5CpWoqfNKkT8CMi-ThhCLWN0ErDYEezljvOHYVVnZfPRzsU2NAyvxWQvi7-3I3reMkRBdxDNcA/s400/blogger-image--679130369.jpg" width="400" /></a></div>
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<span style="font-family: Times, Times New Roman, serif;">We are strong! This is Shawn, the physical therapist assistant who kicked my butt out of bed and kept me moving! We're showing off my "Mighty Shake" pose because I had to drink them everyday to help me gain weight. I don't think I've met anyone who loves his job more than this guy, who is part motivator, part educator, and simply an all-round fantabulous person.</span></div>
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<span style="font-family: Times, 'Times New Roman', serif; margin-left: 1em; margin-right: 1em;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfeaHeXiBn03jQmWvNF3Eqk4tmt0lowfWzeLN6-EuXsodbwZxPP2FcUpRqwh3yxUjbCYggyQ99R2unrZi4cmRJxa1k4T9e7CJbZFzhOMktHf0cIGdNSg5QXQx3f_CUB7sqyVy4MWPrMT8/s640/blogger-image-1932627332.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfeaHeXiBn03jQmWvNF3Eqk4tmt0lowfWzeLN6-EuXsodbwZxPP2FcUpRqwh3yxUjbCYggyQ99R2unrZi4cmRJxa1k4T9e7CJbZFzhOMktHf0cIGdNSg5QXQx3f_CUB7sqyVy4MWPrMT8/s640/blogger-image-1932627332.jpg" /></a></span></div>
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<span style="font-family: Times, Times New Roman, serif;">Nurses rock! I can't imagine doing their job because it seems exhausting! This is Cami, she is just one of the many nurses who took very good care of me with great compassion, friendliness, and professionalism!</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjxxvjqjpCR-87qAmGcprG_xU_NMyDiQ1VCAtTEdF0FNBEsnJe8Y66kn6hfdqMwh-64mbZESiaM8zztfKoZmqtEi98hzZCRiydP4U7Lupkc2t_8jQI03HbFd3x7zy2twNY-9dewiYJNmOA/s640/blogger-image--365426846.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Times, Times New Roman, serif;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjxxvjqjpCR-87qAmGcprG_xU_NMyDiQ1VCAtTEdF0FNBEsnJe8Y66kn6hfdqMwh-64mbZESiaM8zztfKoZmqtEi98hzZCRiydP4U7Lupkc2t_8jQI03HbFd3x7zy2twNY-9dewiYJNmOA/s640/blogger-image--365426846.jpg" /></span></a></div>
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<span style="font-family: Times, Times New Roman, serif;"> Nurses in action!</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0ozMEvJTBiOY_cYRG9BPjR5AUOMwvhnhaKYAk-CkDqI_NZapyvDoOyoKX7kLBizyg0tMMYblGYljBmBxe0HaVq8KYwzeUC2AlIjxpnYAJuw6eNUTD_fcMT2mrH_PsNkAIJNJyC2NbERc/s640/blogger-image-1747842020.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Times, Times New Roman, serif;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0ozMEvJTBiOY_cYRG9BPjR5AUOMwvhnhaKYAk-CkDqI_NZapyvDoOyoKX7kLBizyg0tMMYblGYljBmBxe0HaVq8KYwzeUC2AlIjxpnYAJuw6eNUTD_fcMT2mrH_PsNkAIJNJyC2NbERc/s640/blogger-image-1747842020.jpg" /></span></a></div>
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<span style="font-family: Times, Times New Roman, serif;">My room number, which must be lucky as my transplant date was 9/24! Hmmm . . . maybe I should play the lottery. On second thought, why push my luck. I've have already won with the gift of new lungs, and the pleasure to be a patient for the J82 crew. Bless them all!</span></div>
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Suehttp://www.blogger.com/profile/07652516877464261484noreply@blogger.com0tag:blogger.com,1999:blog-4930549884689421616.post-71485816521623050592014-10-04T14:26:00.001-05:002014-10-19T03:58:08.741-05:00Special Edition: My Lung Transplant Journey, October 4, 2014 - Slow but
Steady<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
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<tr><td class="tr-caption" style="text-align: center;">Mr. Scarecrow greets everyone in my room with a friendly wave!</td></tr>
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<span style="font-family: Times, Times New Roman, serif;">It's been ten days post transplant and I've been moving right along in the recovery process with a huge milestone today by walking two times around the hall without ANY supplemental oxygen!</span><br>
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<span style="font-family: Times, Times New Roman, serif;">Wow!</span></div>
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<span style="font-family: Times, Times New Roman, serif;">For someone who recently could not walk from the kitchen to the living room without stopping to rest, this is a tremendous accomplishment! Once the pain and discomfort of surgery subsides, and I lose two chest tubes and a heart monitor, I'll be on my way, keeping in mind that slow but steady wins the race.</span></div>
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<span style="font-family: Times, Times New Roman, serif;">Perhaps I'm making this part of the recovery process sound easy! Let me assure you, it's not a walk in the park or the hall in my case. Let me start with pain. Yep, there's pain. Back pain, chest pain, arm pain and more. It's like someone is tying a tight belt around my chest often making sleeping, reaching, stretching and moving my upper torso difficult. Pain relievers help some as does exercise.</span></div>
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<span style="font-family: Times, Times New Roman, serif;">Next up are the side effects of all the new medicines circulating my body, but essential for success of the transplant and my overall good health. Some side effects include excessive sweating, tummy troubles, trouble sleeping, weird dreams, and a diminished sense of taste. The list of meds is extensive and I'm learning all about them and the dosing schedule. Most of these medicines I will take for the rest of my life.</span></div>
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<span style="font-family: Times, Times New Roman, serif;">Then, there are visits from many doctors, thoracic surgeons, respiratory therapists, technicians, and <span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">phlebotomists. They are all working together to ensure a successful transplant and recovery. I've been examined, x-rayed, ultra sounded, and stuck with so many needles I've lost count.</span><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"> I've </span>been poked to check blood, to check insulin, to administer medicine, and to insert IVs. My arms are covered with black and blue marks and riddled with holes. My sister joked that we should shine a light behind me to see if I twinkle in the dark. </span></div>
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<span style="font-family: Times, Times New Roman, serif;">Finally, there are many mixed emotions that overcome me when I think about my donor. This person made the conscious choice to give me and others a second chance at life by becoming an organ donor. While the donor family grieves for the loss of their loved one, my family and friends rejoice and dream about the future! </span></div>
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<span style="font-family: Times, Times New Roman, serif;">Above all, I marvel at the power of prayer, for my journey would not be possible without it!</span></div>
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Suehttp://www.blogger.com/profile/07652516877464261484noreply@blogger.com3tag:blogger.com,1999:blog-4930549884689421616.post-37684140356702627532014-10-01T13:13:00.001-05:002014-10-19T03:57:14.032-05:00Special Edition: My Lung Transplant Journey, October 1, 2014 - Moving
on to a Brand New Me<span style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; line-height: 22px; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">So you want to know what it's like to receive and recover from a double lung transplant, do you?</span><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; line-height: 22px; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392);">I know a person who can fill you in.</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; line-height: 22px; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392);">Everyone meet Sue 2.0. ~ the new and improved version for 2014 and beyond! Her best feature yet, she can breathe!</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; line-height: 22px; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392);">In case you didn't hear the news, I received my miraculous gift of life last Wednesday, September 24. I'm celebrating one week post transplant today!</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; line-height: 22px; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392);"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; line-height: 22px; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392);">Here's how it went down last week:</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; line-height: 22px; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392);"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; line-height: 22px; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392);">My call came in my hospital room at about 11:30 am Tuesday, September 23, (my dad's birthday) where we were informed that they found a good match for me. We were excited and filled with anticipation, once again waiting for further information from the transplant team such as when I would go to ICU to be prepped for surgery, but most importantly, would the lungs be viable? Hours ticked by while my sister Deanne and I waited for our next step. We kept busy by packing my stuff and taking down cards and decorations Deanne had been putting up earlier in the morning. Meanwhile, back at home, Tim left work to catch a flight so he could be with me here before surgery. He didn't even have a bag packed! He made it here between 5 and 6 pm, and shortly after, they took me to ICU for prep. Keep in mind, we still did not know if the lungs would be good about 6 hours after the the initial call! As it turns out, the donor was donating multiple organs and tissue so the retrieval process was prolonged as each organ is removed by different teams be it lungs, heart, etc.</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; line-height: 22px; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392);"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; line-height: 22px; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392);">More hours ticked by as we waited overnight in the ICU. All preliminary prep work was completed because when it's time to go to the OR, they go! Finally, at about 8:30 AM, we learned the lungs were good! All our prayers, and the prayers of many, many people around the world had been answered! Tim and Deanne walked along as they quickly transported me, but only to the OR elevator - no family beyond that point. It was comforting to have them there by my side as it it's quite scary when those doors close, for me on one side and them on the other.</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; line-height: 22px; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392);"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; line-height: 22px; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392);">After arriving in the OR, I was greeted by a huge team of people in blue scrubs, each doing their job to get everything ready for the transplant. The last thing I remember from this point is the anesthesiologist asking me if I was ready to be sleepy. Out like a light for old Sue! At about 2:30 pm, the surgeon met with Tim and Deanne to let them know the positive news. Surgery was free from complications and the lungs were working well. Again, God answered all our prayers!</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; line-height: 22px; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392);"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; line-height: 22px; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392);">Sedated and intubated with a breathing tube, I returned to the ICU for a really long nap until mid Thursday morning (9/25) They woke me up and removed the breathing tube without problems. I had a very sore throat and could not talk, but alive and awake, and ready to slowly move on to the next step in my journey - recovery and healing!</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; line-height: 22px; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392);"><br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXnWODSLZptDIBKV-mTHdI25uspRINzKL-XPPMDirLTpOV0vZy4RxY3VwlDjysUZ9EXnQS9zoA1QvdzJbr1xB1eDOhLkWPP7URiRleNK67Z13ivs6Us-nA5vgHRVt4Ug_-EQX5ldi1V2U/s640/blogger-image-1101040092.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXnWODSLZptDIBKV-mTHdI25uspRINzKL-XPPMDirLTpOV0vZy4RxY3VwlDjysUZ9EXnQS9zoA1QvdzJbr1xB1eDOhLkWPP7URiRleNK67Z13ivs6Us-nA5vgHRVt4Ug_-EQX5ldi1V2U/s640/blogger-image-1101040092.jpg"></a></div></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; line-height: 22px; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392);"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; line-height: 22px; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392);"> I'm on my way to a brand new Sue!</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; line-height: 22px; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392);"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; line-height: 22px; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392);">*More to come soon! Stay tuned . . .</div>Suehttp://www.blogger.com/profile/07652516877464261484noreply@blogger.com0tag:blogger.com,1999:blog-4930549884689421616.post-29288375642890567502014-09-15T18:37:00.001-05:002014-10-19T03:54:59.319-05:00Special Edition: My Lung Transplant Jouney, September 16, 2014 - Oh,
the Places I'll Go!<div class="separator" style="clear: both;">
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<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><b>Today is your day!<br>Your mountain is waiting,<br>So... get on your way!” </b></span></div>
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<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><b>- Dr. Seuss, <i>Oh, The Places You'll Go!</i></b></span></div>
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When I get to the other side of this mountain, and hopefully fully recover from a successful lung transplant, I plan to do and see things I haven't done in a long time like climb up stairs with ease, jump in the shower, run to the store, ride a bicycle, and complete daily activities around the house without dragging an oxygen hose behind me or stopping to rest every few minutes.</div>
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But that's not all. I also have bigger plans and dreams for post-transplant - a bucket list if you will. Many items on my list include travel, something I haven't done in quite some time especially by plane. The list also includes new things I would like to see, learn, or do in the future. In upcoming LeMOMade posts, I will share my dreams with you starting today with places I'd love to visit with my new lungs.</div>
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So in random order, here's some top places on my travel wish list:</div>
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* New York to tour the city, see a Broadway show, and watch the Macy's Thanksging Day Parade</div>
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* Alaska to see the aurora borealis, polar bears, icebergs, and other beautiful sites</div>
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* Road Trip across the United States in a cool convertible to see quirky tourist attractions and eat at diners and other local joints</div>
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* Return to Maui, Hawaii where Tim and I honeymooned, one of our best trips ever</div>
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* Slovenia and Slovakia to see where my ancestors lived, worked, and played</div>
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<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">* London and Paris - to visit my sis, and to see all sorts of touristy sites like Big Ben, The Tower of </span><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">London, The Louvre, and the Eiffel Tower</span></div>
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<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">What's on your travel wish list?</span></div><div class="separator" style="clear: both;"><br></div>Suehttp://www.blogger.com/profile/07652516877464261484noreply@blogger.com3tag:blogger.com,1999:blog-4930549884689421616.post-32025525979578600352014-09-09T18:17:00.001-05:002014-09-10T20:07:19.108-05:00Special Edition: My Lung Transplant Journey, September 9, 2014 -
Impatient Inpatient<div class="separator" style="clear: both;"><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">15 months, 16 days and counting . . .</span></div><div>That's how long we've been waiting for my new set of lungs!</div><div><br></div><div>The wait now continues with an unexpected twist. I'm waiting at the Cleveland Clinic on the lung transplant floor because my condition has seriously declined and my supplemental oxygen needs are too great to be managed at home. The wait may be a few days, several weeks, or even months, but the ultimate goal for the transplant team is to keep my condition stable, build my strength, and boost my weight during the wait for the perfect match.</div><div><br></div><div>And that there's the rub, finding the perfect match. Although my lung allocation score is quite high, in other words I'm high on the list, it really doesn't matter if they cannot find the best match for me. The single most difficult problem with finding me the best match involves a complicated problem known as high antibodies. It's difficult to explain because although I'm a very educated patient, I'm not a doctor or scientist. The transplant team attempted to address this problem by giving me monthly IVIG infusions for the past six months in an effort to desensitize my body to the antibodies leading to the goal of finding a perfect match. However, as of today, they do not know if this protocol is working, nor if they plan to continue it until they obtain more information from recent test results. <span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">Without the best match possible, chronic rejection of the new lungs is likely, and with limited lungs available for donation across the country, lungs that are not not suitable for me could give new life to another person on the waiting list.</span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div>Yes, that's heavy stuff. That's what we're up against. It's been a very difficult journey for me (and the family). There's been lots of tears, frustration, anxiety and more along this road, especially during the last three months or so as my health declined, making it harder and harder to breathe even while doing the simplest of daily activities. I certainly will not be described as one of those people who "never complained about their illness" or questioned the fairness of it all, because I have many, many times over. I'm human.</div><div><br></div><div>My hope that with this huge bump in the road, I can be brave and patient, and have faith that God will bless me with new lungs very, very soon.</div><div><br></div><div>I will not go down without a fight!</div><br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhy8CzfFv_-ugdGS85snAzIv5zjhIJKi2GcXkty-bkmZjfLBBJNZtlYF6pbcsEHYWUU2UrWtP3BqR7Elop79_D0lW5fFXbNO2RaO8KLAwu4Uiyjgd9jkF0ZuiMEj2erQnDMF2QyUKJ3D44/s640/blogger-image-1172692597.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhy8CzfFv_-ugdGS85snAzIv5zjhIJKi2GcXkty-bkmZjfLBBJNZtlYF6pbcsEHYWUU2UrWtP3BqR7Elop79_D0lW5fFXbNO2RaO8KLAwu4Uiyjgd9jkF0ZuiMEj2erQnDMF2QyUKJ3D44/s640/blogger-image-1172692597.jpg"></a></div>Suehttp://www.blogger.com/profile/07652516877464261484noreply@blogger.com1tag:blogger.com,1999:blog-4930549884689421616.post-61633948355853826772014-04-23T12:00:00.000-05:002014-04-23T12:01:33.187-05:00Special Edition: My Lung Transplant Journey, April 23, 2014 - Quote of the WeekLucky me, a handsome guy I know has this to say about organ donation:<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVTwEEzu9bbNfYFSrfLVYC_gRXyxSNCRhrt0LSBTLJ-J0FjgWkEwmksw2GrMUBYFB1s9c2oybNwCmrB7duxzRMTHHGhdHSt2246zcjYM9VgM8emser01y0Fn8QR8TFDr0ZpbAfOL1Gfgw/s1600/GeorgeClooneyquote.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVTwEEzu9bbNfYFSrfLVYC_gRXyxSNCRhrt0LSBTLJ-J0FjgWkEwmksw2GrMUBYFB1s9c2oybNwCmrB7duxzRMTHHGhdHSt2246zcjYM9VgM8emser01y0Fn8QR8TFDr0ZpbAfOL1Gfgw/s1600/GeorgeClooneyquote.jpg" height="247" width="320" /></a></div>
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Simple and to the point! April is Donate Life month.</div>
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Please register to be an organ donor!</div>
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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.</div>
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Suehttp://www.blogger.com/profile/07652516877464261484noreply@blogger.com0tag:blogger.com,1999:blog-4930549884689421616.post-27589982600211102942014-02-27T15:00:00.000-06:002014-02-27T19:25:41.199-06:00Special Edition: My Lung Transplant Journey, February 27, 2014 - The Waiting List Post 4-6Hello 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!<br />
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Post 4, Weary<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh93E_ilqeL-S8rQjvRod9jiXe518xzob30KBZs-tPaLl0LXUmMn0_yYnUYBgW9LJIwk-yNjJulDBqkwby1fDMZvpds9cwmahyX2xsRJ56179EuIzfPCEUwPVedcDp7kcoE7diWyQK20cw/s1600/wlleary.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh93E_ilqeL-S8rQjvRod9jiXe518xzob30KBZs-tPaLl0LXUmMn0_yYnUYBgW9LJIwk-yNjJulDBqkwby1fDMZvpds9cwmahyX2xsRJ56179EuIzfPCEUwPVedcDp7kcoE7diWyQK20cw/s320/wlleary.jpg" height="320" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The Waiting List, 2/25/2014, evening, Instagram</td></tr>
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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!</div>
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Post 5, Hopefully Devoted<br />
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<tr><td class="tr-caption" style="text-align: center;">The Waiting List, 2/26/2014</td></tr>
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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.</div>
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Post 6, Tough Cookies</div>
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<tr><td class="tr-caption">The Waiting List, 2/27/2014</td></tr>
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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.</div>
<br />Suehttp://www.blogger.com/profile/07652516877464261484noreply@blogger.com0tag:blogger.com,1999:blog-4930549884689421616.post-4888039967881298562014-02-25T12:00:00.000-06:002014-02-25T19:45:18.804-06:00Special Edition: My Lung Transplant Journey - The Waiting List Posts 2 and 3Dear 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.<br />
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Post 2, The Bag<br />
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<tr><td class="tr-caption" style="text-align: center;">The Waiting List, 2/24/2014, evening, Instagram</td></tr>
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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.<br />
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Post 3, Oxygen<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4iISFW8f2kv7kd0IhBksmgBsBlPrlpWM9gvfmll7v-ACtXj5TUFc-4eUp0rp7Gcw6EtSAEbZW6YWn5JOAAT8YKoQj1jyqOtp8O4y8ulLaDlbB_ypNe3n0IVaRLQptzXxDCN61TQBht7Y/s1600/wl22514oxygen.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4iISFW8f2kv7kd0IhBksmgBsBlPrlpWM9gvfmll7v-ACtXj5TUFc-4eUp0rp7Gcw6EtSAEbZW6YWn5JOAAT8YKoQj1jyqOtp8O4y8ulLaDlbB_ypNe3n0IVaRLQptzXxDCN61TQBht7Y/s1600/wl22514oxygen.jpg" height="320" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The Waiting List, 2/25/2014</td></tr>
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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.<br />
<br />Suehttp://www.blogger.com/profile/07652516877464261484noreply@blogger.com0tag:blogger.com,1999:blog-4930549884689421616.post-90380280266618343362014-02-24T11:30:00.000-06:002014-02-24T12:12:13.357-06:00Special Edition: My Lung Transplant Journey, February 24, 2014 - The Waiting List Project Post 1Today 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.<br />
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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 <span class="text_exposed_show">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. <a class="_58cn" data-ft="{"tn":"*N","type":104}" href="https://www.facebook.com/hashtag/thewaitinglist">#thewaitinglist</a> <a class="_58cn" data-ft="{"tn":"*N","type":104}" href="https://www.facebook.com/hashtag/whatareyouwaitingfor">#whatareyouwaitingfor</a> <a class="_58cn" data-ft="{"tn":"*N","type":104}" href="https://www.facebook.com/hashtag/organdonation">#organdonation</a> <a class="_58cn" data-ft="{"tn":"*N","type":104}" href="https://www.facebook.com/hashtag/donatelife">#donatelife</a> <a class="_58cn" data-ft="{"tn":"*N","type":104}" href="https://www.facebook.com/hashtag/lungtransplant">#lungtransplant</a> <a class="_58cn" data-ft="{"tn":"*N","type":104}" href="https://www.facebook.com/hashtag/scleroderma">#scleroderma</a> <a class="_58cn" data-ft="{"tn":"*N","type":104}" href="https://www.facebook.com/hashtag/pulmonaryfibrosis">#pulmonaryfibrosis</a> <a class="_58cn" data-ft="{"tn":"*N","type":104}" href="https://www.facebook.com/hashtag/pulmonaryhypertension">#pulmonaryhypertension</a></span></div>
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<br />Suehttp://www.blogger.com/profile/07652516877464261484noreply@blogger.com0tag:blogger.com,1999:blog-4930549884689421616.post-68527167223024029042014-02-21T07:00:00.000-06:002014-04-23T11:55:19.266-05:00Special Edition: My Lung Transplant Journey February, 21, 2014 - The Waiting List<div class="separator" style="clear: both;">
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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.<br />
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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.<br />
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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 <a href="https://www.facebook.com/endthewaitinglist">Facebook</a>, <a href="http://thewaitinglist.tumblr.com/#/#">Tumblr</a>, 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!Suehttp://www.blogger.com/profile/07652516877464261484noreply@blogger.com0tag:blogger.com,1999:blog-4930549884689421616.post-72182041683760944552013-11-24T14:49:00.001-06:002014-02-20T14:20:56.168-06:00Special Edition: My Lung Transplant Journey November 24, 2013 - In the Que<div class="separator" style="clear: both;">
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I've hit the 6 month mark on the waiting list for a double lung transplant. That's . . .</div>
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<li style="border-image: none; border: 0px currentColor; box-sizing: border-box; margin: 0px 0px 5px 25px; padding: 0px 0px 0px 4px; vertical-align: baseline;"><span style="background-color: rgba(255, 255, 255, 0);">15,897,600 seconds</span></li>
<li style="border-image: none; border: 0px currentColor; box-sizing: border-box; margin: 0px 0px 5px 25px; padding: 0px 0px 0px 4px; vertical-align: baseline;"><span style="background-color: rgba(255, 255, 255, 0);">264,960 minutes</span></li>
<li style="border-image: none; border: 0px currentColor; box-sizing: border-box; margin: 0px 0px 5px 25px; padding: 0px 0px 0px 4px; vertical-align: baseline;"><span style="background-color: rgba(255, 255, 255, 0);">4,416 hours</span></li>
<li style="border-image: none; border: 0px currentColor; box-sizing: border-box; margin: 0px 0px 5px 25px; padding: 0px 0px 0px 4px; vertical-align: baseline;"><span style="background-color: rgba(255, 255, 255, 0);">184 days</span></li>
<li style="border-image: none; border: 0px currentColor; box-sizing: border-box; margin: 0px 0px 5px 25px; padding: 0px 0px 0px 4px; vertical-align: baseline;"><span style="background-color: rgba(255, 255, 255, 0);">26 weeks (rounded down)</span></li>
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During this time, I've discovered many things about myself. Here are just ten:</div>
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1. I'm not very good at waiting.</div>
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2. I still don't like using supplemental oxygen although it's necessary to keep me alive and kicking.</div>
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3. Eating a lot to gain weight is not as easy as it sounds.</div>
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4. I can spend hours each day doing a whole lot of nothing.</div>
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5. I cry over many things, but if it's spilled milk or messy things, I usually swear.</div>
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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.</div>
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7. At times, these same children drive me crazy!</div>
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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.</div>
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9. He drives me crazy too!</div>
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10. Pajamas or yoga pants are the new black.</div>
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Suehttp://www.blogger.com/profile/07652516877464261484noreply@blogger.com0tag:blogger.com,1999:blog-4930549884689421616.post-63386174271273155822013-10-09T14:00:00.000-05:002013-10-09T16:22:36.935-05:00Special 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 <a href="http://www.sharecare.com/health/lung-transplant/what-is-the-lung-allocation-score">LAS</a>? 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:<br />
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<iframe allowfullscreen="" frameborder="0" height="315" src="//www.youtube.com/embed/HuKx2a5HkIM?rel=0" width="420"></iframe><br />
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Just in case you skipped the video, here is a chart that explains the transplant process: <br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0IgerulpszuUfK3tc_pzz_cic0v_-FX0GpSJVH9zuqhooAowrup3TTWKVB2a6CWJdGDLnNbcDg8IXvGojebWANAUf7aiVP_DtIqd9VcpWIosAFN7HEl2FqkpLKw-6RcFh4FoTGutEUC0/s1600/transplant+chart.GIF" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0IgerulpszuUfK3tc_pzz_cic0v_-FX0GpSJVH9zuqhooAowrup3TTWKVB2a6CWJdGDLnNbcDg8IXvGojebWANAUf7aiVP_DtIqd9VcpWIosAFN7HEl2FqkpLKw-6RcFh4FoTGutEUC0/s1600/transplant+chart.GIF" /></a></div>
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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. <br />
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<tr><td class="tr-caption" style="text-align: center;"><em>Joan, Roseann, Rick and little ol' me at the summer soiree in August.</em></td></tr>
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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: <br />
<br /><table cellspacing="0" cellpadding="0" border="0" bgcolor="#ffffff"><tr><td><a href="http://www.smilebox.com/play/4d7a67784e6a67354f54673d0d0a&blogview=true&campaign=blog_playback_link&partner=smilebox" target="_blank"><img width="420" height="330" alt="Click to play this Smilebox invite" src="http://www.smilebox.com/snap/4d7a67784e6a67354f54673d0d0a.jpg" style="border: medium none ;"/></a></td></tr><tr><td><a href="http://www.smilebox.com?partner=smilebox&campaign=blog_snapshot" target="_blank"><img width="420" height="46" alt="Create your own invite - Powered by Smilebox" src="http://www.smilebox.com/globalImages/blogInstructions/blogLogoSmilebox.gif" style="border: medium none ;"/></a></td></tr><tr><td align="center"><a href="http://www.smilebox.com/?campaign=blog_playback_link&partner=smilebox" target="_blank">Invite card</a> customized with Smilebox</td></tr></table><br />
You also can check out the <a href="https://www.facebook.com/events/1422002804682549/?ref_dashboard_filter=upcoming">event page </a>on Facebook
<em></em> 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!Suehttp://www.blogger.com/profile/07652516877464261484noreply@blogger.com2tag:blogger.com,1999:blog-4930549884689421616.post-88218643191644606472013-07-10T20:54:00.001-05:002013-10-09T13:09:25.980-05:00Special Edition: My Lung Transplant Journey July 10, 2013 - Life on HoldI 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.<br />
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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!<br />
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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!<br />
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So that leads me back to our fundraising campaign. I created this little promo to spread the word:<br />
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<table cellspacing="0" cellpadding="0" border="0" bgcolor="#ffffff"><tr><td><a href="http://smilebox.com/play/4d7a63794e7a67334d6a493d0d0a&blogview=true&campaign=blog_playback_link&partner=smilebox" target="_blank"><img width="420" height="330" alt="Click to play this Smilebox newsletter" src="http://smilebox.com/snap/4d7a63794e7a67334d6a493d0d0a.jpg" style="border: medium none ;"/></a></td></tr><tr><td><a href="http://www.smilebox.com?partner=smilebox&campaign=blog_snapshot" target="_blank"><img width="420" height="46" alt="Create your own newsletter - Powered by Smilebox" src="http://www.smilebox.com/globalImages/blogInstructions/blogLogoSmilebox.gif" style="border: medium none ;"/></a></td></tr><tr><td align="center">A free newsletter design by Smilebox</td></tr></table>
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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 . . . <br />
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<iframe allowfullscreen="" frameborder="0" height="259" src="//www.youtube-nocookie.com/embed/URR_4i5gIFU?rel=0" width="460"></iframe><br />
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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, <a href="https://www.facebook.com/U4SueNewLungsNewLife?ref=hl">U4Sue New Lungs New Life </a>. Thank you for your support!Suehttp://www.blogger.com/profile/07652516877464261484noreply@blogger.com0tag:blogger.com,1999:blog-4930549884689421616.post-67075149120797677412013-06-13T15:15:00.000-05:002013-06-13T15:33:02.537-05:00Special Edition: My Lung Transplant Journey June 13, 2013 - A Sign from Above<em></em><em></em><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiewBOpgO-rUgKaFcxxoHNcMA0pNKfMvX9uqXoT_DtNd3Gv1QJmmoSN82V2ari0B_Q8H_GrsgFoC8Vq9m3tOlmaOLl78YEE6dhs_cVf51ETaKwsuvQAijAeOS2sNdVe4maOeOqjy67f-N0/s1600/rose2.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><em><img border="0" height="198" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiewBOpgO-rUgKaFcxxoHNcMA0pNKfMvX9uqXoT_DtNd3Gv1QJmmoSN82V2ari0B_Q8H_GrsgFoC8Vq9m3tOlmaOLl78YEE6dhs_cVf51ETaKwsuvQAijAeOS2sNdVe4maOeOqjy67f-N0/s200/rose2.JPG" width="200" /></em></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><em>My blooming red roses</em></td></tr>
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<em></em>The power of prayer. It's amazing!<br />
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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!<br />
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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."<br />
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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 <a href="http://www.littleflower.org/abouttherese/learn/index.asp" target="_blank">St. Therese of Lisieux</a>, 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!<br />
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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.<br />
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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.<br />
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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!<br />
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<tr><td style="text-align: center;"><em><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSYFFrzWi82fqhfM1tf-xwLruEHsY5geAnBu3QA2eWJTmdZOa7N1N0LVx2emmN4V0vezMjsYXx_Kx1lN_3HuFxBAmEj4jAWwv4LT3woyiW7SwXqNrE0Ks1PlICWWk-2YwIfX4OpdMWOs0/s400/rose.JPG" style="margin-left: auto; margin-right: auto;" width="260" /></em></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><em>Domingo's rose drawing and St. Therese keepsakes</em></td></tr>
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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!<br />
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If you would like to say a prayer to St. Therese, here is one you can use:</div>
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<span style="color: purple;">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.</span></div>
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<span style="color: purple;">O Little Flower of Jesus, ask God today to grant the favors I now place with confidence in your hands .... (Mention specific requests).</span></div>
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<span style="color: purple;">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.</span></div>
Suehttp://www.blogger.com/profile/07652516877464261484noreply@blogger.com2tag:blogger.com,1999:blog-4930549884689421616.post-28292848108782169682013-06-11T06:00:00.000-05:002013-06-12T15:54:51.324-05:00Special Edition: My Lung Transplant Journey June 11, 2013Insert dramatic world news music here . . . Ya know, because it's a "Special Edition!"<br />
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Once again it's been quite some time since I posted on leMOMade - busy, busy, busy and sick, sick, sick!</div>
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Ugh!</div>
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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!</div>
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Nope!</div>
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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!</div>
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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.</div>
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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!</div>
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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.</div>
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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.</div>
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Phew, that's a lot of info! I hope y'all stuck with me so far!</div>
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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<a href="http://www.blogger.com/goog_873054905"> </a><span style="-webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969); font-family: Helvetica; font-size: 15px; line-height: 19px; white-space: nowrap;"><a href="http://supportplanner.caringbridge.org/">http://supportplanner.caringbridge.org/</a> </span>and search for U4Sue New Lungs New Life. You will need to complete a short registration process to access the planner.</div>
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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!</div>
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Sue</div>
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Suehttp://www.blogger.com/profile/07652516877464261484noreply@blogger.com4tag:blogger.com,1999:blog-4930549884689421616.post-19092892771109742262013-02-27T14:00:00.000-06:002013-02-27T14:03:00.788-06:00Quote of the Week: Smile!<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghr63BoBas7YAa7VNb8CEr1M2VQgV2pm8RyjPhb0QHruqZfkhnRfECib77wOHwa-z2Pv61DAg7yrESUIWG4URQIRtBksNhsjZFUfXUZUc3qwbtJZ-7DIp74GVzreBOm6rv34zCtHnIBVU/s1600/DSC01943.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghr63BoBas7YAa7VNb8CEr1M2VQgV2pm8RyjPhb0QHruqZfkhnRfECib77wOHwa-z2Pv61DAg7yrESUIWG4URQIRtBksNhsjZFUfXUZUc3qwbtJZ-7DIp74GVzreBOm6rv34zCtHnIBVU/s200/DSC01943.JPG" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Pure joy!</td></tr>
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<blockquote>
<span style="color: #674ea7;">“</span><span style="color: #351c75;">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.” <br />
~ <i>Mother Teresa</i></span><br />
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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. <br />
Just do it!
Suehttp://www.blogger.com/profile/07652516877464261484noreply@blogger.com0tag:blogger.com,1999:blog-4930549884689421616.post-39054770601099511702013-02-13T07:00:00.000-06:002013-02-13T07:00:07.040-06:00Catching up, staying in, missing out<div class="separator" style="clear: both; text-align: center;">
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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.<br />
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So once again, we wait.<br />
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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!<br />
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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.<br />
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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! <br />
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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.<br />
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For now, we seek your loving thoughts and prayers as this difficult journey continues.<br />
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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
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Love and God's blessings, Sue <br />
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ps. If you are not up to date on my story, please take some time to read the November post, <a href="http://lemomade.blogspot.com/2012/11/waiting.html">Waiting</a>, or <a href="http://lemomade.blogspot.com/p/my-story.html">My Story</a> found on the right sidebar. Thank you.Suehttp://www.blogger.com/profile/07652516877464261484noreply@blogger.com3tag:blogger.com,1999:blog-4930549884689421616.post-56371189307724795272012-11-14T10:00:00.000-06:002012-11-14T10:20:08.722-06:00Waiting . . .is the hardest part.<br />
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As a person living with a chronic illness, I spend a lot of time waiting: <br />
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Waiting in the doctor's office <br />
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Waiting for prescription refills, test results, or insurance approvals <br />
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Waiting for pain to go away <br />
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Waiting for promising new medical treatments or research <br />
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Waiting for good news . . . or bad <br />
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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. <br />
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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, <a href="http://suzsjourney.blogspot.com/2010/08/doing-limbo.html">In Sickness and in Health</a>. <br />
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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 . . .<br />
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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 . . . <br />
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The waiting will begin again as we do not expect to have any answers during next week's visit. But we will have questions: <br />
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Will I be accepted as a transplant candidate? If so, when would I be listed? If not, what happens next? <br />
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The waiting is the hardest part. <br />
Every day you get one more yard. <br />
You take it on faith, you take it to the heart. <br />
The waiting is the hardest part <br />
- Tom Petty
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Suehttp://www.blogger.com/profile/07652516877464261484noreply@blogger.com10