Wednesday, August 12, 2015

Special Edition: My Lung Transplant Journey, August 12, 2015

My card to my donor's family with letter inside!
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!

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.

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!

Here are some photo highlights from the last four months . . .

April


May
June
 
July
And this just happened last week - broken wrist :(
Never a dull moment!
Good Times!

Wednesday, April 8, 2015

Hope into Action: A Story of International Adoption ~ a guest post

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!

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.





 
Q: After having three children, why did you choose adoption?
A: 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.

Q: Why international adoption?
A: 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.

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.

Q: How did family and friends react to your decision to adopt? What did you say to naysayers if there were any?
A: 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.

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.

Q: Can you describe the adoption process?
A: 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.

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 Children’s House International. You can also view the Asia Waiting Children listings while you are there.

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, Ciochon Family Adoption From China.

Q: What adoption challenges did you experience or are you experiencing?
A: 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.

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?

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.

Challenges? Yes; Worth it? ABSOLUTELY!


Tim and Michelle with their daughter in Ethiopia
Q: Describe your feelings/emotions when you first met your daughter? How did it feel to bring her home?
A: 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.

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.

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!!

She's home! Her brothers greeted us at the airport.
 Q: How do you or will you teach your children about their home country?
A: 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.

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.

Q: Describe a typical day in the life of a working mom with 4 soon to be 5 children?
A: 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.

Q: Do you have any words of advice for prospective adoptive parents?
A: 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!

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 Ciochon Family Adoption From China or for more information and updates, join their Facebook group, Operation "Bjorn" Adopting from China.  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.

Monday, March 23, 2015

Special Edition: My Lung Transplant Journey, March 24, 2015 - Six Month Lungiversary, sweeeet!


                                  

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 Christmas, but we also reveled in the simple joys of life like good food, a clean house, or time together as a family.

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. 

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!

All sweet things, just like my life with new lungs!

Tuesday, November 11, 2014

Special Edition: My Lung Transplant Journey, November 11, 2014 - Missing Home



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 . . .

I miss my kids (even though they just came for a short visit).
I miss my hubby (even though he was here for over a week taking care of me).
I miss my parents.
I miss my bed and my Lazy Boy recliner.
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!
I miss my master bath where the hot and cold water works just right. Not so much here.
I miss my own bathrooms in general.
I miss my thermostat that can maintain a proper temperature, rather than really, really hot or freezing cold. Again, not so much here.
I miss looking out my front and back windows to see what's going on in the 'hood or to check the weather.
I miss many good things about my house like the 3 things I wrote about once upon a time on my Good Things blog (that hasn't been updated in forever!)

I knew that this recovery period away from home would be necessary and just temporary, but 
I'm feeling like Winnie the Pooh when he was stuck in rabbit's hole!


I'm trying to make the best of it, but the bottom line is I'm homesick!



But this too shall pass . . .





Sunday, November 2, 2014

Special Edition: My Lung Transplant Journey, November 2, 2014 - {Dis}Comfort and Joy!

November is here, and it's nearly 6 weeks out from my surgery. Wow!
 
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 . . . Yes, there is always a "but."
 
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! 
 

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.

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.

A quote from one of my very favorite movies "Steel Magnolias" comes to mind when I think about the worthiness of this journey:


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.

Wednesday, October 29, 2014

Special Edition: My Lung Transplant Jouney, October 29, 2014 - Oh My GI!

It took the tech 3 tries to get the PH monitor in!
GI as in gastrointestinal, or as I like to say "tummy troubles" because words for problems with the digestive track gross me out - eeewww!

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.

My GI issues include GERD
(gastroesophageal reflux disease), and a lack of motility in my esophagus. These problems are both complications of Scleroderma, which was not cured by the lung transplant by the way, but more about that in a future post.

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!
 

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 esophageal manometry test 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!

The PH monitoring study 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 gastric emptying study 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!

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!

Happy Halloween!

Wednesday, October 22, 2014

Special Edition: My Lung Transplant Journey, October 22, 2014 - It's You, Not Me - The Mask!

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!



Germs!!!

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!

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:

- The mask fogs up my glasses making it difficult to see especially outdoors.
- The standard "procedure" masks are not that attractive. (But a little browsing on Etsy turned up some super cute masks to remedy this problem)
- Most of all, I simply do not like people staring at me and, as of late, steering clear of me!

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!"

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!






Wednesday, October 15, 2014

Special Edition: My Lung Transplant Journey, October 15, 2014 - Kudos to the Care Crew

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!

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!

Here are a few photos that represent just part of the care team.


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!


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.


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!



 Nurses in action!



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!

Saturday, October 4, 2014

Special Edition: My Lung Transplant Journey, October 4, 2014 - Slow but Steady

Mr. Scarecrow greets everyone in my room with a friendly wave!

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!

Wow!

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.

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.

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.

Then, there are visits from many doctors, thoracic surgeons, respiratory therapists, technicians, and 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. I've 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. 

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! 

Above all, I marvel at the power of prayer, for my journey would not be possible without it!

Then they cried to the LORD in their trouble, and he delivered them from their distress. He made the storm be still, and the waves of the sea were hushed. Then they were glad that the waters were quiet, and he brought them to their desired haven - Psalm 107:28-30



Wednesday, October 1, 2014

Special Edition: My Lung Transplant Journey, October 1, 2014 - Moving on to a Brand New Me

So you want to know what it's like to receive and recover from a double lung transplant, do you?
I know a person who can fill you in.
Everyone meet Sue 2.0. ~ the new and improved version for 2014 and beyond! Her best feature yet, she can breathe!
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!

Here's how it went down last week:

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.

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.

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!

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!


  I'm on my way to a brand new Sue!

*More to come soon! Stay tuned . . .

Monday, September 15, 2014

Special Edition: My Lung Transplant Jouney, September 16, 2014 - Oh, the Places I'll Go!

"You're off to great places, 
Today is your day!
Your mountain is waiting,
So... get on your way!” 
- Dr. Seuss, Oh, The Places You'll Go!

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.

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.

So in random order, here's some top places on my travel wish list:

* New York to tour the city, see a Broadway show, and watch the Macy's Thanksging Day Parade
* Alaska to see the aurora borealis, polar bears, icebergs, and other beautiful sites
* Road Trip across the United States in a cool convertible to see quirky tourist attractions and eat at diners and other local joints
* Return to Maui, Hawaii where Tim and I honeymooned, one of our best trips ever
* Slovenia and Slovakia to see where my ancestors lived, worked, and played
* London and Paris - to visit my sis, and to see all sorts of touristy sites like Big Ben, The Tower of London, The Louvre, and the Eiffel Tower


What's on your travel wish list?

Tuesday, September 9, 2014

Special Edition: My Lung Transplant Journey, September 9, 2014 - Impatient Inpatient

15 months, 16 days and counting . . .
That's how long we've been waiting for my new set of lungs!

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.

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. 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.

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.

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.

I will not go down without a fight!

Wednesday, April 23, 2014

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

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


Simple and to the point! April is Donate Life month.
 Please register to be an organ donor!

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


Thursday, February 27, 2014

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

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

Post 4, Weary

The Waiting List, 2/25/2014, evening, Instagram
FROM GUEST EDITOR SUE BOROWIAK, YORKVILLE, IL. WAITING FOR A DOUBLE LUNG TRANSPLANT SINCE MAY 24, 2013. Photo by @suzib66. Weary. During the past few months, it's been getting harder for me to do things around the house. I get tired easily, and I always need to stop for a little break by resting my head. It's frustrating!

Post 5, Hopefully Devoted

The Waiting List, 2/26/2014
FROM GUEST EDITOR SUE BOROWIAK, YORKVILLE, IL. WAITING FOR A DOUBLE LUNG TRANSPLANT SINCE MAY 24, 2013. @suzib66 Photo by my daughter. Hopefully Devoted. Nearly every night before bed, my husband will rub my back because it's sore or itchy. I often sleep downstairs in a twin bed because it's much easier than climbing the stairs up to our bedroom, and sometimes my coughing keeps both of us awake. For now, It's better for us to sleep well than to be together, but I miss him. I think he misses me too.

Post 6, Tough Cookies

The Waiting List, 2/27/2014
FROM GUEST EDITOR SUE BOROWIAK, YORKVILLE, IL. WAITING FOR A DOUBLE LUNG TRANSPLANT SINCE MAY 24, 2013. @suzib66 Photo by my husband. Tough Cookies. I'm so proud of my children. Despite living day to day with a mom who is seriously ill, they are smart, athletic, funny, creative, musical, and all-around good kids. Recently, we prepared a special homemade pizza together for their dad's birthday. They help me with many things around the house, and for that I am grateful. They are resilient.

Tuesday, February 25, 2014

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

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

Post 2, The Bag

The Waiting List, 2/24/2014, evening, Instagram
FROM GUEST EDITOR SUE BOROWIAK, YORKVILLE, IL. WAITING FOR A DOUBLE LUNG TRANSPLANT SINCE MAY 24, 2014. Photo by @suzib66 The Bag. When they called to tell me I had been listed for a transplant, they said, "Pack your bag." So I did. This bag has been sitting in my bedroom for 9 months now. A friend of our family made this angel pillow for me to take along. I'm also bringing photos and artwork from my kids when the call comes. I didn't really know what to pack.

Post 3, Oxygen

The Waiting List, 2/25/2014
FROM GUEST EDITOR SUE BOROWIAK, YORKVILLE, IL. WAITING FOR A DOUBLE LUNG TRANSPLANT SINCE MAY 24, 2013. Photo by @suzib66. Oxygen! We all need O2 to breathe, but I need more than a healthy person. I cried 5 years ago when my doctor told me I needed it. Although it helps me breathe, it's also like a ball and chain. My tubing gets tangled up around the house, and it's hard to carry out and about. We always worry I will run out of oxygen, and it's very scary when I can't breathe or have a coughing fit.

Monday, February 24, 2014

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

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


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


Friday, February 21, 2014

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

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

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

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

Sunday, November 24, 2013

Special Edition: My Lung Transplant Journey November 24, 2013 - In the Que


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

  • 15,897,600 seconds
  • 264,960 minutes
  • 4,416 hours
  • 184 days
  • 26 weeks (rounded down)

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

    1. I'm not very good at waiting.
    2. I still don't like using supplemental oxygen although it's necessary to keep me alive and kicking.
    3. Eating a lot to gain weight is not as easy as it sounds.
    4. I can spend hours each day doing a whole lot of nothing.
    5. I cry over many things, but if it's spilled milk or messy things, I usually swear.
    6. I am oh so proud of my children. They are smart, talented, athletic, funny, determined, helpful, and resilient people despite the challenges of having a sick mom.
    7. At times, these same children drive me crazy!
    8. I chose the best husband ever. I could not imagine navigating this journey without him by my side. I often do not give enough credit.
    9. He drives me crazy too!
    10. Pajamas or yoga pants are the new black.