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 . . .


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!


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!