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 . . .

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.

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!

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!"

I 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!

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!

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

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 . . .

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?

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!

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.

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.

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.

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

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!