Imagine this: Being a regular 20something, dealing with all the stressors life throws at you this decade, but then on top of everything, not being able to breathe. Not being able to walk to the bathroom without getting sick. Not being able to drive anymore. Not being able to enjoy happy hours and exercise and everyday activities we all do, but take for granted.
This was the reality for my 20something best friend, Tiffany. If you are an old reader of my blog, you know Tiffany well. I boast about her often, talk way too much about how we met Taylor Swift, and always make it known how she is my forever inspiration in life. If you are new to my blog, welcome! And let me introduce to my best friend Tiffany:
•Born with a horrible, horrible lung disease called Cystic Fibrosis
•Never not smiling
•A recent Saint Mary’s graduate with a Health Science degree (fun fact: in her last semester she would bring her IV pole into class with her when on antibiotics. I sometimes think about this when I’m contemplating whether or not I should go to class today)
•Has the most amazing boyfriend, best of friends, and incredible parents
•TAYLOR SWIFT WANTED TO/DID MEET HER
•2 weeks into recovery from her life saving dual-lung transplant
She’s pretty amazing, right? I KNOW. And two weeks ago, she finally got the call. The call she has been waiting for for 2 years and 8 months. The call she has dreamt about, but also got nervous for because of the unknown. The call she has been praying for the last few months as her disease progressed. The call that saved her life.
I’ve been pretty quiet on my blog, because I have been too busy by my best friend’s side. The majority of my December has been at (in my opinion) the most amazing hospital in the world – Stanford. I wouldn’t have it any other way. This journey so far has been anything but easy, but two weeks in and she is finally seeing the light at the end of the tunnel.
Because I can never stay away from writing for TOO long, I took over her social media where her following is just, astounding, to let her biggest fans and friends know what is going on. These social media posts have turned into my mini-daily blogs, so I thought I would come to Embracing Twenties and share them all with you.
Her story has inspired every person that knows her. As 20somethings, it is easy to get caught up with the stresses and hardships this decade can bring. However, Tiffany’s story and struggle and strength are good reminders that we are lucky every time we take a breath. Although life can be really hard, it can always be harder. Be a Tiffany: Find the good in every situation, no matter how bad it may be. And always remember to #JustBreathe.
Without further ado, the last two weeks:
The Day Of
It’s been 973 days. 973 days since going to a normal Cystic Fibrosis appointment and being told the life-changing decision of needing a double lung transplant. 973 days of endless amounts of hospitalizations, coughing attacks, losing the ability to do every day things, losing the ability to be.. me.
And now, it’s been 28 hours. 28 hours since she got the life-changing call of getting new lungs. 28 hours of imagining being able to breathe. 28 hours of feeling anxious of the unknown. 28 hours of getting excited as she plans out all the things she will be able to do after recovery. 28 hours of dreaming how she will get to be herself again.
As she rolls into the operation room, she can’t help but feel a wave of emotions. This is her time. This is her chance at a new life. It’s here. The day is FINALLY HERE.
The hashtag that helped me make my dream of meeting Taylor Swift a reality is finally coming to life.. #Lungs4Tiff is happening.. RIGHT NOW!!!!
→ XOXO, Kelsey (taken from the mind of our girl Tiff). Will be updating for her throughout this life-changing journey as she gets the new lungs and the new life that she so much deserves. Let’s send all of the positive vibes her way as she gets her second chance at life.
7 Hours Later..
My favorite type of update: A happy one
After about 7 hours in surgery, we just got the news from the surgeon that everything went great. Her new lungs are the perfect fit, and in the next couple of days she will be able to communicate with us and (most importantly), take her first ever DEEP BREATH. A moment she has been waiting for for 27 years. Life is so good.
In the next hour, we will be able to visit Tiff as she starts her long recovery process. I will continue to keep you all updated and want to send a huge virtual hug to each and every one of you who prayed and sent positive thoughts to our girl
It has been an amazing 36 hours filled with love, tears, laughs and hugs. The struggles and hardships have all been worth it because they have led to this exact moment. XOXO, Kelsey
The Day After
After a full night in the ICU, Tiff woke up and everything is looking exactly how it’s supposed to — Good. a few hours ago she got the breathing tube taken out and has been able to communicate through a white board and marker one of her sweet besties got for her!
Will be updating soon as more things come up during this recovery process, but the important thing to note is everything on Day 2 is looking good. Tiff has always been an over-achiever and hard-worker, the fact she is doing so great the day after having a dual lung transplant is no surprise.. #AMIRIGHT — Keep those prayers and positive vibes coming her way, this will be a long journey!
A 24-hour Update
&& a good inspo-post for my motivation-seekers || It’s been about 24 hours since we watched as Tiff was wheeled through those hospital double doors, and although it was an exciting and emotional moment for all of us, it was also a nervous one. Our daughter, sister, bestie, and girlfriend was about to have a major surgery. Her old, mucus-filled and scarred lungs were about to be replaced with healthy ones. Her chest would be cut open, and after 7 hours, closed back up. It’s a surgery that is long and complicated, but more importantly, a surgery that is life-saving.
It’s been an emotional and exciting 24 hours, and things just got a little bit better. 24 hours after this major surgery, our girl has TAKEN HER FIRST STEP. She sat up in the chair, took a sip of water, and continued to amaze all of us cheering her on. These little milestones have been giving us the biggest of smiles, and we cannot wait to see what more she will accomplish in the next 24
A Rough Day
Tiff had a rough night last night in the ICU and continued to struggle all today. With little sleep, a lot of pain, and overwhelming feelings of anxiety.. it has been a rough day. One thing we all know for sure — If there’s anyone who will fight hard and stay strong and positive through this long and emotional journey, it’s our girl Tiff
Some positives: HER AND NALA ARE REUNITED!! (Her beloved stuffed animal she brings with her every hospitalization), SHE HAS NEW LUNGS!!, she got a feeding tube put in her nose to help with nutrition, and she has the most amazing support system in the world. Let’s continue to send all of the positivity Tiff’s way as she battles this rough day and finally gets to enjoy and live the life she’s always deserved || #Lungs4Tiff → #TiffGotLungs
After a really rough day yesterday, followed by a scary and hard night, waking up to a “doing well and making good progress” text put life into all of us again after being so scared. One of the best things to hear? She has been resting comfortably all day and FINALLY getting that sleep her body so desperately needed. Today, is a good day, for a couple reasons..
Another reason: A surprise visit from an extremely special person. In 1998, Tiffany did “Make A Wish” and met a lot of amazing people through that equally amazing program. One person who Tiffany and her family has stayed in touch with after all these years is a special woman named Pam from Give Kids the World. While we were in the waiting room and Tiff was in the process of getting her shiny new lungs, Tiffany’s mom got a call from Pam. A couple minutes later, she let us know Pam was going to come into town and surprise Tiff this weekend at the hospital. All at once, every one of us had tears in our eyes. We knew what a special moment this was going to be for Tiffany. Today, this moment came to life. As expected, Tiff lit up and this surprise couldn’t have come at a better time. It was the most amazing visit and surprise for the most deserving girl.
Let’s keep up all the positive thoughts and wishes for Tiff. The little moments of progress are amazing, but we do realize this is just the beginning to a long and hard journey. But a great journey, as it has led to the moment of a second chance at life for Tiffany
Yesterday and today have been filled with mini-milestones, and these are some of the greatest moments of progress to be shown. In addition to making progress, Tiffany has truly been in the best of spirits. There are very few people in this world who could handle all life has been thrown at her, and the way she is fighting and staying so strong is truly a testament to her character and the reason she is an inspiration to so many people.
Yesterday, myself and her second mom Laurie relieved her parents after they spent endless days and nights by her side in the ICU. In the hours we were there, Tiffany successfully got her feeding tube inserted (the day before they weren’t able to get it in), she sat up in a chair, she got one chest tube taken out, and one IV from her neck removed. Superstar status.
The next part has been one of great difficulty, which is the breathing tube/ventilator. It was originally taken out the day after surgery, however Tiff was struggling to breathe without it so they decided it would be best to put it back in to help her breathe easier and get that rest she has been craving. The plan today, is to try and take it out again. It is important for her new lungs to start breathing on their own as much as possible so her body can fully adapt and start to get stronger. The latest update: Doctors are going to do a test to see if she’s okay and if so, remove the tube once and for all
The hard days are making her stronger. One day closer to making great use of her new lungs
XOXO, Kelsey || UPDATE: BREATHING TUBE IS OUT AND SHE’S DOING GOOD!!!!!!
Smiles All Around
Can you believe it’s Day 6? Time flies when you are busy getting your second chance at life || After successfully getting the breathing tube out last night, today has brought a lot of optimistic smiles and progress we have all been dreaming about..
Just SIX DAYS after a dual-lung transplant, our girl Tiff is showing her inner-superwoman once again and showing this recovery day who. is. boss. Today she started her journey with physical therapy (did amazing, as per usual), sat up in a chair for an extended period of time, got her hair and teeth washed, and took a few steps.
Things we are hoping for next: SLEEP!! She’s been struggling getting her rest, and we all know how exhausted she currently is. I have a feeling after a good nights sleep tonight, tomorrow is going to be filled with another day of #minimilestones and even more progress goals.
Day 6 has been a good, good day. Can’t wait for an amazing day 7 — Let’s continue these positive thoughts + prayers for our girl! They. Are. Working. XOXO, Kelsey || #Lungs4Tiff #TiffGotLungs
The Ups and the Downs
Today as I was sitting by Tiff’s side, she looked up at me holding my hand and said, “today is really rough.” From the moment I walked into her hospital room today, I knew that the few prior days of progress had currently been put on pause. I instantly saw the exhaustion in her eyes. The heavy breaths. Her inability to keep her eyes open for more than a few minutes. It was heartbreaking to watch, but also a good reminder that this girl has just endured a major surgery, and just like every recovery process, there will be ups and downs.
Her equally as amazing boyfriend, Jeff, and I sat by her side, turned off all the lights, turned the volume down on the tv, and let her do what her body has been so craving the last week: SLEEP. And she did. Hard. I’ve never enjoyed silence so much in my life, knowing that she was finally able to rest. After about an hour, she woke back up and I really started to notice how much work her body was doing to breathe. It reminded me of pre-transplant, right before she would get an infection. Within minutes, the Stanford #TransplantTeam came in and gave her an X-ray, just to check things out. Turns out, one of the chest tubes they clamped earlier in the day was letting in too much air, causing shortness of breath. They decided to unclamp for the night, and within a few minutes her breathing was already better.
After a few days of “up”, today was a day of “down”. And that’s okay. Between her exhaustion, anxiety, and putting in so much work to breathe, this day of just rest was exactly what she needed. By the time I left tonight, she was already feeling a bit better. Tomorrow, is a new day. Another day of progress and mini-milestones and another day closer to living her new life with her new lungs
Aside from the rough day, everything else is right on track and her new lungs are doing absolutely great. We aren’t joking when we always brag about Tiff being a fighter
A Weekend Recap (Part One)
After a super rough day on Thursday, which then led to an even tougher Thursday night, seeing this smile on Tiff’s face after this weekend was exactly what we have all been praying for. After some adjustments to the anxiety meds, and getting to the bottom of what exactly was causing the shortness of breath, our girl was finally able to breathe a little easier this entire weekend. Today, was a good day! Her bestie/sister/tiffsquadmember stayed with her today in the hospital, and there were smiles all around
In regards to her breathing, the #TransplantTeam saw that there were symptoms of air leakage in her new lungs, and this was causing the fluctuations in her breathing. Although this can be common after a lung transplant, it means that Tiff will have to have a bit of an extended stay at the Hotel De Stanford she is truly in the best hands there, and we will be supporting her and her bumpy recovery journey all the way through!
A few bumps in the road are just leading her to the beautiful destination with her second chance at life, and we cannot wait!! A good ending to a long weekend || #Lungs4Tiff #TiffGotLungs
A Walk To Remember
Yesterday, Tiff had one of her “down” days. With her new lungs, although they are doing amazing, before the actual transplant they had to do a quick repair to the lungs as there was a puncture to the left lung. This has caused air and fluid leakage, which requires leaving the chest tubes in for drainage for a more extended period of time. Recovery period has been a little slower than we had hoped for, but much better safe than sorry. A few minor complications with feeding tubes and IVs has caused a bit (a lot) of scary moments and stress for our girl, but she has gotten through and fought like a freaking champ. The rough night yesterday has ultimately led to a much better day today..
Although exhausted from virtually no sleep since her surgery, as soon as PT walked through the doors, Tiff knew exactly what she needed to do: Get her lungs working, regardless of how tired and out of it she is. A critical part of the recovery stage after a dual-lung transplant is to fight through the exhaustion and force yourself to get your lungs working. This causes the lungs to expand and get used to their new home, which is crucial during this phase. So, Tiff showed her new lungs whose boss and walked the FARTHEST she has since transplant when she walked 300 feet. It was incredible. And also extremely tiring for her, which is what we are hoping for so she FINALLY gets that good night of sleep
The 300 feet today was sure a walk to remember, and a moment to be so proud of. A true inspiration this girl. Let’s keep cheering her on, the positive prayers and vibes are being put to good use.
A Weekend Recap (Part Two)
Can you believe it’s now been over 2 weeks since our favorite girl had her dual-lung transplant?! These last two weeks have been a true testament to Tiffany’s strength, and easily one of the most challenging times of her life. But within these hard times during the last two weeks, there have finally been moments of clarity. Moments of seeing the light at the end of the tunnel. Moments that she can finally envision her life with new lungs. These are the most important moments of the last two weeks — The moments of hope. These times keep her going and keep her fighting and keep her making superwoman progress like walking 300 FEET WITHOUT SLOWING DOWN!!
This weekend has not been easy. Between still not being able to get a full night of sleep, back pain, problems accessing her port, and bouts with overwhelming anxiety, it has been a very rough time for our very strong girl. HOWEVER, intertwined with these hard times have been greats times of progress — She is now only on oxygen AT NIGHT!! so she sleeps comfortably. Before transplant, she was on 4-6 liters of oxygen every second of everyday. This is HUGE. In addition, she got another one of her chest tubes out, and has continued to fight through the pain and exhaustion and forced herself to sit up in a chair and also do smaller, but important, walks down the hospital hallways.
Tomorrow is the start of a new week, and also the week of one of her favorite holidays — Christmas!! All of our Christmas wishes involve Tiff getting to take that deep breath and enjoy her new lungs and maybe even, be home (in her near-Stanford apartment). Although her hospital room is lined with a pink Christmas tree and holiday goodies, there is nothing that beats a comfortable stay at home for the holidays. As usual, she is in the best spirits. She acknowledges how rough this weekend has been but is looking forward to a much better week.
What a ride these last two weeks have been. It has not been easy, and we know that recovery for the next 3 months to a year will be difficult as well. However, the hope and the excitement for her future is there. After this recovery period, Tiffany will finally be able to be herself again. To live the life she has deserved, and to finally breathe easy.
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To the happiest of futures,