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Tracy’s IPF Journey

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Tracy’s IPF Journey

A central page for ongoing updates and information regarding Tracy’s health and medical condition.

04/23/2024

Hi friends. We have an urgent prayer request tonight.

Mom went into a CT scan of her chest this evening and they found two blood clots in her lungs. She’s currently in the emergency room at the hospital in AZ, where they’ve been doing all of her testing and evaluation at.

I know this is very concerning but PLEASE, please do not text or call her right now, at all as this is all very overwhelming- If anyone has any questions or concerns PLEASE message, text or call me.

Lastly, PLEASE pray for my sweet mama tonight, pray for this new issue added to her list, to be gone in Jesus name. He is a miracle worker.
Thank you all so very much & I promise you update as soon as I know more.

04/10/2024

The heart surgeons appointment this morning went awesome. 💜
He is saying yes to a 2 for 1 that he CAN work on my heart while they give me new lungs 🫁
We won’t know for sure until 04/12 OR 04/19 if I’m even a candidate for the surgery BUT my transplant team needed green lights from everyone involved! He is asking for one more test, an ultrasound of my legs to make sure my veins are good to use in my heart.

For those of you that don’t know, I am currently waiting on an appointment for a MRI of my heart, that was just asked for after my results on Friday.
The Vascular Surgeon gave me the GREEN light as well 🥹

St. Joseph Hospital & Medical Center in Phoenix, AZ is one of like 6 Hospitals that do this 2 in 1 heart lung surgery. THANK YOU for your love 💜

And, he said that I am a Survivor 💜💪🏻

04/09/2024

Today was day ELEVEN ❤️ We are DONE, DONE DONE!!! #11
AND, so so happy about it!!!
THANK YOU so much for your continued Prayers, Love AND Support ❤️🙏🏻🤗😇
THANK YOU!!! I LOVE YOU!!!😘 🤗😇
It would be a 2 for 1… A Double Lung Transplant AND a Triple bypass at the SAME TIME 🫣

I will get that phone call on 4/12 OR 4/19 of a Yes, No OR More testing. 🙏🏻🙏🏻🙏🏻

04/06/2024

Hi friends, yesterday was day TEN! 🫶🏼
ONE. MORE. DAY.

First and foremost I want to thank you for praying for my mama. Your prayers, your love and your sweet & encouraging words has really gotten her through these last, almost, two weeks.
Secondly, mom had a procedure done yesterday - a heart cath, where they thread a catheter through the arteries that lead into her heart. & through that procedure we learned of a few, tough things:
- two arteries leading into her heart are 100% blocked. (one on the right & one on the left)
- another is 70% blocked. (in the middle/left area)
- her stent, that was “lost” (as UC Health in Denver told us) is very much so there and completely covered in plaque.
These things could all be catastrophic.
And could possibly be one of the reasons it has been difficult to breathe/do things lately, along with the need of a double lung transplant.

As of right now: she needs to have a triple bypass surgery, as soon as possible. She has a meeting on Wednesday morning with the cardiologist and vascular surgeon to go over what that looks like.

This is all very sudden and very scary. I’ll update you all more as we know more, but for now mom is resting and we are all digesting this heavy news.
Your prayers are one of the main things holding us afloat, so please don’t stop praying for her and for what the future holds.
Thank you all so very much for loving my mama. 💜

04/02/2024

Today was day #6, FIVE more to go.
I am SO GLAD that I have SO MUCH Love ❤️, Prayers 🙏🏻 & Support 💪🏻… It REALLY helped me out today with the worst test yet….. THANK YOU!!!
😘🤗😇🫵👀🫁🫶🏻🤟🙏🏻🙏🏻🙏🏻🩹❤️
It’s a study that tells the doctors the amount & severity of stomach contents backing up into the esophagus & can detect if the content of the reflux is acidic or non-acidic. From the study, your physician will be able to evaluate the number of reflux events, the acid content of each event, as well as how long each event lasted. I have to wear the tube up my nose & down my throat for 24 hours 😖
I will pull it out tomorrow morning at 10am 🙏🏻🙏🏻🙏🏻

03/27/2024

Days one and two DONE! Nine more to go ❤️💪🏼
PLEASE be praying for Friday, April 12th. We will have a yes or no by then.

03/24/2024

Good morning friends!
The time has come (again) for mom to go through another lung transplant evaluation.
This time, she’ll spend TWO weeks in Arizona with some very loving friends, undergoing multiple tests, procedures and blood draws to determine if she is a candidate for a double lung transplant at their center. This will be her fourth hospital and second evaluation.

PLEASE keep her in your prayers over the next few weeks, we’re praying for good/positive test results, easy/painless recovery & and YES for a double lung transplant!

Your thoughts, love, encouraging words and advice has helped us both immensely during this season, thank you all for loving my mama and supporting her incredibly difficult but beautiful journey. 💜💫

02/29/2024

Small update on my mama: 💜🫁🙏🏼

02/23/2024

Family & Friends would be SO proud of me... I was the ONLY one that did 3 out of the 4 papers during cardiology and pulmonary rehab week. I received a ballon, a mask, candy, buttons & a stretchy exercise item.
I have been going to Pulmonary Rehab 3 days a week for awhile now, I'm almost done. I have been doing 30 minutes on the treadmill 20 minutes on the bike that uses arms and legs and 10 minutes on the sit on your butt and pedal the wheel for upper body strength.

For those of you that haven't heard YET... I received THE CALL to set up two days of testing for a consultation for a possible Double Lung Transplant in Phoenix, Arizona. PLEASE PRAY 🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻
Safe travels 🚘❤️🫶🏻🫁
I’m also still waiting to hear back from UCLA. We are up to step four with them.
THANK YOU SO MUCH FOR LOVING ME!!! ❤️👀😇

01/19/2024

Hi friends and family! ❤️
We are actively moving along with the transplant process with UCLA.
I need to ask: Do I have anyone that I know and who loves me, who lives in LA - 100 miles from Ronald Reagan UCLA Medical Center.
Comment or message me if you do!
Thank you for loving me and supporting my journey ❤️🫁🙏🏻🤞🏼🤗🥰

01/10/2024

(from my personal page - it wouldn’t let me share on here so I’m just reposting it 🫶🏼)

Today marks four years since my mama recived her lung disease diagnosis - idiopathic pulmonary fibrosis. The life expectancy with IPF is 2-5 years, which was one of the hardest pills I think either of us has ever had to swallow. My amazing mama has fought this disease so gracefully & I know she’ll continue to do so.
In the last four years I’ve learned so many different sides of my mama and I wanted to share some of them with you all.

Her strength, her courage and her bravery.
To this day, I have never met someone as strong as this woman.
Her bravery to continue to get up and take Kysen & Bullet on countless walks, oxygen in tow, always pushing it to her max because Kysen wasn’t ready to come home just yet.
Her courage to continue working in a hospital of all places, during and through the height of covid.
Her strength to face the doctors when they told us “I’m sorry but you are not a candidate for a double lung transplant.”

Of course, the anger.
We would all likely have anger when receiving a diagnosis as ugly as this one. Still, she handled her sliver of anger with such grace. Getting annoyed when people would stare at her when she had her oxygen in (which I think they’re just staring because she’s beautiful - just like she’d tell me as a kid) or getting frustrated because she wanted to do more and her body just wasn’t letting her.
She has continued to push the anger aside and fight this thing, tooth and nail.

Her faith in the Lord.
Honestly in the last four years, I haven’t seen or heard this woman question the Lord ONCE. She got handed a death sentence and continued to praise Him. Regardless of what she got thrown her way, whether it be new medication, more horrible side effects, more/new procedures or even TWO hospitals denying her for a transplant - she continued to trust Him, praise Him, love Him and pray to Him. Her faith is beautiful and so inspiring.
This journey hasn’t been easy, especially for her but you couldn’t tell. She always has a smile on her face and joy in her heart, regardless of the circumstances in front of her. ❤️

A little update regarding her latest appointment:
Mom has sent her medical records to three other hospitals. One in California, Michigan and Florida. As of today, UCHealth Denver and University of Michigan have both denied her a lung transplant. California and Florida are both still on the table.
Her lung function is currently at 44% - which is definitely a decrease and a scary number but her doctor is very optimistic. She has been doing pulmonary rehab three times a week and her doctor even started her on another medication to hopefully slow down the progression of the scar tissue even more.

I just want to say thank you to everyone who has supported, prayed for and loved on my sweet mama and to everyone who has helped her in any way. From taking her to dinner, attending Bible studies with her, taking her on fun/new adventures and sending her sweet gifts. Everything you do will never go unnoticed or unappreciated, especially from her daughter, who would give anything to spend every single day with her.

“God’s got me” as my mama would say and we are wholeheartedly believing that every single day. 4 years kicking IPF’s butt DOWN ❤️

10/11/2023

Update from mom’s most recent breathing test on August 22nd, 2023:

My lung function/capacity to breathe has went down 20%. Not the news we wanted, but we know it’s in God’s hands.
Before this last test, I was doing my breathing tests every six months in Colorado Springs, now I have to go back to every three months since it’s progressing faster than we expected - I am in the process of finding a new lung doctor here in Grand Junction.

My lung doctor suggested I make some phone calls and see about getting a second opinion on a double lung transplant - that is something we are praying HARD for.
My next step is going to the National Jewish hospital in Denver to see if there is anything else that they can do to slow down the progression of the scar tissue on my lungs.

Thank you for your continued prayers, love and support - I love you all. 💜

08/01/2023

Monday afternoon, I received my phone call.
I am NOT a candidate for a double lung transplant. My arteries are a lot worse than we knew.
Thank you all for your love & prayers - God is good & he has me in his hands ❤️🙏🏻

07/31/2023

Here’s the long awaited update from evaluation week 🫶🏼

It was a VERY heavy week - emotionally, mentally & physically. We learned SO much more about mom’s health this week, more than we thought we’d ever know.
She was poked and prodded TWELVE times in five days, three straight into her main arteries & they took 18 vials of blood.
Wednesday we had consultations ALL day. They were mentally exhausting and some of the conversations were really hard. We found out that mom’s blood vessels suck - her legs have been going numb for about a year now and have gotten worse overtime & now we know it’s because her blood vessels are narrowing and the blood flow in her legs ultimately suck. This alone makes her, as they said, a complicated patient.

She had to do the infamous “six minute walk” - where you see how many feet you can walk while on oxygen, for six minutes straight. To pass the test you need to walk 1,000 feet but mom likes to show off and walked 1,500 feet! 🙌🏼🥳

Friday morning was her biggest procedure all week, they sedated her for a heart cath. We were both the most anxious for this one, but God willing, everything went smoothly. The results on the other hand, weren’t what we were expecting.
Back story - mom had a heart attack in 2012 and had a stent put into her RCA. That RCA is no longer open, which means it isn’t working. The blood flow luckily found a different route into her heart but it was very surprising to hear since she sees her heart doctor yearly & no one has ever raised concern.

After the longest five days of our lives, we will know by Wednesday one of the following answers:
1. YES - she’s a candidate for a double lung transplant.
2. No.
3. Too early for listing.
4. More testing required.

Thank you, thank you, thank you all for checking on us, texting us, loving us and praying for us. You all really carried us through this week - neither of us could have gotten through it without all of you. 🫶🏼
God is GOOD. 💜

⬇️ photo dump from our week

07/27/2023

Tomorrow is the “biggest” day of the week - mom will be sedated for a procedure in the morning. It’s our only appointment thankfully but it’s gonna be a tough one.

We’ve received a lot of new information regarding her health the last few days and a lot of information that has been hard to swallow.

She’s the strongest person I’ve ever met. ❤️
Thank you for your continued love and prayers. We’re hoping to sit down and write everything down for a more in depth update when we aren’t exhausted.

07/24/2023

The day is HERE! 🥳
We are heading to Denver for my five day testing to see if I am a candidate for a double lung transplant. I can not even begin to explain to all of you how much ALL of the love, support, kindness & prayers have meant to me. So many of you have reached out with kind words & have been there for me, it means the world the me.
I ask all of you to please say a prayer for me this week! God has this and ME.
Ashley or I will keep you as updated as we can!
I LOVE YOU ALL!!! XOXOXO
❤️🙏🏻🤗🙂🙃😁🙌🏻👊🏻💪🏻💃🏻☀️😇👀🫁🫂👵🏻

05/24/2023

Hello my Favorite Human’s that love me ❤️🙂 AND, that I love with ALL of my heart……
I received “THE CALL” & so far I still have the green light. My insurance will cover my Double Lung Transplant Evaluation… I am scheduled for five days of Evaluation testing July 24th. When ALL of the results come back, a panel of 12 Doctors & Surgeons will evaluate me a YES or a NO to be a Candidate for a Double Lung Transplant. 🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻
Your Prayers are SO MUCH appreciated ❤️
I THANK YOU ALL!!! 😘🤗💪🏻🙌🏻👊🏻

05/03/2023

Update on mom’s interview yesterday:
She was given the green light to move forward in the process to be put on the list for a double lung transplant. 🙌🏼
We did find out that she is going to be a “complicated patient” as her doctor put it - because her vascular disease is a bigger issue than we thought. They still WANT to do it, they still think it’s possible so that gives us hope.

Her next step is a 5 day evaluation at UC health hospital in Denver where she’ll undergo A LOT of intense testing. A board of twelve doctors will then evaluate all of her test results and determine whether or not she’s a good candidate for the double lung transplant.

Yesterday was HEAVY and hard to wrap our minds around, but we’re trusting God that everything will work out the way it’s supposed to. Please continue praying for my sweet mama, she appreciates your love and messages more than you know! 💜

05/02/2023

TODAY’S THE DAY! ✨
I’m starting the interview process for a double lung transplant this morning in Denver, CO!
We’re starting with a breathing test then a blood draw and finish off the morning meeting with the transplant coordinator.

Your continued prayers, messages and love have been so comforting and encouraging! Thank you for loving me and following my journey, God is good!❤️🫁

04/04/2023

Hello friends!
I made this page to have a central spot for all of the coming updates and information regarding my IPF lung disease and other medical conditions.

Here’s a little back story:
I was diagnosed with IPF January of 2020 and was placed on oxygen six months later.
IPF stands for Idiopathic Pulmonary Fibrosis - it’s a terminal condition in which the lungs become scarred and breathing becomes increasingly difficult, it is not clear what causes it.

For the past three years I’ve been on medication to slow down the progression of the disease. The medicine has done it’s job but the side affects have been one of the toughest parts.

I am at the point now that my next step is to start the interview process to find out if I’m a candidate for a double lung transplant - my first interview is May 2nd, 2023.

Your prayers, love, thoughts, and messages are VERY appreciated - I wanted a space where I can keep those I love informed and also receive prayer during this time. Thank you for following my journey, God is good. 💜

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