Sample Image

Our Story

Transplant Update

February 5, 2017 - Erin had her transplant surgery today.  Keep the prayers coming and please see the blog posts for further details.  To get to the blog please click on the "Blog" link at the top of the page. Thanks to everyone for your support of Erin and her whole family.

Erin Culbertson, daughter of Paul and Karla Culbertson of Green Bay, was born in 2001 and was diagnosed with Cystic Fibrosis. Due to this disease, Erin's lung function was severely affected and doctors recommended a double lung transplant to help prolong her life.  Erin recently had her double lung transplant surgery under the care of the doctors at St. Louis Children's Hospital. 

With the cost of a transplant often exceeding $500,000, many transplant families are unable to shoulder the financial burden of such a procedure. The Children’s Organ Transplant Association (COTA) is a national charity dedicated to organizing and guiding communities in raising funds for transplant-related...

Updates

 

Excuses, excuses

It’s been awhile since you’ve heard from me and while it’s partly because Erin likes to play this see-saw game of feeling good then feeling bad, I’m blaming the lack of updates on the hole in my head! Literally, a CT scan in early October Continue Reading »

Happy New Year!

Today we celebrate Erin’s 11 month lungiversary and we have so much to be grateful for!  A year ago Erin found it difficult most days to walk 20 ft, in the attached video you will see she is doing much more these days despite some setbacks. In Continue Reading »

Forever and Always

Life after transplant is a constant roller coaster.  Nervous butterflies in anticipation of the upcoming free fall are felt every time we await test results or Erin isn't feeling quite right.  The thrilling excitement of the climb, while Continue Reading »

Sweet Sixteen

What better way to celebrate your 16th birthday than with chocolate fondue and friends!  Six hours with six girlfriends and countless memories created.  A special breakfast with her dad capped off with a special birthday dinner with the family. Continue Reading »

54..55...56...57...58.....?

To say we are ALL breathing a little easier this weekend is an understatement. Erin's lung function on Monday was 59% and Friday's came in at 61%!!! After the open lung biopsy, the magic number we were hoping to reach was 60%, and we've reached it! Continue Reading »

Fifty Shades of Grey

The world of transplant is anything but black and white and Erin's journey seems to be every shade of grey in between. Her lung function on Friday dropped to 50%.  Based on the conversations with her doctor the previous week, anything below 60% Continue Reading »

When no means yes

Erin's biopsy on Tuesday went smoothly. The doctor said her lungs looked healthy and despite suctioning a fair amount of mucus out with the bronchoscopy there was little inflammation. The size of the biopsy was larger and thus took 48 hrs instead of Continue Reading »

Prayer Warriors Needed

After the mention of possible chronic rejection at Erin's six month evaluation, we've been watching everything very closing. Some days are good, attending a few high school football games and making it through the entire first day of 10th grade Continue Reading »

6 month evaluation - check

Erin's 6 month evaluation is in the books. For those of you who haven't seen the videos click on the links below, Erin's transplant friend Avery does an amazing job detailing what Erin's evaluation involved. Paul reported earlier that Erin's biopsy Continue Reading »

Seesaw Mania

Today was a good day. This weekend was a good weekend. And that is VERY surreal. Our first two weeks home from St. Louis seemed like a dream as we began to experience everything we hoped the transplant would bring. However, the road since then has Continue Reading »

Expecting the Unexpected

As we packed up our bags for St. Louis on Sunday, June 11 expecting to return 3 days later on Wednesday, Paul said "See you on Friday!" I chuckled to myself thinking what could possibly go wrong with a routine procedure. But as Paul stated, there Continue Reading »

Parenting 101

Nothing can ever really prepare you for parenthood. You can read all the books, listen to all the advice, have a great game plan, but in the end nothing prepares you for the twists and turns that come your way. The same can be said for life after Continue Reading »

Sugar and spice

We are settling in to our 'new' life and it is challenging but wonderful. Our first trip to Milwaukee we saw her cf team and to say they were blown away was an understatement. Her lung function clocked in at 70%! Not every day is that high but she Continue Reading »

Short and sweet

Results from Tuesday's bronchoscopy showed no rejection. We surprised Paul and the kids by coming home early Saturday morning. We have appointments with doctors in Green Bay and Milwaukee this week so they can listen to Erin's new lungs (that sounds Continue Reading »

Memories being made

Erin has only had her new lungs for 80 short days, but if these last couple of weeks are any indication of the life ahead of her, it is simply that - a life. It's walking the mall, going to the zoo, trying on clothes, jogging (only a few 30 second Continue Reading »

Hooray, hooray, the 1st of May!

We have a busy two weeks ahead of us, but if everything goes as planned, we will be home by the 1st of May! After a long week of feeling very fatigued and weak, Erin had a great checkup today. She walked over 3/4 of a mile in PT (not bad considering Continue Reading »

One step closer

First things first, a0b0! The results from Tuesday's bronchoscopy show no rejection. All future bronchs will be done by her transplant doctor and because he is out of town the first week of May, there is a small chance her 3 month bronch will be a Continue Reading »

Bumps in the road

Now that we are in the recovery stage, visits from friends and family have become extremely helpful in motivating her to get up and move around. I can't figure out why, but living with just your mom for four months is not every teenage girl's dream! Continue Reading »

Thank you for your patience

As we continue on this journey, one thing is for sure, we won't be taking an easy breath for a long time. Have no fear, Erin's lungs are working great, but each day has so much uncertainty right now that life in general is stressful. Here's what's Continue Reading »

Status quo

We were scheduled for Erin's one month bronch on Tuesday, but this was postponed due to the pneumothorax (air bubble). They released us from the hospital Tuesday afternoon and asked that we call if there were any changes. Today was our regular Continue Reading »

One month in the books

This first week out of the hospital has been somewhat eventful. On Thursday we had our first bi-weekly outpatient clinic/blood work/X-ray/lung function test visit. Her lung function was up to 46%, over double her lowest numbers prior to transplant. Continue Reading »

Solo act...or rather a duet

The last couple of days have marked some significant milestones in Erin's journey. As of yesterday, we have been in St. Louis for 3 months, with less than 3 months before we can head home. Sunday we celebrated 3 weeks since her transplant and the Continue Reading »

Day 25

It is hard to believe, but it's true, Erin has been in the hospital for 25 days straight; even harder to believe is it's been 20 days already since Erin's transplant! We were scheduled to go home yesterday, but Erin began complaining of shortness of Continue Reading »

Worth every penny

What a celebration!!! Last night's benefit at Jimmy Seas raised over $10,000!!! We are so grateful for everyone's support. Have no fear Erin is working hard for each and every one of those dollars. Today marks 2 weeks since her surgery and she Continue Reading »

Not your average stomach bug

Erin has been battling a stomach bug for the past two days and with that came the realization that a stomach bug is no longer just a stomach bug. Erin had been nauseous and dizzy, fatigued, had a decreased appetite and ended up throwing up what Continue Reading »

Best Valentine's Day Ever!

Today was a great day! Erin went for three walks today, including a walk through the outdoor garden located on the 8th floor of Children's Hospital, This was Paul's last night in St. Louis and we celebrated by ordering pizza and hanging out together Continue Reading »

Monday Madness

I was on such a high last night after Erin took her first walk and I came crashing down this morning. Upon arrival we found out that Erin had vomitted three times overnight and was minutes away from her fourth. Not fun on any day, much less after Continue Reading »

What a week!

It is still hard to comprehend that Erin has new lungs, much less that it has been a week already since her surgery. The sheer complexity of the surgery and the follow up care blows my mind. Erin's chest tube is continuing to drain a lot of fluid Continue Reading »

The past 3 days

Hello everyone! Thank you for your patience as the updates have been minimal over the past three days as I have been trying to take everything in.  It has been a very emotional and physically exhausting experience. Continue Reading »

Expectations vs Reality

All in all, things are going very well for Erin.  Her numbers still look really good, she was weaned off the ventilator last night (although it is still down her throat), her bronchoscopy today did not produce any new concerns, and she looks good. Continue Reading »

Erin

14 Photos

It's all about the numbers

The first 24 hours after transplant were good, some might even say really good. Erin is working hard to breath on her own. They would like her to be able to take at least 12 breathes a minute on her own. She is rocking this challenge, taking Continue Reading »

Amen

'Amen.' That pretty much sums up today. We are grateful for the encouraging words and prayers throughout the day. Erin headed to the operating room at 5:00 this morning and we didn't see her again until 6:30pm. She refused to give hugs and kisses Continue Reading »

Transplant Update

February 5, 2017 - Erin will be having her transplant surgery TODAY! The surgery will begin around 7AM and is expected to last between 6 and 8 hours.  Karla does not know how often they will send updates but they will be sure to pass along any Continue Reading »

Exciting News!!!

We just received word from Karla that Erin has been preliminarily approved for a set of lungs.  Doctors are on their way into the hospital to visually inspect the lungs as this is part of the protocol, but according to Karla, the lungs look very Continue Reading »

Media Coverage

See Erin's story as covered on WBAY on Sunday, January 29. Continue Reading »

What a day!

Today marks two months since Erin and I moved to St. Louis, 5 weeks since Erin was officially listed for transplant, and one month since Paul and the kids came to visit. Talk about a journey! We also found out today that the Press Gazette, WBAY and Continue Reading »

Round One

Round One at St. Louis Children's Hospital is in the books! After a two week hospital stay, we will head 'home' tomorrow to our Ronald McDonald apartment. Erin is doing much better in that she no longer needs oxygen during the day, she is coughing Continue Reading »

Greeting Card Fundraiser

Greeting Cards (featuring Erin's artwork) Fundraiser: email Beth for one dozen or more 4.25 x 5.5 greeting cards -- $30 for one dozen. Continue Reading »

COTA Coin Canisters around town

Donation Boxes are around town. Please patronize the generous businesses. If your business would be willing to have a COTA fundraising box please email Beth. Continue Reading »

Together again

One month. It was exactly one month from the time Erin and I left Green Bay that we were together again as a family. Paul and the kids made the 9.5 hr drive down on Tuesday (that's right 9.5 hrs due to about 6 potty stops!). We had pizza and Continue Reading »

It's official!!!

We received the call this afternoon that Erin has officially been listed for transplant! The smile on her face when she heard the news melted my heart; I was brought to tears in the middle of IKEA. This Christmas season has flooded me with emotions. Continue Reading »

Another week goes by

I feel like a broken record sometimes. This week Erin had a gamet of tests again, one very intense one to help determine possible causes for her stomach pain. The test did not provide the doctor with any conclusive evidence, so we will need to wait Continue Reading »

NEGU

What is NEGU, you ask? NEGU is our new motto here in St. Louis. Last night Erin had a sleep study done at the hospital. Upon our arrival the technician gave us a goody bucket filled with donations from the Jessie Rees Foundation. The foundation was Continue Reading »

Slight change of plans

It's Friday evening and Erin was supposed to be officially listed today. The doctor is concerned by the amount of medication Erin is taking for stomach pains and the fact that she still endures chronic pain. More tests are scheduled early next week Continue Reading »

And so it begins...

Truth be told I am not sure what to write. This past week was filled with tearful goodbyes from friends and family. We have been blessed and are truly thankful for the generosity of friends, family and complete strangers, not to mention the number Continue Reading »

Feeling blessed

It is hard to put into words what this roller coaster ride feels like, but the most resounding feeling as of late is 'blessed'. On Saturday we held an open house for people to come and say goodbye to Erin and we had non-stop people for 7 hours! It Continue Reading »

1...2...3

What started out as a 1 week hospital stay has turned into a 2 week stay, leaving us with only 3 weeks until we leave for St. Louis. The second week at the hospital revealed that Erin's oxygen levels were fluctuating dramatically some nights, almost Continue Reading »

Home sweet home

Last night my youngest, 4-year-old Kahlan, talked to me over the phone and asked in a very sad quiet voice "Mommy..... when you coming home?" After a week long trip to St. Louis, I had been home for two days before leaving again for over a week. "In Continue Reading »

Preparing for the Journey

We survived 36 hours of appointments over 4 days and 16 hours on the road. All signs point towards a move to St. Louis and we will get the official word this Friday. St. Louis confirmed that Erin's health is pretty severe and without a transplant Continue Reading »

Day 2 is in the books

Two days and 16 hours of appointments has all of us pretty tired. We've met a lot of members of the transplant team including the transplant doctor, cardiothorasic surgeon, child life, infectious disease, transplant coordinator, social worker, Continue Reading »

A New Journey Begins

We are less than ten hours from the 'official' start of our transplant journey. Sunday, October 16, 2016 Paul. Erin and I will drive over 7 hours to St. Louis for a week long transplant evaluation. Monday thru Thursday, 8:00am-4:00pm, our schedule Continue Reading »