Blog

Fundraising Update

I feel like things have been so busy lately, but the page is in desperate need of a fundraising update!

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Bridges to Brews COTA fundraiser

https://www.raceentry.com/bridges-to-brews/race-information

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Lewiston Tribune Feature Story about Erika's Journey

Check out this article in the tribune! We are a thankful that our community can be made aware of Erika’s journey and help us to spread the word about our fundraisers!

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HOME and first infection

http://www.COTAforErika.com

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Our shirt campaign is officially ready!

https://bonfire.com/erikas-new-lungs/

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THEY GOT MARRIED!

You may have noticed that the page has been a little quieter lately. We apologize for this, and appreciate everyone patiently waiting for updates.

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T-SHIRTS

I have something I am super excited to share. We have been working on making T-shirts to raise money for COTA in honor of Erika to assist with transplant related expenses!

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8 Week Update

Today was a very early appointment day! As always, Erika started the morning with a blood draw to check the levels of the anti rejection medications in her blood. Next was a chest X-ray, which showed that there was no concerning leftover fluid on Continue Reading »

Breaking Records

Yesterday was a great day for Erika! The day started off with a quick appointment at the hospital for a port flush and ended with a long walk and a long nap.

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Good Friends

Last week Erika and her mom said goodbye to some good friends! Kari and her son Alex live in Montana. Alex also has Cystic Fibrosis and was transplanted at UWMC in January, receiving 2 lungs AND a new liver! Alex and Erika were connected by one of Continue Reading »

•Day Trip!•

Today Erika was able to go to Whidbey Island and visit her favorite tiny humans. And with the permission of her transplant team of course, it was the first time she was able to leave Seattle for the day. We may have pushed it a little too hard on Continue Reading »

Shout out to my friend Britnie

Shout out to my friend Britnie for sending me this amazing blanket! Britnie has walked through a difficult medical journey of her own, battling cancer. During her free time, she decided to give back to other patients by making these super soft Continue Reading »

•Update of the week•

Erika had her second outpatient appointment today. The surgical team feels she is healing well from surgery and her incisions all look good. They removed the tape from her big incision and took the stitches out of the chest tube sites. After Continue Reading »

•Fun with Auntie!•

Erika got to hang out with one of her favorite tiny humans today! It was definitely good for everyone’s soul! The fresh air and sunshine made this reunion just that much sweeter. Erika had a bit more pain today than she has the past couple of days Continue Reading »

•More good news!•

Erika’s PFTs were much improved from last week and her chest X-ray looked beautiful! Great news all day today! Erika had a good conversation with the lead transplant physician named... Erika (with a K too). They talked a lot about how to care for Continue Reading »

•Become an Organ Donor•

Organdonor.gov

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•She’s breaking out!•

21 days on the inside and now life outside of the hospital walls begins. Modern medicine is truly unbelievable. To think that 21 days ago she had gunky, mucous-filled CF lungs and today, she’s standing here with healthy, clear, CF-free lungs and Continue Reading »

•Look at her go!•

And she’s gonna walk herself right out of the joint tomorrow! Remember the last walking video!? Erika’s come SO far since then and it was only 2 weeks ago. She’s now consistently walking 1.5 miles per day without a walker! She’s speed Continue Reading »

I HAVE NEW LUNGS! 

In case you missed it, I got my new lungs! They are perfect for me and I am forever grateful to my donor and their family.Organ donation is such a selfless act, and as we celebrate an exciting future for me it is important to remember the grief that Continue Reading »

•Look who I found!•

The past couple of days have brought continued forward progress. Erika is 3 chest tubes down (3 to go). There was minimal drainage from the remaining tubes today so the surgical team is thinking removal of another tube or maybe 2 tomorrow. They Continue Reading »

•65 roses•

06/05 is 65 roses day. Since 1965 the term “65 roses” has been used by children with cystic fibrosis as a way to pronounce their disease. But just because it makes it easier to say, doesn’t make CF any easier to live with.

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•Supplemental O2... more like O who?!•

Erika has continued to make impressive, steady, forward progress. Despite dealing with persistent pain, significant lack of sleep, and medication induced hallucinations, she has remained positive, determined, and brave. She’s had two chest tubes Continue Reading »

•just BREATHE•

A day spent simply inhaling and exhaling is a great day. Erika and her new lungs seem to be getting the hang of each other.There isn’t a lot to report today which is a good thing. She has continued to take baby steps in the right direction and had Continue Reading »

•She’s WALKING!•

Last night and this morning we talked about baby steps. Gradual, forward progress. She might be taking baby steps in those cute blue socks, but boy does this seem like a giant leap forward! She’s exhausted and still hasn’t been able to sleep Continue Reading »

Another LONG night• 

Last night Erika’s blood tests showed her lungs weren’t fully expanding, therefore gases aren’t exchanging as well. They put her on a bipap machine (she’s still breathing on her own) to make it easier for her to breathe and put more pressure Continue Reading »

•EXTUBATED!•

In true Erika fashion, she struck a deal with the doctor. They had anticipated her being on the ventilator for 24 hours after second placement and had no plans to do it before then. What they don’t know yet but I think are quickly learning, is how Continue Reading »

Setback

Erika had a big setback last night. They told us nobody get through this without them, but this one seems kinda scary. There were two arterial lines which they use to most accurately measure her blood pressure as well as her blood gases (those Continue Reading »

•...and she’s VERTICAL•

Sort of... After a long, sleepless night due to significant pain, they were able to help her stand and move from the bed to the chair this afternoon. They have to slowly and carefully increase her pain medications as they can affect her blood Continue Reading »

•She’s BREATHING!!•

And all on her own! Her first word with new lungs was •BREATHE• They just pulled the tube and her O2 sats are at 97%! She’s on 3L of supplemental oxygen as a precaution. She’s been on 10L at home for a very long time so this is pretty Continue Reading »

The Day After

Erika for the most part had a good morning. They woke her up a little and she was able to follow commands and knew mom and Hunter were there. Mom played the videos of Isla and she definitely responded but then she got worked up. Her agitation is Continue Reading »

•She’s got FRESH PIPES!•

One of the surgeons just came to meet with us. Her new lungs are both in and working but she developed pulmonary edema (fluid in her lungs) so they will have to keep a close watch on her. They said this happens in about 20% of cases. As long as that Continue Reading »

• 1/2 Way•

• 1/2 Way•They just called and said the first lung is in. They are just sewing the second one in now. They didn’t give us anything as far as good or bad but it seems it went well because they said about 3 hours left. This process is Continue Reading »

The day she gets her new lungs.

They took her back for surgery and everything is set to move forward. Even after she went back we didnnow if it might still be a dry run. But now we know for sure it isn’t.They just came out and said that there was a complication with the Continue Reading »