When life sucker punches you Updated

EvilHomer3k · Post by **EvilHomer3k** » Tue Apr 06, 2021 6:17 pm

I can't imagine what it must be like to live with everything your family have had to go through. I wish you and your family the best and I'm glad you got some good news after fearing the worst.

Grifman · Post by **Grifman** » Tue Apr 06, 2021 9:16 pm

Great news, thanks for sharing!

hitbyambulance · Post by **hitbyambulance** » Wed Apr 07, 2021 12:25 am

my mom got a new liver at the end of 2019, and it was my cousin who donated it

naednek · Post by **naednek** » Thu Jun 03, 2021 2:25 pm

Ethan says hi.

We're at the hospital to get a biopsy of his liver. This will give us the best picture of what he's dealing with. It will also determine if he could be placed on the latest miracle drug that does wonders for fighting Cystic Fibrosis. Hoping he can as it helps alot with lung function and other symptoms. We already seen the benefits of the drug that he is on now. He no longer needs enzymes to absorb nutrients from his food.

Sent from my SM-G975U using Tapatalk

AWS260 · Post by **AWS260** » Thu Jun 03, 2021 2:48 pm

Hello, Ethan! If you like books, my son Thomas recommends the Warrior Cats series.

McNutt · Post by **McNutt** » Thu Jun 03, 2021 4:12 pm

Good luck! Hopefully he gets access to that drug. Fingers crossed.

Zenn7 · Post by **Zenn7** » Thu Jun 03, 2021 7:16 pm

Come on good drugs, no whammies!

Good luck Ethan!

naednek · Post by **naednek** » Fri Jun 04, 2021 12:45 pm

All went well, he took it like champ, no complaining, no pain.

Thanks for the book series, I'll show him as he running out of things to read in his collection

Default · Post by **Default** » Fri Jun 04, 2021 1:27 pm

Pulling for you all.

AWS260 · Post by **AWS260** » Fri Jun 04, 2021 3:06 pm

naednek wrote: ↑Fri Jun 04, 2021 12:45 pm Thanks for the book series, I'll show him as he running out of things to read in his collection

There's like a gajillion books in the series. Thomas recommends starting with Warriors: The Prophecies Begin: 1-Into the Wild.

naednek · Post by **naednek** » Tue Jun 08, 2021 3:04 pm

I'm guessing I need to change the title of this thread...

WOW WOW WOW!

Test results came in today unexpected. We were expecting a 2 week turnaround.

Here is what came back

"The histologic findings of portal mild chronic inflammation and
focal bile ductular reaction are suggestive of mild biliary-type
injury. The presence of mild biliary-type injury, portal and
periportal fibrosis are consistent with mild cystic fibrosis
associated injury, given the patient's history of cystic fibrosis"
" looks like CF related liver inflammation with 'portal and periportal fibrosis with rare bridging (stage 2-3/4,
Batts-Ludwig stage)' - meaning no cirrhosis seen at the site of biopsy (stage 0 is normal and stage 4 is cirrhosis)".

Based on previous discussions from the Ultrasound and MRI it sounded like they thought he was in between Stage 3 and 4 with Cirrhosis

The biopsy came back saying there wasn't any cirrhosis found!

This wasn't what we were expecting. We were expecting what they saw in the MRI and this was to confirm it. It's actually the opposite. While he has liver disease no thanks to CF, it hasn't progressed as bad as initially believed and now it's possible he will be put on the new miracle drug that should be approved today by the FDA!
Praise GOD and thank you to everyone for your support the last few months as we have shared what Ethan was facing.
I'm so shaky with excitement I can't believe it!

Daehawk · Post by **Daehawk** » Tue Jun 08, 2021 3:25 pm

Awesome news! Cheers to the little guy.

McNutt · Post by **McNutt** » Tue Jun 08, 2021 4:04 pm

Wohoo!

Smoove_B · Post by **Smoove_B** » Tue Jun 08, 2021 4:07 pm

That's great news - happy to hear it for you and your family.

Holman · Post by **Holman** » Tue Jun 08, 2021 6:04 pm

Great news!

Alefroth · Post by **Alefroth** » Tue Jun 08, 2021 6:08 pm

Yass!

Kraken · Post by **Kraken** » Tue Jun 08, 2021 6:38 pm

Zenn7 · Post by **Zenn7** » Tue Jun 08, 2021 6:43 pm

WOOT!

Hipolito · Post by **Hipolito** » Tue Jun 08, 2021 9:54 pm

Great news!

Anonymous Bosch · Post by **Anonymous Bosch** » Tue Jun 08, 2021 10:01 pm

Congratulations on the terrific news, naednek. Sounds mighty encouraging indeed.

raydude · Post by **raydude** » Tue Jun 08, 2021 10:10 pm

Congratulations!

Lassr · Post by **Lassr** » Tue Jun 08, 2021 10:16 pm

Hrdina · Post by **Hrdina** » Wed Jun 09, 2021 12:15 am

<burns>Excellent</burns>

Unagi · Post by **Unagi** » Wed Jun 09, 2021 8:17 am

Wow, so nice to read.

Please don’t mind if I steal a little of the positive emotion for myself.

So happy for you guys.

hepcat · Post by **hepcat** » Wed Jun 09, 2021 9:43 am

Whoo hoo! This made my day. Thanks!

Hamlet3145 · Post by **Hamlet3145** » Wed Jun 09, 2021 9:45 am

naednek · Post by **naednek** » Wed Jun 09, 2021 11:10 am

And to add more good news. This was just approved. This one is a game changer and it will help 90% of people who have CF!

https://www.cff.org/News/News-Archive/2 ... Mutations/

Jeff V · Post by **Jeff V** » Wed Jun 09, 2021 7:55 pm

Awesome!

The Meal · Post by **The Meal** » Wed Jun 09, 2021 9:00 pm

Great news and hopefully the new drugs keep everything nominal as well!

Baroquen · Post by **Baroquen** » Wed Jun 09, 2021 10:58 pm

Wow! Happy to hear the good news. Hope the new drug brings more positive results!

naednek · Post by **naednek** » Tue Jun 15, 2021 7:26 pm

And just got done talking with his GI doctor and was given the green light to start him on the drug! Hoping to have it early July so he can deal with the initial side effects before school starts later that month. Lots of cleaning out of years of backed up mucus is in our future

Isgrimnur · Post by **Isgrimnur** » Tue Jun 15, 2021 7:28 pm

Daehawk · Post by **Daehawk** » Tue Jun 15, 2021 7:31 pm

Lassr · Post by **Lassr** » Wed Jun 16, 2021 10:57 am

Default · Post by **Default** » Wed Jun 16, 2021 9:03 pm

naednek · Post by **naednek** » Wed Aug 04, 2021 3:25 pm

So Ethan has been on the new med Trikafta for a month and his upper airway went up from 87% to 95% and his lower airway, where all the gunk settles from 89% to 109%!!!

Huge improvement. Ethan says he doesn't feel any different, but the results show otherwise. Tonight we get his liver results back. They are closely monitoring that and if it stays in the normal range or not a huge increase we keep going!

Send positive thoughts our way. This drug is a game changer and hoping it's part of tool chest for years to come.

Hamlet3145 · Post by **Hamlet3145** » Wed Aug 04, 2021 3:32 pm

naednek wrote: ↑Wed Aug 04, 2021 3:25 pm
Send positive thoughts our way. This drug is a game changer and hoping it's part of tool chest for years to come.

Great news!

Isgrimnur · Post by **Isgrimnur** » Wed Aug 04, 2021 4:14 pm

Holman · Post by **Holman** » Wed Aug 04, 2021 4:17 pm

Great news!

hepcat · Post by **hepcat** » Wed Aug 04, 2021 4:17 pm

Whoo hoo!