Opening up to be vulnerable & transparent
My husband of 29 years has been battling many health obstacles over the past year. We recently had saved for months, sold extra things and even paid for the flight in payments – now we’re ready for a trip to Australia to visit some car club familia. As the trip grew closer Joes health slowly got worse. Joe being Joe brushed it off and kept going. While in Australia he got progressively worse. We could all see it but the fear of not being able to come back into the states prevented him from seeking medical attention there. 3 days before we came back he was extremely fatigue, bed bound & completely jaundice. Coming home was gonna take it all out of him and it did! We literally drove from LAX to home dropped off luggage and went straight to the ER.
He was very weak, and very jaundice.
He was in liver failure, kidneys not working and gallbladder not working. Too much fluid on his belly was suffocating his organ’s. They admitted him immediately.
Apparently 14 years of intense seizure meds may have done too much damage that is irreversible on his liver.
We were hoping it was a “few days get you better situation”
That was not the case. After 4 days, medications, tests, cultures, steroids & protein treatments we have made only a slight progress in the right direction.
Now time to talk with a specialist, possibly getting flown into UCLA and a liver transplant. That’s today’s conversation June 14th which we just had with the specialist.
Update : Joe’s liver is making baby steps progress. But progress is progress right?
They’re starting a new med & are hoping it gives his liver that nudge to make more progress. They sent his blood to more specialist in Santa Barbara for a study since this is an anomaly (of course it is) ♀️
With being on only 1 income & disability since last October – to possibly loosing that 1 income to FML (1/2 the income) this is tough. If my husband goes to UCLA – I go to UCLA. Hoping for the best with staying local longer – this would be our hope. But this means longer hospital stay & more bills.
Think my favorite part was hospital billing coming into his room yesterday saying “your out of pocket for right now is $3,600 how did you want to pay that today” Gotta love American healthcare right?
That’s not including doctors cause they bill separate among many other things anesthesia, X-rays, ultrasound, specialists etc.
This will also not include being moved to UCLA and transplant if that’s the direction we go into.
My husband doesn’t ask for much. He really doesn’t, he always supports, always goes out of his way and always puts himself last!
He probably gonna get mad at me for doing a fundraiser (Joe is way too stubborn to ever ask for any help)
Relieving and financial burden off his shoulders at this time would be ideal. He needs to focus on getting better, healing his body & being stress free to continue living a long beautiful life!
I honestly don’t even know where to go with all of this. Way too overwhelming & stressful on everyone!
It’s as frustrating to him as anyone else to deal with this. Thinking all these years of taking care of 1 health problem, we have created a whole other irreversible one.
Starting a fundraiser is my call for help. We have a long battle ahead of us. Months of meds, doctors, specialists, ultrasounds, tests, bloodwork & who knows what else.
This also does not include UCLA costs if we end up in that direction.
Any help is help sharing, donating & helping in any way possible is all I can ask for!
Love you all so much and can not thank you from the bottom out my heart.
Help me help Joe.
PSA – doing an advanced directive with my husband was the most Grimm & heartbreaking thing I’ve ever done in my life!
