Tiffany's Thread (updates and prayers, and a place where she can smack Joe in public when he needs it :)

[vollygirl]

It's a tug of war on my emotions. Thank you.

I know. The only thing you can do is turn it completely over to God and trust him. He's the only one with the answer. That's where your peace will come from, the only place you will find it. And I know what a massive task that is because we are human.

Praying so hard for you guys.

 

[Tin Man]

 

[Behr]

Tiffany texted me, dr at ucla texted her. They've done one transplant, and he has a couple more lined up. He thinks he can do this, despite her having infection. He wants to talk to her dr here again, and try to work out a plan. Idk, I'm legit scared she couldn't survive it, but she's hopeful for it. I told her my concerns, and she's worried, but just tired of living like she is. We also understand the reality that the antibiotics will be less effective, and they're causing her problems. I was worried enough about the hernia surgery, but now this possibly back on the table again. Ugh, I'm stressed. Just help us pray please.

I must have missed something. Transplant?

Now is a time I wish I was a wordsmith like Tin Man because I don't have a word that best describes my feelings over this whole thing.

I can't imagine what you must feel, and crank that up 5 times to Tiffany's level and Tin would be at a loss. I've prayed and asked God to help me understand why the doctors haven't been able to figure this out. (Im not making this about me, its just my way of explaining my thoughts).

Its one thing to not be able to fix a health issue, but with Tiffany it seems like a bunch of monkeys trying to screw a football on just trying to figure out what exactly is wrong.

Although I can't fully understand what she is feeling, I do understand how she can be "just tired of living like she is". That alone is a testament.

I pray that God helps Tiffany stop thinking about all of this and helps her just focus on Him and His promise.

 

[joevol33]

I must have missed something. Transplant?

Now is a time I wish I was a wordsmith like Tin Man because I don't have a word that best describes my feelings over this whole thing.

I can't imagine what you must feel, and crank that up 5 times to Tiffany's level and Tin would be at a loss. I've prayed and asked God to help me understand why the doctors haven't been able to figure this out. (Im not making this about me, its just my way of explaining my thoughts).

Its one thing to not be able to fix a health issue, but with Tiffany it seems like a bunch of monkeys trying to screw a football on just trying to figure out what exactly is wrong.

Although I can't fully understand what she is feeling, I do understand how she can be "just tired of living like she is". That alone is a testament.

I pray that God helps Tiffany stop thinking about all of this and helps her just focus on Him and His promise.

Concerning the transplant, Dr's at ucla recently completed the world's first bladder transplant. She was a candidate to be the first, but that septic shock scared everyone basically. While she doesn't have a bladder, they would do the transplant part of putting one in. Her not having one takes out about half the surgery of them having to remove a bad one. Instead of her having a hole in her stomach and wearing a bag to pee, they'd undo that, put a bladder and hook it all up like normal, and hopefully she'd eventually pee like normal. They were just scared if she's constantly got infections, that it'd be a possible life threatening issue during surgery. He thinks, after how the first one went, he could do it working with her dr here, and a plan with medication. Idk, we'll see what they figure out. We do appreciate the prayers, from all of you.

 

[malinoisvol]

O Lord, through the passion of the most sacred heart of Jesus, I beseech Thee to heal Tiffany. We thank you for giving her and her family the courage to face the situations so that others may see your perpetual light shining through them, a beacon of strength that overcomes setbacks, and reaffirms your precious love for all. In the name of Jesus Christ, King of Kings, please hear and bless this prayer O Heavenly Father. Amen

 

[joevol33]

Insurance called, said they'd spoken with the California dr earlier, and he sent them everything. Said everything is going through the process, she may have to do a telehealth since it's been a year at least, and we should have an update on the approval the Monday after Thanksgiving. They said it may take a couple of weeks to officially get, or find out, approval, because it has to go through some national thing being a transplant.

 

[Vjcvette]

An actual update, but not from Atlanta. I hadn't said anything, waiting on her to see the surgeon first to confirm. We don't know if any of this will help the infections, but there is a slight possibility it may. She's always had like a swoosh sound in her stomach (since removing her bladder), it's always been assumed it was just her stoma, and urine. One of her Dr's had an mri to check something, and saw a big hernia. The surgeon she saw today retrieved tons of scans from the past, and the hernia is there. She was amazed nobody ever addressed it, and says the swoosh is actually bowel content. Sge thinks there's a lot going on because of it, and that it could be contributing to the infections. She had a long, in depth, appointment with her, and she even said if fixing this doesn't help, she'd do everything she could to find her help. We don't know when yet, the dr is sending her scans to the radiology department to get the exact size, but she will be having surgery soon. You could feel the hardness in her stomach, but it's right on, and beside, her scar, so we just always assumed it was part of the scar. Also, she wants to get a plan in place with her infectious disease dr, so she'll have as little infection as possible when they do the surgery. Anything is worrisome with all she has going on, but the dr says a lot of her pain is from that, and there is the slight chance it'll help a little with the infections. I can't remember if I'd mentioned, and I'm already typing and too lazy to go back to see, but the antibiotics is becoming a problem. She's had a couple of confirmed seizures in the past month, and they're sure it's from the antibiotics. They're trying to give her as much break as they can without her getting septic, but she had to restart again today. Something has to give, so even a slight chance is pretty much worth the risk at this point. Just pray for her, and this upcoming surgery, and I'll update soon as I find out when.

Praying

 

[joevol33]

I dreamed about the baby, I can't wait

 

[vollygirl]

Did you already tell us the due date?

I dreamed about the baby, I can't wait

 

[joevol33]

Did you already tell us the due date?

January 29th I think it was. Daughter wants her to wait and be born in February, cause her birthday is in February

 

[joevol33]

Dr. Nassiri and I discussed your case earlier today. So glad that he feels you would be a good fit for the trial. It sounds like they’re having good success so far. You’re in good hands and just remember that Randi and I are here to support your and your family through this. Good luck and don’t hesitate to reach out if you need anything. I provided Magdalena with the NME (National Medical Excellence) phone number. That is the department that manages all of Aetna’s transplants and clinical trials.

 

[joevol33]

The above was a copy of the text from our head insurance guy. To approve it, they needed the dr to still list it as a trial, after they all did a conference call, he did, and they approved. Looks like tgis is happening. I'll be honest, I don't know what I'm feeling exactly. I'm excited, but scared. Idk how all this is going to go, from her, to the kids, timing, everything. Just say a prayer for us, her mostly, but me also.

 

[Vol since 77]

The above was a copy of the text from our head insurance guy. To approve it, they needed the dr to still list it as a trial, after they all did a conference call, he did, and they approved. Looks like tgis is happening. I'll be honest, I don't know what I'm feeling exactly. I'm excited, but scared. Idk how all this is going to go, from her, to the kids, timing, everything. Just say a prayer for us, her mostly, but me also.

Y'all are always in our prayers brother

 

[Tin Man]

 

[82_VOL_83]

You on a jet yet?

 

[joevol33]

You on a jet yet?

Soon, I'd say

 

[Vjcvette]

The above was a copy of the text from our head insurance guy. To approve it, they needed the dr to still list it as a trial, after they all did a conference call, he did, and they approved. Looks like tgis is happening. I'll be honest, I don't know what I'm feeling exactly. I'm excited, but scared. Idk how all this is going to go, from her, to the kids, timing, everything. Just say a prayer for us, her mostly, but me also.

Praying

 

[joevol33]

This is what Santa's overtime for the weekend was for. Our home computer died a few years ago, and she sent me this exact one a couple of weeks ago saying she needed it for stiff she does with sending to Dr's. I know it's not the fanciest, but it's the one she wanted, and I share the rest of our business . I told her she knows I suck at computer stuff, so I'd get her something else, and she could get her one after Christmas. She's had to do several things lately, and had to wait on little bit to get home with her laptop to do it. I rarely get to surprise her, but i think this will.

 

[82_VOL_83]

Jet Joe, jet!!!

 

[GordonC]

 

[GordonC]

This is what Santa's overtime for the weekend was for. Our home computer died a few years ago, and she sent me this exact one a couple of weeks ago saying she needed it for stiff she does with sending to Dr's. I know it's not the fanciest, but it's the one she wanted, and I share the rest of our business . I told her she knows I suck at computer stuff, so I'd get her something else, and she could get her one after Christmas. She's had to do several things lately, and had to wait on little bit to get home with her laptop to do it. I rarely get to surprise her, but i think this will.
View attachment 797712

shoulda got a new Kitchen Aid mixer
@Orangeslice13

 

[joevol33]

Jet Joe, jet!!!

Supposed to get an update next week I think she said