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Give Gregg a Fighting Chance Against CIDP

$10,000 of $10,000 goal

Raised by 105 people in 4 months
Created February 16, 2019
Fundraising Team
Background
Our fight began in 2013, when Gregg was diagnosed with Guillain-Barre Syndrome. He was admitted to the ICU because he was in excruciating pain, he couldn't walk, and he had trouble swallowing. We were given the diagnosis of GBS. We later learned that while he had the rapid acute onset that is characteristic of GBS , he actually had the chronic version of GBS: chronic inflammatory demyelinating polyneuropathy, or CIDP.

Over the past five years, we've discovered that Gregg responds well to intravenous immunoglobulins (IVIG). But it's expensive and difficult to get. When he gets his medication, he's himself. He can work, he's an active and loving father to our twin children, and he's a good person to be around. When he's not getting his medication and he relapses, he is exhausted, riddled with pain, and loses all interest in life. 

The medical system in America is not an easy one to understand. Our lives are now dominated by insurance companies, neurologists, pharmacies, and nursing companies. We have been told that he will need IVIG for the rest of his life. He had surgery for a port in November 2018 to make his infusions easier.

We resigned ourselves to meeting our out of pocket maximum every year because of how expensive his IVIG is , but we were not prepared for the insurance companies and pharmacies to prevent his treatment with red tape, delaying authorization approvals, and miscommunication with stakeholders (intentionally or otherwise). 

Current Situation
Most recently, his insurance company and specialty pharmacy delayed his treatment so that his health has deteriorated. His insurance company would only approve his IVIG for 6 weeks at a time, rather than the year that his neurologist requested. Over the past year with that insurance company and pharmacy, every single reauthorization request had been delayed significantly, usually by two to four weeks. He had a case manager and a medical advocate, but they weren't very effective.

His last nerve conductivity test showed signed of worsening. Yet we were still hopeful that we could get the pharmacy, the insurance company, and the nursing company all working together so that he could get his IVIG every two weeks. We were wrong.

His last IVIG treatment was on 12/31/18. He had been trying since 12/20 to be proactive and get his treatment scheduled for the new year, but once again, insurance delayed his treatment. It was at this point, his company decided to let him go.

As we are in Texas and are a right to work state, they did not need to give him a reason for termination: it just happened. But we could read between the lines. 

Currently, the entire family is my insurance and I am trying to keep the family afloat with my teacher's salary. The good news is that his new case manager is very helpful and proactive. His IVIG has been approved by both the new insurance company and the pharmacy, which is a feat in of itself. The problem is that the pharmacy is demanding that we pay for the IVIG before they ship it to us. The amount? $6,600. After 5 years of medical bills, we no longer have any emergency funds.

We are desperately trying to get Gregg his IVIG so that he doesn't deteriorate any further and so that he can find a new job.

How You Can Help
We are asking for help with paying for Gregg's current IVIG treatment, previous medical bills, and the start of his new deductible for when he does find a job. He's looking at paying three deductibles this year. The good news is that our out of pocket maximum is $6,500, so once we pay for this first treatment, we can focus on paying off past medical bills and saving for future medical expenses.
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What do *you* see in this picture?

What you *don't* see is that Gregg is currently getting his IVIG right now! He's able to snuggle with a sleepy Alexander at the same time because of his port. I love this picture so much.
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Gregg's last infusion went well and his port worked beautifully. I think he had been regretting it because it hadn't been getting use, but I think he sees the value of it now.

Healthwise, he's stopped deteriorating. I've seen an improvement with his attitude, but his body hasn't caught up yet. He's still tired easily, in pain, and is hard to hear on the phone. I know that seems like a weird thing to mention, but when he's struggling, I can't talk to him on phone because his voice is so weak. I'm hoping that with the treatment this weekend, his body will start recovering.

I'm also hoping that we can get him scheduled in for some outpatient PT and some other things he hasn't been able to do. I am trying to stay positive about this whole thing and approach it as an opportunity for him to get healthy.

The nurse is coming again today to finish the infusion from yesterday, so I'm trying to plan activities to get the kids out of the house to give Gregg a bit of peace. Eleanor wants to go to the grocery store and Alexander wants to look for books at thrift stores, so I think we have our Sunday plans. :)
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It's Sunday night, and the infusion went really well this weekend. His port worked like a charm and our new nurse is nice. She's really good with the kids, especially Alexander. He got to help take Daddy's temperature and was able to listen to his own heartbeat and belly. He was proud to be such a great helper. He may have a future in medicine! <3

Gregg was doing so well that on Day #2 (Sunday), his mom came over to give him a haircut! It was a full house: Gregg, me, my mom, the twins, and Leslie and Steve.

All in all, it was a great weekend. He has a headache, but that's normal for an infusion. Plus, we have medication for the NEXT infusion ready to go!

It may be wishful thinking on my part, but I really think I can already see a difference. His voice is stronger and he is able to play with the kids. He's been sleeping since the nurse left, but I think that's a good thing.

I'm hopeful for the first time in a long time.
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I know this may look like just another delivery after an Amazon binge, but I promise, it's not. These boxes contain the supplies for Gregg's infusion, which he gets TODAY AND TOMORROW!

I'll give another update when the nurse is here. <3
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$10,000 of $10,000 goal

Raised by 105 people in 4 months
Created February 16, 2019
Fundraising Team
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