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Hello everyone. We didn’t want to disclose publicly the details of what’s going on with my husband as initially we chose to share privately to close friends and family, but here we are.
On April 3rd my husband was diagnosed with a very rare condition. Guillain-Barré syndrome (GBS). It’s rare neurological disorder in which your immune system mistakenly attacks part of the peripheral nervous system.
The treatment costs between $30,000 and $90,000. Insurance does not cover 100% of this. We also have a high deductible plan, so we still have that to meet. And even after that we have a 15% coinsurance amount up to $8400 catastrophic out of pocket maximum. When I last looked we still had over $5000 before we meet that.
Some information about treatment. A standard course of intravenous immunoglobulin shortens time to recovery in Guillain-Barré syndrome (GBS) when administered within the first 2 weeks. We were way outside of this time frame. However, approximately 20% of patients are unable to walk independently at 6 months.
Among adults recovering from Guillain-Barre syndrome: * About 80% can walk independently six months after diagnosis * About 60% fully recover motor strength one year after diagnosis * About 5% to 10% have very delayed and incomplete recovery. We are highly likely here After his 5 days on IVIG there has been zero progress. My husband has been unable to and will continue to be unable to work which leaves us to a one person income. Our bills don’t stop and neither will his recovery. There are a lot of things I need to do to our home to make it safe and functional for him to come back and we thankfully have friends that can help me install whatever it is we need. He is currently in Inpatient at the university of Washington rehabilitation (which is the best in the country) for physical and occupational therapy and will be there for another couple of weeks. When he is discharged he will have some home therapy followed by outpatient therapy and I will need to take time off from work to get him to and from. I also will need to take time off to learn how to care for him and to assist with safe transfers from his wheelchair to his bed, toilet, shower etc. At some point I will have exhausted my sick and PTO time and go unpaid, unless I get co-workers to donate some of their own personal time to me.
Here is where we humbly ask for help. We thought long and hard for this and we are not ones to ask for help, but we will need all the help we can get. We could use any help that anyone can give. There will be things that the insurance may not cover and won’t be able to afford on our own. We don’t know how long until he can walk independently or if he will ever be able to walk independently. But I send prayers up every day. We never prepared for this. Who does? Our life has completely flipped upside down and today we have accepted that it may never be the same.
Any help would be greatly appreciated. Whether it be $1, your Starbucks coffee cost for the day. Sharing this campaign. Praying for his recovery.
On April 3rd my husband was diagnosed with a very rare condition. Guillain-Barré syndrome (GBS). It’s rare neurological disorder in which your immune system mistakenly attacks part of the peripheral nervous system.
The treatment costs between $30,000 and $90,000. Insurance does not cover 100% of this. We also have a high deductible plan, so we still have that to meet. And even after that we have a 15% coinsurance amount up to $8400 catastrophic out of pocket maximum. When I last looked we still had over $5000 before we meet that.
Some information about treatment. A standard course of intravenous immunoglobulin shortens time to recovery in Guillain-Barré syndrome (GBS) when administered within the first 2 weeks. We were way outside of this time frame. However, approximately 20% of patients are unable to walk independently at 6 months.
Among adults recovering from Guillain-Barre syndrome: * About 80% can walk independently six months after diagnosis * About 60% fully recover motor strength one year after diagnosis * About 5% to 10% have very delayed and incomplete recovery. We are highly likely here After his 5 days on IVIG there has been zero progress. My husband has been unable to and will continue to be unable to work which leaves us to a one person income. Our bills don’t stop and neither will his recovery. There are a lot of things I need to do to our home to make it safe and functional for him to come back and we thankfully have friends that can help me install whatever it is we need. He is currently in Inpatient at the university of Washington rehabilitation (which is the best in the country) for physical and occupational therapy and will be there for another couple of weeks. When he is discharged he will have some home therapy followed by outpatient therapy and I will need to take time off from work to get him to and from. I also will need to take time off to learn how to care for him and to assist with safe transfers from his wheelchair to his bed, toilet, shower etc. At some point I will have exhausted my sick and PTO time and go unpaid, unless I get co-workers to donate some of their own personal time to me.
Here is where we humbly ask for help. We thought long and hard for this and we are not ones to ask for help, but we will need all the help we can get. We could use any help that anyone can give. There will be things that the insurance may not cover and won’t be able to afford on our own. We don’t know how long until he can walk independently or if he will ever be able to walk independently. But I send prayers up every day. We never prepared for this. Who does? Our life has completely flipped upside down and today we have accepted that it may never be the same.
Any help would be greatly appreciated. Whether it be $1, your Starbucks coffee cost for the day. Sharing this campaign. Praying for his recovery.