Donation protected
Joe and his wife, Renee and their two kids, Josie, age 13 and Kody age 12 have had their life changed dramatically. Renee continues to work for the 4-H youth development program while Joe has not been able to work much this summer and will not be able to work this winter and may not be able to work moving forward. Joe has also been a volunteer with the 4-H program for many years as well.
Almost 2 years ago Joe went to the Doctor because his muscles and joints were increasingly becoming sore and stiff. He couldn’t open a jar or make a fist. They thought it was Lymes disease. His doctor ran blood tests that came back with no tick born disease but an elevated CK level (enzyme known as Creatine Kinase which is a protein that appears with muscle damage) level and RA level (rheumatoid arthritis). His doctor referred him to a rheumatologist who began a treatment of immune suppressants as he was sure it was autoimmune related. The symptoms persisted and new ones appeared. After treatment for 11 months with continued decrease in function and little response to the immune suppressants and a CK level that had spiked to 2300. (normal for a man is 230) the rheumatologist referred him to the Mayo Clinic in Rochester, MN. Joe and his wife, Renee traveled to the Mayo to begin their testing. They spent two weeks of testing with many different doctors. Joe’s diagnosis was Myositis, Interstitial Lung Disease, Connective Tissue Disease and Inflammatory Arthritis. Myositis is a muscle disease that causes muscle injury and death of muscles and is often hard to treat. Interstitial Lung Disease which causes fibrosis and scarring and stiffening of the lungs making it difficult to breathe. Connective Tissue disease is inflammation to the connective structures that hold the body together. Inflammatory Arthritis which is characterized by inflammation of the joints. Joe has a loss of muscles in the esophagus which reduces his ability to swallow and eat normally. He has also now had antibodies show up that indicate the occurrence of Scleroderma which with the increased treatment schedule puts him at risk for Schleroderma Renal Crisis. He also must monitor his blood pressure twice a day and must have an Echocardiogram regularly to ensure that his heart is functioning properly.
There are no cure for these diseases only management through treatment. The Mayo clinic started Joe on an IV Immunoglobulin (IVIG) infusion therapy. He had daily infusion treatment for 1 week then 3 weeks off and then 1 infusion a month through September. They also started him on an IV infusion of Solu-Medrol weekly through September. Joe and Renee traveled back to the Mayo for appointments on October 7th and the news was not as good as they had hoped. Joe’s blood work was trending the right direction but his muscles were not responding to the treatment like they had hoped. He has continued to experience muscle depletion, pain and inflammation. His outer fingers on each hand have lost control and curl making it a struggle to grasp things and hold onto the handles of the equipment for work. The Mayo has now increased the treatment plan and Joe will have IVIG infusion for a week straight monthly and continue with the weekly Solu-Medrol IV. They have also told him to significantly reduce his activity so he doesn’t further inflame or damage his muscles. His muscles, when worked, break and are not rebuilding or repairing themselves like they should so he has difficulty with the strength and mobility of his legs. He was fitted for leg braces in July to help support his feet and lower legs. This has increased the difficulty he has in doing all aspects of work. Joe works in the field of sewer installation and excavation. This work takes him in and out of equipment and excavation trenches for shoveling. All which have become increasingly difficult and restricted his ability to do his job and now with the order to reduce activity he has not been able to work much if at all.
The IVIG infusion therapy is a costly treatment. It costs a little over $18,000 per treatment. Joe has 5 of these treatments a month. The weekly Solu-Medrol treatment costs a little over $1,800 per treatment. Joe has 4 of these each month. Joe and Renee have worked to make ends meet during the last couple years. With the increase in muscle damage, soreness and joint pain Joe has not been able to work full time most of the summer and will be laid off shortly. The trips to the Mayo Clinic with hotel stays, food and travel add up quickly on top of the treatment costs. Joe and Renee do have insurance but that does not cover everything and with the lack of work this summer and the lack of the ability to work moving forward has put a hardship on the family.
Joe would give anything to be able to do the things he used to do with his kids like play catch with Kody and shoot baskets with Josie. We, Joes’ friends, have set up this page to help alleviate the financial burden on Joe and his family and assist in getting the essentials such as medical funding and a living expenses to name just a few.
Thank you for your generous support to help Joe and his family.
Almost 2 years ago Joe went to the Doctor because his muscles and joints were increasingly becoming sore and stiff. He couldn’t open a jar or make a fist. They thought it was Lymes disease. His doctor ran blood tests that came back with no tick born disease but an elevated CK level (enzyme known as Creatine Kinase which is a protein that appears with muscle damage) level and RA level (rheumatoid arthritis). His doctor referred him to a rheumatologist who began a treatment of immune suppressants as he was sure it was autoimmune related. The symptoms persisted and new ones appeared. After treatment for 11 months with continued decrease in function and little response to the immune suppressants and a CK level that had spiked to 2300. (normal for a man is 230) the rheumatologist referred him to the Mayo Clinic in Rochester, MN. Joe and his wife, Renee traveled to the Mayo to begin their testing. They spent two weeks of testing with many different doctors. Joe’s diagnosis was Myositis, Interstitial Lung Disease, Connective Tissue Disease and Inflammatory Arthritis. Myositis is a muscle disease that causes muscle injury and death of muscles and is often hard to treat. Interstitial Lung Disease which causes fibrosis and scarring and stiffening of the lungs making it difficult to breathe. Connective Tissue disease is inflammation to the connective structures that hold the body together. Inflammatory Arthritis which is characterized by inflammation of the joints. Joe has a loss of muscles in the esophagus which reduces his ability to swallow and eat normally. He has also now had antibodies show up that indicate the occurrence of Scleroderma which with the increased treatment schedule puts him at risk for Schleroderma Renal Crisis. He also must monitor his blood pressure twice a day and must have an Echocardiogram regularly to ensure that his heart is functioning properly.
There are no cure for these diseases only management through treatment. The Mayo clinic started Joe on an IV Immunoglobulin (IVIG) infusion therapy. He had daily infusion treatment for 1 week then 3 weeks off and then 1 infusion a month through September. They also started him on an IV infusion of Solu-Medrol weekly through September. Joe and Renee traveled back to the Mayo for appointments on October 7th and the news was not as good as they had hoped. Joe’s blood work was trending the right direction but his muscles were not responding to the treatment like they had hoped. He has continued to experience muscle depletion, pain and inflammation. His outer fingers on each hand have lost control and curl making it a struggle to grasp things and hold onto the handles of the equipment for work. The Mayo has now increased the treatment plan and Joe will have IVIG infusion for a week straight monthly and continue with the weekly Solu-Medrol IV. They have also told him to significantly reduce his activity so he doesn’t further inflame or damage his muscles. His muscles, when worked, break and are not rebuilding or repairing themselves like they should so he has difficulty with the strength and mobility of his legs. He was fitted for leg braces in July to help support his feet and lower legs. This has increased the difficulty he has in doing all aspects of work. Joe works in the field of sewer installation and excavation. This work takes him in and out of equipment and excavation trenches for shoveling. All which have become increasingly difficult and restricted his ability to do his job and now with the order to reduce activity he has not been able to work much if at all.
The IVIG infusion therapy is a costly treatment. It costs a little over $18,000 per treatment. Joe has 5 of these treatments a month. The weekly Solu-Medrol treatment costs a little over $1,800 per treatment. Joe has 4 of these each month. Joe and Renee have worked to make ends meet during the last couple years. With the increase in muscle damage, soreness and joint pain Joe has not been able to work full time most of the summer and will be laid off shortly. The trips to the Mayo Clinic with hotel stays, food and travel add up quickly on top of the treatment costs. Joe and Renee do have insurance but that does not cover everything and with the lack of work this summer and the lack of the ability to work moving forward has put a hardship on the family.
Joe would give anything to be able to do the things he used to do with his kids like play catch with Kody and shoot baskets with Josie. We, Joes’ friends, have set up this page to help alleviate the financial burden on Joe and his family and assist in getting the essentials such as medical funding and a living expenses to name just a few.
Thank you for your generous support to help Joe and his family.
Organizer and beneficiary
Amy De Groot
Organizer
Pequot Lakes, MN
Renee Hink Kostick
Beneficiary