Donation protected
On October 11th after becoming ill on August 19th, my husband of 17 years was diagnosed with Wegener's disease. This disease affects less than 200,000 people a year! We have been told that he is in end stage renal failure and he is currently doing dialysis 3 days a week to see if his kidneys will recover. The doctor has already added him to the transplant list just in case the treatment doesn't work. He hasn't been able to work since August 19th.
We are traveling to the Mayo Clinic to see a doctor who has rearranged his schedule to get Jason there ASAP. Our first scheduled appointment was December 24 and once he read his records, he asked his staff to get him there sooner. November 26th if we can afford the trip is our appointment date. Plane tickets on a short notice are about $1,000 each and a hotel for one week is about $700 to $800 minimum.
We generally try to help those in need without regard to our own situation because we feel that everyone should have an opportunity to feel safe and loved. The time has come where we need to ask our friends, family and others for help to get him stable and even better, CURED!
Granulomatosis with polyangiitis, formerly called Wegener's. An uncommon disorder that causes inflammation of the blood vessels in your nose, sinuses, throat, lungs and kidneys. Because this disease can get worse quickly, early diagnosis is key to getting effective treatment. No one knows exactly what causes granulomatosis with polyangiitis. It appears to develop after an infection or other inflammation-causing event triggers an abnormal reaction from your immune system. With early diagnosis and appropriate treatment, you may recover from granulomatosis with polyangiitis within a few months. You may need to keep taking prescription drugs long term to prevent relapse. Even if you're able to stop treatment, you'll need to see your doctor regularly so that he or she can continue to monitor your condition closely.
Medications: Corticosteroids to control inflammation, drugs that suppress your immune system (Rituximab (Rituxan),
Other treatments
Plasma exchange. Also known as plasmapheresis, this treatment removes the liquid portion of your blood (plasma) that contains disease-producing substances. Then you receive an infusion of fresh plasma or a protein made by the liver (albumin), which allows your body to produce new plasma. In people who have very serious granulomatosis with polyangiitis, plasmapheresis can help the kidneys recover.
Kidney transplant. With advanced disease, you may need a kidney transplant to restore normal kidney function. Your eligibility to receive a donated kidney will depend, in part, on how your other organs have been affected by the disease.
The long version:
August 19th Jason began to feel ill. After seeing his physician almost daily and 2 ct's later, we were sent for a surgery consult on August 27th. The surgeon felt the pain and sickness was due to infected hernia mesh from his surgery 12 1/2 years ago and the cure was to have it removed. Surgery was 3 days later. The following Wednesday (09/05) Jason began to have pain and swelling in his fingers and severe pain in his shoulders. The surgeon said that this was normal and if he had any other issues to follow up with his primary doctor. We saw his doctor and even went to the ER with no results that week. On 9/12 we followed up with the surgeon who removed the staples and said you don't need to come see me again, just let me know when you are ready to go back to work and we will send the paperwork.
The pain and swelling continued into Jason's entire body. He began to lose weight (50 pounds in 6 weeks), his joint pain was so bad, he couldn't get out of bed without help from our 3 children (12, 13, & 15). Daily tasks became impossible. We continued seeing his doctor who said he had a high rate of inflammation in his body and wasn't for sure why, but gave him medicine and said that should help.
September 22nd, we made our 3rd ER visit and although the pain was so intense, they still said nothing was wrong. I pushed and got him admitted to the hospital where they found a spot on his kidney (clot, infection, or infarction, but doctor couldn't say what), pneumonia and still continuous severe pain, Jason was given steroids and seemed to be doing better. He was released from the hospital on 09/25 with a diagnosis of gout and aspiration pneumonia and within 24 hours of being discharged, was back to the same issues that sent him to the hospital.
On October 1st we went to an appointment with a rheumatologist who was recommended and contacted by our doctor. The normal wait time for an appointment is 9 to 12 months minimum. Due to no hospital records yet, just with observation, said that he was almost positive Jason was suffering from RA, but wanted to wait to get all the records before starting any medications. One week later, we arrived for his appointment and he didn't have RA or Gout, but the doctor didn't know what it was and needed to run another blood test. He would call with the results.
The very next evening (10/09), I arrived home and Jason was complaining about pain in his leg. There was a big knot. So, we again went to the ER to first be told that there was nothing wrong with him. I demanded that the doctor feel his leg and I wanted an ultrasound. He reluctantly ordered the ultrasound and once he received the results (clot), he came in and wanted to do a CT based on the severity of the pain during the ultrasound for the fear of additional clots being present in the heart and/or lungs. Upon his return to our room, the doctor said I'm sorry I missed this, you have pneumonia and I am going to admit you to ICU for observation. BUT, the hospital doctor refused and said that we needed to be transferred to receive the best care possible.
We arrived at the same hospital where he was just a few weeks before and the process started all over again. Luckily we saw the same pulmonologist who remembered us and did agree that the pneumonia was significantly worse and couldn't believe that he wasn't getting better. Once I asked about the kidney issues, he realized that this was more than just a case of gout. By the grace of God, this doctor and the rheumatologist knew each other on a personal basis and agreed to consult with each other since they worked for different hospitals. On Thursday I received a call from the rheumatologist and he had the answer, Wegeners Disease. Jason's lungs and kidneys were already affected.
The ball was rolling quickly within 1 hour of the results, he had a picc line inserted, was moved to ICU and was considered critical. We were introduced to a new world. Plasmapheresis was performed for 3 days and then he was transferred back to the "cancer" floor to receive the Rituxan (formerly given to lymphoma patients). Then 4 more days of plamapheresis were administered. The nephrologist was adamant about performing a kidney biopsy to determine how much damage has already occurred over the past 8 weeks. He ordered dialysis due to the fluid retention ( the 50 pound loss was now an 80 pound gain). and performed the biopsy. He told us that the kidneys did suffer major damage and that the current treatment may or may not help and he was going to put Jason on the transplant list. Our lives were turned upside down!
We continued treatments until the doctors felt Jason was stable enough to go home. He was released on November 7th after almost one month in the hospital. He is still not able to return to work, receives dialysis 3 times a week and we are still seeking answers as to what the next steps should be.
Hopefully, the Mayo clinic will help shed light on the rare condition and get Jason back on the road to well being!
Thank you for your time and support. Prayers are most accepted and if you can help financially in any way we THANK YOU!
We are traveling to the Mayo Clinic to see a doctor who has rearranged his schedule to get Jason there ASAP. Our first scheduled appointment was December 24 and once he read his records, he asked his staff to get him there sooner. November 26th if we can afford the trip is our appointment date. Plane tickets on a short notice are about $1,000 each and a hotel for one week is about $700 to $800 minimum.
We generally try to help those in need without regard to our own situation because we feel that everyone should have an opportunity to feel safe and loved. The time has come where we need to ask our friends, family and others for help to get him stable and even better, CURED!
Granulomatosis with polyangiitis, formerly called Wegener's. An uncommon disorder that causes inflammation of the blood vessels in your nose, sinuses, throat, lungs and kidneys. Because this disease can get worse quickly, early diagnosis is key to getting effective treatment. No one knows exactly what causes granulomatosis with polyangiitis. It appears to develop after an infection or other inflammation-causing event triggers an abnormal reaction from your immune system. With early diagnosis and appropriate treatment, you may recover from granulomatosis with polyangiitis within a few months. You may need to keep taking prescription drugs long term to prevent relapse. Even if you're able to stop treatment, you'll need to see your doctor regularly so that he or she can continue to monitor your condition closely.
Medications: Corticosteroids to control inflammation, drugs that suppress your immune system (Rituximab (Rituxan),
Other treatments
Plasma exchange. Also known as plasmapheresis, this treatment removes the liquid portion of your blood (plasma) that contains disease-producing substances. Then you receive an infusion of fresh plasma or a protein made by the liver (albumin), which allows your body to produce new plasma. In people who have very serious granulomatosis with polyangiitis, plasmapheresis can help the kidneys recover.
Kidney transplant. With advanced disease, you may need a kidney transplant to restore normal kidney function. Your eligibility to receive a donated kidney will depend, in part, on how your other organs have been affected by the disease.
The long version:
August 19th Jason began to feel ill. After seeing his physician almost daily and 2 ct's later, we were sent for a surgery consult on August 27th. The surgeon felt the pain and sickness was due to infected hernia mesh from his surgery 12 1/2 years ago and the cure was to have it removed. Surgery was 3 days later. The following Wednesday (09/05) Jason began to have pain and swelling in his fingers and severe pain in his shoulders. The surgeon said that this was normal and if he had any other issues to follow up with his primary doctor. We saw his doctor and even went to the ER with no results that week. On 9/12 we followed up with the surgeon who removed the staples and said you don't need to come see me again, just let me know when you are ready to go back to work and we will send the paperwork.
The pain and swelling continued into Jason's entire body. He began to lose weight (50 pounds in 6 weeks), his joint pain was so bad, he couldn't get out of bed without help from our 3 children (12, 13, & 15). Daily tasks became impossible. We continued seeing his doctor who said he had a high rate of inflammation in his body and wasn't for sure why, but gave him medicine and said that should help.
September 22nd, we made our 3rd ER visit and although the pain was so intense, they still said nothing was wrong. I pushed and got him admitted to the hospital where they found a spot on his kidney (clot, infection, or infarction, but doctor couldn't say what), pneumonia and still continuous severe pain, Jason was given steroids and seemed to be doing better. He was released from the hospital on 09/25 with a diagnosis of gout and aspiration pneumonia and within 24 hours of being discharged, was back to the same issues that sent him to the hospital.
On October 1st we went to an appointment with a rheumatologist who was recommended and contacted by our doctor. The normal wait time for an appointment is 9 to 12 months minimum. Due to no hospital records yet, just with observation, said that he was almost positive Jason was suffering from RA, but wanted to wait to get all the records before starting any medications. One week later, we arrived for his appointment and he didn't have RA or Gout, but the doctor didn't know what it was and needed to run another blood test. He would call with the results.
The very next evening (10/09), I arrived home and Jason was complaining about pain in his leg. There was a big knot. So, we again went to the ER to first be told that there was nothing wrong with him. I demanded that the doctor feel his leg and I wanted an ultrasound. He reluctantly ordered the ultrasound and once he received the results (clot), he came in and wanted to do a CT based on the severity of the pain during the ultrasound for the fear of additional clots being present in the heart and/or lungs. Upon his return to our room, the doctor said I'm sorry I missed this, you have pneumonia and I am going to admit you to ICU for observation. BUT, the hospital doctor refused and said that we needed to be transferred to receive the best care possible.
We arrived at the same hospital where he was just a few weeks before and the process started all over again. Luckily we saw the same pulmonologist who remembered us and did agree that the pneumonia was significantly worse and couldn't believe that he wasn't getting better. Once I asked about the kidney issues, he realized that this was more than just a case of gout. By the grace of God, this doctor and the rheumatologist knew each other on a personal basis and agreed to consult with each other since they worked for different hospitals. On Thursday I received a call from the rheumatologist and he had the answer, Wegeners Disease. Jason's lungs and kidneys were already affected.
The ball was rolling quickly within 1 hour of the results, he had a picc line inserted, was moved to ICU and was considered critical. We were introduced to a new world. Plasmapheresis was performed for 3 days and then he was transferred back to the "cancer" floor to receive the Rituxan (formerly given to lymphoma patients). Then 4 more days of plamapheresis were administered. The nephrologist was adamant about performing a kidney biopsy to determine how much damage has already occurred over the past 8 weeks. He ordered dialysis due to the fluid retention ( the 50 pound loss was now an 80 pound gain). and performed the biopsy. He told us that the kidneys did suffer major damage and that the current treatment may or may not help and he was going to put Jason on the transplant list. Our lives were turned upside down!
We continued treatments until the doctors felt Jason was stable enough to go home. He was released on November 7th after almost one month in the hospital. He is still not able to return to work, receives dialysis 3 times a week and we are still seeking answers as to what the next steps should be.
Hopefully, the Mayo clinic will help shed light on the rare condition and get Jason back on the road to well being!
Thank you for your time and support. Prayers are most accepted and if you can help financially in any way we THANK YOU!
Organizer
Linley McConnell Kilgore
Organizer
Tecumseh, OK