Keith
10-07-2017, 03:15 AM
Hi everyone,
I live in south east North Carolina and was diagnosed with WG in May 2017. It has certainly been life changing and I am fortunate it was caught fairly early. I have vastly improved but do struggle at times with setbacks and uncertainty (not that anyone has certainty). This site has been helpful in a couple of hours of reading in many aspects. I hope I can contribute as well in the future.
My story below that I had written to family, friends and coworkers. I have learned more about the disease and treatment since then, but still have many questions and I know some just depends on how it goes ...
Take care!
Keith
------------------------------------------------------------------------------------------------------------
Back in March, I started experiencing random, seemingly unrelated ailments. I originally chalked them up to getting older; even though I've always been healthy. The issues progressively worsened and came to a head Mother’s day weekend. After many days in local and Duke Hospitals, I was diagnosed with a rare auto immune disease called GPA.
Looking back, early symptoms started with fatigue, allergies, and more colds than normal.
My right ear stopped up, started ringing and would not get better after several doctor visits (PCP and ENT) over several week. At times, it was causing severe pain all the way to my jawbone and teeth.
I later injured my right shoulder moving a trailer doing yard work. An MRI showed partial tear of rotator cuff, bone spur, and arthritis. Now I'm pretty sure this was from a previous dirt bike injury 4 years ago that I never got checked out. The pain was likely from GPA attacking the joint.
The following week, I went to bed fine and awakened with a locked right knee. I couldn't move it more than a couple of degrees. This got better as the day went on and was ok next day. The same day, my middle and index fingers on right hand became numb on the tips and inside edges. This happened as I was sitting in the Orthopedic office for follow up on the shoulder.
On Mother's Day weekend, the disease started to hit me hard. I had a high fever and started coughing up blood. We went to the Emergency Department Sunday afternoon. The X-Ray and CAT scan showed atypical pneumonia all over both lungs. This was atypical because pneumonia is normally in a few pockets in some of the lungs. The X-Ray looked like all my lungs were filled with spider webs.
I was admitted to the hospital and treated for double pneumonia; though the doctors were very suspicious this was something bigger. They suspected a type of Vasculitis. Blood was taken multiple times daily to run all sorts of tests. All common infectious diseases were ruled out. Per protocol due to coughing blood, I was quarantined for 3 days to make sure I didn’t have TB.
The doctors continued to treat for pneumonia with IV antibiotics while waiting for results of specialized tests looking for vasculitis. They were afraid to stop antibiotics in case I had a super infection that was not responding to antibiotics. I later looked into the side effects of the antibiotic; one was joint pain and tendon tears. Great.
While hospitalized, I experienced severe crippling joint pain that would move to different places each day. One day was shoulders, then knees, elbows, hip, etc. For a couple of days, I had little hope of getting better because nothing seemed to be working and I was in severe pain. I thought there was a good chance I might not make it.
I was discharged after 4 or 5 days and continued to take the antibiotic by pill while we waited on results. My chest x-rays didn’t look much better than when I arrived.
The fevers continued to come back every 3 - 4 hours. The bad part was I had to suffer a couple of hours each time because I could not have Tylenol but every 6 hours ... This went on for a couple of weeks …
I met with my Primary Care Physician and local Rheumatologist after being discharged. They also took blood to test kidney function. My PCP suggested I had GPA disease. This seemed likely after reading about the typical symptoms.
I received a call the next day from my PCP that I needed to rush to Duke Emergency Department. The blood test result she received showed the disease was now attacking my kidneys.
I was admitted to Duke after a few hours. They received all prior test results and history from my PCP which aided getting admitted and continuing to confirm the issue was GPA disease.
I was put on a different antibiotic in case this was a super infection that was not responding to prior antibiotics. After a couple days of more tests; the doctors felt comfortable to start treatment for GPA. Treatment starts with 3 maximum dosage steroid blasts trough IV. The blasts are then followed by large daily dosage of steroids by pills. Thank goodness they started the treatment when they did because this helped quickly with the joint pain, coughing blood, etc. My feet had previously become numb and tingling with shooting pains (still fighting this).
They performed a kidney biopsy for 100% verification of GPA (no fun, first stab missed the kidney and hit rib / nerves ...); but the results of that special test were many days away.
I then received an infusion of a chemo drug to suppress my immune system. This is to help keep my immune system from attacking my organs, joints, etc again.
My kidney indicators had stabilized but were still very high. I was discharged after 6 days. I’m continuing steroids and many other medicines at home, and have follow up infusions (once a week for 4 weeks, then repeat in 6 months, probably rest of my life).
With a suppressed immune system, I will need to be super vigilant to not be around sickness. My wife is looking to change jobs since she currently spends a lot of time counseling children in daycares and schools. It is regrettable because she absolutely loves the job.
If you are sick or feeling sick, please stay far away from me.
The good news is I am doing much better now and will be back in the office next week. The most nagging issue now is the numbness, pain and swelling in my Shrek feet.
I live in south east North Carolina and was diagnosed with WG in May 2017. It has certainly been life changing and I am fortunate it was caught fairly early. I have vastly improved but do struggle at times with setbacks and uncertainty (not that anyone has certainty). This site has been helpful in a couple of hours of reading in many aspects. I hope I can contribute as well in the future.
My story below that I had written to family, friends and coworkers. I have learned more about the disease and treatment since then, but still have many questions and I know some just depends on how it goes ...
Take care!
Keith
------------------------------------------------------------------------------------------------------------
Back in March, I started experiencing random, seemingly unrelated ailments. I originally chalked them up to getting older; even though I've always been healthy. The issues progressively worsened and came to a head Mother’s day weekend. After many days in local and Duke Hospitals, I was diagnosed with a rare auto immune disease called GPA.
Looking back, early symptoms started with fatigue, allergies, and more colds than normal.
My right ear stopped up, started ringing and would not get better after several doctor visits (PCP and ENT) over several week. At times, it was causing severe pain all the way to my jawbone and teeth.
I later injured my right shoulder moving a trailer doing yard work. An MRI showed partial tear of rotator cuff, bone spur, and arthritis. Now I'm pretty sure this was from a previous dirt bike injury 4 years ago that I never got checked out. The pain was likely from GPA attacking the joint.
The following week, I went to bed fine and awakened with a locked right knee. I couldn't move it more than a couple of degrees. This got better as the day went on and was ok next day. The same day, my middle and index fingers on right hand became numb on the tips and inside edges. This happened as I was sitting in the Orthopedic office for follow up on the shoulder.
On Mother's Day weekend, the disease started to hit me hard. I had a high fever and started coughing up blood. We went to the Emergency Department Sunday afternoon. The X-Ray and CAT scan showed atypical pneumonia all over both lungs. This was atypical because pneumonia is normally in a few pockets in some of the lungs. The X-Ray looked like all my lungs were filled with spider webs.
I was admitted to the hospital and treated for double pneumonia; though the doctors were very suspicious this was something bigger. They suspected a type of Vasculitis. Blood was taken multiple times daily to run all sorts of tests. All common infectious diseases were ruled out. Per protocol due to coughing blood, I was quarantined for 3 days to make sure I didn’t have TB.
The doctors continued to treat for pneumonia with IV antibiotics while waiting for results of specialized tests looking for vasculitis. They were afraid to stop antibiotics in case I had a super infection that was not responding to antibiotics. I later looked into the side effects of the antibiotic; one was joint pain and tendon tears. Great.
While hospitalized, I experienced severe crippling joint pain that would move to different places each day. One day was shoulders, then knees, elbows, hip, etc. For a couple of days, I had little hope of getting better because nothing seemed to be working and I was in severe pain. I thought there was a good chance I might not make it.
I was discharged after 4 or 5 days and continued to take the antibiotic by pill while we waited on results. My chest x-rays didn’t look much better than when I arrived.
The fevers continued to come back every 3 - 4 hours. The bad part was I had to suffer a couple of hours each time because I could not have Tylenol but every 6 hours ... This went on for a couple of weeks …
I met with my Primary Care Physician and local Rheumatologist after being discharged. They also took blood to test kidney function. My PCP suggested I had GPA disease. This seemed likely after reading about the typical symptoms.
I received a call the next day from my PCP that I needed to rush to Duke Emergency Department. The blood test result she received showed the disease was now attacking my kidneys.
I was admitted to Duke after a few hours. They received all prior test results and history from my PCP which aided getting admitted and continuing to confirm the issue was GPA disease.
I was put on a different antibiotic in case this was a super infection that was not responding to prior antibiotics. After a couple days of more tests; the doctors felt comfortable to start treatment for GPA. Treatment starts with 3 maximum dosage steroid blasts trough IV. The blasts are then followed by large daily dosage of steroids by pills. Thank goodness they started the treatment when they did because this helped quickly with the joint pain, coughing blood, etc. My feet had previously become numb and tingling with shooting pains (still fighting this).
They performed a kidney biopsy for 100% verification of GPA (no fun, first stab missed the kidney and hit rib / nerves ...); but the results of that special test were many days away.
I then received an infusion of a chemo drug to suppress my immune system. This is to help keep my immune system from attacking my organs, joints, etc again.
My kidney indicators had stabilized but were still very high. I was discharged after 6 days. I’m continuing steroids and many other medicines at home, and have follow up infusions (once a week for 4 weeks, then repeat in 6 months, probably rest of my life).
With a suppressed immune system, I will need to be super vigilant to not be around sickness. My wife is looking to change jobs since she currently spends a lot of time counseling children in daycares and schools. It is regrettable because she absolutely loves the job.
If you are sick or feeling sick, please stay far away from me.
The good news is I am doing much better now and will be back in the office next week. The most nagging issue now is the numbness, pain and swelling in my Shrek feet.