KJsteps
05-05-2016, 12:56 PM
Age 17 – I first heard the word autoimmune during a routine eye exam at a local ophthalmology school where students were brought in to see my case of uveitis I had just been diagnosed with.
Continued eye issues: (beginning year 2000)
Conjunctivitis
Chronic eye infections
Chronic corneal ulcers
Map-Dot-Fingerprint Dystrophy
Chronic evaporative dry eye syndrome
Off white mucous drainage from tear ducts
*Multiple biopsies on eyeball growths showing abnormal cells which were never developed enough to identify. Ophthalmologist watching as he felt they were a precursor to a type of lymphoma. (or was it the Granulomatosis Polyangitis showing its ugly head?)
Other long term symptoms: (18-24 months)
Excess mucous production
Chronic cough with clear/white foamy mucous
Constant Runny nose
Recent History
October 2013
Diagnosis: Heart palpitations
4 day hospital stay for testing.
Diagnosis: Palpitations
March 2014
Visible blood in urine (cast offs?)
Diagnosis: Kidney Hemangiomas
Follow-up: yearly scans to monitor any tumor growth.
September 2015:
Diagnosis: Pericardial Effusion with AFib
Cause of inflammation unknown (4 day hospital stay)
Other symptoms during incident:
Excessive urination (every 15 mins during initial AFib)
Deep Pain running from ears to lymph nodes near throat
*Continued chronic cough with excessive mucous
*Continued runny nose
Prescribed Apixaban/Eliquis for AFib (blood thinner)
Rheumatologist brought in to look at possible cause of Pericardial inflammation. Tons of tests just showed a slightly elevated rheumatoid level. No follow up needed. I don't see results for an ANCA test, so apparently one wasn't run. Lupus, etc. ruled out.
March 17 2016
Cellulitis -2 rounds of antibiotics
Odd discoloration in lower outer calf on each leg
Follow up provider recognized the bruising not typical of Venous ulcerations, "I have no idea what that is."
April 1 2016
Outer lower calves on both legs turning dark, unusual bruising. Bruising rising to the surface, breaking though skin as Eschar/scab.
April 5 2016
Cardiologist visit to discuss possible blood thinner issue causing leg wounds.
Outcome: AFib risk still outweighing possible blood thinner reaction. Continue using Eliquis.
Test: ultrasound of lower extremities to check circulation. No issues found.
April 8 2016
Primary care visit
Leg wounds breaking open and weeping, draining.
Again recognized as not being circulation wounds, " I have no idea what those are"
Legs very swollen, started on a Diuretic
Wound care treatment started (3x week)
April 15 2016
Leg wounds need debridement - Stop blood thinner for outpatient surgery of wound in 3 days.
April 16 2016
Bright red mucous cough.
Headed to emergency room 100 miles away, where cardiologist is located.
Admitted to hospital - 4 day stay, countless tests
Diagnosis: acute kidney failure, Lung issues, possible Vasculitis. Released before test results returned.
April 22 2016
Test Results: ANCA Vasculitis
Started methylprednisolone for 3 days to get me through to OHSU admitting
April 25th 2016 (Admitted to OHSU)
Diagnosis: Granulomatosis Polyangitis affecting ENT, Lungs, Kidneys, Skin, (likely heart and eyes)
Admitted to OHSU for testing. Multiple tests including Kidney Biopsy to rule out various issues and to confirm diagnosis.
Start on 60 mg Prednisone
First In-patient treatment with Rituximab
“It appears to be a textbook case” – Really?! So happy to hear those words!
Kidney function has improved nearly back into the low normal range thankfully!
Still waiting on Kidney biopsy results.
Current:
Treatment has been approved and I receive second infusion tomorrow. After reading some of your stories here, I realize just how fortunate I am to have such a quick and positive diagnosis, although I honestly feel this issue has been plaguing me for much of my adult life.
I have had to stop searching the internet in the evenings for information about this disease… the steroids are making it difficult to sleep to say the least!
So that’s my story. Any advice happily accepted on how to get decent sleep while on the Prednisone.
I still need to learn more about how this can affect my eyes, and much more about the ground glass opacity in my lungs. Links/other information greatly appreciated.
Currently under the care of a Rheumatology, Nephrologist, and Cardiologist.
Regards,
Karen S
Continued eye issues: (beginning year 2000)
Conjunctivitis
Chronic eye infections
Chronic corneal ulcers
Map-Dot-Fingerprint Dystrophy
Chronic evaporative dry eye syndrome
Off white mucous drainage from tear ducts
*Multiple biopsies on eyeball growths showing abnormal cells which were never developed enough to identify. Ophthalmologist watching as he felt they were a precursor to a type of lymphoma. (or was it the Granulomatosis Polyangitis showing its ugly head?)
Other long term symptoms: (18-24 months)
Excess mucous production
Chronic cough with clear/white foamy mucous
Constant Runny nose
Recent History
October 2013
Diagnosis: Heart palpitations
4 day hospital stay for testing.
Diagnosis: Palpitations
March 2014
Visible blood in urine (cast offs?)
Diagnosis: Kidney Hemangiomas
Follow-up: yearly scans to monitor any tumor growth.
September 2015:
Diagnosis: Pericardial Effusion with AFib
Cause of inflammation unknown (4 day hospital stay)
Other symptoms during incident:
Excessive urination (every 15 mins during initial AFib)
Deep Pain running from ears to lymph nodes near throat
*Continued chronic cough with excessive mucous
*Continued runny nose
Prescribed Apixaban/Eliquis for AFib (blood thinner)
Rheumatologist brought in to look at possible cause of Pericardial inflammation. Tons of tests just showed a slightly elevated rheumatoid level. No follow up needed. I don't see results for an ANCA test, so apparently one wasn't run. Lupus, etc. ruled out.
March 17 2016
Cellulitis -2 rounds of antibiotics
Odd discoloration in lower outer calf on each leg
Follow up provider recognized the bruising not typical of Venous ulcerations, "I have no idea what that is."
April 1 2016
Outer lower calves on both legs turning dark, unusual bruising. Bruising rising to the surface, breaking though skin as Eschar/scab.
April 5 2016
Cardiologist visit to discuss possible blood thinner issue causing leg wounds.
Outcome: AFib risk still outweighing possible blood thinner reaction. Continue using Eliquis.
Test: ultrasound of lower extremities to check circulation. No issues found.
April 8 2016
Primary care visit
Leg wounds breaking open and weeping, draining.
Again recognized as not being circulation wounds, " I have no idea what those are"
Legs very swollen, started on a Diuretic
Wound care treatment started (3x week)
April 15 2016
Leg wounds need debridement - Stop blood thinner for outpatient surgery of wound in 3 days.
April 16 2016
Bright red mucous cough.
Headed to emergency room 100 miles away, where cardiologist is located.
Admitted to hospital - 4 day stay, countless tests
Diagnosis: acute kidney failure, Lung issues, possible Vasculitis. Released before test results returned.
April 22 2016
Test Results: ANCA Vasculitis
Started methylprednisolone for 3 days to get me through to OHSU admitting
April 25th 2016 (Admitted to OHSU)
Diagnosis: Granulomatosis Polyangitis affecting ENT, Lungs, Kidneys, Skin, (likely heart and eyes)
Admitted to OHSU for testing. Multiple tests including Kidney Biopsy to rule out various issues and to confirm diagnosis.
Start on 60 mg Prednisone
First In-patient treatment with Rituximab
“It appears to be a textbook case” – Really?! So happy to hear those words!
Kidney function has improved nearly back into the low normal range thankfully!
Still waiting on Kidney biopsy results.
Current:
Treatment has been approved and I receive second infusion tomorrow. After reading some of your stories here, I realize just how fortunate I am to have such a quick and positive diagnosis, although I honestly feel this issue has been plaguing me for much of my adult life.
I have had to stop searching the internet in the evenings for information about this disease… the steroids are making it difficult to sleep to say the least!
So that’s my story. Any advice happily accepted on how to get decent sleep while on the Prednisone.
I still need to learn more about how this can affect my eyes, and much more about the ground glass opacity in my lungs. Links/other information greatly appreciated.
Currently under the care of a Rheumatology, Nephrologist, and Cardiologist.
Regards,
Karen S