Some our members would like to share their vasculitis stories with you.
My Vasculitis Story – Microscopic Polyangiitis (MPA)
by Barbara Tuntoglu
My story begins as so many vasculitis patient stories do with a long period (7 years) of multiple symptoms but no diagnosis. I knew I was ill but had difficulty convincing my doctors. I kept having bouts of atypical pneumonia, chronic pain, worsening asthma, various skin rashes, and habitual and steadily worsening fatigue and weakness. I was sent from specialist to specialist. I was told by some that I was probably just a little stressed and might benefit from a holiday while others said I appeared to have a ‘lupus-like’ illness but that it would be necessary for the disease to declare itself more significantly for a diagnosis to occur. This was very frustrating. I decided to seek help elsewhere and went to a naturopath, changed my diet, tried acupuncture, and took up yoga in order to try to improve my health but nothing worked. In August 2010 I was rushed to hospital with sudden breathing difficulties. The diagnosis was again atypical pneumonia so I was put on intravenous antibiotics and two weeks later went home on oxygen. I remained off work until Thanksgiving and then returned to work at the YMCA where I was the executive assistant to the Chief Operating Officer. Six weeks later I had to leave my job and go on disability because I was too weak to continue working.
In January 2011, I was admitted to Sunnybrook Hospital in Toronto with, again, severe difficulty breathing and a blood oxygen level of 75 (normal for me was 96). I felt like I was dying. I knew it was serious because while still in emergency I was visited by teams of doctors from Internal Medicine, Contagious Diseases, Rheumatology, Respirology, Dermatology and Nephrology. I was admitted and after two weeks of tests and a variety of medications was finally diagnosed with p-anca vasculitis, specifically Microscopic Polyangiitis (MPA). When I was given the news I was elated because at last we could start treating the illness and I could get on with my life. I was immediately pulsed with 500 mg per day (3 days) of prednisone and then continued with 100 mg per day and was also started on cyclophosphamide an immunosuppressant. After another two weeks, I was sent home again on oxygen. I was optimistic and determined to return to work in no more than 6 months. The old saying ‘we plan, God laughs’ comes to mind because I am writing this in 2014 and I am still unable to return to any semblance of my old life.
Within the first 6 months I did improve somewhat and was able to wean myself off the oxygen in 8 weeks. I did, however, have severe pain in my arms and legs, chronic muscle weakness, shortness of breath, and no reprieve from the significant fatigue. I had difficulty focussing on anything for any amount of time. My sleep was disrupted, I felt nauseated all the time, and I could not walk without a cane and even then only for very short distances. I could not tell which symptoms were caused by the disease itself and which were due to the medications. As time went by I was switched to Methotrexate and my prednisone dosage was slowly lowered. By November of 2011 I began to realize that I was no longer improving but I thought I had likely just hit a temporary plateau.
In early January 2012, I developed a strange high pitched cough. On the morning of Friday, January 13th I awoke feeling very unwell and with a little tightness in my chest. I called my doctor to ask his advice, left a voice mail message and fell asleep waiting for his call. I woke up 6 hours later realizing that I was having great difficulty breathing. My husband rushed home from work and wanted to take me to see my doctor at Sunnybrook. We live about 40 minutes north but I knew that I needed oxygen ASAP so we called an ambulance and I was taken to the closest hospital, Southlake Regional Health Centre in Newmarket Ontario. I was immediately put on oxygen and admitted.
Within the first two days I had x-rays, CAT scan, blood tests, and finally was sent for a bronchoscopy to determine whether I had a normal pneumonia or whether this was a vasculitis flare. I was sedated and the next thing I knew I was coming out of the sedation in the ICU of Mt. Sinai hospital in downtown Toronto 8 days after the bronchoscopy. What happened? When they attempted the procedure they found a large amount of blood in my lungs and had to put me into a drug induced coma in order to stabilize me. I was in critical condition. The Southlake doctors felt that I might have a better chance at Mt. Sinai as part of the Pexivas clinical trial. This is an international clinical trial combining standard treatments of immunosuppressant medications and corticosteroids with 7 consecutive days of plasma exchange (similar to dialysis). Mount Sinai has a vasculitis clinic run by two rheumatology specialists, Dr. Simon Carette and Dr. Christian Pagnoux. I had been transferred to Mt. Sinai and admitted under their care. My husband, Russell, signed all the necessary forms and treatment, including the plasma exchange, began while I was still in coma. Drs. Carette and Pagnoux were extremely supportive while I was in the hospital and for all follow-up care.
I am happy to be involved in the clinical trial and would encourage anyone who gets the chance to help in research to do so. By being involved we can not only help ourselves but others with Vasculitis. While there are many similarities in vasculitis patient stories, these diseases can affect people in many different ways as well. Two people can have the same disease with completely different symptoms. Patients respond differently to the medications. There are no rules other than you must be treated or risk death within 5 years. Some people have only one flare and then go into remission while others never achieve full remission but early diagnosis is best to avoid organ damage.
For me, this illness has been an incredible journey. Unfortunately, since the coma I need to use a wheelchair most of the time, still have big problems with pain, sleeplessness, weakness, asthma, etc. I also had another flare in 2013, had to have cataracts removed from both eyes as a result of prednisone use and have suffered other side effects from the many other medications that I have required. I have been very fortunate. This illness has given me greater insight, empathy and gratitude. I have enriched relationships with family and friends who have supported me throughout the years. I cannot say enough about Russell who is truly my hero. He not only is a wonderful caregiver, he makes me laugh every day and that truly is the best medicine.If you, or a loved one, are newly diagnosed and need support or commiseration please feel comfortable in getting in touch with me at btuntoglu@rogers.com
Cheers,
Barbara