Wegener’s Granulomatosis Support Group of Canada

Personal Speech at the October 16, 1999 meeting – by Donna Wall

It is, to say the least, not an easy job to expound on the happening of the last couple of years.  So much evolved since April of 1997, with a good portion almost a blur because of not only the physical, but the memory problems that were quite significant, especially during the first year.  I will try to be short and to the point in my synopsis.

As many of you are aware, I am an avid genealogist, namely, I hunt for my family tree.  On April 16^th to the 19^th, 1997, I went with a friend to Toronto on a hunting trip at the Archives.  I happened to mention that my shoes were getting strangely uncomfortable and couldn’t find a logical reason for it.  By the next day, when we came home, my feet were noticeably swollen.  Being a week-end, I did a few usual home remedy treatments, ie: soak my feet, put them up above my heart, lounging in my recliner etc. but nothing seemed to change.  On Monday, the 21^st, I saw my family doctor who treated me for Edema with a diuretic.  By the end of the week there was no improvement and Saturday, the 26^th, I woke up with ugly, black, fluid filled ulcers on my ankles, which, needless to say, were painful.  Bob took me to a walk-in clinic rather than the hospital emergency ward as I was short of time that day.  I was singing at a wedding in the afternoon and I wasn’t about to miss doing that, if I could help it.  The lady doctor examined by legs and commented on the red spots that had mysteriously appeared all over them.  When I confirmed that I already had a number of arthritic conditions, she prescribed 50 mg. Prednisone and told me to see my doctor on Monday.  She didn’t know exactly what the situation was but felt it was connected to my arthritis.

Monday morning arrived with me in very excruciating pain at which time I informed Bob that I didn’t want to wait for the doctor’s office to open but to take me to the emergency department at Cambridge Hospital.  I was immediately taken in and upon examination, the doctor on duty ordered blood and urine tests.  I am still not sure if the staff knew that their conversation was overheard by Bob and myself, but the bottom line was that – looks like we have a double amputation on our hands, at least below the knees.  (The flesh eating disease was rearing its ugly head in numerous areas, including Waterloo County)  This, to say the least, was very frightening.  Shortly thereafter, the specimen tests returned and the doctor asked about my Rheumatologist, Dr. Brian Hanna, as he felt I should see him as the tests were not conclusive but pointing in his direction.  Fortunately, he is at Cambridge on Mondays and I was able to be taken to his examination room.  After a very brief look at my legs, he said that he wanted me in the Rheumatology Department at St. Mary’s Hospital that day and we heard him talk to the head nurse there, giving her a list of procedures to be done that was as long as your arm.  For the next three weeks, I was bombarded with tests including muscle biopsies, an angiogram, nerve tests and many others.  Dr. Louise Vitou was brought into the scenario as my kidneys were shutting down.  I was finally allowed to go home with a multitude of appointments and more tests over the next couple of months.  On June 17, I had a kidney biopsy and after a few weeks of anxious waiting, Dr. Vitou gave me the news.  I had this strange auto-immune disease with the formidable name of Wegener’s Granulomatosis.  I am told that a few months is s relatively short time for a confirmed diagnosis and I attribute that partly to the fact of my family tree data.  You see, I have a number of family members with auto-immune diseases including two nieces (sisters) that have lupus.  I use the analogy that by telling the doctors this, I gave them the right church, now they had to find the right pew.  Otherwise, they would have taken much longer to pink it down.

Now for the long haul.  My family doctor admitted that he had never has a WG patient in almost 40 years of practice.  He is in a clinic and knew that one of the other doctors had a patient.  He informed the other doctor who contacted his patient.  The next thing I knew Jessie Proctor and I were having regular telephone conversations about our dilemmas.  She informed me about Kansas City and I joined them for information and support.  From her mailing list for Ontario, we eventually got in touch with Gary Timmins and Peter Gery.  Since I was being referred to Dr. Ed Keystone in Toronto by Dr. Hanna (He had admitted to me that he knew about WG but that his colleague, Dr. Keystone, was “THE” expert and would I mind going to Toronto)  Needless to say, I didn’t hesitate.  Bob and I made arrangements to have coffee with Gary and Peter, who also brought Jon Stewart into the picture.  After a couple of these chitchats, it was agreed that we should feel out the known list of Ontario patients and see how they felt about seeing each other.  As we are all aware, February 1998 saw an overwhelming response and affirmation that this group was a good idea.  We have come a long way, having acquired our not-for-profit status and an ever expanding list of patients who can help each other with their struggles, pitfalls and joys as they take this disease one day at a time.

We have all had our share of drugs, tests and teeter totter days.  What we need most is the push for someone to come up with a concrete answer for WG.  Our mandate of Cause, Control, Care and Cure is without a doubt the most important focus that, we as patients and care-givers, can maintain so that someday we can say that we made that difference.

The last two and a half years have been a rollercoaster of good days and bad, a multitude of medications and their side effects, loss of both physical and mental abilities, all having a devastating effect on, not just me, but family and friends alike.

There a number of factors that have kept me going.  No matter how down or disabled I was, my husband, Bob, was there persevering with whatever the challenge of the moment was.  His love and caring has brought me through many a hard time.  Having an interest that I could pursue in my own sweet time, namely genealogy, gave my brain the exercise it needed to continue functioning on a slow but steady level.  Friends, family and you, my WG family have kept me going with the conviction that someday our crosses will show their purpose.

Please reach out to inform others about our situation.  Knowledge will give us the ability to stay on the right path to an eventual cure.  Hope will give us encouragement.  Faith will give us the endurance.  I pray that the Good Lord will grant us these as well as the love and caring that has been so evident among us.