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Barbara's Story

Although we were unaware of the fact for part of the time, I have been living with Polyarteritis Nodosa (PAN) for the past eight years. During that time my husband and I (along with the rest of our family) have had to make significant changes to our lifestyle and our attitude to living has altered.

Here is my story.

On a couple of occasions prior to 11th March 1991 I had episodes diagnosed as bladder/kidney infections. I got over them in time. On that fateful day however, I presented to our local provincial hospital with multiple symptoms. I ached from head to feet, I had myalga, nausea (causing vomiting) and a fever, which resulted in rigors so strong that I had to have a pad between my teeth to stop them from clashing together and breaking. I was so weak I could hardly stand. Immediate blood tests revealed that my haemoglobin had dropped to 10.3 (normal 115-160) with a platelet count of 70 (normal 150-450) so further tests were ordered immediately. These included x-rays, a bone marrow test and a series of other blood counts were made. Before the results could be properly evaluated my health deteriorated even further when I became hypoxic at room air and my kidneys began to shut down.

Under these life-threatening conditions a decision was made to transfer me to our state's major public hospital and I was accompanied in the ambulance by a doctor and nurse. Unbeknown to me my husband was advised to gather our daughter and our sons (one from overseas) together which must have been very worrying for them all.

As so often happens in an emergency this was all taking place very late at night with only a skeleton staff on hand and I was fortunate that the Director of Nephrology was in attendance and he took charge of my case. His immediate instructions were to stabilize me by means of a massive dose (500mg) of methylprednisalone IV and then a sub clavian catheter was inserted into my chest. This was used over the next few days to ultra filter my blood by means of dialysis and plasmapheresis.

Unfortunately things didn't go too smoothly as I was allergic to fresh frozen plasma so alternative arrangements had to be made. Over the years there have been other occasions when a massive dose of prednisalone IV was prescribed to treat similar but milder 'attacks' and I have had doses ranging from 80mg down to 15mg per day in tablet form. As a consequence I have developed a love/hate relationship with this drug. I love it because it keeps me alive but hate all the side effects.

The initial diagnosis at this time was Haemolytic Uremic Syndrome/Thrombotic Thrombocytopenic Purpura or HUS/TTP but my specialist did not rule out the possibility that there may have been an underlying condition which gave rise to these symptoms. After several weeks of appropriate treatment I was well enough to go home. We hoped that I was now cured.

Unfortunately it was not to be. Gradually various symptoms began to return. I was starting to get a burning sensation in my feet and hands as well as other aches and pains, high temperatures and a general feeling of not being well. By July of the same year I was back in hospital having miriads of tests all of which gave a negative result as to what was causing these problems. This, of course, was very depressing. My specialist decided it was time for a renal biopsy. Although this indicated nephritis, by this time he was suspecting that I had PAN and he ordered an angiogram which not only confirmed his suspicion but was able to pin point (even with the naked eye,) that it was the Macroscopic (now known as 'Classic') PAN. Not realizing how serious this disease is, I was pleased to know that I had something with a name.

These two episodes were by far the worst that I have experienced. Since then I have had to return to hospital of 32 occasions. Quite a few of these were to have cyclophosphamide administered IV. Having read a lot about it before hand this (along with prednisone) was by no means a drug-of-choice, they keep me stabilized but I have never gone into remission. One can only hope.

In the early days as it does with most people, the steroid caused me to have problems with my weight but through being careful with what I eat and the assistance of a dietician I now have my weight under control. As any one who has experience with prednisone will know there are lots of other side effects to deal with but that's another story. I am very fortunate that my health is being monitored by a marvelous, caring specialist (the nephrologist who treated me initially) as well as a lung specialist and neurologist who have helped me get through some pretty rough patches. I have regular blood counts with particular emphasis on the ESR and CRP readings.

Just as important is the support I get from a loving family and a caring husband. As I said before gradually we have altered our lifestyle to take account of the things I can and cannot do and, by taking life as it comes.




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