Wendy Burge

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On December 8th I was admitted to RNS once again, this time for an A V fisstula in my right arm. This was decided to be the best course of action for when Intragram was not available again. I could have a plasma exchange via the fisstula, ensuring a good blood flow. Unfortunately the first and second attempts to construct the fisstula in my right wrist were unsuccessful. The third operation in the elbow two days later cut off the blood supply to my hand. In a forth operation the fisstula was narrowed and worked successfully. I began relapsing during this admission and was given 60 grams of Intragram.

Following another relapse in mid-January 1998 I began having plasma exchanges on a weekly basis using the fisstula. These became fortnightly but I wasn’t recovering completely and by May it was becoming increasingly difficult to play with any ability due to weakness. I began receiving Intragram again in May, July, September and November of 1998, lasting a little longer each time between treatments.

During 1999 I received Intragram every six to eight weeks with the intervals between infusions gradually increasing. I was able to return to a work-load resembling that prior to my illness, but my ability to continue playing cello at an acceptable level was always dependent on receiving Intragram. I couldn’t ever count on being able to get the Intragram when I needed it and that is still the case at present. I had a very good run for eight months while I was pregnant, only requiring one infusion. My daughter Ashleigh was born on the 8th of April this year. A fortnight after this I had quite a sudden relapse, with my arm strength and movement disappearing overnight. I could only just lift up my daughter and I was afraid of dropping her. Intragram was available on this occasion so I recovered within a few days.

Having CIDP has made me appreciate the little things in life. Loosing your movement, strength and independence has a very sobering effect. To all those people who donate blood on a regular basis I am very grateful. Intragram is the difference between a relatively normal life and one that doesn’t bear thinking about.