Wendy Burge

I was back again three days later due to jugular thrombosis caused by being immobile while the vas/cat was in and the lung was healing. Following my discharge after four days, I began twice daily injections of Clexaine to prevent further clotting. These continued for several weeks. As much as I appreciated the care I received from the nursing staff on Level 7 of RNS, I was well and truly sick of hospital.

On July 26 I began relapsing and was admitted several days later for an overnight treatment of 60 grams of Intragram. I started on Prednisone in August. After another relapse in early September I was in overnight for another 60 grams of Intragram. I also started on Immuran as well as Prednisone. I was becoming such a regular on Ward 7B even the tea lady knew me.

In early October I received 36 grams of Intragram following another relapse. This was not enough to bring me back to normal. I had not realised until this point that Intragram was in very short supply and that I had been fortunate to receive it on previous occasions. I was unable to work and it was increasing difficult to manage at home on my own when my husband was at work. I was prone to falling over and not able to get up from chairs or the toilet. Plasma exchange was now a problem due to access since the punctured lung on the right side and the thrombosis on the left meant no more shunts in under the collar bone. I had very restricted movement and was admitted again in mid-October. I was by now an expert at presenting myself at emergency at RNS. It was decided to give the drug Ciclosporin a try as plasma exchange wasn’t looking too hopeful. I had two plasma exchanges spaced out over several days to rest the veins. The third was unsuccessful. I was rather depressed at this stage as I knew that had the Intragram been available, I could be back to normal and back to work. I was discharged after five days as more plasma exchanges were not possible and there was no Intragram available. I was quite miserable at this stage.

I did not recover and soon began to become weaker. Towards the end of October a single plasma exchange was attempted but it resulted in little more then very bruised elbows. I began ringing the hospital neurology registrars to check with the blood bank but there was still no Intragram available for me. I was determined to get to my brother’s wedding in Maryborough Queensland in mid-November. I left Sydney being able to walk but my legs began to give way quickly. I fell up the stairs to the plane at Brisbane airport and this relapse was the most aggressive I had encountered. Within four days I became a quadriplegic, with no movement in my arms or legs. I had what I would describe as the worst few days of my life despite the efforts of my husband and family, who ended up having to do everything for me. The high humidity that weekend made my situation worse. With no movement in my arms or legs, the CIDP was starting to affect my swallowing and breathing. It was a toss up whether to be admitted to hospital where I was or fly back to Sydney as planned. I returned to Sydney in a wheelchair. I was loosing my voice, unable to cough, having difficulty swallowing and on admission to RNS I had my hands splinted to relieve cramping in the fingers. I couldn’t lie down due to painful cramps in the calf muscles. The following day I received the long awaited 60 grams of Intragram. Had I been able to have it a week previously I would have been spared considerable agony. After four days some movement gradually returned. I had been promised a further 60 grams of Intragam by the blood bank earlier in the week, but this did not materialise once I was showing signs of improvement. My recovery was slow this time due to deteriorating so badly before treatment. The drug regime I was on seemed to be having little affect.