Hope for Joe
Another possibility we heard the doctors considering was that Joe had a form of Goodpasture's syndrome. This is a disease in which antibodies attack the lungs and kidneys, leading to bleeding
from the lungs and to kidney failure. It can quickly result in permanent
lung and kidney damage, often leading to death. This was a surprise as Joe had a diagnosis of Alport's syndrome and that is what caused his kidney failure in the first place. However, there was apparently a case where someone had reported an acute form of Goodpasture's with someone with Alport's after they had been given a transplant. Again this was just guess work as no one really knew what was happening to Joe. This particular disease is treated with
immunosuppressant drugs such as corticosteroids and cyclophosphamide,
and with plasmapheresis, so Joe was getting the treatment it required if it did turn out to be this syndrome.
There were a number of consultants dealing with Joe's case, including those from ICU and the renal team; and only thing we knew for sure was that they were all doing everything they possibly could. They were as bewildered as anyone else and had talked to people all over the world in an attempt to understand what was happening to Joe. It was as a result of this that they had discovered one reported case in Egypt where someone with Alport's had been given a transplant and had suffered a similar reaction to that which Joe was experiencing. The great news for us was that he had been successfully treated with steroids. We had some hope at last.
Although Joe had been treated by average doses of steroids as a matter of course this treatment was about giving massive boluses that could only be given for a maximum of 3 days and could not be repeated. They gave the first dose of steroids to Joe on or around the 22nd of February, 11 days after his transplant. Over the next couple of days he started to improve. His oxygen therapy was being reduced steadily and by Friday the 24th it was down to less than 40%, his pressures were good and the nurses had started to reduce his paralysing drugs and sedation and were planning to try to wake him a little.
That day I had needed to come back to Scarborough as I had an appointment myself and I wanted to see my brother, Mally, who was terminally ill and not expected to live for much longer. Anna's brother Pete was returning to Canada the following day so he was thrilled that they planned to reduce Joe's sedation. It felt like he would have some good news to take home with him.
I rang Anna several times during the day to find out how he was responding and couldn't wait to get back to the hospital that evening. When I got back, I rushed down to his bedside. Joe was trying to open his eyes and kept moving his hands up to his mouth. We had to keep holding on to his hands to try and stop him as we were afraid he was going to pull his ventilator tube out. To understand the joy this gave us you have to understand that he simply hadn't responded in any way since he had been ventilated. He had been so heavily sedated and paralysed that it was as if he was in a coma. More than that, as you can sometimes get involuntary movements from coma patients but Joe hadn't moved at all. As Anna put it, 'Joe is opening his beautiful blue eyes at last'. We left that night full of hope. Still crying, but this time it was tears of relief and joy. At last it looked like Joe was really getting better.
There were a number of consultants dealing with Joe's case, including those from ICU and the renal team; and only thing we knew for sure was that they were all doing everything they possibly could. They were as bewildered as anyone else and had talked to people all over the world in an attempt to understand what was happening to Joe. It was as a result of this that they had discovered one reported case in Egypt where someone with Alport's had been given a transplant and had suffered a similar reaction to that which Joe was experiencing. The great news for us was that he had been successfully treated with steroids. We had some hope at last.
Although Joe had been treated by average doses of steroids as a matter of course this treatment was about giving massive boluses that could only be given for a maximum of 3 days and could not be repeated. They gave the first dose of steroids to Joe on or around the 22nd of February, 11 days after his transplant. Over the next couple of days he started to improve. His oxygen therapy was being reduced steadily and by Friday the 24th it was down to less than 40%, his pressures were good and the nurses had started to reduce his paralysing drugs and sedation and were planning to try to wake him a little.
That day I had needed to come back to Scarborough as I had an appointment myself and I wanted to see my brother, Mally, who was terminally ill and not expected to live for much longer. Anna's brother Pete was returning to Canada the following day so he was thrilled that they planned to reduce Joe's sedation. It felt like he would have some good news to take home with him.
I rang Anna several times during the day to find out how he was responding and couldn't wait to get back to the hospital that evening. When I got back, I rushed down to his bedside. Joe was trying to open his eyes and kept moving his hands up to his mouth. We had to keep holding on to his hands to try and stop him as we were afraid he was going to pull his ventilator tube out. To understand the joy this gave us you have to understand that he simply hadn't responded in any way since he had been ventilated. He had been so heavily sedated and paralysed that it was as if he was in a coma. More than that, as you can sometimes get involuntary movements from coma patients but Joe hadn't moved at all. As Anna put it, 'Joe is opening his beautiful blue eyes at last'. We left that night full of hope. Still crying, but this time it was tears of relief and joy. At last it looked like Joe was really getting better.
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