Treating the unknown
I explained earlier that the doctors thought Joe might have had an adverse reaction to Campath, the one off anti-rejection drug given in theatre after the transplant. If this was what was causing him to be so ill then that may explain why his lungs were still bleeding. The half life of this drug is several weeks so it would still be causing problems for his immune system. One of the treatments was immunosuppressant drugs; which he was having anyway because of his transplant. Another treatment possible is high doses of steroids and a kind of blood purification treatment called Plasmapheresis. This is used to remove antibodies from the bloodstream,
thereby preventing them from attacking their targets. It does not
directly affect the immune system's ability to make more antibodies, and
therefore may only offer temporary benefit. However, given that Joe only received the drug once, the theory was that they could remove any antibodies from his blood that may be attacking his lungs. The doctors had done blood tests and antibodies were not showing up to
the drug but, in the absence of any real idea of what was causing
Joe's condition, they decided that they were going to treat him as if this was
what had happened. The basic procedure consists of removal of blood, separation of blood
cells from plasma, and return of these blood cells to the body's
circulation, diluted with fresh plasma or a substitute. During the course of a single
session, two to three litres of plasma are removed and replaced.
This meant that Joe was now hooked up to a multitude of machines. It was getting harder and harder to find an area of his body that wasn't attached to something. He had tubes taped into his mouth for the ventilator, a clip on his finger checking his oxygen saturation, a band over his head to check his level of sedation, lines for the sedation, drug treatment, dialysis, a feeding tube, clear strips over his eyes to stop them drying out, a catheter and now he was being given Plasmapheresis. In addition to all this, because he was so heavily sedated he literally didn't move a muscle. This lack of movement combined with the effects of positive pressure from the ventilation caused pressure to build up within the venous system and the water to seep into the tissues. In that week he swelled so much he looked like he had put on about 3 stone.
This swelling seems a minor thing compared to what else was happening to him but this was very hard to see. He just didn't look like Joe any more. It felt like one more assault on his poor body. This cheeky, irrepressible young lad had bounced into Jimmy's just over a week ago. He was full of life, enthusiasm and, although nervous, was looking forward to the transplant that we assured him was going to give him a normal life. We too had come into the hospital with high hopes. In a few short days we were sitting by his bed, trying to hold his hand and willing him to get better. This was hard enough. Almost harder still for me was knowing the agonies Anna was going through watching her only son fighting desperately for life. There are few words to describe what it's like to see the woman you love going through this; seeing the fear in her eyes and not be able to offer any words of comfort because there were none. The helplessness I felt at not being able to do anything to take this all away from her; of not being able to help Joe get better was utterly frustrating and very hard to deal with. Hard too was seeing our other 3 so desperately worried. They had already been through so much in their young lives if felt too cruel that they had to watch their brother suffer so unaccountably. We had always reassured them that all would be fine as transplants were now relatively routine. There was nothing we could possible say that would change anything, and all we could do was comfort them and acknowledge their pain. As indeed was the case for the rest of Joe's extended family; who were equally bewildered at the turn of events. Neither of us believe in God or indeed a higher power of any kind but there were many days when we thought that if there was/is such a thing then this was no benign being.
This meant that Joe was now hooked up to a multitude of machines. It was getting harder and harder to find an area of his body that wasn't attached to something. He had tubes taped into his mouth for the ventilator, a clip on his finger checking his oxygen saturation, a band over his head to check his level of sedation, lines for the sedation, drug treatment, dialysis, a feeding tube, clear strips over his eyes to stop them drying out, a catheter and now he was being given Plasmapheresis. In addition to all this, because he was so heavily sedated he literally didn't move a muscle. This lack of movement combined with the effects of positive pressure from the ventilation caused pressure to build up within the venous system and the water to seep into the tissues. In that week he swelled so much he looked like he had put on about 3 stone.
This swelling seems a minor thing compared to what else was happening to him but this was very hard to see. He just didn't look like Joe any more. It felt like one more assault on his poor body. This cheeky, irrepressible young lad had bounced into Jimmy's just over a week ago. He was full of life, enthusiasm and, although nervous, was looking forward to the transplant that we assured him was going to give him a normal life. We too had come into the hospital with high hopes. In a few short days we were sitting by his bed, trying to hold his hand and willing him to get better. This was hard enough. Almost harder still for me was knowing the agonies Anna was going through watching her only son fighting desperately for life. There are few words to describe what it's like to see the woman you love going through this; seeing the fear in her eyes and not be able to offer any words of comfort because there were none. The helplessness I felt at not being able to do anything to take this all away from her; of not being able to help Joe get better was utterly frustrating and very hard to deal with. Hard too was seeing our other 3 so desperately worried. They had already been through so much in their young lives if felt too cruel that they had to watch their brother suffer so unaccountably. We had always reassured them that all would be fine as transplants were now relatively routine. There was nothing we could possible say that would change anything, and all we could do was comfort them and acknowledge their pain. As indeed was the case for the rest of Joe's extended family; who were equally bewildered at the turn of events. Neither of us believe in God or indeed a higher power of any kind but there were many days when we thought that if there was/is such a thing then this was no benign being.
Comments
Post a Comment