DAY 104

Dear all,

Steven is still in the hospital. Yesterday, Monday, was fairly uneventful and there was nothing really enlightening to report. In the end, the planned fibreoscopy was cancelled, and was replaced by an ultrasound of the vein system in Steven’s upper right chest area (ie. surrounding the central line). This test was performed to rule out the possibility of a potential infection migrating from the central catheter into the veins. They had already analysed the line itself and had found that it contained no bacteria of note. The results regarding the veins were very clear and no problem was identified. As a result, Steven’s central line was put back in action today, which is always a relief as it is a much more comfortable means of receiving transfusions.

Matthew and I met with Prof. Socié this morning and with Dr. Bergeron, who is the head of the pneumology service this afternoon. The general viewpoint is fairly positive. Based upon the evidence from the lung scan, everyone is quite sure that there is no pneumonia present and there is no active infection in the lung. The spots visible on the scan are felt to be either scarring from the last pneumonia outbreak, or new spots which may have harboured some mild form of infection, which they now believe to be under control. Dr. Bergeron explained that the temperature highs may be just normal post transplant reactions of the body to high dosage drugs, or, could be some fleeting but insignificant virus. She was really very reassuring and explained that half of the patients in her unit are post transplant cases: she obviously has a lot of experience in this respect. The plan is that several antibiotics will now be removed from the drugs regimen, and Steven’s reaction will be closely monitored.

Nobody has offered any easy solutions to the problem of physical exercise. Several weeks of high sodium content Foscavir (herpes anti-viral) have really combined with the steroid intake to exacerbate the problem of body swelling and high blood pressure. It has also added a new dimension of feeling nervous and jittery along with muscle spasms. Thankfully, this medication ended today as the herpes is no longer active. They will once again reduce the steroids by the end of this week. Apart from modifying his drug treatment, their advice regarding muscle depletion and severe back pain is to ‘bite the bullet’ and, once home, start walking and exercising again.

Steven continues to be a little slow in his reactions. Apparently, the morphine intake is definitely the culprit here. Again there is no easy solution as Steven really needs this to control his pain, which is still very intense. Another scan is planned to look more closely at this more localized back problem.

Increasingly, it is looking like we may need to remain in Paris until Christmas.

Love to all,
Evelyn, Matthew and Steven