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Please support Jeff in his treatment and hopeful recovery from Cryptococcal Meningitis

  • Week 11

      18 July 2016
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    We now have confirmation that the culture has not grown in Jeff’s spinal fluid for 4 weeks indicating that the drugs have worked in treating the Cryptococcus Meningitis. Whilst this is tremendously good news, Jeff will need to continue to take anti-fungal drugs for the next 12 months in order to ‘mop up’ any residual effects of the disease in his system. According to the lead Consultant he will also face a long period of rehabilitation - the outcome of which will be unknown for some time as the brain can continue to heal for up to five years.

    Based on his current cognitive abilities and psychological and physical state, Jeff’s medical team have decided upon a rehabilitation programme at home rather than at the Waikato Hospital Facility. A registered nurse, physiotherapist, occupational therapist, and health care assistant will oversee a program to support Jeff’s recovery alongside the input of his family.

    As a result of the effects of the Meningitis, the Consultant has said Jeff has what can best be described as a brain injury. She has advised that visiting should be arranged in advance and kept to under half an hour at a time as Jeff tires very easily and finds too much stimulation difficult to process. His neurological impairment is such that he can become confused and distressed without visitors necessarily being aware of the impact of their visit.

    Some ongoing issues as a result of the Meningitis and prescribed medications have not yet resolved, but Jeff’s overall health continues to be monitored by weekly blood tests and check ups with his medical team.

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  • Week 10

      10 July 2016
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    Not much to report in this last week as Jeff’s condition, as expected, remains largely unchanged. This Tuesday sees the reduction of the high dose anti-fungal drug to a maintenance level and further monitoring and observation of Jeff’s overall health. He still requires round the clock care as he is unstable and light headed when standing or walking short distances and is continuing to experience frequent fainting episodes. Despite ongoing vomiting, Jeff’s appetite has increased and a small weight gain has been seen after many weeks of weight loss. An occupational therapist has been overseeing neurological testing and physiotherapy.

    Jeff’s daughter Rachel has arrived from the UK in order to help care for her father over the next month.

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  • Week 9

      4 July 2016
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    With Jeff unable to keep food and medication down last week, a decision was made to remove his feeding tube for 48 hours to ascertain if this might be a contributing factor. Overnight i/v fluids were set up to prevent dehydration but a decreased food intake was expected. Despite some continued vomiting Jeff was able to keep down enough food and fluids that the trial removal of the tube was extended over the weekend. Although Jeff continues to have a limited oral intake the doctors are happy for him to go without feeding assistance. Jeff is extremely happy about this!

    With food intake being marginal over the last couple of months, emphasis has been on calorific supplements, meals and snacks. As calorie dense food is often high in carbohydrate/sugars this has played havoc on Jeff's diabetes. Getting blood glucose levels under control has been problematic so Jeff's team have today decided to take him off insulin and trial his usual oral diabetic medication to see if better control can be achieved.

    Now that intravenous fluids and fluid retention (caused by the initial drug regime) have reduced, Jeff's weight is once again low and he looks very frail. It will be an ongoing challenge to increase weight and muscle mass particularly as much of the calorie dense food is minimised to help control blood sugar levels. A positive is that Jeff has shown an increased interest in food albeit the sweet stuff he is not normally allowed to eat.

    Medications for various other side effects, bowel issues, and sleeping have been reduced with a view to Jeff being on the least amount of drugs possible. Conversations have been had about the possibility of time in the hospital's rehabilitation unit although it is thought Jeff's limited cognitive abilities make this unlikely at this time. Rehabilitation may be more appropriate further down the track subject to Jeff's recovery.

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  • Week 8

      28 June 2016

    Jeff is on a new anti-fungal medication. As the drug can be taken orally and is less depleting of nutrients and minerals, Jeff's Picc line has been removed. This gives him more freedom to move around and makes caring for Jeff less difficult in that pumps and cables need not be removed/detached the many times Jeff gets up at night. He is still being fed via a nasogastric tube.

    Unfortunately the last week has seen a series of setbacks. The frequent vomiting, which appeared to be under control, has returned. This may be a side effect of the new drug, nasogastric tube irritation, the increase in overnight feed or residual effects of the previous drug regime. Other complications have included several vasovagal episodes where Jeff's pacemaker has kicked in, loss of appetite, and spiking blood glucose levels.

    On the positive side, Jeff has had a few sessions with the hospital physio and is able, at times, to perform basic bedside exercises. During infrequent periods of lucidness Jeff has shown interest in books and magazines and has been on a few wheelchair excursions within the main hospital building.

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  • Week 7

      22 June 2016

    Jeff remains in a serious condition at Waikato Hospital. While the drug regime appears to be successfully targeting the Cryptococcus Meningitis based on the most recent culture tests, conclusive results will not be known for up to 4 weeks. Unfortunately the dual drug treatment is causing a lowering of Jeff’s white blood cell count and putting pressure on his kidneys. Both issues are being closely monitored and the treatment will stop or be reduced if and when below-acceptable indicators are reached.

    At the point Jeff can no longer tolerate the current drug regime, he will start a new longer-term oral medication which he will take for up to a year. This drug may also be difficult to tolerate particularly as Jeff will be started on a high dose. Side effects will be monitored by regular blood tests.

    Jeff is particularly fatigued at the moment - a side effect of both the illness and the drugs. He spends a lot of the day asleep, is very quiet when he is awake, and still requires 24/7 care. His general state is one of confusion but we hope this will improve.

    Thank you to everyone for the continued support. Jeff has found it very encouraging to read your best wishes for his recovery. We will update when there is more news.

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