Dear everyone,
Another difficult day for Steven. He really is doing his best but I think the long term struggle of feeling really weak and unwell, combined with this relatively sudden bout of total illness is really beginning to wear out his patience.
At least he has been off the oxygen for almost the entire day which surely hails some level of improvement in the lungs. The temperature now also appears to be stable. Again, he has been asleep for most of the afternoon, sitting up only for breakfast and a few snacks this evening for dinner. He cannot stomach a full meal of any kind and now severe diarrhea (but no cramping, thank goodness) has been added to the list of woes. Since Thursday, the main feature of physical discomfort has been related to a difficulty in swallowing and coughing – both actions causing a degree of pain and a feeling of congestion and indigestion.
The venerable Prof. Socié visited this morning – he has been on duty over the weekend which usually leaves him a little disgruntled. He reported the following: The results from the bronchoscopy are inconclusive and they cannot identify the viruses and or the bacteria in the lung - so far. A lack of lymphocytes (which are the building blocks of a healthy immune system) leaves Steven very susceptible to recurrent lung infections. This is likely to continue until lymphocytes are produced in greater numbers in his blood. Everyone is now very concerned about the herpes again. Steven’s current difficulty with swallowing and coughing is indicative that the herpes has moved from the mouth and throat into the oesophagus. The Foscavir medication has now been abandoned in favour of trying Zovirax again. You probably don’t recall, but Foscavir originally replaced Zovirax when the latter was found to be ineffective, during Steven’s first sojourn in pneumology.
I would like to see this herpes problem resolved once and for all because at the moment it is just making Steven’s life really miserable.
I’m sure we will have further news tomorrow as the working week swings into action and everyone returns after the weekend.
Love to all,
Evelyn, Matthew and Steven
Welcome
Welcome to this website which has been created to record Steven’s experiences throughout his stem cell transplant. Steven is happy that this information is shared with you all and that you also have the opportunity to share your thoughts and comments with us.
The Story So Far
In 2004, at the age of 21, Steven had just completed an honours degree in economics and politics. He decided to take a gap year to reflect on further study and future career options. In January '05 Steven went to have a general physical examination in a Bangkok hospital. Surprisingly, a routine blood test showed that he was extremely anaemic. A bone marrow aspiration indicated a diagnosis of bone marrow failure requiring Steven's immediate return to Europe to undergo further tests and treatment.
Back in Europe, a cytogenetic analysis soon revealed that Steven had Fanconi anaemia - one of the rarest congenital disorders which afflicts an estimated 3 per million of the general population. This is a genetically inherited disorder, acquired when a single recessive gene is passed onto a child from each parent. Normally Fanconi anemia sufferers are diagnosed at birth or during childhood as they exhibit an array of physical abnormalities and medical problems. Steven displayed none of these and actually had experienced a life of exceptional good health.
In the case of Fanconi anaemia, although a bone marrow transplant is the only effective cure for the bone marrow failure, it is generally poorly tolerated. As a result, a near perfect match between donor and recipient marrow is crucial. Feargal, Steven’s only brother, is only a 50% tissue match, and to date, no matched donor has been found on the extensive international bone marrow registries. Steven is to undergo transplantation at the Hôpital St. Louis in Paris, which is the most specialized centre for Fanconi anaemia in Europe. The stem cells he will receive in his transplant have been derived from cord blood collected at two separate births. Although they are experts in cord blood procedures in Paris, this is the first time they will perform a double cord blood transplant on an adult Fanconi anaemia patient.
Steven has been very defiant in the face of his diagnosis and has made very few compromises with his medical condition. He is determined to continue his life undaunted and plans to return to complete his MSc studies in International Development in Manchester following his transplant.
2 comments:
Any move forward is a victory. I wish I could bear some of your discomforts, Steven but I would not deprive you of your diarrhoea. Sleep is good but then it becomes a vicious circle. Sleep means no exercise No exercise not helpful. The week ahead is likely to bring some more progress. It is not easy Steven and we all admire your efforts. Just take each hour as it comes. We are all willing you on. God bless you and hold you close to His heart.
Love
from
Auntie Mae And family xxx xxx
Thinking of you on this wonderful bright sunny am and hoping it is a good day for you. Today may be the day someone suddenly sees a way to deal with your herpes. Perhaps there should be a system of rotating the medications. That way there might be less immunity to any one treatment. You are in good hands and we have to trust in them. God bless and comfort you through your pains and discomforts.
Love
from Auntie Mae and family xxx xxx
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