Dear everyone,
Today has been a ‘so-so’ kind of day.
The experience with the nasal intubation to remove tummy fluids continued until this afternoon when it was decided that the line had become blocked. The solution to this was removal of the existing tube and its rapid replacement with a new line. All of this takes some time, as you can imagine, and constitutes great wear and tear on Steven’s physical tolerance and energy level. None of these invasive procedures are really painful, just awfully unpleasant, particularly when Steven has to endure a whole variety of them in quick succession. He really detests this nasal line as it is quite uncomfortable and really restricts movement. The really bad news is that it may need to remain in place for another 24-48 hours – this knowledge alone has really soured any improvement in his mood. We’ll easily forgive him for any ill temper – personally, I think I would have started throwing things at people by about the fourth bronchoscopy! Honestly, if this system reduces his nausea and stomach discomfort, and gives his GI tract time to recover, then it will be of some considerable benefit.
Be aware that Steven has had nothing to eat since Sunday and he has not had a drink of water since Monday night. He cannot have water as there is a danger it could enter his lungs, so they prefer to remain really cautious. He receives all of his fluids intravenously and he is allowed an Evian aerosol of water to keep his mouth hydrated.
Medication-wise, the steroid intake has been almost trebled to control the GVHD. It is most unfortunate that this is necessary as they create so many negative side effects. One of these effects is induced wakefulness. As a result, Steven has been quite lucid today and has not been asleep quite as much. Steven thinks this is a major injustice as he would have preferred to sleep through this whole nasal intubation experience!
That’s about it for the moment.
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:
What can anyone say! Try and bear with the awful discomforts, Steven. Something is bound to help and the waiting will be worthwhile. Hope tomorrow is a better one for you. God bless and love
from
Auntie Mae and family xxx xxx
Dear Steven
I am sorry that the nose tube is hurting you. I often get nose bleeds I had them since I was very small because there is a nerve loose in the top of my nose. Mummy says that this can be fixed by putting somthing in my nose but I am to afrraid. So i think you are very brave. I hope that I can see Nora and Joanna soon. I miss them. Jessica.
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