Wednesday, January 9, 2008

Living with haemophilia

As with the majority of PWH (person with haemophilia). I was born with the genetic mutation which prevents my body on occasions from processing and manufacturing vitamin K (in my case and it will vary according to haemophilia type). This is called a blood factor and is measurable, I'm a factor IX bleeder, with a base level of <4%. This makes me classified as a moderate to severe bleeder. Also I don't have a typical bleeding profile which makes controlling some bleeds problematical.  Over the years I have developed methods of my own which work for me to control bleeds. If I have a wet bleed I will remove the clot myself, scrape the wound clean, flush it and seal depending on the type of wound. I will periodically remove the wet clot and dry the tissue until granulation and clotting occurs and the wound stops bleeding. I home treat so have plenty of factor available so I try to maintain a level of about 40% for at least 2 days reducing to a maintenance dose for 2 days after I have controlled the bleed. This is not a recommended procedure and would be frowned upon by all haemo clinics, it works for me and keeps me away from being messed with by educated ignoramus that is doing haematology as a sub specialisation and hasn't a real clue. If you get a good haematologist grab hold and don't let him or her out of your reach they are as rare as hens teeth. Joint damage comes with the territory and over the years I have suffered many prophylactic practices which were or are the in vogue treatment of the day. Most of them don't work, take time and cost money ,but sound good to physiotherapists. I have the utmost respect for a therapist who is suffering and living with the illness to instruct me and is willing to go thru the training or exercises with me. The best advice I have had is eat properly, keep your weight down and do all exercises in moderation ,rather slowly over a period than flat out and strain something.  Well ,I do 2 out of 3 , I am an unfortunate that can gain weight without eating, there is a medical explanation and it is all tied up with my liver, pancreas and hyper adrenaline levels. All thanks to my little companion  Hcv.

1 comment:

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