I’ve been a bit quiet since my PEG was inserted. I was surprised by how much it took out of me. The pain did gradually subside each day so that was good. Then one morning I woke up and the area around the tube was painful again. When I had a closer look it was red and angry and then the pus started to appear. Great!
I’m now on double strength antibiotics and feeling really sick as a result. There in lies the challenge. The medics have to treat me and as an immunocompromised patient it’s vital to get on top of infections. The problem is the antibiotics affect my quality of life.
Quality of life issues are a huge aspect of daily life for MDS sufferers and those living with extensive chronic GvHD. Medics never seem to ask quality of life questions but to us it’s often the most important aspect of our daily lives.
I’ve been pleasantly surprised this week. I’ve had conversations with 2 different pharma companies. They are making a huge effort to be patient centric and bring the voice of the patient into their decision making. This is a significant move in the right direction. I do not want to be a passive patient who just receives care and treatment. I am a partner in my care and we all need to work together with the common goal of getting me as well as possible. Let’s hope this is all the start of a patient power revolution.
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