Living alone with MDS
Blog update treatment of infection.
Further to my previous update regarding a negative response from my medical practice.
The practice manager booked an extended appointment with my GP so I could express my concerns.
I attended ready to do battle, my GP said he had had time to look at my notes and realised my concern( I knew well he hadn't referred to them before) and suggested that it would be a good idea if he prescribed a reserve supply of antibiotics in case of my sinus infection reoccurrence.
It was my intention to request this but he beat me to it.
When I mentioned my previous gps catalogue of errors failing to refer me for further tests and dismissing another gps warning that I had a bone marrow problem he told me he would be circulating details of warning signs of MDS to the other doctors in the practice.
I thought he would have done that previously as when I first registered with him as I gave him the paper Bloodwise asked me to give to my GP for information of the signs to look out for.
All of us should be aware that our GP is not infallible and if you have doubts get a second opinion!!
I have pre chemo blood test and if all well start my 15th cycle of Azacitidine on 8/2.
When I was diagnosed just over a year ago my haematologist told me the danger of any infection and stressed the importance of should such incident arise to contact my GP immediately.
I found to my dismay that this is more easily said than done!
Yesterday around lunchtime I started getting pain over my right eye and an unpleasant yellow discharge from my nose. Recognising this as a sinus infection, the frequency of which what lead to my diagnosis over a year ago I immediately telephoned my medical practice. After bein offered several pre recorded options I pressed 9 for emergency, when it was answered I was told this was for emergency only, I replied in my case it was one. In time I will expire from AML( I was told in no uncertain terms by my haematologist that any infection I contracted would kill be sooner than MDS).
I told the staff member of my predicament in great detail mentioning the above and she said she would have a word with a doctor and call me back. After nearly an I had not received a call back so I phoned again and was told that the doctor said he would rather my own GP dealt with me and he would be able to call me back after 5pm.
Knowing from past experience how fast the sinus infection gets considerably worse I telephoned the Practice Manager to complain, I'm not absolutely sure it was the person I asked for but I was told that she would investigate.
It did the trick though, 10 minutes later my own GP telephoned me( I have always found him uncommunicative in the past) sounding like my best friend. I told him the antibiotic that had worked well in the past and he advised me I could collect it from the practice straight away, which I did and got it dispensed immediately after.
The main reason I have written this update is because many sufferers of this disease have very probably experienced a negative response from their medical practices and been unable to get immediate treatment and suffered needlessly.
All of us unfortunates know far more about our disease than our GPs thanks to the comprehensive details from Bloodwise and hopefully by the hospital at diagnosis,and if any of us are unfortunate enough to contract an infection not to be put off by an unhelpful medical practice just because the request made is outside their normal procedure.
Its your life that that is at risk, so fight to continue living it!!