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Visit to COE Cardiff

Posted: 29 Oct 2014 12:53
by red
Went to COE in Cardiff on Monday. I am so pleased I went. The Haematologist was great, she answered all of my questions. When I visited my local hospital each time I left I kept feeling as if he did not want to discuss my condition with me. I felt as if he'd avoided answering some questions and been very vague over others. He's let me believe that my EB, a rare skin condition would preclude most treatments. At Cardiff They are going to contact my Dermatologist to discuss this. As I've had a lot of infections this year Cardiff want me to have a bone marrow test done to see if my MDS has altered. My local Haematologist sent a letter to my GP saying has I've not had many infections He's not worried about me and He'll see me in 3 months, he also told me that as my red cells were dipping he would consider doing something about it in 3 months none of this was reported to my GP
I wish I'd gone sooner to a COE and I'd strongly advise other MDS sufferers to think about it.
I feel much better able to cope with forthcoming problems as I know they will arise. I cannot be one of those people who think "If I don't know about my illness then I won't worry about it." I think we can all help ourselves to live as long as possible with this condition and that ignorance is not bliss.

list of infection in past 10 months:
4 lots of Cellulitis (one so bad I was on 4000mg of antibiotics four times a day for 3 weeks and at one time they considered hospilalising me the only reason they did not was that I'd been on oral antibiotics too long. I had to see my GP every day and at first twice a day for him to monitor me.
2 suspected fleabitis again high doses of antibiotics,
lots of water works infections
infection in the bone in my jaw from an infected tooth this had to be removed in hospital after I'd been transfused with 2 lots of platelets.
Multiple thrush each end
I've hardly gone 2 weeks before I'm back on antibiotics.
Please look after yourselves and consider going to a COE there is a lot more information available there.

Re: Visit to COE Cardiff

Posted: 02 Nov 2014 16:51
by MollyP
Hi Winnie
So glad you had a good visit to your COE. It's so nice to discuss things with those who know what we are talking about isn't it?
Molly xxxx

Re: Visit to COE Cardiff

Posted: 06 Nov 2014 16:45
by punda milia
Hi Winnie

I am so glad that you had a good visit to the Centre of Excellence in Cardiff. Getting there must have been an effort if you needed to stay overnight but at least you are feeling better about things now.