Visit to COE Cardiff

Please post here your experiences of MDS as a patient, carer, family or friend

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red
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Joined: 22 May 2013 14:25
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Visit to COE Cardiff

Post by red » 29 Oct 2014 12:53

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.
Winnie
(red)
Red widow aged 70. MDS -20Q+t(1,9) diagnosed June 2013 on watch and wait. Lives in Somerset

Life is for living
MollyP
Posts: 75
Joined: 04 Mar 2013 13:01
Location: South East England
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Re: Visit to COE Cardiff

Post by MollyP » 02 Nov 2014 16:51

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?
Love
Molly xxxx
*** *** *** ***
69 yrs hubby - CMML 1 dx Feb 2013
raised Monocytes was watch and wait
Nov 13 hydroxycarbamide.
Jan 14 blood OK back on w&w
Jan 19 disease advancement to CMML-F (fibrosis)
punda milia
Posts: 22
Joined: 01 Oct 2012 14:08
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Re: Visit to COE Cardiff

Post by punda milia » 06 Nov 2014 16:45

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.

Diana
66 year female. Diagnosed with mds 2012. In 2002 treated for Non Hodgkins Lymphoma with chlorambucil. Have enlarged macrocytes, low neutrophils & low white cells. Also have Trisomy 8 & classified Intermediate 1. Now on watch & wait
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