Centre of Excellence appointment

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

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SJST21
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Joined: 02 Mar 2020 13:30
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Centre of Excellence appointment

Post by SJST21 » 20 Jul 2020 08:38

Hi
My husband was diagnosed in January 2020 with MDS with multilineage dysplasia, intermediate risk. He's 53 with no other real health issues and is on watch and wait, his main issue is low white cell count. He had a consultant appointment in February which was helpful as we got a lot more information and we asked for a referral to a Centre of Excellence. Unfortunately due to a letter not arriving he missed an appointment scheduled for April, he has another appointment on 29th July to see Dr Mike Dennis at The Christie in Manchester. I know each case is different , but if anyone has been there could you please let me know what to expect on the first visit please.
Thank you.
GeoffC
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Joined: 25 Nov 2014 20:49
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Re: Centre of Excellence appointment

Post by GeoffC » 31 Jul 2020 12:45

Hi
Sorry I didn't see this before your appointment but I tend to use the Facebook forum now. That said, there is a lot of useful advice and information on here. I first went to see Mike in January 2014 as I was not happy with my local hospital as I never even saw a consultant there. As you can see from the signature line it is a while now since I was diagnosed, but I know the first few months from diagnosis can be very worrying. I was on watch and wait for three years and attending The Christie more or less monthly for regular checks. I have always said that you don't just feel you go there for treatment, but you feel cared for as well. Mike has a great team there and they all work well together. With MDS I tend to think we are all on the same journey but our paths are different and we travel at different speeds. No two patients are the same. You can find some of my earlier posts on here, but if there is anything you would like to know or need any advice, post on here or send me a private message.

Best Regards
Geoff Chappell.
Geoff C. Age 66. MDS diagnosed June 2013. Type - RCMD with del 20q. Red cells just below normal range, low white cells and platelets. Transformed to AML 2016. Stem cell transplant Jan 2017. Currently still in remission. Lancashire.
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