My journey..... Now recovery!

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

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KASP6
Posts: 7
Joined: 12 Aug 2021 12:02
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Re: My journey..... Now recovery!

Post by KASP6 » 26 Apr 2022 23:40

My partner is going to have a bone marrow transplant in a couple of weeks.
Does anyone have any top tips as to what to take into hospital? Things you’d wished you’d known before you embarked on your transplant and a lengthily stay in hospital greatly received.

All best
Kirsty
murrayfs
Posts: 21
Joined: 10 Dec 2008 21:02
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Re: My journey..... Now recovery!

Post by murrayfs » 27 Apr 2022 15:56

Hi Kirsty - My name is Fiona and I had a transplant 19 months ago. I have some information that people kindly forwarded to me before my transplant and I'd be more than happy to send you a modified version following my own experiences? I'm 56 and had an unrelated donor transplant at the Queen Elizabeth Hospital in Birmingham. I would also be happy to chat to you on the phone or video call if you think that would be of benefit at all? My email address so that you can contact me if you wish is: murrayfs@hotmail.com
Best Wishes - Fiona
Fiona - Female, age 56, diagnosed in 1999 with MDS 5q-. (TP53 also) I had a stem cell transplant in 2020
chris
Posts: 754
Joined: 01 Dec 2009 21:52
Location: Essex
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Re: My journey..... Now recovery!

Post by chris » 28 Apr 2022 11:20

Thanks Fiona. Kirsty, can you tell us in which hospital your husband is having his Stem Cell transplant - as we might be able to find somebody who has experience of that actual hospital and put you in touch?

Chris
Chris.Trustee,Patient Support Ambassador (Essex) (F) Age 73 (2023)).Diagnosed in 2008. CMML-1. Normal red cells, low white cells & platelets, slightly raised monocytes. Enlarged spleen. Not had any treatment - active monitoring 6-monthly.
KASP6
Posts: 7
Joined: 12 Aug 2021 12:02
Contact:

Re: My journey..... Now recovery!

Post by KASP6 » 06 May 2022 15:04

Dear Chris and Fiona

How lovely to hear from you, thank you so much.

Fiona - I’ll email you to your private account in a bit.

Chris - I’d love to be introduced to someone, if possible, who has been treated at The London Clinic.

Looking forward to hearing from you.

All best

Kirsty
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