New member saying Hi

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seanieb76
Posts: 4
Joined: 18 Jun 2015 21:00
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New member saying Hi

Post by seanieb76 » 19 Jun 2015 20:52

Hi Group,

As a new member of the group, thought i'd say Hi and detail my condition.

I'm a active and busy 38 year old, married man with one little boy (4) and a second bundle of joy due in late September.

About 6 weeks ago (a few days after the 21 week scan) i was diagnosed with MDS. My red blood cells were at 75 and dropping, white about half but my platelets were down at 6. This all came as a huge shock as i didn't feel that unwell. I'd noticed some red pin prick spots on my ankles (didn't think much as both my ankles have taken abuse from rugby over the years and were in a horrible mess anyway) and were finding hills more difficult than the year before on my regular cycle rides but not a great deal else.

As things have settled, i have become transfusion dependant mainly a need for weekly platelet transfusions then it looks like 3-4 weeks for my reds. Between transfusions, i am feeling 'normal', energetic even! i have even been told i can return to my bike as long as it's not too strenuous and i listen to my body.

I have been referred to Kings to progress my prognosis which appears to be Thrombocytopenia and Hypoplastic MDS. He has been at length to highlight the likely need for a transplant but obviously it is still early days and will be driven by Kings involvement.

I'd be keen to hear from anyone with any advice/tips
Russell
Posts: 52
Joined: 15 Apr 2010 16:56
Location: Stoke Poges, Bucks
Contact:

Re: New member saying Hi

Post by Russell » 19 Jun 2015 22:25

Hello Sean,

Sorry to hear of your diagnosis. 38 is relatively young for MDS but not unusual. I do understand the shock though - went through something similar myself. Treatment is improving, however, so it's not all bad news. If you are at King's why not ask to see Sophie Wintrich, the MDS UK CEO? The MDS offices are in the Haematology Unit at King's. There's a patient meeting in October too, might be worth a visit? I'm not often on this forum as I spend a lot of my time helping to run the Facebook and Twitter accounts, but you might like to introduce yourself to the MDS Community FB page - there's a fair few MDS patients who would get some inspiration from you I'm sure.

Look forward to hearing more.

Russell
Age 55
RCMD 2009 at age 49
1x MUD BMT 2010
1x MUD SCT 2010
1x Haplo Transplant 2010
4 Marathons
and
4 other Half Marathons, a 10 miler and a Spartan Race!
Russell
Posts: 52
Joined: 15 Apr 2010 16:56
Location: Stoke Poges, Bucks
Contact:

Re: New member saying Hi

Post by Russell » 19 Jun 2015 23:08

Hi Sean

Have a look at: https://www.facebook.com/groups/196182110586666/

Russell
Age 55
RCMD 2009 at age 49
1x MUD BMT 2010
1x MUD SCT 2010
1x Haplo Transplant 2010
4 Marathons
and
4 other Half Marathons, a 10 miler and a Spartan Race!
Russell
Posts: 52
Joined: 15 Apr 2010 16:56
Location: Stoke Poges, Bucks
Contact:

Re: New member saying Hi

Post by Russell » 19 Jun 2015 23:19

Not sure if this will help with your fitness but might be worth a look:
http://www.mdspatientsupport.org.uk/wp- ... SHEET2.pdf

Russell
Age 55
RCMD 2009 at age 49
1x MUD BMT 2010
1x MUD SCT 2010
1x Haplo Transplant 2010
4 Marathons
and
4 other Half Marathons, a 10 miler and a Spartan Race!
seanieb76
Posts: 4
Joined: 18 Jun 2015 21:00
Contact:

Re: New member saying Hi

Post by seanieb76 » 20 Jun 2015 18:56

Wow, thanks Russell!

An awful lot of good stuff to be looking at there. I've requested to join the FB group and also had a good read of that leaflet. That is a good read. I think much of the problem is i was told to continue to be active but not overdo it. I found myself starting to second guess myself and if i was overdoing it but think i am through that now.

I've been back out on my bike again, only flat and much shorter distances than my usual weekend 40 miles but it felt great to be back out. Aware of my platelet, i've also bought a turbo trainer so i can keep active (within bounds of my body obviously).
Russell
Posts: 52
Joined: 15 Apr 2010 16:56
Location: Stoke Poges, Bucks
Contact:

Re: New member saying Hi

Post by Russell » 21 Jun 2015 15:14

That's great! I look forward to welcoming you to the MDS Community!

Russell
Age 55
RCMD 2009 at age 49
1x MUD BMT 2010
1x MUD SCT 2010
1x Haplo Transplant 2010
4 Marathons
and
4 other Half Marathons, a 10 miler and a Spartan Race!
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