Awaiting Transplant - Aplastic Anemia, Red Cell Aplasia, MDS

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Sam Goddard
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Joined: 07 Jul 2014 12:53
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Awaiting Transplant - Aplastic Anemia, Red Cell Aplasia, MDS

Postby Sam Goddard » 22 Jul 2014 14:08

Hi Everyone,

My name is Sam Goddard, and I am a 33 year old Male that has recently been diagnosed with early MDS. About 12 years ago I was diagnosed with Aplastic Anemia. I had ALG treatment and Cyclosporin thereafter. I was in remission for 10 years, however I ran into trouble 2 years ago and found that I was getting very tired, breathless, dizzy when walking and my skin went very pale. I went back to the hospital and they gave me blood transfusions, as my red cell count was down to 5. After a bone marrow biopsy I was diagnosed with Red Cell Aplasia. I was then put back on the Cyclosporin for 12 months which seemed to keep my blood count levels stable. After a while though my red cell count started falling again and my white cell count started dipping. I had another bone marrow biopsy and results showed that my illness has developed into MDS. I am no longer on Cyclosporin, but am having injections once a week to keep my counts stable.

I have been told that I need a Bone Marrow Transplant, some time in September 2014. They have found several potential donors, but are at the moment investigating further to find a best match. I am still waiting for further news. I have been given all the supporting material including "Blood & bone marrow transplantation, the seven steps" which has explained things very well. I haven't talked to anyone though who has been through a unrelated donor transplant.

I am pretty anxious about going through this as I have had two friends who have both passed away after bone marrow transplants. I know they had different illnesses to what I have so I understand we are different medical cases. I have a wife and two children, an 8 year old boy and 5 year old girl. I am trying to gear myself into preparing for this transplant and the fight ahead. If anyone has been through similar or has any advice to help with the days ahead I would really appreciate hearing from you. Any advice for getting through the treatment also appreciated.

Sam Goddard
Aplastic Anemia
Red Cell Aplasia
MDS
chris
Posts: 576
Joined: 01 Dec 2009 21:52
Location: Essex
Contact:

Re: Awaiting Transplant - Aplastic Anemia, Red Cell Aplasia,

Postby chris » 25 Jul 2014 20:51

Dear Sam

You have had quite a journey with your previous experience of Aplastic Anaemia and now facing MDS and a a stem cell transplant. Of course you are anxious about it: we all would be as we do understand that it is a serious procedure not undertaken lightly by either MDS patients or their clinicians.There are quite a few people on this Forum who have had transplants following on from MDS and I suggest you go to the Caringbridge site and register and look at the blogs of Jayne Snell and John Watson - both of whom are now 2 years post-transplant and doing well. Jayne had a matched unrelated donor: John had a donation from his brother but the good news is that research shows both now are equally good in terms of outcomes.

Please also contact Sophie Wintrich as she may be able to give you more information and details of any patients who have been through the experience and may have practical tips for comfort and easing side effects etc.

Your youth is on your side. It will be hard when maybe your children are unwell and cannot visit you when you are at a vulnerable stage but hopefully, by Christmas, you will be on the road to recovery.

Best wishes to you

Chris
Chris. (F) Age 65. MDS diagnosed in 2008. Closest sub-type is CMML-1 but with anomalies! Normal red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
Russell
Posts: 52
Joined: 15 Apr 2010 16:56
Location: Stoke Poges, Bucks
Contact:

Re: Awaiting Transplant - Aplastic Anemia, Red Cell Aplasia,

Postby Russell » 29 Jul 2014 16:38

Hi Sam, I've been through the transplant process and come out the other side. If you'd like to have a chat with me let me know.

Russell
[color=#0000BF]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: Awaiting Transplant - Aplastic Anemia, Red Cell Aplasia,

Postby Russell » 29 Jul 2014 16:40

Sam, where abouts are you based?
[color=#0000BF]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!
Sam Goddard
Posts: 5
Joined: 07 Jul 2014 12:53
Contact:

Re: Awaiting Transplant - Aplastic Anemia, Red Cell Aplasia,

Postby Sam Goddard » 30 Jul 2014 01:45

Hi Chris,

Thankyou for posting a reply. It's great to hear from someone who understands what I'm going through. I am currently reading through those blogs. I'm sure they will be an interesting insight into the days ahead. My local hospital has put me in touch with someone to talk to, who has come from an Aplastic Anemia background and has gone through a bone marrow transplant. I like the idea of keeping a blog type diary of the progression through the treatment, so I might give it a go myself, it will keep the family and my friends informed. It may also give me something to do whilst in isolation.

Like you say I think my age is a strong point and the fact that the doctors have identified MDS in its early stages. At the moment I'm feeling good some days and very tired on other days. It depends what I have been doing. I'm still working at the moment but on reduced hours, and I'm using annual leave here and there when I need a rest. It may sound silly but I want to get the treatment started. I've got my second meeting with the BMT team next Monday so hopefully they will have identified a match and I might get a date for going into hospital?

Thanks for the advice. It's a great help!

Sam Goddard
Sam Goddard
Posts: 5
Joined: 07 Jul 2014 12:53
Contact:

Re: Awaiting Transplant - Aplastic Anemia, Red Cell Aplasia,

Postby Sam Goddard » 30 Jul 2014 02:00

Hi Russell,

Wow from your signature it looks like you are leading a far more than normal life post transplant. That's great!
I'm from a small town called Glossop in Derbyshire, and I am being treated @ Manchester Royal Infirmary.

Yeah it would be great if we could talk. Do you mean talk on the blog, email or on the telephone? If you want to talk on phone or email you can send your contact details to sj_goddard@btinternet.com.

Thanks for getting in touch.
Sam Goddard
Sam Goddard
Posts: 5
Joined: 07 Jul 2014 12:53
Contact:

Re: Awaiting Transplant - Aplastic Anemia, Red Cell Aplasia,

Postby Sam Goddard » 15 Sep 2014 14:26

I spoke to Russell, wow what an amazing guy. He was friendly and supportive, and gave me some good things to think about going into this BMT.

I am going to have my Hickman Line put in tomorrow, and go into hospital for the start of my transplant on Wednesday 17th September (this wednesday....aaarrgghhh scary!). Blimey that has come around fast. I would just like to say that it has helped put things into perspective talking to other people who have been through the transplant process. It seems that each person who goes through this treatment reacts different, so I will try to keep you posted. I am setting up a blog for my friends and family but will give anyone in this group access once it has been set up. It will give me something to do each day and allow people who are intrested to keep up with my treatment.

Just also like to thank my wife Joanne for being a smashing support to me so far, also to everyone who has said they are praying for me. My wife and kids are shaving my hair tonight, we are making it a funny thing, so that its not a shock for them when it falls out in hospital. Will post again when Blog is set up. Thanks.
Sam Goddard
Posts: 5
Joined: 07 Jul 2014 12:53
Contact:

Re: Awaiting Transplant - Aplastic Anemia, Red Cell Aplasia,

Postby Sam Goddard » 16 Sep 2014 23:00

Hey Peeps,

I have set up the blog on the caringbridge website. If anyone wants to see how I progress through this reduced intensity stem cell transplant, click on the journal tab once the page loads. Anyone who wants to leave a message please feel free. I will try and post every day, but when im unable my wife Joanne said she would fill in for me.

The link for the webpage is : http://www.caringbridge.org/visit/samgoddard

Thanks
chris
Posts: 576
Joined: 01 Dec 2009 21:52
Location: Essex
Contact:

Re: Awaiting Transplant - Aplastic Anemia, Red Cell Aplasia,

Postby chris » 25 Sep 2014 22:38

Dear Sam

Thanks for the link. I will go on and check your progress!! Wishing you a successful transplant.

Keep well

Chris
Chris. (F) Age 65. MDS diagnosed in 2008. Closest sub-type is CMML-1 but with anomalies! Normal red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
Russell
Posts: 52
Joined: 15 Apr 2010 16:56
Location: Stoke Poges, Bucks
Contact:

Re: Awaiting Transplant - Aplastic Anemia, Red Cell Aplasia,

Postby Russell » 10 Jan 2015 11:03

Sam, not everyone sees your updates on your blog. It would be great if you could update the MDS Facebook page too!
Hope you are feeling better, I know its been a bit rough.

Russell
[color=#0000BF]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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