New member to Forum introduction

Moderator: Steering Committee

petertee
Posts: 6
Joined: 27 May 2014 17:17
Contact:

New member to Forum introduction

Postby petertee » 28 Aug 2015 15:03

Hello

I would like to introduce myself, my name is Peter, I have been following the MDS site for some time now in fact since I was diagnosed with Hypoplastic myelodyplasia, in March 2012. In May 2012 I underwent a stem cell transplant at The Christie, Manchester. I'm pleased to say that the transplant was a success.

To give a background to my story, a problem with my blood came to light in mid 2011. For some 10 years before this time I had been diagnosed with haemochromatosis, an excess of iron in my blood, this condition was managed successfully by way of venesection every 3 to 4 months, a simple process of taking about a pint of blood which was enough to keep the iron levels down. In between session routine checks were carried out on my blood and it was in mid 2011 that a drop in platelets levels was spotted. Checks continued monthly and each time the platelet levels had dropped. Levels dropped from about 70 to the high teens. I was referred initially to my local hospital haematology department and had a bone marrow biopsy. In March 2012 bone marrow failure was confirmed. A week later I was at The Christie and examined by a consultant haematologist who suspected aplastic anaemia/MDS. A further biopsy confirmed the MDS.

I was put in no doubt that a stemcell transplant was the only cure in my case. I was 63 years old at the time, self employed on a part time basis doing work I thoroughly enjoyed. I had no symptoms of any kind, I'm married with a grown up family and grandchildren and had a really busy social life, enjoying holidays and hobbies.
A stem cell donor with a perfect match was found on the Anthony Nolan donor register and I had the transplant in May 2012. I underwent a week of chemotherapy conditioning before transplant and spent 4 weeks in isolation in total. It took many months of recovery with many ups and downs along the way including pneumonia in the August following transplant, time in critical care and further isolation, there have been issues with GvHD and coughs and colds. After all this time a recent check up confirmed transplant was a success and obviously I am more than happy with the result.

On a day to day basis I can say that I don't have the same energy levels and from time to time suffer fatigue, I think I'm guilty of trying to do too much. Walking has been a great help, we go out a couple of times a week and joined a Macmillan walking group.

I got in touch with my donor after transplant to say thank you, we were anonymous for 2 years and then Anthony Nolan helped us both to get in touch personally, we both met up last year, but that's another story i could maybe share another time.
I also now volunteer with Anthony Nolan and this has been both rewarding and helpful to my recovery, I could maybe also share more on this later and especially if anyone wants any information on transplant, I would be more than happy to help.

Regards, Peter
chris
Posts: 577
Joined: 01 Dec 2009 21:52
Location: Essex
Contact:

Re: New member to Forum introduction

Postby chris » 12 Oct 2015 12:00

Hi Peter

Sorry for a long delay in responding. Had our first grandchild at end of June and it's surprising how many hours one can while away just holding and looking!!

It was great to hear of the success of your transplant - though the recovery does seem to be quite a long road to get back to "normal" levels of health and energy. When I was diagnosed I was told that 60 was the age cut-off for stem cell transplant so it's encouraging that they are pushing the limit upwards! It must have been difficult to embark on a stem cell transplant if you were actually feeling OK at the time!! Very glad that you are now in remission from MDS and long may your recovery continue.

Best wishes

Chris
Chris. (F) Age 67 (2017). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
chris
Posts: 577
Joined: 01 Dec 2009 21:52
Location: Essex
Contact:

Re: New member to Forum introduction

Postby chris » 12 Oct 2015 12:00

Hi Peter

Sorry for a long delay in responding. Had our first grandchild at end of June and it's surprising how many hours one can while away just holding and looking!!

It was great to hear of the success of your transplant - though the recovery does seem to be quite a long road to get back to "normal" levels of health and energy. When I was diagnosed I was told that 60 was the age cut-off for stem cell transplant so it's encouraging that they are pushing the limit upwards! It must have been difficult to embark on a stem cell transplant if you were actually feeling OK at the time!! Very glad that you are now in remission from MDS and long may your recovery continue.

Best wishes

Chris
Chris. (F) Age 67 (2017). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
chris
Posts: 577
Joined: 01 Dec 2009 21:52
Location: Essex
Contact:

Re: New member to Forum introduction

Postby chris » 12 Oct 2015 12:01

Have no idea why this was posted twice! Gremlins!!

Chris
Chris. (F) Age 67 (2017). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
petertee
Posts: 6
Joined: 27 May 2014 17:17
Contact:

Re: New member to Forum introduction

Postby petertee » 12 Oct 2015 22:47

Hi Chris

Thank you for your response and congratulations on the birth of you first grandchild. In May my 5 th grandchild was born.

I'm pleased that you are enjoying the experience , I too get a lot of pleasure from their company, from watching the eldest play rugby to pushing a pram with the youngest, helping out keeps us busy and fit!

Yes recovery from transplant was difficult, we were told at the outset it could take 12 months or more. Fatigue and risk of infections are probably the main issues. I have met and spoken to many post transplant patients and they have similar problems.

I have followed the forum since transplant. Your comments and those of other members have been really helpful.

Best wishes

Peter

Return to “Say hello and general messages”

Who is online

Users browsing this forum: No registered users and 1 guest