My MDS story

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

Moderator: Steering Committee

Post Reply
TimCooper
Posts: 6
Joined: 20 Jan 2016 21:06
Contact:

My MDS story

Post by TimCooper » 24 Jan 2016 00:58

It was late 2012 when I started bruising easily, I just put it down to bashing myself at work due to working in cramped conditions. It wasn't until October 2013 that I got a neck infection and leg boils which wouldn't respond to antibiotics which made the doctor send me for a blood test. I was called back that day and was told my neutrophils were 0.53 and I had to have a full body ct scan and a bone marrow biopsy. This revealed nothing and I was diagnosed as having neutropenia.

It wasn't until April 2014 that my local haematologist told me that he had sent my bone marrow to a specialist in Birmingham and was arranging a appointment with him, this was when I was diagnosed with MDS at 41. His recommendation was to have a stem cell transplant as I was young and fit enough to withstand the treatment and that I was in the high risk category of developing AML.

In August I was told they had found two 10/10 matches and would be proceeding with the transplant in September. The day after having my Hickman line inserted I was admitted for my treatment. I had two days of chemo in Birmingham, then off to Coventry the following day for 8 sessions of total body irradiation (TBI). The chemo was the nastiest of the two as it affected my sight and left a metallic taste in my mouth, with the anti nausea drugs they give you I managed to only throw up a few times. The following day after my last TBI cycle I had my stem cell transplant back in Birmingham. The next week was uneventful bar a bit of nausea then I had a temperature spike, not a small one I was hovering around 40 degrees with the highest being 41, it was like being cooked alive (you haven't lived until you've pealed the skin off places you wouldn't expect to peal it) with intense pain in the head which no painkiller would touch. They were close to sending me to the high dependency unit as I needed constant care. This lasted for around a week until they gave me a course of steroids, about a week later I was discharged into my parents care.

Things were going well for a couple of weeks despite developing a sore throat a few days after being discharged. Then I had a temperature spike which led me to having 5 days of antibiotics in hospital. I was discharged again and had a routine clinic appointment 3 days later. After saying that me sore throat still hadn't gone away my doctor felt my throat and said I felt warm. After a temperature check I was 38.8 and was admitted once again. I didn't leave for another 4 months.

I was still having temperatures spikes and the sore throat wasn't going away. The ENT team came and stuck a camera up my nose to see what was going on with my throat, this revealed a patch which needed a biopsy. This turned out to be necrotic and needed further investigation. Before they could send me to surgary my platelets dropped to a level where it would be dangerous to operate. This was just the beginning of my blood problems, over the next few weeks all my blood levels dropped to dangerous levels, especially the platelets which went to zero and stayed that way for months. It was becoming apparent I was rejecting my donors cells and with my problems mounting it was decided to give me the rest of my donors cells and arrange for the second donor to be on stand by in case the top up failed.

With the blood levels being so low other problems developed. I started haemorrhaging which effected the eyes first, making the muscles which control eye movement useless and giving me severe double vision this progressed to severe vision imparement caused by blood floating in the eyeballs. I also started to get severe pain in my low half of the body which eventually led me to being bed bound. By this time I was haemorrhaging from everywhere and had slipped into a unresponsive state. My parents were called a couple of times to expect the worse and to come and visit. They suspected I had a bleed deep in the brain but couldn't do anything about it due to my platelet count. The doctors did not know why my body was doing as it wasn't classic acute graft vs host disease. I was the mystery case.

Despite having my top up on New Year's Eve it wouldn't be until the beginning of February that my platelets started to gradually rise and I regained some of my sight and started to move around the room. By the beginning of March I was discharged to begin my lengthy rehabilitation. The doctors still don't know what happened or how I managed to survive. I've been told by one that he thinks it was an extreme case of GvH disease whilst others still say it's a mystery and it's a miricle I'm still here.

I'm now full donor and they say my mutated chromosome has corrected itself and I'm MDS free, I probably won't get the full all clear for another year or so but my platelet count is now 131 and I started work again last week.

I've been left with a few problems since my transplant. I'm partially sighted in one eye and I still have pain and numbness in my feet and legs all the time called peripheral sensory neuropathy which requires me to take a powerful opiate to numb although it doesn't get rid of the pain completely. I'm also testing positive for EBV at the moment which requires regular blood tests.

Even though there were times during the darkest days in hospital I wished I hadn't got the stem cell transplant, I would recommend anyone who reads this to have the transplant. It will be difficult at times but I am a rare case and the vast majority have little or no problems. So DO IT it, maybe the only way to save your life. It saved mine!

I would like to thank all the doctors, nurses, the support staff and the cleaners for keeping me sane and my spirits up when it was needed. THANK YOU.
petertee
Posts: 6
Joined: 27 May 2014 17:17
Contact:

Re: My MDS story

Post by petertee » 24 Jan 2016 22:51

Tim
This is some story and despite all you have gone through it does appear the donor cells have taken over which is wonderful news. It does sound like an extreme case of GvHD and thankfully not one we hear of often. You sound very brave and positive and it's good news that you are back at work.

I'm sure your experience will be helpful to other members and anyone facing a transplant.

Sorry I can't help re EBV but it sounds like you are being well looked after by your medical team. Hope your progress continues and maybe keep us updated.

Best wishes, Peter
TimCooper
Posts: 6
Joined: 20 Jan 2016 21:06
Contact:

Re: My MDS story

Post by TimCooper » 28 Jan 2016 22:37

Thanks Peter,

Yeah I'm in good care and I'm positive for the future. The ongoing problems will hopefully go away although I've been warned they could be permanent, but if they are so be it!

All the best,

Tim.
Brian_adair2000
Posts: 11
Joined: 23 Dec 2013 17:32

Re: My MDS story

Post by Brian_adair2000 » 29 Jan 2016 10:22

A truly inspiring story that you can remain so positive regardless of what you have endured.
Thanks for sharing and I hope things continue to improve.
chris
Posts: 601
Joined: 01 Dec 2009 21:52
Location: Essex
Contact:

Re: My MDS story

Post by chris » 02 Feb 2016 19:34

Hi Tim

That's one helluva MDS/ transplant "journey"!! You must feel a lucky man to have survived it after all the crises you described. Stem cell transplant is no picnic but when it's your only option you just have to bite the bullet and hope for the best. You certainly owe your life to the skills of the medical support team and it was so good to hear that all is looking a lot more optimistic now. I hope that eventually the EBV will get sorted out as that can be very debilitating.

Thanks for sharing your story with us and very best wishes for the future.

Chris
Chris. (F) Age 69 (2019). 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
TimCooper
Posts: 6
Joined: 20 Jan 2016 21:06
Contact:

Re: My MDS story

Post by TimCooper » 13 Feb 2016 20:22

Thanks Brian and Chris,

It was an experience for sure and its effected me both physically and mentally. I remain positive a lot of the time but the whole experience and the on going problems tests my positivity on occasion.

I think I just wanted to tell my story as a true reflection of what can happen, both good and bad and that it's worth the risk.

All the best,

Tim.
punda milia
Posts: 22
Joined: 01 Oct 2012 14:08
Contact:

Re: My MDS story

Post by punda milia » 03 Mar 2016 17:48

What a very interesting and inspiring story Tim. I do hope that you will improve even more. In any case you have come through a very difficult and hazardous journey
66 year female. Diagnosed with mds 2012. In 2002 treated for Non Hodgkins Lymphoma with chlorambucil. Have enlarged macrocytes, low neutrophils & low white cells. Also have Trisomy 8 & classified Intermediate 1. Now on watch & wait
Post Reply

Who is online

Users browsing this forum: No registered users and 1 guest