My Experience of Being Diagnosed with MDS

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My Experience of Being Diagnosed with MDS

Post by steveungi » 02 Dec 2013 17:16

My Experience of Being Diagnosed with MDS

For about 12 months, I suffered from a great lack of energy as a teacher at Rookwood School in Andover. I found that adrenalin got me through the school day but as soon as the bell went at
4.00 pm, my energy levels depleted astonishingly quickly. At times, I found it very difficult to cycle home, which was a flattish 7 minutes journey. During this very long period, I went to school early; worked though my lunchtime and completed all work before attempting to go home. It caused me great distress, as although I was 65 years old my fitness level was up to that period very good and I felt like an old man of 80. Ascending a few stairs was a major challenge and walking was a great demand on me. During this year, I visited the doctors 6 times about my energy levels and had as many blood checks. Amazingly, after each test I phoned up my surgery only to be told by the receptionist that all was well. The problem caused many heated discussions with my wife as not only was I weak, and tired but I was also feeling very down.
I decided to book an appointment with the “well men’s clinic” and it was at this session that the doctor realised there was a problem and booked me an appointment with a cardiologist at Winchester hospital. I was informed at the hospital that I was quite ill and needed to see a blood specialist at which I was told that I was suffering from MDS and I would require weekly blood transfusions and that I had a limited life expectancy. Not only that, but I was also informed that I had been suffering from MDS during my last year as a teacher. I could not believe that this was happening to me. I then went through a very dark period of planning my funeral, preparing a speech for my funeral and trying to imagine my death; when it would come and how it would creep up on me. I felt exceptionally bitter that my doctor did not pick this condition up earlier, as it would have have saved many heated discussion with my very supportive wife as to why I had so little energy and to why I felt so down for a whole year.

I started my blood transfusions at the Winchester hospital at the Admissions and Discharges Ward. The team of superb nurses was led by and amazing sister; Sister Sarah Wood. They were incredible each and every time I went for my transfusions; always happy and cheerful and they could not do enough for their patients. Following each and every blood test that I had at Andover I plotted my haemoglobin, white blood cell counts and neutraphils in an Excel spreadsheet which gave a more informative graphical layout on how my blood was fairing (I would thoroughly recommend that you do this).

During the period of about 7 months I could not understand why after some transfusions I felt good yet after others it appeared to have no positive affect. Being an aviation engineer in the Army I was quite keen on why this was the case and realised it could only be that there was no fixed standard of the quality of blood that I received. I discussed this with my haematologist who confirmed that this was the case as the donors were from different age groups. This did get me down, as it was frustrating having to sit in a hospital ward for 6 hours only to feel little positive improvements after some of the transfusions.

My wife found out about the MDS Society, and discovered through them that there was a specialist at Bournemouth County Hospital on MDS and recommended that I get an appointment through my doctor. This was done, and I saw Dr Killick who was exceptionally informative about my condition and gave me hope about my future and the possibility of a bone marrow transfusion. I saw a specialist in this area and was offered a bone marrow transplant but was amazed at the cost of the treatment and the lack of information from patients of a successful journey down this path. I decided after many discussions with my wife that this was not for me.

Through Dr Sergeant of Basingstoke hospital I was offered the chance to try out EPO injections In April 2013, what a change this made; I could walk upstairs a lot easier and my stats started to improve. Initially, I injected the EPO injections on a weekly basis, then for a few months on a two weekly basis and now I am on 3 weekly cycles. It has made a fantastic improvement to my life and both my wife and I look forward to more time together.

I would recommend anyone who has been diagnosed with MDS to:

join the MDS society and view their website,

phone up Sophie and discuss all of your issues with her as she is an incredible listener and has a wealth of knowledge,

not think that it is end of the world as there are options, attend MDS meetings (see website),

ask questions at your haematology appointments; if you do not understand what is being said then ask for clarification,

try and exercise; I can thoroughly recommend Tai Chi,

motivate younger people to give blood.
Posts: 640
Joined: 01 Dec 2009 21:52
Location: Essex

Re: My Experience of Being Diagnosed with MDS

Post by chris » 03 Dec 2013 16:07

HI Steve

Good to hear from you again. Glad that you have resolved the thorny question of " to transplant or not" and that the EPO is really helping you. A recent study shows that people with low-risk MDS survive longer without a transplant and that has helped allay my concerns that I was "missing the transplant boat".

Incredible that you had all those blood tests when you were feeling so ill and the anaemia was not picked up!! Might it be worth sending your GP practice a copy of the MDS GP Factsheet - available from Sophie or from this website?!!

The dark period you spoke of rang bells with me and it's important that people recognise what a devastating effect this diagnosis can have. For me everything became rather pointless - as though I was just marking time until the final illness took hold. You've made me think about taking up Tai Chi. A New Year resolution!!! I can't do any violent exercise as I am concerned about damaging my spleen and an umbilical hernia.....but I would think this might be gentle enough and it might also help my head!!!

So glad to hear about the improvements you have experienced and I thoroughly endorse all your recommendations below!!

Kind regards

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
Posts: 52
Joined: 15 Apr 2010 16:56
Location: Stoke Poges, Bucks

Re: My Experience of Being Diagnosed with MDS

Post by Russell » 04 Dec 2013 08:35

Hi Steve

I fully remember the same thought processes when I was first diagnosed. Luckily for me, however, my GP was immediate in spotting something major was wrong - within 2 hrs of going to the surgery complaining of exhaustion I'd had a blood test, got the results back, and told there was a serious problem. The next morning I had an emergency trip to hospital for 3 units of blood, a biopsy and the inevitable shock... And, like you, the hospital staff were amazing. Unlike you, I've had a transplant. Possibly because my MDS was quite far advanced and possibly hidden for some years due to my attempts at keeping fit, and a transplant was the only alternative. Like Chris, I'm surprised your anaemia was not picked up, but MDS is a highly variable disease it seems - I was unable to function with Hb less than 9 but I've heard of people still working normally on 5!

Keep positive and please let us know how you are doing.

Age 55
RCMD 2009 at age 49
1x MUD BMT 2010
1x MUD SCT 2010
1x Haplo Transplant 2010
4 Marathons
4 other Half Marathons, a 10 miler and a Spartan Race!
Posts: 63
Joined: 01 Apr 2015 10:15

Re: My Experience of Being Diagnosed with MDS

Post by Goldtooth » 01 Apr 2015 19:14

Dear Steve,
Like you my doctor didn't spot anything wrong despite me having repeated sinus infections, nose bleeds and anaemia.
When I had a FBC another doctor at the practice phoned me to say I had a bone marrow problem, my own GP dismissed this and said it was nothing to worry about.
Eventually I saw an ENT consultant privately who immediately referred me to a haematologist who took blood tests and did a BMB and diagnosed RAEB2.
I am starting cycle 4 of Azacitidine on 9/4 and have had no adverse reactions, although I get anxious at each blood test as if successfull the drug only lasts 1-5years.
The hospital is marvellous and has arranged for me to see a counsellor to help me cope with the fear and panic I feel at the moment.
I feel physically fit but an emotional wreck, you sound as if you underwent the same feelings.
I'm a lot older than you are but I'm not going down without a fight.
Best wishes and good luck to you.
Ps couldn't run a marathon but I walk five miles a day
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