MY MDS Story

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

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buttnorm

MY MDS Story

Post by buttnorm » 30 Apr 2009 20:57

My story about MDS by Norman Butterworth from Greater Manchester
I was first diagnosed with MDS at the Royal Oldham Hospital in March 2007.
When I went for my Bone Marrow Biopsy in February 2007, the appointment was for 0830 in the morning and there were three of us for Bone Marrow Biopsy that morning. All three of us where taken into a small ward and shown to a bed then asked to get changed into the hospital gown and wait on the bed and told the consultant would be with you shortly, he finally arrived at about 0930.
But the whole process of the Biopsy was a form of psychological torture. First the consultant attended to a retired Lady, and as soon as the Biopsy started the lady patient, it became clear she was in a lot of pain and discomfort, because of a lot of screaming and tears all the time the biopsy was being performed on the lady patient. And all the time we other two patients just had to lie on the bed and listen to this going on. Then it became the turn of the next patient a very tall and well built man, and all through his Biopsy there was several large moans and groans could be heard from the male patient. And all the time this is going on all I could do was lay on the bed and think bloody hell it is my turn next. And by this time it is 11ocock in the morning after being in the hospital since 0830.
Then all I can say about the biopsy that it finally got round to me, and I was glad when it was all over and done and I could finely get dress and go home by this time it was dinner time.
And to this day I can not understand why as a patient I had to lay there for half a day on a bed going through psychological torture listening to other patient’s going thorough a biopsy procedure. What has happened to appointment bookings?
And at no time was any of the Patient’s or my self offered any kind of pain relief other than local anaesthetic.
Then came the day to go back to the Hospital for the results of the Biopsy, and it was same as before, we are shown into the ward and told to sit by the bed and wait for the consultant then after one and a half hour wait, he sat down and told me that I had Myelodysplasia. You are a grown man and all I can tell you is that you have two or three years of quality of life left. Because there is no known cause’s and know known cure to MDS, so go home and put your life in order. I was not offered any kind of support, or information into this disease I had to ask the consultant twice how to spell this word Myelodysplasia because it was a word that my wife or my self had ever heard of.
In all the time I have been going to Royal Oldham for blood test I have not been given any kind of information or support into this disease. On my last visit to see the consultant in December 2008, I ask the consultant what category of MDS I had he looks at his computer then say’s I don’t seem to have the full information on your file at the moment (HA HA that is a surprise) going with the rest of the help I have had at the Royal Oldham.
On this weeks visit Tuesday 21st April, I ask him once again what category of MDS I have; he then told me I have Refractory anaemia, when I ask as to what group of Refractory Anaemia I was in he tells me he only has me down in his notes as Refractory Anaemia and he had no other details at that moment.
At that moment I inform him that I attended the MDS UK Patient Support Group forum at St James on 14tApril. And inform him that I would like to be referred to a Dr David Bowen at St James University Hospital Leeds.


He then became very talkative, and tried to say that I would not get any better or difference in treatment at Leeds as to that I can get at Oldham. But I stood my ground and insisted I would like to be referred to St James Leeds. So all I can do now is see how long it takes to get referred to St James.

And I can say that the MDS UK Patient Support Group forum that I was invited to attend on Tuesday 14th April was a great success as I got to talk to a great bunch of people with MDS and they all gave a great deal of support and they where all very friendly and talkative. It was the first time since diagnosed two years ago that I was able to talk and see people with MDS. And it was good to listen to how positive people are, and how full of praise people were about ST James and the staff at the Hospital.

The MDS forum itself was very well attended by some very prominent people who gave a very good talk about MDS and the treatment that is available. And all the trials that are on going around the world, and that we are not alone out there. People are trying very hard to find a cure for this illness, and ways of developing better treatment for all MDS people around the world.
And I would also like to give a special thank you to Dr David Bowen, because he gave a very good talk on this illness and went into great detail and explanation on MDS and the different groups of treatment that are linked to this kind of illness.
And explain all the benefits and facilities that St James has to offer as a place of excellence for the treatment of MDS.

So I now have a lot better out look to this illness, after attending the MDS forum at St James, and I am now looking to the future with hope.


Yours thankfully
Norman Butterworth
whiskers
Posts: 18
Joined: 31 Mar 2009 15:41

Re: MY MDS Story

Post by whiskers » 06 May 2009 11:38

Hi Norman
Well your initial hospital experience was not very good was it? I think you would definately be better going to a hospital that is a recognised centre of excellence for MDS and related blood diseases.

My experience of a bone marrow biopsy (had two now) was just the opposite. I am 64 years of age and attended King's College Hospital, London, in February 2008 one of the leading hospitals dealing with MDS, Leukaemia, etc., having been referred on from my local hospital haematologist. I was told in a informative and gentle manner by my consultant, exactly what the proceedure was, why they were doing it, what was involved, offered the use of a sedative if I wanted (I declined this as I was driving, but but other patients did have it to some effect for pain-killing, but left them dozey for a while), and was treated as an individual in a private small side-theatre just for me. I did not have to undress, just lower my trousers and lift my shirt and adopt the feotal postion on the bed for the proceedure, and although there were other people with appointments for the same thing, we never met or heard a sound from anyone else. The proceedure, although very painful, was carried out with efficiency accompanied by quiet talking and even some humour from the doctor and nurse, presumably in an attempt to take my mind off of what was happening. It was all done very professionaly and I was out in under an hour.

The results were given to me by my consultant during my next clinic meeting in a private room (not on a ward!). I was told that I had MDS RA, (now defined as RCMD) exactly what that was, where it might lead, a possible average survival time of 2-5 years, possibly longer, subject to progression of the illness. What treatments I could possibly expect over time and the side issues regarding these, and also given a very useful booklet all about MDS and Leukaemia covering losts of areas to help understand the disease. Whilst with the consultant, a senior Macmillan Nurse was present and after the meeting she invited my wife and myself to her office to have a questions and answers session on any queries or worries and explained a lot more details about the illness and treatment. We left the hospital somewhat shocked as you would expect with that kind of news, but felt reassured that everyone there had carried out there work to professional and very caring standards, and felt relief that at least we had an excellent team to deal with my rather severe problem. My consultant is also very kindly and happy for me to email him with any questions or queries between clinic visits, which is reassuring and before my actual visit I update him with any problems or infections I may have had so he has chance to think about approaches before I even see him! Excellent service indeed.

I have been going regularly to the clinic, although it's a 120 mile round trip, and always have had excellent treatment and open discussions on any problems. Although my condition has worsened (see My Story elsewhere on the MDS Forum site). I am currently receiving at-home self injection treatment with regular weekly blood tests monitoring of Epo and G-CFS in an attempt to initially stop having to have blood transfusions (has six units in twelve weeks since Christmas) and am about to see my consultant next week to see how the first seven weeks of treatment has worked. It not curative, just an attempt at stabilisation of the progression of the disease, but come with dangers of sudden progression or problems with the white blood cells and platelets, hence the continual monitoring. Will have to wait and see what the results are so far!

Well I hope you have good luck in getting a referral to St. Jame's, under the Patient Charter you have every right to be referred to another consultancy if you wish, you GP may even be able to help if there is a problem, but your current Haematologisy at Oldham must respect your wishes, so press harder with determination, it's your 'life' that is at risk, so worry about upsetting anyone, go for it!

Best wishes

Whiskers
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