My MDS experience

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

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Holywood

My MDS experience

Post by Holywood » 25 Aug 2009 16:46

I am a 55 year old male and I was diagnosed with MDS in February 2008. I had my appendix removed in November 2007 and a following routine blood test initially showed that I was anaemic. Treatment with Iron supplements failed to have any effect and I was referred to my local hospital for further tests. The MDS diagnosis conversation was surreal; I didn't feel ill and had no symptoms. I walked four miles a day and had no tiredness whatsoever. How could I have this disease? The diagnosis was confirmed by the first trephine and aspirate and I continued to have regular blood tests. After three months, I was referred to Professor McMullin at Belfast City Hospital, who confirmed the diagnosis, but was not as pessimistic about my prospects as the earlier doctor. She was convinced that a mini transplant was a viable option in view of my age and general state of health at the time. However, this procedure is not offered at the City Hospital and I was referred to Professor Mufti at King's College Hospital in London. Normally, patients from Northern Ireland are referred to Dublin for these transplants but as I am English, there was a greater chance of a donor being found in GB. Neither my brother nor sister were matches; my brother was such a mismatch that they asked if we shared the same parentage!
I had my first transfusion in December 2009; I had been a donor for many years and it felt strange being on the receiving end! I had been getting more tired and my bloods were showing a gradual decline. I was still at work and walking four miles a day but had started to avoid unnecessary hills. My transplant was then fixed for February 2009 and I was on weekly transfusions. The transplant was cancelled a week before it was due to take place and although I was disappointed at first, having the inevitable deferred was almost welcome. A trephine and aspirate test in February showed 10% blast cells so I was admitted to the City Hospital for chemotherapy to knock them down. The treatment was DA 3+10 which I survived without sickness or other side effects. It was only when my immune system was blasted to hell that I picked up two infections and we discovered that I am allergic to penicillin! I took on the skin colour of a strawberry and felt quite awful. It was only the administration of anti-fungals that cured the infections. I was in for four weeks and then was certified for another four weeks before I went back to work.

A new donor was identified in April and the transplant was set for May this year. I was admitted to Kings on 27 May, my Dad's 91st birthday, and had a week of chemo before the transplant. On 5 June, I walked up to Denmark Hill station, met my wife from the train and we walked back to the Derek Mitchell Unit where at 14.00, I had the transplant. I lay on my bed and whilst my wife looked on and two nurses hooked up the bag of cells to my Hickmann line. They monitored my blood pressure over the 30 minutes it took for the cells to transfuse and that was it - no pain, no surgery, no blood (at least not mine!). I was discharged three weeks later and since then, apart from a week in City Hospital when I caught an infection through my Hickmann line, I have been getting stronger day by day. My stay in hospital coincided with The Open so it wasn't all that bad! I hope to go back to work after transplant + 100 days on 13 September, part time at first but building up to full time after a month.

The worst part about all of this is the effect it has on your nearest and dearest. Of course I told my wife first and it was a hammer blow for both of us. She has been a massive support and has been with me at all of the consultations. I next told my brother and sister as they were to be contacted about becoming donors. As they both live in England, this had to be done over the phone and I would rather have done it face to face. They have both been hugely helpful and came to see me when I was at Kings. My own children were next but we only told them when the diagnosis was confirmed at the City Hospital and I was due to go to Kings. They are in the early twenties/late teens and had a surprisingly mature attitude to the whole thing. We were always close but this has made the bond much stronger. I didn't tell my Mum and Dad, both very aged, until November 2008. It was the one conversation I was dreading and I wanted to be prepared for all their questions. My wife was with me and shared the burden of reassurance but I still think the enormity of the situation was lost on them.

You can't go through this without a support network. Old friends came out of the woodwork and those at work could not have been better. Prayers have been said for me in churches, chapels, cathedrals and mosques! I have sailed through this without any side effects and I am sure others have suffered more in their anxiety.

I believe my incident free treatment and recovery would not have been possible without the medical staff in City Hospital and Kings who have demonstrated throughout this process that they have my best interests at heart. I was told all the worst that could happen and read the Leukemia Society's pamphlet on transplants. You have to remember this is the worst case scenario and there is no reason why this should happen to you. Certainly, the doctors and nurses will do all they can to prevent sickness, rashes, mouth problems etc and you have to trust them. Also, you have to accept that you need treatment. I could not have faced a life of declining health and frequent visits to hospital for transfusions and chemo. I have been given this chance and grabbed it with both hands. Anyone with doubts about a transplant should bury them now - the worst does not always happen and with any luck, you may have the same experience as me.

The nurses do the donkey work and they are the best. It would be unfair to single anyone out so I owe a big debt of gratitude to all those on Derek Mitchell Unit and Davidson Ward at Kings and those on 10 North and the Cancer Ward 1 at City for everything they have done for me. Also, the food at Kings is brilliant! I never thought I could have a curry in a hospital!

Lastly, my undying thanks go to my donor. I know nothing about him, other than that he is 43. He sent me a very touching card when I left Kings and, although I know I will never meet him, I would like him to know that I and my family are forever grateful.
Rebecca

Re: My MDS experience

Post by Rebecca » 29 Aug 2009 17:17

I'm glad thay you are recovering well from the transplant. My dad (65yrs) went to kings last week and is going to have the bmt (i think) I printed out your story and showed it to him. Made him emotional but really positive. Thanks so much for writing this as it made my dad feel better! I hope you continue to stay healthy.

Take care Rebecca
Rebecca

Re: My MDS experience

Post by Rebecca » 29 Aug 2009 17:17

I'm glad thay you are recovering well from the transplant. My dad (65yrs) went to kings last week and is going to have the bmt (i think) I printed out your story and showed it to him. Made him emotional but really positive. Thanks so much for writing this as it made my dad feel better! I hope you continue to stay healthy.

Take care Rebecca
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