My Story - Kay

[Yak]

I always feel a little guilty after reading/hearing other stories as although MDS is part of my life, its practical effect on my life is limited.
My MDS story began back in 2000. At the time I was living in North London and it was very rare for me to go to see the doctor, but I had to do so to get a lump checked out. I was referred by my GP to the local hospital (Chase Farm in Enfield) and as part of the tests I was asked to give a blood sample. Obviously I didn't see the blood sample as being a major part of what was being checked, so when I rang the GP and was told by the receptionist that the test had shown an abnormality, you can imagine that I started to panic. [-x

When I had a follow-up appointment to discuss the results at the hospital, without any prior indication of what was to come I was told that I had a blood disorder, was given a run-down of what it meant and was given a leaflet for a support group to contact. It was done reasonably sensitively. I was told that I had ITP (Idiopathic Thrombocytopaenic Purpurrae), and that my main issue was a low platelet count, albeit not one to adversely affect my life dramatically. A bone marrow biopsy was arranged to confirm the diagnosis. I got in touch with the ITP Assocation (excellent organisation) and there then followed a period of a year and a half of attending the hospital about every quarter to monitor my blood. At no point were there any subsequent issues raised about my blood counts. It wasn't an entirely satisfactory experience - many times I saw a different doctor who had to familiarise themselves with my notes. However, the worst experience I had was one hot summer's day. As the attending rooms didn't all have windows, the doors were being left open between appointments. I was down to see somebody who I had never seen before, who I think might have been on a temporary contract. Whether he had different experiences of treatments I don't know, but I could hear him looking through and questioning my history with another doctor, "Why isn't she on steroids?" he said loudly. "She should be on steroids!" Immediately my hackles were up before the appointment - steroids are used sometimes for ITP treatment but certainly aren't a default treatment. It wasn't the most communicative of appointments!

As you can imagine, I wasn't exactly devastated that the move I made to Dorset in 2002 to be with my [now] husband meant changing hospitals. I was referred to the haematology department at the Royal Bournemouth Hospital and saw Dr Sally Killick. She looked through my file and told me that she wasn't totally convinced by my diagnosis and apologised that she wanted me to have another bone marrow biopsy to be sure. She explained what it was that she thought was a possibility (MDS) but suggested that I didn't do much in the way of internet searches as there was a lot of material out there which was both scary and inappropriate for me. Needless to say I did do some looking and did worry a little.

At the appointment after the biopsy she went through the results and explained that it had confirmed what she thought - that the original diagnosis was incorrect and that I had MDS. She explained that some of my blood counts were borderline in MDS terms and that my age also didn't point to MDS, therefore the original ITP diagnosis wasn't too surprising. As stated earlier, my issue is with my platelet count, which is below normal parameters but has never been at a level considered worrying; my white cell counts are also borderline. At this appointment, there was also a support nurse present, who I sat with afterwards talking things over and who made sure that I had her details for contact in the future.

Since then, I have remained in Dorset under the excellent care of Dr Sally Killick at the RBH. My counts have remained stable, and if anything my platelet counts have improved a little. I didn't have any obvious symptoms when the 'abnormality' was originally picked up - I'd always been aware that I bruised quite easily but I didn't suffer from nose bleeds or anything else that might have suggested an issue. So, who knows how long I had it before it was picked up, or how long it would have gone undiagnosed without that fateful test? Some nine years on from the original blood test I can't say that anything has really changed health-wise. I don't appear to be picking up any more bugs and they don't appear to linger any longer than for other people - of course this could be as a result of natural extra care taken as a result of being aware of having the condition.

So, I have MDS but monitoring is the only treatment I have needed to receive. Apart from avoiding aspirin and the hassles of obtaining travel insurance my life has not seen dramatic changes. I consider myself fortunate not only for that, but for happening to move to an area with a hospital with a high quality of expertise.

[cmid]

Hi Kay,I just read your story and it seems quite similar to mine. I was diagnosed with a bone marrow disorder back in 1999 when I was 15 years old. My family and I were told at the time that they couldnt give it a name, but that it was similar to Aplastic Anaemia and that there were some Myelodyplastic features.
I never really gave it too much though as I was so young and didnt fully understand, and also I was told to live normally as my counts were very borderline so was not at extra risk of infection or bruising. It was only after having my daughter in August last year that I really started to think about the problem as I started thinking more about the future. I was reffered to Kings College Hospital in London to have a bone marrow biopsy to try to get a more defiitive diagnosis.
I found out that the problem is more on the side of MDS than AA, so that is now my diagnosis and although my counts have remained stable for the past ten years I am now really worried about the future. My doctor told me that I should continue living normally as my white cells count and platelet count (the two afftected) are only just below normal values. I've been told that I have an IPS of 0 which i think means that my risks of developing AML are low at the moment but they did say that there is a chance I could develop it in the future I find it scary especially as when you look at MDS online you start seeing things about very low survival in terms of years, even with a good prognostic score. What I really want to ask you is do you find it easy to just forget about the MDS and continue with a normal life? Do you have any advice that could help me to worry less?

Thanks very much,

Carolyn

[Yak]

Hi Carolyn,
I was interested to read your experiences as they do have a similarity to mine.

My own experience has been that the worst time in dealing with the diagnosis is when you originally receive it. You are hungry for information but you are still coming to terms with the diagnosis and the possible implications. The two can make for an unhappy mix. I now find that for the majority of the time MDS is just another part of my life and it doesn't really bother me. I'm not going to pretend that from time to time I don't get anxious about it, but it doesn't happen that often.

You need to beware of the information overload. You have to remember that although there is theoretically an increased risk of AML, most of the statistics are based on an older age group under active treatment who are statistically more likely to get a whole range of diseases. As a younger patient, should it come to it you are more likely to be suitable for a bone marrow transplant and the speed of development of new treatments within the last 10 years bodes well for the future. So, if something should happen in the future it doesn't mean that there won't be options.

I think the main thing to say is that you are in the best possible position for somebody who has had an MDS diagnosis - you've shown long-term stability, your counts are only marginally out of the normal range and you don't require active treatment. Many other patients need active treatment soon after their diagnosis.

I've also found it helpful to be involved in the Patient Support Group, and if you can I would urge you to attend a Patient Forum as it is very helpful to make contact with other patients - the condition can make you feel very isolated.

I would be interested to know how your original diagnosis come about - did you have any symptoms? Were any special precautions taken during your pregnancy? How often are you monitored? Did you see Professor Mufti at Kings?

Please feel free to keep in touch with me via this forum or via email. I hope that some of what I have written will have proved useful to you, but please bear in mind that I may have questions to ask you too - it is useful for me to hear from a fellow minority group with a rare condition8-[

Kay

[cmid]

Hi Kay, thanks for the reply! I'm happy to answer any questions from you too.My original diagnosis came about because I developed Glandular Fever when I was 14 and took a long time to shrug it off, blood tests at the time indicated that my neutrophil count was slightly low so a bone marow biopsy was done. During my pregnancy, I was monitored once every 2 weeks for the 1st 2 months and as my counts remained stable I was then monitored once a month.

In the last two months of pregnancy my platelet count fell slightly to 80, but came back up again to around 100 by the time I delivered, so I was able to have a normal delivery and an epidural. I was blessed with a really lovely pregnancy without complications and my counts even rose during pregnancy (platelets and wbc were within normal parameters throughout) my counts then dropped back to what they were pre-pregnancy around 6 weeks after birth.

I havent yet seen Prof Mufti at Kings but I am hoping I will be able to meet him at my next appointment. I have been seeing Prof Marsh who told me that I should have my counts checked every 3 months initially, and if they remain stable they will extend the time between checks. How often are you monitored? My sister is going to be tested to see if she is a match to me, incase it is ever needed in the future.

I was told that I should just try to live 'normally' so that's what I'm going to try to do, and to remain hopeful about the future.
All the best to you

Carolyn

[Yak]

Hi Carolyn,
I'd be interested to know - do you feel that you actually exhibit any symptoms? I sometimes feel that it is a slightly unanswerable question and probably even more so for you - if you're diagnosed young, and presumably had it for some time before diagnosis, it's difficult to say whether you get tired more easily or anything like that. For my own part, I was always aware that I bruised fairly easily on my limbs, but that was about it.

I started off seeing Dr Killick every 3 months, which was then dropped to every 4 months. About 2 years ago she asked if I wanted to drop it to every 6 months but as I work very near the hospital it is very easy to get to appointments so I said I preferred to keep it at every 4 months. My sister was also tested in case it came to it in the future, but she wasn't a perfect match.

It sounds like your pregnancy went very well indeed!

Out of interest, what kind of levels are your counts at? At my last test platelets were 114, white cells 4.2, neutrophils 2.3, haemaglobin 13.1. My lowest/highest readings since I've been monitored have been 75/141, 2.4/4.6, 1.3/2.8 and 11.8/13.6 respectively.

In time, the impact of the knowledge does level off. Travel insurance is a pain though.

Kay

[cmid]

Hi Kay, I'd say exactly the same thing as you - I don't have any symptoms except being aware of bruising quite easily. My counts vary too WBC 2.3 at lowest 4 at highest. Platelets 100 at lowest -140 at highest Neutrophils 1 at lowest -2.5 at highest My HB has always been around 13. It sounds like our counts are very similar except your White count is slightly higher! Heres hoping my worrying will ease over the next few weeks! Thanks for your advice and its so nice to talk to someone in a similar position to me,
Carolyn

[Yak]

Hi Carolyn,Happy New Year! A month or so since we last posted - how are you feeling about things now?
Kay

[cmid]

Hi Kay,Happy New Year. Thanks for your message, i'm still finding it quite difficult to deal with - I am going to be having some counselling at Kings to help. I have always been a worrisome person and when i've got something playing on my mind I find it really hard to just let it go! Hopefully it will help me, although I did feel bad asking to speak to a counsellor as I know that there are people who are worse off than me.
I hope you are well and you had a nice Christmas and New Year!
Carolyn

[Yak]

Carolyn,I'm sorry to hear that this is still proving difficult to come to terms with. Hopefully counselling will help. When I was given my diagnosis my consultant had a counsellor on hand for me, which was really helpful in that initial 'shock' phase. It's also helpful to know that there is somebody available to talk to when you need to. You really shouldn't feel bad about asking for the support.
Kay