Just a bit of an update and hopefully some advice

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

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

Just a bit of an update and hopefully some advice

Post by Brian_adair2000 » 07 Dec 2015 16:19

I was diagnosed two year ago with low level mds.
Went onto epo but i'm afraid it didn't work, so last year, 2014, started blood transfusions. I only had six units over the whole year.
Started to get worse from about January and needed transfusions monthly with Hb dropping to around 8 or so before the next transfusion, my symptoms when my bloods are low are, headaches in the mornings, palpatations, breathlessness and a rushing or pumping sound in my ears.
I had a second BMB in the summer and no dramatic change however my whites and platlettes are also dropping. Was getting severe stomach pains, and scans and blood tests showed a enlarged liver and spleen. I had a liver biopsy a few months ago and despite being transfused platlettes before the procedure I bled out and ended up in intensive care for several days.
The results have shown that I now have haemachromeatosis and I am now on iron chelation five nights a week.
My transfusions look like they will increase in frequency to every three weeks from four.
My question is has anyone had similar experiences as I read somewhere that iron chelation can decrease the frequency of transfusions and in general how did things go.
Apologies for any spelling mistakes as my spell checker doesn't seem to be working.
PS I'm working full time but I'm struggling so probably not for much longer.
Brian_adair2000
Posts: 11
Joined: 23 Dec 2013 17:32

Re: Just a bit of an update and hopefully some advice

Post by Brian_adair2000 » 10 Dec 2015 07:57

Bit of an update, I've now been diagnosed with Congestive Heart Failure which is maybe why I've been feeling so terrible lately and why the transfusions aren't having a great effect. Most likely caused by either fluid build up because of all the transfusions or a build up of iron in my heart again because of the transfusions.
In a sort of odd why its a bit of a relief, in that I'm on iron chelation, which hopefully will remove the iron and I'm going onto a tablet that will reduce the fluid in my body, therefore relief in that its not a further deterioration in my mds.
Funny the small straws you'll grasp at.
Brian_adair2000
Posts: 11
Joined: 23 Dec 2013 17:32

Re: Just a bit of an update and hopefully some advice

Post by Brian_adair2000 » 10 Jan 2016 09:35

Well things have gotten worse and it looks like I've a big battle ahead of me.
Transfusions aren't having much benefit and I'm down to weekly, with my Hb hovering between 7 and 8, whites 1.2, and platlets about 45-50. My consultant has decided that my spleen, which is swollen, has to be removed.
Apparently due to my condition a very risky operation.
Please someone out there tell me you've gone through it and alls been ok, I'm feeling very scared right now.
NW1958
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Joined: 13 Nov 2014 11:30
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Re: Just a bit of an update and hopefully some advice

Post by NW1958 » 11 Jan 2016 13:22

Hello Brian
I wish I could say, been through it and all Ok, but I havent been through it in the same way. Just wanted to wish you well and try to stay positive.
Nigel
Male, Aged 56, Still working, Recent diagnosis, Based nr Exeter
chris
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Joined: 01 Dec 2009 21:52
Location: Essex
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Re: Just a bit of an update and hopefully some advice

Post by chris » 14 Jan 2016 17:48

Hello Brian

Sorry to hear about changes in your MDS situation. I also have an enlarged spleen for the past 7 years. Not sure what criteria there are for removing it but it's not been suggested to me. Mine measures at least 19.5 cm across (I say "at least" because I queried the ultrasound doctor last time it was done as to why it had remained at this size for so long and was told that this was the maximum measurement they could get on the equipment they had!! So for all I know it's even bigger than this!!). I get occasional stabbing pains in it, some left shoulder pain and it does feel tender at times but otherwise not that bothersome,

I guess you need to ask your doctor again why the spleen has to come out and what the benefits, risks or disadvantages might be? With low platelets it certainly would be a challenging operation I would think. If you're not sure, you could ask for a second opinion - if you're not already at a Centre of Excellence for MDS? Do speak to Sophie who can explore this with you.

I also read on this forum of somebody who had a spleen repaired following injury. It's an organ which supports your immune system so I don't think it should be removed unless absolutely essential!!

Hope you can get your questions answered to your satisfaction.

Best wishes

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
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