David - breathlessness

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david
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David - breathlessness

Post by david » 05 Oct 2012 15:09

I wonder if anyone else has significant problems with breathlessness.

It has been my major problem through 3 years of MDS. Understandable in the first year when I was having increasingly frequent transfusions.

But Azacitidine stabilised my counts and I have now been free of transfusions for some 20 months now with Hgb around the 11 /12 mark.

But it continues to get worse to th point that at my best I can only do short walks at a slow pace and some light jobs around home, but at its worst can hardly cross the road and often have had to be taken round the hospital in a wheelchair. No pain and am quite ok at rest - just very limited in what I can do before running out of breath

GP thinks MDS or Chemo but Consultant doesn't and specialist respiratory referral finds no problems, so it seems like something I just have to live with.

I would much appreciate hearing if anyone else has similar problems

David
David
Age 75 West Yorkshire
Diagnosed Nov 09 - RCMD since progressed to RAEB but now in remission following treatment with Azacitidine
chris
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Joined: 01 Dec 2009 21:52
Location: Essex
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Re: David - breathlessness

Post by chris » 08 Oct 2012 13:35

Hi David

Yes, you have been suffering with this for quite a while now, haven't you and I guess it is a disappointment that the Aza - though improving your counts- has not improved this major and bothersome symptom. Again, I wonder how much is to do with the numbers (i.e. cell counts) and how much to do with the "performance" of the cells in question? The other thing which concerns me generally is that one oftens lays evey symptom one has at the door of the main disease when it is possible that other diseases are creeping in and being attributed to the MDS!! Not sure if I have asked you this before but have you had a treadmill test for angina or had heart problems investigated? I think that once we get into a department for a particular illness, we tend to get stuck there and might miss out on the specialist skills of another clinical department!! I know you have been to a chest specialist but maybe your GP might refer to a heart specialist?

David - was it you at the London Forum last week - there are a few Davids about on this Forum and some also on Vidaza!

Best wishes
Chris
Chris.Trustee,Patient Support Ambassador (Essex) (F) Age 73 (2023)).Diagnosed in 2008. CMML-1. Normal red cells, low white cells & platelets, slightly raised monocytes. Enlarged spleen. Not had any treatment - active monitoring 6-monthly.
david
Posts: 20
Joined: 19 Nov 2010 15:58
Contact:

Re: David - breathlessness

Post by david » 14 Oct 2012 10:24

Hi Chris

No it wasn't me at the Forum

Yes it is all too easy to assume every new symptom to be part of MDS or Chemo and I probably went down this road for a long time before being prompted to check that something else wasn't going on. But all tests have proved negative from lung function tests, CT scans, X-rays and ECG. I have never had any heart problems or angina pains. It all remains a mystery. I think I can also assume that it is not a common symptom among members of the forum.

I recently had a short spell in hospital with an infection and low neutrophil count and pushed breathlessness with every Dr I saw and again had an ECG and arterial blood gas check but no clues and it was left that my Consultant would discuss further management with me at my next clinic. As it happened at the last minute that had to be covered by the Registrar so it will be late November when I see her again.

I did query whether I could have reasonable Hgb counts but that it was not 'best quality' but the answer was no. So I continue to seek answers.

Fortunately although it can at times significantly limit my life, I am ok if I do nothing and I continue to be at ease with myself.

Thanks for your message and best wishes

David
David
Age 75 West Yorkshire
Diagnosed Nov 09 - RCMD since progressed to RAEB but now in remission following treatment with Azacitidine
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