Father's MDS

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Father's MDS

Post by Bexybloom » 02 Oct 2014 12:44

Hello all,

New poster here just after some advice about my dad..

He is 66 and was diagnosed with MDS in June this year - unfortunately, he wasnt told what type he had but was advised that he would need an immediate BMT which is due in November
He has been having having blood and platelet transfusions since diagnosis ( platelets every 3 days, 2 units of blood a fortnight) and has been relatively stable up until September.
His blood levels are not great, he is classed as neutropenic and has low platelets and his RBC levels are always low too.

In September he suffered a massive posterior nose bleed due to a bruise on the roof of his mouth and ended up in hospital for a week as they cauterized the bleed and his CRP levels were very high (395!) and as he is neutropenic, they pumped him full of every antibiotic going.

We got him home and he just hasn't been the same since - he has been weak, tired all the time, persistent cough and blood transfusions are no longer making a difference to how he feels (which they used to) we assumed it was because he had been through a lot etc... but now im not so sure - i think his MDS is progressing.

He is at hospital today having blood tests and platelets and he suddenly started having another nosebleed - he has also started having tightness in his chest and has his cough has gotten worse along with sweats and the shivers.

He is due in London to see Prof Judith Marsh on the 27th of this month as his Oxford consultant wanted her to confirm diagnosis - im worried he is too weak now to travel and this will all end up pushing his much needed transplant back.

He has seemed quite depressed and down in the dumps in recent weeks which is a mirror opposite of how he was before he had his nosebleed.The fight has seemed to go out of him and he seems visibly weaker and weaker...

I dont know the exact ins and outs of his consultant appointments and my mum goes with him and we get told second hand from them about what is happening - im getting so worried that we will lose him now...his counts are so bad.

Its horrible seeing someone you love so much getting so ill so quickly and there being nothing you can do to stop it.. In April this year he was fine, and now he looks like he is dying. Im due a baby early Jan and now im worried he wont be around to see it born....

Sorry for the essay, but im struggling to find anyone who understands as no-one seems to know about MDS - not even doctors it seems some of the time!
Posts: 249
Joined: 20 Nov 2008 14:05

Re: Father's MDS

Post by sophie » 02 Oct 2014 15:03

Hello Bexy,
sorry to hear your Dad is struggling so much and it is not surprising he is feeling low emotionally as well.
You could try to see if King's has an earlier appointment for him - as the 27th Oct is still some time away.
You would need to call Prof Mufti's assistant for that.
If you can give us a call, I'll provide you with all the details.
Apologies, but we cannot comment on the clinical aspects of the disease, as this discussion forum is not set up for that.
But do make sure you also speak to the clinical nurse specialist who looks after your father, not just the transfusion nurses.

All the best,
Sophie - Patient Liaison
For any queries:
Call 0207 733 7558
Email mds-uk@mds-foundation.org

Please do not send me PM messages on this forum - I do not check it often.
This forum is purely for patient to patient communications. Thanks for your help.
Posts: 637
Joined: 01 Dec 2009 21:52
Location: Essex

Re: Father's MDS

Post by chris » 09 Oct 2014 22:52

Dear Bexy

So sorry to hear about your Dad. It is so frustrating to have to wait for these appointments, especially in your position when you are getting information filtered through your parents. Sometimes this disease kicks off very quickly but then becomes more stable as the body seems to compensate for the low blood counts. I hope you are able to bring the appointment forward a bit as that will ease the waiting around and I also hope that your Dad starts to feel a bit better soon. At Kings, they have a counselling service for MDS patients. It might be worth asking if your Dad's local hospital also provides this support if he is feeling depressed?

I wondered if it might also help you to talk to somebody "neutral" about your own concerns - maybe a Macmillan counsellor - as you do need to take care of both your physical and mental health during your pregnancy? You seem also to have some practical concerns about how your Dad will cope with the travel. Do they have any friends who could drive them and drop them off at Kings? Please ask Sophie about this as she knows the hospital well.

Take care

Best wishes

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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