More infection and advise please on visiting a Centre of Ex.

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

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red
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Joined: 22 May 2013 14:25
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More infection and advise please on visiting a Centre of Ex.

Post by red » 02 Oct 2014 20:18

Hi All,
I'm on the Merry go round of antibiotics again. I have an infection in one oe my back teeth which has gone in to my jaw bone. As my platelets and neutrophils are very low I will have to have a transfusion before it can be removed. I saw my Haematologist on Tuesday and tried to talk about treatment for the type of MDS I have. Alll I got was with your skin condition you would not be able to cope with the treatment . I've asked my GP for a referral to a centre of excellence in August and I'm waiting to hear from them.
Has anyone been to a CE?
What should I expect? As it's 84 miles away I would have to stay over night if they do a bone marrow test. What should I expect?
Winnie
Red
Red widow aged 70. MDS -20Q+t(1,9) diagnosed June 2013 on watch and wait. Lives in Somerset

Life is for living
MollyP
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Joined: 04 Mar 2013 13:01
Location: South East England
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Re: More infection and advise please on visiting a Centre of

Post by MollyP » 04 Oct 2014 23:03

Hi Winnie,
I took my husband to see Prof Muffti. He is brilliant In fact we have been four times now to Kings. All the staff are really great and the hospital is not far from the station and there is a great coffee shop with good food right near the outpatients dept.

Our experience of the bone marrow was not good and you will need someone with you I would say. My husband had a bad reaction to the gas and air they used for pain relief so I would make sure you are OK with that and if not have them arrange other pain relief because whatever it was they couldn't organise it half way through. (maybe because he had eaten). If we were to have to do this again I would arrange to go by car.

If you need bloods be sure to be there an hour before your appointment time in order to get them processed. Kings have a really efficient service, get a ticket off the wall and wait to be called.

Hope it goes well
Love
Molly
Xx
*** *** *** ***
69 yrs hubby - CMML 1 dx Feb 2013
raised Monocytes was watch and wait
Nov 13 hydroxycarbamide.
Jan 14 blood OK back on w&w
Jan 19 disease advancement to CMML-F (fibrosis)
red
Posts: 67
Joined: 22 May 2013 14:25
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Re: More infection and advise please on visiting a Centre of

Post by red » 06 Oct 2014 17:05

Thanks Molly. I'm going to Cardiff which is closer to me. I found the two bone marrow aspirations done locally were painful but no too bad. They anethstersised the area first with an injection and then gave me gas and air. Your the second person to say that this procedure was very painful at Kings and that they had not had enough pain relief.
Winnie
Red widow aged 70. MDS -20Q+t(1,9) diagnosed June 2013 on watch and wait. Lives in Somerset

Life is for living
Russell
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Joined: 15 Apr 2010 16:56
Location: Stoke Poges, Bucks
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Re: More infection and advise please on visiting a Centre of

Post by Russell » 12 Oct 2014 22:40

Hi Winnie,

I've had about 16 bone marrow biopsies and my top tip is to INSIST on sedation each time. Makes the whole procedure so much more bearable. They usually use midazolam with me. I usually have to organise it in advance. Gas and air, even with local anesthetic, never worked for me.

Russell
Age 55
RCMD 2009 at age 49
1x MUD BMT 2010
1x MUD SCT 2010
1x Haplo Transplant 2010
4 Marathons
and
4 other Half Marathons, a 10 miler and a Spartan Race!
red
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Joined: 22 May 2013 14:25
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Re: More infection and advise please on visiting a Centre of

Post by red » 14 Oct 2014 14:30

Thanks Russell,
I've looked this up and there may be some problems for me with this.
Not usually given to people over 60. I'm 71
Not safe if your on antifungals and certain types of antibiotics
I'm often on both.
I will ask about alternatives.
Thanks again,
Winnie
Red widow aged 70. MDS -20Q+t(1,9) diagnosed June 2013 on watch and wait. Lives in Somerset

Life is for living
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