My mini blog

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

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Posts: 11
Joined: 22 Dec 2014 20:00
Location: Medway, deepest darkest Kent

My mini blog

Postby Scubadude » 01 Jan 2015 21:27

Hopefully this is the right section of the forum to post a blog type thread and that such a thread is ok to do? Kinda wierd this for me as while I have used hobby forums in the past I have never done a proper blog as such as never felt the need.
So, what I had in mind as its very early days for me in all this is to start a thread now then i can add to it as I progress through treatments etc. I will apologise now if I waffle :)

Best place to start I guess is the begining.

For about 3 or 4 weeks before going to my GP I found I was getting fatigued way too easily, just going up the stairs at home and I was knackered and breathing hard. So I went to my GP on a Friday and he said come back on the Monday (1st Dec) for a blood test, which I duly did that morning. I fully expected to be told by the GP you are unfit hence the fatigue so go away and exercise.

Well, 9pm the same day as the blood test I get a call from them saying go to A&E now ! That was bit of a shock and certainly not what I had expected. I wasnt about to argue and shot there like a rocket.

I waited patiently in A&E and after a couple of hours was seen. This was now late evening. The doc who initially saw me looked at my blood stats and seemed surprised I had walked in and not been a crumpled heap on the floor. For those who like numbers the haemoglobin was 50, platelets 22, white cells 1.7 and neutrofils 0.37
The A&E docs seemed sure it was some kind of infection that had dropped my levels so far but called the specialist from the haemotology department who pretty much missed dismissed that idea straight away on the basis that an infection wouldnt have dropped them all but a marrow issue would. I had asked the A&E doc if the blood stats could indicate Leukaemia or something similar and was told that it was highly unlikely so not to worry. Hmmm..........

Spent the night in A&E as no ward beds were free but got moved on to a ward in the McMillan unit the next morning. Now thats when alarm bells rang in my head. To me McMillan unit = cancer!! Was now having a little panic inside.

Same day I had a BMB and sample of the bone taken from my hip. The doc was very good and said i would feel some discomfort. How wrong was she! No discomfort just severe pain. Nearly hit the roof. The doc made a comment about my bone being unusually hard and I couldn't decide if that was a plus or minus.

Samples were sent to Kings for analysis but the docs locally did some work on it too and informed me that the BMB was basically a "dry tap", i.e. nothing really came out. As a result 2 days later they did a second BMB in my sternum. That I barely felt at all which was a relief, but again it was a dry tap, nothing much at all came out.

I was in the ward for best part of 2 weeks having all manner of blood tests and transfusions to top me up (they seemed to be drawing out about as much as they put in me!) I felt bit of a fraud being there to be honest as apart from the fatigue really didnt feel unwell, and hospital beds are in short supply. But, if they thought I needed to be there then it must be for good reason.

Anyway, results came back from Kings and combined with what the local docs found they diagnosed MSD plus fibrosis in the bones, so a combination of duff marrow and then the space inside the bone where it should reside being filled with scar tissue. Lucky me............

So where did this leave me. Well my consultant informed me that apart from this issue, given my otherwise good state of health and young age (53 lol, not been called young for a long time) they were referring me to Kings for a bone marrow transplant to be considered. In the meantime I am being topped up with a couple of units every 2 weeks and they are watching closely for any infections etc. The transfusions keep my HG between 75 and 95, platelets and neutrofils are holding at about the level i went in with.

And thats where i am at now. I have a date to see the team at Kings third week of Jan and lets see what they say then. Fingers crossed they dont want another BMB as wont be impressed by that, but needs must I guess.

Oh and a happy new year to you all on the forum. If you have made it through my waffle this far well done :)
Diagnosed with MDS (RCMD) in Dec 2014.
Fingers crossed for a transplant soon.
Posts: 11
Joined: 22 Dec 2014 20:00
Location: Medway, deepest darkest Kent

Re: My mini blog

Postby Scubadude » 02 Jan 2015 19:53

Just been doing some reading up on Kings hospital, as will be in there for a month if all goes to plan. I see it has wifi......yay :)
Then I see it costs £5 a day! Thats a rip off and I wont be using it at that price
Diagnosed with MDS (RCMD) in Dec 2014.
Fingers crossed for a transplant soon.
Posts: 75
Joined: 04 Mar 2013 13:01
Location: South East England

Re: My mini blog

Postby MollyP » 05 Jan 2015 18:08

Happy New Year and I do hope your bone marrow transplant goes well.
*** *** *** ***
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)
Posts: 52
Joined: 15 Apr 2010 16:56
Location: Stoke Poges, Bucks

Re: My mini blog

Postby Russell » 08 Jan 2015 20:45

Spent 7 months in Kings and the cheapest WiFi they do is £14 for a month

[color=#0000BF]Age 55
RCMD 2009 at age 49
1x MUD BMT 2010
1x MUD SCT 2010
1x Haplo Transplant 2010
4 Marathons
4 other Half Marathons, a 10 miler and a Spartan Race!
punda milia
Posts: 22
Joined: 01 Oct 2012 14:08

Re: My mini blog

Postby punda milia » 15 Jan 2015 17:37

Happy New Year to you. I was very sorry to hear your story. It must have come as an awful shock. I was glad to hear that your experience in the Medway hospital was not too horrendous. A young friend of mine had a difficult time there when admitted with appendicitis at around the same time that you were there.

Best of luck with all your tests and I do hope that the bone marrow transplant happens fairly soon now. It will be worth taking Russell's advice and signing up for the £14 a month Wifi in Kings as your tablet/laptop will be essential as you recover.
66 year female. Diagnosed with mds 2012. In 2002 treated for Non Hodgkins Lymphoma with chlorambucil. Have enlarged macrocytes, low neutrophils & low white cells. Also have Trisomy 8 & classified Intermediate 1. Now on watch & wait

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