new diagnosis

[juneadams]

Hello I am aged 72 & was diagnosed 8 weeks ago & am still in shock. is there anyone on the forum from Dorset

[janetstanford]

hi June
i am not from Dorset but would just like to welcome you to the site ..yes the shock can be difficult to deal with do know how you feel if you need to ask questions ect we can try and support you

hope all is well take care
Janet

[juneadams]

Thank you Janet, I dont know all the blood terms & what the numbers mean yet at present I have Red at 85 & white 2.7 I am told the red has to go down to 70 before I can have a transfusion, I feel so weak at 85 I dread to think how it will be at 70.

After a transfusion does that mean you can get by anyone with a cold for instance & it not be fatal to catch it.

June

[Jayne]

Hi June. I'm no expert on counts either! I think this is something I need to brush up on. I just wondered who is looking after you? Your GP, local haematologist or an expert in this illness? You need to see an expert, maybe they can offer you something that will make you feel less tired. That said, I have been exhausted this week, but I know I have done too much for the last 2 weeks, so I think it is also finding a balance in your lifestyle and getting used to going to bed early and doing things at a more steady pace. I know it is scary at first, I only found out in February myself but I suppose you just have to remain positive and determind to live and not let it spoil things too much.

Are your white cells ok? I would have thought if they are then you can mix with people, I know my white cells are fine and I am ok to work/mix with people. It's just that you seem to think you cant see people who have a cold.

I told my 'expert' that I just want to see my kids get married and to see my grandchildren (I did nearly cry at this point!) My children are 13 and 15 so I hope to be here for a long time yet!

Jayne

[janetstanford]

Hi june and Jayne

June
first i would advise you to go see either your g.p or specialist at the hospital as soon as possible
and alongside of this i would get in touch with sophie who i believe is best qualified to give you advice
should you have a relative /friend who would go with you i would ask them too they can remember / ask things we forget or do not hear because we have the illness and tend to only focus on certain things said to us

what i can say is normal white cells are 4-11 these help kill infection and yours seem a bit low also neutrophils which are part of of your immune system should be 33 percent of the white cell count if not you may be at risk of colds flu ect and they will take longer to fight off /recover from ...discuss with your doctor a lengthy course of anti- biotics and or anti virals to help support your system i was on both for almost a year and they kept infection at bay till i was able to fight it off myself ....
blood count i state mine in units..for example 8.5 units i think from your post you will be transfused at 7 units ..which yes is very low ..average blood for women is 11--14 although people do manage on less dependent on age ect ect ...(sorry )
i am transfused when it gets under 9 units so i am surprised yours are that low ????
i hope i have been of some help and that you feel better soon please let us know
hear from you soon ....janet

[Jayne]

That's a really good, informative post Janet, I have made a note!
Thank you.

[janetstanford]

hi jayne
yes over this last couple of years google has educated me !!! also have to say a couple of sisters at the hospital helped me when asked what things meant....most of the time from my symptoms i can guess my blood count for example i say 8.6 and it is 8.5 !! you do learn over time as you need to protect yourself as low bloods mean less oxygen to the mayor organs and this in turn causes low energy towards the end of the month a 3 HR (power nap ) SLEEP can be normal some days and i become so clumsy forgetful and that is apart from lots of other things...

will visit site soon and hope June that you are feeling better and Jayne that we can chat again
janet

[Jayne]

Whoops, this reply should be under 'hello', which a version of it is but I thought I had lost it so re-typed and it ended up under 'new diagnosis'. I cant work out how to cancel the whole message, so I am sorry it is in the wrong place and is on the forum twice.c

I agree with you Janet. When my daughter was born, my son was 2. I returned to work and felt pretty worn out. I went to the drs (about something else) and mentioned how I felt. I was told "you have 2 small children, a job, a house and a husband, what do you expect" and was basically told to "get on with it", so I did.

Things did get easier and then a year or so ago I started to feel megga tired again. I told my husband that I didnt just feel tired, I felt bone tired (now, I think that was a weird way to explain how I felt). However, once again I just got on with it, and put it down to age and being 40! I did notice my friends seemed to have a lot more energy than me, and did a lot more than me but then I know I have always liked my sleep anyway.

So, now I would like to be superwoman or wonder woman and to be honest I do think I am doing quite well, cos once again I have 2 children, a full time job, a house and a husband and I have mds......and yes I still feel knackered but at least my kids think I am normal, ha ha.

[juneadams]

Thanks to janet & jayne, & everyone else who has replied to me... The reason I am going on about colds or infections Is that my hospital doctor drummed it into me about being so very careful not to mix with people crowds etc...that was before I read up on MDS on the PC I googled the Myelodysplasia & came up with some good info sites including the Patient one. Have any of you read it as its the history of someone living with it & writing a diary about everything he was feeling,I found it a great help.

This exhaustion maybe heart related I am going for an Angiogram at the end of July then I will know which is causing what symptom I have had Angina for 30years & I read that the MDS also gives Angina pain. You all seem to go out & about but just walking accross a room shatters me. maybe being 72 makes the difference

Gardening was a hobbie but again the doctor & the PC info says there is a fungi outside 24/7 ie rotting vegetation which is fatal to us Maybe we should be living in a bubble

June

[janetstanford]

hi June
NICE TO BE ON LINE WITH YOU ....
site you are on about no have not been on could you let me have address
and infections i still carry about wipes and hand gel in my bag not use as much now but the first year or so till my white cells grew back i used them a lot also use dettol spray in the house with having children this helps ...i have a viral infection this week but my last 1 was October .....My white cells yesterday stood at 6.7 which is healthy

this fungi ???? what is this not heard can you give me more info and then i will google...

you have angina my mother has that but also low bloods can cause this because of low oxygen double whammy ???? i have iron over load which something you need to watch out for when having transfusion i take exjade every day and this qrt i have had a reduction which is good .....
and walking across the room do not worry happens to us all
hope you are feeling better also hope you see your doctor soon and get those blood counts sorted hope we helped
janet