So I've not posted on here for a while, it's all been about my liver the past few months...anyway, yesterday I saw my Heamatologist; my playlets have dropped from a steady (past 6 months) 250-350 down to 120 and other levels are low, but in particular I am severely anemic so have been put in a course of iron.
I also asked about disease progression and she mentioned that my last BMB (two years ago) showed I have grade two fibrosis and that I should be treated more as MF than PV....
So....they are hoping that my transplant will shrink my spleen....otherwise it'll be the change in medication which I've got on compassionate grounds which I can't start until after the transplant....
I hope your all well and smiling 🙂
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Chelle_
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I do hope a great liver comes along for you soon .
As for the grade 2 fibrosis I had that on my last BMB but my heam said that there are 5 grades and 3 is when they start treating you for MF again a different opinion .
My progression is to an MPN/MDS overlap so my anaemia is the opposite too much iron so I have to have transfusions .
How different we all are
Again a big up to the donors and hope you get the perfect liver .
Thanks Helen, I knew there were different grades of scarring, I thought I might progress at some point just because when I was first dx 3 years ago they said I was grade 2 scared already and it was a high possibility of me changing.
I hope my tx comes soon too, however there are far worse people than me xx
Good to see your smiling face Chelle,lots of luck with all going on with you,such a complicated disease we cope with,you have so much of the latter.Hope transplant goes well and soon ...Keep that lovely smile,sure it helps you thru so much.xx
Hi Chelle always good to hear from you and get an update on your 'progress' as it is. Firstly I must say I know it's a typo or auto incorrect, but I much prefer Playlets than Platelets, makes them sound like a fun blood aspect. Did they give you a reason for your decreased levels?
My Playlets are 41 today but I'm on immuno-suppressants to damp my Graft Stem Cells down so they may not rise too high until I come off the drug and my Graft flourishes.
Like Helen I sincerely hope for a top matched liver for you which obviously is your priority over your MPN. Have you had indication of transplant timescale or is it a matter of being ready for when the right one is available. I'm clueless about how you are prioritised etc.
I'm smiling by the way 😊. Please keep us in touch with how you go.
Bloody autocorrect....always happens to one of us...lol have no idea why they have dropped I have been so stable over the past few months.
The timescale is different for everyone; age, weight, height, liver required; whole or split, then there's the blood type, anyone can take blood type 'o' but 'o' can only have 'o' and most people are 'o' so this means if your 'a', 'b' 'ab' etc your chances of getting a liver quick are good but for muggins here I have a wait on my hands. I think I'll be looking towards the end of the year, if not the new year, who knows tho. The world might spin in my favour soon.
Hi Chelle. Lovely to see you back on here, let's hope that a donor liver comes through soon for you, but you sound so positive and this is great, and I am sure it will be this good attitude that will pull you through all of the treatment. And as you already know we are all rooting and and a tooting for you, so keep us posted.
Nice to hear from you again Chelle, you are one of the oldies, (to the site, not in age!) who pop into my head every now and again and I wonder how you are doing. It's so nice that you keep us posted when you can. I hope you get a good liver soon. I agree with Chris about the playlets - such a lovely word! Mine were a bit high so my hydroxy has been increased for the last 4 weeks. It's surprising how quickly they change with just a small change in medication.
Hi Chelle , aww you are going through it of late. i do wish you well and hope you get some good news very soon , when i read how other friends posts on here , all of us seem to to be having so many othere things happening to our bodies with mpn conditions , keep postive my friend and keep us informed all the best Holly xx
Thanks everyone. I never seem to ask the right questions, they tell me but blood levels have changes and I just go with the flow. They want to increase my Hydroxy I just take the tablet, they want me on iron, I take the Iron, they want to take some bloods; well away they go. I do feel like I am in a medical bubble at times. I always seem most tired when I have any appointments, day before and day after raring to go, day of appointment I am like a sloth...just not as cute.
Maybe I should take all of you to my appointments, you could ask everything I should be!
I am fine if things have progressed, I don't feel any different to when I was first dx...I am still very tired, I have more pains in my stomach and in particular ribs, I don't eat so much, I'm breathless when I am walking - stairs are a struggle...I am a bit of a determined bugger because I am still working full time and will continue to do so unless the Dr's tell me different! If they confirm that I am now MF and not PV then I shall just deal with it...I sound quite cold and ignorant of the fact that its a serious illness, I'm not, not really, but tears wont solve anything..
I hope your all well, I have been watching what you have all been up to, even if its been a little from afar.
Chelle,you are an amazing strong person,you have my utmost admiration,I am rotten and miserable just now...you make me sit up and get on with it again...Best of Luck and more strength for what you are facing.xxxSally
Oh Chelle, you are just like me because I do the same when it comes to doing what I am told. I never question just trust that they know best as I go to the best. It's sure as anything I don't know what the answers are. Ever since I had MF diagnosed two years ago I take the Rux, drink loads of water, eat as well as I can and truly don't want to know what tomorrow holds because I am grateful for today being as it is. The thing is I am so much older than you and I do think you are one of the bravest souls to have faced so much in your short life. Keep up your unstinting positive glow because you are an inspiration in every sense of the word. As Jedi says thanks!
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