Hi,I thought I’d tell you my experience going through treatment for Myelofibrosis.
After the initial shock of diagnosis you’ll be in hospital day care for regular consultations and transfusions, you’ll probably be there most of the day, they do feed you though.
Eventually you’ll go for a biopsy, when you get on that gas and air,you’d better be making like Darth Vader or it’s gonna hurt.
The consultant will give you a lot af information which is scary but not as scary as the burgundy book they’ll give you to read.You’d better believe in horror stories because your in one.Of course, this book depicts the worse case scenario. You’ll have a Hickman fitted,this is a godsend as it’ll save your veins from being bruised through injections and you’ll soon get used to having a small set of bagpipes hanging out of you.Tip,when the dressing gets changed,have the dogbone plaster placed on the main dressing,this will stop it coming off due to sweat.
When you get admitted,hang your coat and pride in the wardrobe,you won’t be needing either in the foreseeable future. Tip, you’re room will have extractor fans going 24/7, if you are a light sleeper, invest in some ear plugs.When the storms hit down here it was like being inside a beehive.
The chemo will affect you differently, I was lucky that I didn’t have a bad reaction,but the bloke next door was really ill, so be prepared for that.The actual transplant is a non event just a drip into you.Your machine that you’ll be hooked up to is both your friend and enemy,friend because it’s helping you get better and your enemy because you’ll be hooked up to it night and day.There will be 5 musical notes when the alarm goes off, you’ll remember these notes until your dying day.
Gentlemen, after chemo, when you go to the loo,sit down! Tip for ladies and gents,the slightest pressure on your abdomen when you need a wee will have a catastrophic outcome,so when you need to go,get to the bathroom sharpish,(dragging your machine with you)
Another tip is to walk around your room,your leg muscles will deteriorate very quickly,it’s tedious but I do recommend it.
You’ll become an expert on Haemoglobin, Nitrofils,liver function and all manner of other medical terms. All going well,you’ll be looking forward to your Nitrofols getting to 0.6,this means your on the way to being discharged. Hopefully you won’t get GvDHD like I did.
A bit of a long post but hopefully it will give you some insight as to what to expect.
I’m 16 months post transplant and living just about a normal life.
Good luck and stay strong.