Petachie

[Goldfish212]

My partner, (having a difficult time since diagnosis this year) has. post ET myelofibrosis. He has endured several chest infections which led to pnuemonia, low potassium, oedema in lower legs (although he also has heart problems), transfusions, high wbc , low platelets, swollen spleen and increasing and debilitating fatigue. It is heart breaking to witness the impact of these symptoms on a once very energetic, positive person. He now has little purple spots appearing on his arms and I wonder if these are a symptom of progression with his myelofibrosis. He is on Rux and continues on fluctuating doses of hydroxea (he has been taking this since his ET diagnosis). I worry greatly about him due to both his myelofibrosis and his heart disease and would like to know if anyone else has had the problems that he is experiencing and what the outcome was?

[Tinkerbell13]

Just read your post and feel sad no one has responded to you, as it sounds so hard for your partner and so worrying for you....not sure am much help, as just have ET, but certainly have had these red/purple spots and told by haematologist it is bleeding under the skin....she never seems the slightest bit concerned about it, which, in a way, perhaps, is a bit reassuring....!

Just sending you and you partner my very best wishes for things to improve and also hope you can find encouragement and support from this brilliant Forum.

Sorry can't be more help, but do feel so concerned for you both.

Kindest regards, Tinkerbell

[Goldfish212 in reply to Tinkerbell13]

Thank you. Unfortunately my partner is now in hospital. He has a history of heart disease and think.the medication has taken its toll. His heart and kidneys are under strain and he has jaundice. So very heart breaking to watch this happen to him.

[jillydabrat]

Hi my lovely

I have PV not ET but I also have loads of the little purple spots and, like Tinks said, I was told it was little bleeds under the skin.

I can sympathise with the overwhelming tiredness. This for me, along with the joint pain, is the worst part if it.

What I cannot do is understand what it must feel like to have so many awful things going on at once like your partner is experiencing.

Please keep in touch with the site to find as many answers and empathy as you can. I just wish I could give both of you a hug.

Lots of love and prayers

Jill

xxx