Saw my Consultant today and feel it went well. He spent ages with me and I feel that I’m in good hands.
He’s going to arrange for another scan of my spleen, he’s going to check my blood for JAK2. He wants to see me every three months.
I have ET and have had it for nearly 12 years, he explained that my risk is increased because of my diabetes and the risk continues the longer I have it.
No other meds at the moment only aspirin. Feel better for actually seeing a Specialist rather than being monitored by my GP.
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Dora1971
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It’s so good to hear of such a positive experience with a haematologist as there have been a few negative ones lately. At my last appointment in September, my haem did not even have my notes in front of him, just my most recent blood counts on his computer screen. He apologised for not having my notes!
So happy you had such a good experience with your haematologist and hope you continue to do so....what a difference it makes! Hope you can carry on with just aspirin for the foreseeable future, too, and wishing you the very best from a fellow ET one (but without the diabetes), Tinkerbell
I saw my consultant on Wednesday afternoon and came out feeling very positive.
I went in feeling quite down having had a meltdown in the morning which is not like me at all. I've had E.T. for over 13 years now, am on Hydroxycarbamide and aspirin (13 years).
The consultant sent me for another blood test there and then to check iron levels and said she will let me know if I needed an iron infusion as I was feeling extra fatigued. I have been seeing her on and off since I was diagnosed along with 3 monthly telephone appointments but unfortunately, she is about to retire (again). She came back to do a monthly clinic after retiring last year.
There are some very good specialists around. Fortunately, I don't have to see my G.P. very often and he is a good G.P. for other medical things but is not a blood specialist. I can ring the haem unit if I have blood-related problem or query. I know I am fortunate with the care I receive so I really feel for those of you who have a not so good experience.
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