Hi all I had my routine appointment this week and my platelet count had dropped to 434!! I was so pleased as it had been climbing since being stable at about 350-400 for a couple of years. If it stays at this level or reduces further at my next check up in 6 weeks they are going to start stretching my appointments out again, which will be great as going every 4 weeks or so has been a pain for the last few appointments. Fingers crossed it does and I will go back to 12weekly. Hope you are all doing ok.
Karen x
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Nickthedevil
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Hi Karen, , Happy Days there then. . Said before you always get a good vibe from good results which spurs you along. . And I'm very pleased it's your turn. . Hope it settles now and your appts spread out. I know what it's like to feel you're never away from clinic. . . 😀😀😀 Chris x
That is good news. I always feel as if I've passed a test if my platelets are at a reasonable level.
I was wondering if you had access to a telephone clinic.
I have had telephone appointments with the haem lead nurse every 2-3 months or sooner if my platelets are high or my hb and neutrofils are low.
This is much easier than attending out patients. I can ask to see the consultant if I or the haem nurse feel it is necessary and the haem nurse will book the next appointment for me.
The nurse always looks at my results with my consultant before the telephone appointment and she advises on the dose of meds.
I also receive a copy of the blood results and letter which is sent to my G.P. informing him of the latest situation. I think this is a great service on the N.H.S. and this is from a hospital which is supposed to be in special measures!
I have E.T. jak negative, calr positive and was diagnosed over 10 years ago and have been on hydroxy for 10 years.
Hi Judith there is no telephone clinic at my hospital, I only wish there was as I am usually in clinic for around 2-3 hours! I think I will suggest it at my next appointment. I do get a copy of the results, though only if I ask, and they do write to my GP each time. I have ET Jak2 positive and have been on Hydroxy for 3 years. It's kept things under control until this recent blip but after several increases in dose it's hopefully back in line. Thanks for the info on your clinic.
Karen x
That's great! Such a boost to have good results , Good for you , may it continue
Thanks Poll. I am still hoping to be there next week but we have just heard that our house move has been brought forward and so it depends on how the packing goes next week. We are away in Venice this weekend so I may struggle to get it all done if we are away both weekends! I am going to try my hardest though as I am really looking forward to meeting fellow MPNers.
Such great news. I'm so pleased for you. I'm retired now and live quite a distance from the hospital so my appointments are a bit of an outing for us! How sad an admission is that!! It would be a nightmare going as often as I do if I had still been working though. Extending the time between visits used to make me just feel healthier never mind the results. xx
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