MPN Voice

Happy happy happy

On Thursday I had my first appointment with a new haematologist who is more of a specialist in MPN’s than my previous haematologist. Thank goodness I asked Maz for a recommendation. Dr Ewing was amazing! You may remember from a previous post that my last consultation with the usual haem didn’t go well and I ended up in tears of frustration. Dr Ewing listened to everything I said and we talked about side effects from ET and Hydroxy, and she asked me lots of questions - unheard of previously. I completed a questionnaire on symptoms. She examined my spleen, which was the first time this had everbeen done. She reduced my doseage of hydroxy as my platelet count had previously dropped to 265, which my old haem refused to do. We also talked about changing medication if I don’t feel better with a reduced dose. I also met the CNS who was lovely and very reassuring.

I can’t describe how much better I feel about everything. I am even looking forward to my next appointment in 6 weeks!

Karen 😀😀😀😀

33 Replies
oldestnewest

That's fab Karen!

It makes such an enormous difference when you not only trust and respect your Haematologist, but also get on and feel at ease with him/her. With a long term condition such as we all have - having a consultant who understands and cares about you - as a person not just a set if nlood results - certainly makes our journey a completely different and more positive experience!

So pleased for you

Kindest regards

Dianne x

2 likes
Reply

Thank you Dianne x

Reply

That’s great news Karen

And well done you for being your own advocate xx

2 likes
Reply

Thanks Helen x

Reply

That’s great Karen.xx Aime😺😺

2 likes
Reply

Thanks Aime x

Reply

Hi Karen I see Dr Ewing at Solihull hospital and find her fantastic too. She's so understanding and explains everything really thoroughly. I'm always disappointed if I go and have to see someone else if she's not working! x

4 likes
Reply

She is like a breath of fresh air after my recent experience. I would be disappointed too not to see her x

1 like
Reply

Do you see her at Solihull or Heartlands? I go to Heartlands for venesections and always dread it, the staff are lovely but I'm always there for hours and I'm a terrible fainter and have made a show of myself in the past! Lesley x

Reply

I saw her at Heartlands but it was really quick. I was only there an hour and at least 20-25 minutes of that was with Dr Ewing. Amazing! She did say if Solihull was better for me I could see her there. I might change to there after the next appointment as it is probably easier for me to get to. I’m sure they are used to fainters so you shouldn’t worry about it x

Reply

Happy Days Karen , that's how it should be and I'm really pleased you have found someone who listens and acts on what you tell her. I know how it feels to think you're not getting a fair crack of the whip. I was seeing a Doc for over a year and one day he says "I don't know why you're not seeing the other consultant coz he knows much more than me about MF" . I was dumfounded.

Good on you for changing. . Reminds me of a quote ' if you can't change the person / people, , Change the person / people'. X

3 likes
Reply

Why on earth didn’t he just ask the other consultant to see you!

Reply

Believe me I was ripping mad and wasted no time in asking for a second opinion which is when I was referred to Manchester and the rest is history as my SCT resulted a few months later. I'm not sure what moght ot might not have happened if I hadn't taken control. . .. Chris

Reply

Gosh JediReject how long ago did you have your SCT?

I’d love to know everything. What mpn did you have etc?

Only if it’s not too much trouble.

Reply

Thanks Chris. It really shouldn’t be too much to ask to just get the care we deserve, should it? Why on earth would he wait for over a year before suggesting you see somebody more experienced?? Unbelievable!!

Good quote and very true. I really hope things improve for you soon. Look after yourself x

1 like
Reply

Thanks Karen , I'm coping ok at the moment back at eye clinic 1st March so hoping for better news. We called that Hem Mr Wishy Wishy as he ummed and arred every time. I had to force him to give me Rux as funding was there. I said I think it would be a really great idea of you had my scrip for Rux ready at my next appt. He did. X

PS see my reply above to Wye bird. X

Reply

Keeping fingers crossed for better news on 1st March, let us know how it goes. So glad you took control x

Reply

Hi Chris, nice to hear from you. I totally agree what you are saying about changing consultants. I have promised myself that if my counts start causing concern, I will be asking for a second opinion. The last time I saw a haem, he didn’t have my records with him, admitted that and said he only had my blood results on the computer. Not impressed!!

You take care and keep us updated. Kindest regards Aime xx😺😺

1 like
Reply

Cheers Aime . We deserve the best guides we can get to help us along our pathand if you feel you are being short changed don't be afraid to look elsewhere. Always great to hear from you xx

1 like
Reply

Wonderful news Karen, as a matter of interest are you still taking the circumin and if so did you discuss this with your new haematologist? Just wondering about her ‘take on it.’

Mary x

1 like
Reply

I am still taking it.i did mention it to her but she didn’t comment on whether she thought it could be helping my blood results, but she seemed interested in the fact it has helped with my arthritis. It’s on my list to ask her about it next time. Are you taking it and if so has it helped? Karen x

1 like
Reply

Yes Karen, I’m still taking circumin (6 months ish). It hasn’t benefitted my platelet count to date. I remain stable. My haematocrit level was down to 42 from 45 (the best ever) on the last clinic visit, which can’t be bad. Even though I have ET, my haematocrit and haemagloben levels straddle borderline at times.

Interesting for me however, I don’t suffer anymore from the fatigue we’re all familiar with. Although, I must admit my fatigue was not on the level that some on the forum complain of; however, when I did experience fatigue it was debilitating. So, I’m kind of thinking it could be the circumin, it’s hard to determine.

I’m back at clinic in late March, so if there are any notable changes (negative or positive) I will be posting.

Mary x

Reply

Great news on your haematocrit and the fatigue. Hope it continues for you. Good luck at your next visit

Karen x

Reply

Haha I know exactly how you feel. I had a similar experience. My new harmo team were so sympathetic I burst into uncontrol blubbering because of the support they gave me.

I too look forward to meeting them and am disappointed if I done see my blood nurse.

So I’m absolutely THRILLED for you

1 like
Reply

Thank you. I’m really pleased to hear you are getting great support too.

Reply

Having a consultant that you can discuss things with and who is ready to listen to you is invaluable. Especially when they have knowledge of MPNs. So glad you have found one.

Best wishes

Jan

Reply

Thank you Jan x

Reply

I see Dr Ewing at Good Hope, she is lovely, I see others as well, like a lucky dip!,but prefer her as she is so down to earth and easy to talk to.

Reply

She certainly is. I am hoping to see her until we have sorted my meds out at least, but realise it is luck of the draw, though I am sure her team are all better than I am used to.

1 like
Reply

Karen well done. Are you reassured now.

Reply

Thanks Roger. Yes I am and I feel more in control.

Reply

So pleased for you Karen xxx

Reply

Thank you x

Reply

You may also like...