Update after Haemo appointment.

[azaelea]

Well! I've had my appointment on Thursday at last and took with me a list of questions. I was seen by Nurse Specialist in Haematology, not the Doctor. To be fair she noticed my file and thought as she had met me last year when doing my BMB she would see me, also as I am known to her through a lifelong friend who is also a Nursing Sister in Haematology Department. She went through my questions , one of which was....did I definitely have ET Jak2+. She informed me that a definite diagnosis hadn't been made but it's certainly one of the MPN's and definitely not Myelofibrosis or Polycythemia and because it's Jak2+ that's what I'm being treated for. I also asked for my percentage allele burden which she couldn't get on computer at the time but would let me know. Asking about the ache/pain in my right side at kidney area, she examined me but no pain at the time so,thought maybe UTI ( of which I suffered a few last year ) so advised antibiotics and visit to GP if it continued. To stay on Hydroxy because of my age, BUT on a very good note my Platelets have come right down from 730 in March to 287 . Next appointment is in 3 months in October. She asked if I would be willing to attend the Clinic run by the nurses then instead of Haematologist, to which I agreed, hoping I've done the right thing. I've only seen a Haematologist on three occasions since I was referred there by GP at beginning of last year.! Sorry if this saga is too long, but we like to share experiences with each other, don't we? Regards to all. Fran.

[Aime]

Hi, sounds a really positive visit which is great to hear. You seem to be getting your questions answered which is all important. Kind regards Aime 😺😺x

[Jlah]

If the nurses have more time to talk to you and through your symptoms it sounds a positive move. I’m sure then anything that comes up as a concern will be passed to the Haematologist. I find the dr/Haematologist are busy and don’t always have the time to delve into the concerns. Not trying to be critical as I know the constraints of the NHS but it was only when I took a friend that suddenly my symptoms were taken seriously and having more treatment. I wish it had been worry but sadly tests suggest more issues with blood vessels. People on the forum will tell you that you need to be assertive and I am learning this is the case although don’t find it easy. Take care. Jacquie

[hunter5582]

I doubt it matter much whether you see a doc or a Nurse Practitioner. What really matters is the provider level of knowledge regarding MPNs. Most only see a handful in their entire careers and really lack expertise re. MPNs and are typically not up-to-date on the emerging research. One big advantage I could see with a Nurse Practitioner is that if you decide to seek consultation with a MPN Specialized doc, a Nurse may be more likely to collaborate than a doc. Less ego involved. If you have not consulted with a MPN expert doc, here is a list of patient-recommended docs mpnforum.com/list-hem./ . All the best to you as you sort this out.

[azaelea in reply to hunter5582]

Thank you Hunter. Yes, I have searched the list you kindly put on this forum a few times, but as I live on the coast of North East England and my nearest MPN Specialist is on the West at Carlisle it might be difficult for me to attend an appointment. The hospital I am attending is supposed to be one of the biggest in Europe yet no MPN Specialist appear to be listed amongst the Haematologists. I will see how things go. Thanks for your reply. Regards Fran

[hunter5582 in reply to azaelea]

Hope you find someone with the expertise you need re. MPNs locally. That list is not all knowledgeable providers, just those who were recommended. I have list of questions for hematologists - kind pf like a job interview since the doc does ultimately work for me: 1. How many MPN patients have you treated? 2. What recent training have you had regarding MPNs. 3. Are you willing to work in consultation with another provider with MPN expertise? I could not find a local MPN-expert doc, so I found a hematologist I like and travel to consult with the MPN-expert doc, who then acts as a consultant. All the best to you.

[Mardihel]

Hi I was diagnosed last year, I too saw haemotologist 3 "times then referred to clinic, I'm not too happy they cannot answer any of my questions just so blood test and fob me of with more hydroxy, I learn more from this website. Good luck