Been over a week since our return from France. My wife saw the GP last Monday, though he knows nothing about MPN he did saw he would refer her to a hematology consultant, and because she now has a failed kidney a renal consultant, and because her heart is also considered to be failing a cardiology consultant! We have only had a letter to make an appointment with the cardiology dept so far, and that is August the 8th
Still nothing from the MPN consultant, I am worried about her platelet count as it was 1088000 when she had a stroke at the beginning of May. Is this new count of 1336000 dangerous?
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jointpain
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Hi, I’m not a medic so I can’t advise but please go to A&E or contact your haematologist to check because you are so concerned and because your wife had a stroke at less platelets already.
Yes. I would if I were her. No two ways about it. Question is what’s the quickest way to get to see a haematologist. If you know the name of the haem your gp has referred you to,you could phone their secretary and explain what's happening. If you can get through. Or try Aand E: but you’d need some specific symptoms to get through the filtering. But I’m sure your wife has headaches/ feels dizzy/ unwell etc and that plus the background and the blood counts should at least get her seen by a competent registrar, especially if you go in the day time.
The GP does seem remarkably unconcerned, given the input from the French doctor.
We finally got a phone call from the GP at 5.03 this evening, after I called the surgery 6 minutes before asking why he hadn't called considering he said he would via a receptionist four hours prior, when I went in to ask for a copy of the blood results which were not to be had in paper form until tomorrow.
He said NHS guidelines were to give a 75mg aspirin once a day. Somehow I don't think the aspirin will get her platelet count down.
Tomorrow we will collect the paper copy and telephone the hematology consultant/secretary and ask to be seen sooner than the 11th July which the GP has told us tonight. Even NHS guidelines say she should be seen within two weeks of visiting a GP if Cancer is suspected, please correct me if I am wrong.
But u r doing all the right things - ring the haematologist for advice even if they can't see u sooner - and if your wife gets acute symptoms dial 999, don't take her in to A&E yourself.
You are right about the aspirin of course, it will do nothing for the platelets but will help reduce the stroke risk they bring.
It may be worth trying the "2 week wait" line but I don't think MPNs are covered. However here's hoping you phone today and find a helpful haematology team - surely if u start by saying your wife had an emergency splenectomy while on holiday in France as a result of MPN etc you will get some response.
Did you get the French diagnosis? What did they say? Sorry if I missed that.
You seem to be doing all that can be done. It’s a hugely stressful nightmare. If your wife does get symptoms that concern you or her a trip to A and E might still need to happen.
Please read the signs and symptoms. When platelets go above 1 million the blood sometimes becomes thinner so I would ask whether your wife should take aspirin. My haematologist had also mentioned this. It does nothing to lower platelets and makes the blood even thinner, it stops the platelets sticking together to form a clot. There is also the von willebrand disease if you have easy bruising/bleeding.
It is shocking that your wife has not been seen straight away by a haematologist and because your doctor is not familiar with MPN's he may not know the best course of action for you and could dangerously misadvice you. Phone haematologist clinic and ask if aspirin should be taken.
I think that your wife should be seen by a haematologist as soon as possible. I've found lately that it may be necessary to be very insistent to get appropriate help in health matters.
I agree with others, please seek help as a matter of urgency. Insist on seeing the haematologist, I would be sitting outside the door until I was seen. Your wife’s platelets are very high and the fact she’s had a stroke already must increase the risk. I know I’m not qualified to give medical advice but please seek out your haematologist asap.
If you or GP is struggling to get advice from the haematology team urgently (although these results should have been rung through to the surgery as needing urgent response and advice from haematology), the GP can liase with the on call medical team who should be able to help and advise in the interim whether she needs seeing acutely today.
MPNs don't generally come under the urgent 2 week cancer rule however in view of you wife's history I'm sure the haematology team will try and slot you in their clinic as an extra hopefully before the 11th.
No, it looks like they are sticking to the 11th. The consultant's Secretary also said to use the aspirin as prescribed by the GP which is under NHS guidelines.
I’m sorry to hear the system is not working for you. I had some luck getting into hemp-onc earlier by calling every few days (but daily would be fine too) and asking for cancelled appointment slots. Hopefully they will have the background and concern to speed the process up once they see her
I’m not a doctor so I can’t give medical advice. My specialist did tell me platelet numbers “bounce around” so he’s only concerned with significant increases or decreases that jump into a different range, so the diff may or may not be concerning based on that? The high numbers are concerning either way.
Good luck to you and your wife- I’m glad she has you.
I know! My gorgeous wife is so much better now, on hydroxy and anagrelide to control the myelofibrosis, BP tablets for blood pressure due to failed kidney and portal vein thrombosis.
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