MPN Voice
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Still in hospital, now worse than before visiting A&E

My wife was sent to A&E on the 23rd July after being discharged on the 14th July when she already had a distended abdomen from what we now know was a portal vein thrombosis. The hematologist started her on twice daily clexane injections of 60ml on the 25th and also finally at last the hydroxy which the French hematologist said she should have as soon as we got back to Wales a full month prior. On Saturday the 28th July her platelets were 1800000 a good deal higher than the month before.

The clexane has brought on two bleeds in her legs an then a nurse on the evening of the 1st August injected clexane into her still distended abdomen right into her muscle which then caused a massive hematoma bringing with it terrible pain and further swelling to her abdomen. She had a ct scan on the evening of the 2nd of August to show whether the hematoma was a hematoma, and to see if the portal vein thrombosis was still as bad which it is. The hematologist then started her on 500mg of anagrelide twice a day along with the, now 1000mg of hydroxy twice a day. They have stopped the clexane for a day or so. I do not know what her platelets are now as the hematologist will not visit while I am there, will not phone me. He is now saying my wife can leave this week and take warfarin to thin her blood.

I have asked him via a letter to refer her to a specialist or centre of excellence.

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I think the way the haematologist is treating you, never mind your wife is unprofessional and disrespectful. I think you should ask or beg if you have to for a second opinion from an MPN specialist directly through the private route by contacting their secretary. Ithink some of the others advised you of MPN specialists before so please follow up ASAP.

Kindest regards Aime

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You both are having a dreadful time,a really upsetting experience,I am with Aime ,you must insist on an expert to see your wife.Thinking of you both,sending best wishes for your wife to be much better soon.Sally

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I am so sorry that things continue so badly, what you are both going through is truly horrible. I cannot add any pearls of wisdom or anything of medical help, but do send our sincere sympathy and best wishes to you both at this time, and really hope that things improve soon.

Peter

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So sorry to hear this. If your haem is being obstructive I would make a formal complaint, I think PALS at the hospital is a starting point and get your GP to refer you to your nearest MPN specialist.. This site's admin Maz may be able to advise who that is if you email her. Good luck, Frances

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so sorry to hear about your experiences! I too would suggest you ask your GP for a referral to a specialist. I do hope you get proper help soon

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Have you thought of contacting Maz at MPNVoice and asking her if she can advise you about the nearest expert MPN Haem for your wife. I don't like the sound of the way this doctor is treating you, and your wife is having a horrible time.

If I were you, I would put as much effort as possible into getting some much better medical treatment for your wife.

I send you very best wishes and hope that you get some much better help soon. Lynda

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