My wife is back in hospital due to the ineptitude of the hematologist. It is a long contorted story. But to shorten it quickly this hematologist stopped the heparin and replaced it with aspirin, since when she had a bleed into the digestive tract. After visit to A&E and five units of blood her portal vein became thrombotic. She then was off her food had a distended abdomen terrible head pain, very high blood pressure and temperature. This was ignored by the hematologist and she was discharged, ignored again by the GP two days afterwards ignored again three days after, again by the hematologist, eventually the GP did agree to send her to A&E a full week after his initial visit. She has now had a ct scan of her abdomen,requested by the surgeon that saw her in the surgical assessment unit. This shows her portal vein as blocked. The hematologist then took over and today said the vein had been blocked since my wife was discharged after her splenectomy in France. A claim I dispute as my wife was really on the mend and putting weight on, even walking over six miles and enjoyed a meal out two days before the massive bleed into the digestive tract. She is JAK2 positive and diagnosed with myelofibrosis, this diagnosis given by the hematologist and his team in France all of which was available to the hematologist here from two weeks before her bleed. I asked if he was going to scan her brain s she had such severe pain, I had to absolutely insist it was done in the end as he didn't think it was connected. How little this person knows of myelofibrosis. She has just had a ct scan of her head tonight and been put back on heparin ( clexane) which had she continued after the fifth of July she would probably not have had the bleed, the thrombotic portal vein, the two stays in hospital the loss in weight the pain and discomfort of it all. And even now they are not going to operate to remove the thrombosis. Just give her clexane twice a day and begin hydroxyurea supposedly tonight. Please if anyone knows or sees a decent hematologist in the North East of Wales or within travelling distance please message me.
Looking for an alternative hematology specialist. - MPN Voice
Looking for an alternative hematology specialist.
I am so sorry to hear of what your poor wife has been through. When I was unhappy with my haematologist I asked Maz (our wonderful administrator) if she could recommend a MPN specialist in my area. It was the best thing I did since diagnosis of ET in 2012. I am now seeing a wonderful haematologist who actually listens to me. I have to travel much further but it is so worth it. Good luck to you both and I hope your wife improves soon.
Karen
All I can say, from my own experience, is there is so much ignorance out there, and inexperience with anything that can't tick a box. Please continue to be pro-active on behalf of your wife and don't just accept what you are being told if you think it's wrong. It seems to me there is not much 'joined up' collaboration going on with out-of-the-normal conditions and no time (or inclination) to skill themselves up to bring their knowledge up to date. It can be a very isolating experience but keep fighting and thoughts and email hugs sent to both of you.
You poor things! I have been wondering how you were getting on. So relieved that your wife is getting the right treatment now to keep her safe until you find a haemotoligist your happy with.
Regards Carole
Sending you both E hugs and thinking of you. I’m sure someone will know who to recommend. Keep strong like you are, you are exactly what your wife needs plus a decent haematologist. kindest regards Aimexx
I see Dr Butt at the Royal Liverpool hospital. He is excellent. Don't know if this is any use to you. I travel from Cumbria to see him but it's well worth it. Good luck Anita xxx
So sad to read what you both are going through. I can't help with anything practical, but just want to send my sympathy. I nearly lost my wife about 3 years ago, partly due to poor treatment from medical professionals, and the stress of battling for months with Doctors who wouldn't listen or treat properly all took quite a toll on my own health too. I really feel for you both, and do hope that you are both able to get the medical care and support that is needed .
Kind Regards,
Peter
Thank you Peter for your sympathy, I too have nearly lost her three times now since May the 1st, and I am having to fight all the time especially since returning to Wales. I was so naïve thinking that the NHS was the place to bring her, when the French doctors said it was a bad place and we should stay in France until she was fully diagnosed and up and running on hydroxyurea. I have contacted a venous surgeon in the hope of having the thrombosis surgically removed, as I think it would be better than leaving it untouched, as she is in so much pain and discomfort.
Thank you all. Steve.
Here is a link to a list of haematologists recommended by MPN patients: mpnforum.com/list-hem/
This is published by the MPN Forum magazine and updated regularly. There are several in the U.K. Having a doctor that has experience in our rare diseases is fundamental. Good luck!
Susana x
A list of MPN haems is a great idea however from personal experience not all on this list specialise first and foremost in MPN’s. I would recommend plenty of research before you arrange anything or even better get a personal recommendation.
Hi,
Like everyone on this site, I am so sorry to hear of all the horrible experiences your wife has had and is still having. It must be a nightmare and I hope she manages to get the help she needs as soon as possible. I live in South Wales and am very happy to say that my experience of the NHS in Wales has been very good. My GPs are great and I never fail to get an appointment on the day that I ring. I have had PV for almost 4 years and from diagnosis, my treatment has been exemplary. I see a good haematologist every 3 months now. The time between the visits has gradually lengthened since he has brought my red cells, platelets etc under control with Hydroxycarbamide. Aspirin and Allopurinol for the gout that came with the PV.
it is so important for you and your wife to feel confident and I wish you well for your search for good care in your area. If the Royal Liverpool Hospital is not too far to travel, that may be a good option, but ideally, your wife needs the care close to hand. My thoughts are with you both. Let us know how you get on.
Sandra
Sending you both very best wishes to have good care very soon.I live and was diagnosed in Fr,I know your wife became ill here.So I feel very uncomfortable to know how good and knowledgeable of M P Ns Drs are here.I am checked for portal vein and just about every thing else monthly.I wish they would catch up in some parts of U K.I know we have the wonderful Claire Harrison...but I know from experience the lack of knowledge by the average G P. Again ,very best to you,will keep thinking of your wife and hope for the best help quickly.We all are with you here on this site.
The thrombosed portal vein would be better evaluated by a hepatologist, look to be referred to one who are based in a centre that performs liver transplants, Birmingham or Leeds may be your nearest for Wales, they will also have access to haematologists
Hello Jointpain
I have been following your wife's journey and wonder how she is now? Stay strong and try not to forget your needs. Anna
You have been going through such a rough time and I am so sorry to hear of your latest challenges. I do hope Maz and some of the MPN links will provide some new avenues for you to pursue. Wishing you both strength and hoping to hear some positive news very soon.
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