Naming no names or surgery. If you have followed my wife's story so far, she had a grade 5 spleen rupture in France on May 1st and after the removal of said spleen the following tests suggest an MPN probably Myelofibritis, full diagnosis in about a week or so and we will be notified by email from France as we finally got back to Wales early Monday. Anyway I phoned for an appointment last Friday to be told my wife could have one on 16th July, and they knew of the great fun we have been having trying to get back, and the further week in hospital in France due to a fever of 39.6 degrees. I got an emergency appointment for 11.10 Monday, saw the Doctor who has altered the French expert haematologists prescription for a penicillin twice a day to the same but less than half the dose twice a day, decided that as the NHS doesn't do rilmenidine so she can't have that, then doubled the dose of bisoprolol in the morning and stopped the evening dose, and not prescribed the heparin injection at all. This along with not referring to an oncologist is bizarre. The dose the NHS say for someone without a spleen is as the French prescribed. To do away with the heparin when her platelets are over 880 along with removing half of the blood pressure pills while knowing one kidney is blocked and not working makes me want to scream. I will be having words tomorrow Thursday.
Would you continue with this doctor?: Naming no... - MPN Voice
Would you continue with this doctor?
I can believe the changes N H S have done.I have P V,was diagnosed in Fr as at the time we were 1/2in U K and stayed with N H S.I could not get some of the same medication I had in F R.We now have transferred to Fr Health system,as U K refused to pay for my necessary treatment.......I hope you soon get some satisfaction.....very best to you both.My treatment here is first class ,I am always worried when coming to family in U K ! Sally
Thank you for your reply, we are intrigued as to what treatment the NHS would not pay for!
I thought we had an uphill battle when I first spoke to this doctor a few weeks ago and he had no idea what an MPN was, I had to explain, and I thought he may have researched it a little in the meantime, but I imagine he never thought we would meet again because he was just as ignorant of the seriousness of it and never prescribed the seven day course of antibiotics my wife should have to hand in case of an animal or tick bite in relation to the splenectomy. Or the need to have heparin for the platelets.
My heart goes out to you, I hope you succeed to change the mind of your GP. My GP shook his head as an answer to my question to him " I am not getting anywhere with this, am I? ( Me fighting my corner, politely.} So condescending. Good luck, as I know there are some good ones out there, as I had before we moved to another county.
Which country did you move to ?
County. Moved to Essex, soon moving again. Hope to find better GP. I visit the Netherlands regularly, here I find better treatment but it also depends how well informed the GP is concerning B12 deficiency.
Sorry I misread county for country, may I ask what has knowledge of B12 deficiency has got to do with an MPN or lack of a spleen?
I just reacted to your experience with your UK GP. In my case my new GP decided to change my medication prescribed by my neurologist . I tried to change his mind....
Sorry I thought you had a revelation on a link between MPN and B12!
As for B12 deficiency I also changed doctors in December because the doctor I was with didn't accept I was deficient even though after a month of supplements my serum level was 178 and I had many symptoms. Shame is these new doctors at my wife's surgery are no better, and now there are no others I can go to. So for my wife and for myself I will be battling on against ignorant doctors only interested in where to go next on holiday.
Hi jointpain my heart also goes out to your family. I can relate. Educate yourself. Read journal articles, clinical trials, BLOOD magazine etc. Become a member of patientpower.info/ Kind regards God Bless from
Oz
Hi, I'm sorry you and your wife have had such a terrible time. All I can add is that I would insist on being referred to a haematologist, preferably an MPN specialist (Maz may be able to give you a list) asap. Good luck, F.
Glad to hear that u got safely home. Maybe get the MPN diagnosis - to be sure of yr ground - then go and jump up and down about referral to an appropriate haematologist? Good luck.
Politely but definitely insist on being referred to an MPN specialist. One way of doing this quickly might be to pay for a private consultation. I did this and then continued under the local NHS Haematology Dept.
I have found the level of knowledge re MPNs among the different haematologists I have met there in the last 7 years variable but I have taken seriously the NHS statement that 'you are the manager of your illness'! I do my managing with the help of the MPN website and forums I have attended, and feel reasonably secure. However, I recognise I have not had the degree of difficulty which your wife has experienced. I do hope you can find help soon. Sallie
JOintpain. So sorry to hear of your wife's difficulties. You say you are coming back to Wales. All I can say is in my experience my GP knows nothing about ET and my haemo. Is only interested in my blood counts. Had a second opinion from a "specialist" at another hospital and he told me I would get better support and info. from MPN. I'm sad to say that in general Wales is the poor relation when it comes to conditions like these. Maybe Maz can guide you in finding a specialist but from my experience they are few and far between. I wish you and your wife (Inca) ? Success and send heartfelt wishes that you find someone who can help. Mary
Hi,
I've not been following your wife's story however wish her all the best.
I was diagnosed with MPN JAK+ haematologist saying most likely ET after suffering from a splenic infarct in 2016.
I am now 7 weeks post splenectomy plus unfortunately had a small bowel resection during the same operation due to a mesenteric cyst. Did your wife have keyhole or open surgery? My surgeon tried keyhole but had to revert to open surgery due to a bleed during the operation.
With regard to antiobiotics I have been prescribed phenoxmethylpenicillin, 250mg twice a day. I live in the midlands (UK) and my GP is fantastic and works closely with my haematologist. My platelets shot up to 980 after the splenectomy so my haematologist insisted I had daily tinzapirin injections for 8 weeks as well as clopidogrol. I have just returned from a long haul holiday and my GP prescribed a broad spectrum antiobiotic which I was told to start taking at the first sign of any fever, which 2 days into my holiday I did! It is so important that you have a GP who understands MPNS/splenectomy, I have total faith in mine.
I wish you and your wife all the best and hope her recovery goes well as speaking from experience I know how painful this is.
Hi Lorraine. Hope you are well. My wife's first blood test at the hospital in France showed platelets at 1088000, not sure if before or after the splenectomy, which was a full open surgery op. She now has the broad spec antibiotics to keep with her, the GP did not want to prescribe this until I quoted NHS guidelines albeit from NHS Hampshire UK as Betsi Cadwaladr does not have anything online. Also she had an infection/high temp two weeks after leaving hospital and was in for a further week making her stays a total of three and a half weeks since her ruptured spleen.
I think you may be being short changed regarding the penicillin NHS recommend 500mg twice a day while in France they prescribed 1000000iu (about 600mg) it maybe why you had your infection while on holiday? I think my wife had some sort of infection for the two weeks she left as she wasn't well until she left the second time. We may find out which MPN this week.
Happy happy happy
High platelet count? Anagrelide? Hydroxyurea?
Recently diagnosed with MF
Peginterferon
