My normal haematologist was on call this week so a different one was on clinic when I went on Thursday. I said I was concerned about my counts Hgb 9.1, white cells 1.85, platelets 56 and neutrophils 0.5.! He told me he wasn't at all worried about my Hgb until it gets below 9 and that there was nothing he could do, I would just have to put up with that as it just the way the drug works. I told him my treatment plan was devised to keep my Hgb above 10 as I am so symptomatic below that figure. That clearly annoyed him. He agreed that he was worried about my neutrophils and spent upwards of 5 mins reading about Jakavi on the internet and then announced that he was reducing the dose.
I have recently had a bout of severe vertigo and asked him if that had been viral would that account for my low counts? He replied that he was reducing the dose of Jakavi! I then told him that my cholesterol was high after a fasting test and before I had finished the sentence he said that was for my GP to sort out. When I informed him that my consultant had stopped my statin because of liver results and my GP had asked me to discuss it with my consultant he rather reluctantly said he would ask my consultant himself.
When I said I was seeing Claire Harrison in two weeks he looked vague enough for me to explain who she was and that I intended to get some of the answers he'd failed to give me from her he was even more indignant and dismissed me saying that I would indeed be better asking her!
My normal consultant is lovely but I will refuse to see this man again should he show up at clinic in the future. We clearly didn't hit it off! I had other questions on my list that I gave up on asking! I do know that this is not the normal treatment I get at this clinic which is maybe why it came as a bit of a shock. I will be asking Claire Harrison the questions when I see her.
Sorry for the protracted rant! I think some doctors need to be taught some bedside manner!
Hope everyone is as well as can be. Best wishes
Janxx
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beetle
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Hi Jan, a lot of us seem to be having problems with consultants just now. I used to be quite reserved but now I think well its my body, my condition, my life so I’m entitled to answers to my questions and I’m a human being so treat me like one!
Yes, Aime I agree. And when I have travelled an hour each way to see him I don't expect to be treated like that. Maybe his aggression was to cover up the fact that he could see I clearly knew more than him. Anyway he's blacklisted as far as I'm concerned and I will let my consultant know that. He's used to me sticking up for myself and we have discussions based on us being equal. After all I've had an MPN for nearly 24 years now and have absorbed a lot of information during that time
Hi Jan , cabn fully appreciate why you were fuming. I had a similar experience when I was intermediate MF with a registrar Hem who told me I couldn't have symptoms as I didnt register on the scale where my MF was. Clearly a load of BS . I left under a cloud and like you vowed I wouldn't lower myself to see him again as I knew more than he did.
I think your counts are quite low and mirror mine which are up and down so supported by an odd transfusion but mainly self administered injections of GCSF Granulocytes Colony Stimulating Factor to boost white cells and Aranesp to boost reds. These are necessary to counter the Rux and immuno-suppressant.
I'm sure you appt with Prof Harrison will be a zillions times better x
Yes, Chris. I have seen Claire Harrison before and I know I won't be treated like that by her. I will see what she has to say about my low counts. I fear another BMB coming my way😲. I'll let you know how I get on. Feb 12th is appointment date and I'm having a ferriscan on the same day. Two of my sons who live in London have already made arrangements to take great care of me including a theatre trip to see Aladdin. All the automations travelling in London terrify me now so I will have safe hands helping me along!
That’s great your sons are there for you Jan as going to an appointment in a different hospital/city adds more stress to the visit. I have only met Prof Harrison once at a forum and was so impressed with her. I only wish I could be under her care too and I’m sure you will be treated very well at your appointment.
All the very best for it. Let us know how you get on. Kindest regards and E hugs Aime xx😺😺
Hi Jan. wow that was a stormy consultation for you. How incredibly insensitive and unkind was he. This is so unacceptable , you do not go to get treatment like that, I am sure he was trying to cover his own inexperience of our conditions by acting in this manner. But you come out feeling not just angry but hurt and very alone. I am so sorry you were treated in this way.no good for your emotional or physical well being. It really does help to write this down to share with all who understand , it’s very cathartic to have a rant !!
So glad to hear you have a consultation with Prof Harrison, she sounds an amazing Doc. Also your boys will be taking special care of Mum. With very best wishes Sandy x
I’m a little confused (sorry!). Was this consultation at Guy’s? You mention that you’re due to see Prof Harrison and I wasn’t sure whether the unconstructive consultation you had was with another member of The Guy’s team. I think not. It doesn’t sound like them! But stuff happens.
Sorry about the autocorrect! I didn't mean to call you Ebony! I didn't notice until after I had posted! Calling someone by the wrong name is actually quite rude so I apologise😲
Thank you Dora. I do intend to mention it to my regular haematologist. I often think that doctors react like that when they are on the defensive and sense that the patient might know more than they do? The fact that he studied ruxolitinib online for at least five minutes might have been a bit of a giveaway! He clearly had not read my notes and seen my treatment plan though
Totally understand your reaction, its a hard pill to swallow indifference and ignorance. Some of these people need to take lessons in client/practitioner relationships - it can make such a difference to how you are made to feel and how you manage your condition. I have always been taught some one won't always remember your name or what you said but they will always remember how you made them feel. I'm still smarting from my indifferent Locum Consultant at my last visit and just see my next appointment in March as a means to an end to get my prescription of Hydroxy. Best wishes at your appointment with Professor Harrison, I am sure it will make up for this needless experience. Enjoy your family.
Thank you. I have been reluctant to say that this man I saw was not British and have been wondering if what happened might be explained by cultural differences. I know the NHS is trying to recruit many more foreign doctors so maybe this is something we may all have to get used to?
I just know my visit to Guy's will be a whole different ball game and am glad for my regular consultant being such a lovely person.
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I've met a consultant - and she was good!
Here comes a rant!
appointment with consultant today - thoughts?!
Slightly disconcerting review
