Discussion with haemo. Nurse re fatigue

[Garden987]

Hi everyone. Some interesting revelations re fatigue. Have just spoken to my haemo. Nurse because my haemotologist has said that my fatigue is not connected to ET as I had problems before diagnosis and that meltdowns are not usual with ET! I pointed out that many of you have said you do suffer from fatigue and meltdowns. Haemo. Nurse said that the patients they see don't have these problems. I suggested. (and she agreed) that she would look at MPN Voice! So folks, we must educate our doctors because we are the people trying to cope with this condition and if we don't push then they won't see the full picture. I honestly don't think doctors have a clue about MPNs but go by the book and we are not just numbers! So there! Hope some of you will find this of help and my good wishes to all of you. Mary

[Raphael_UK]

You are not wrong about doctors not knowing much about MPN / ET. I went to the doctor about an unrelated matter and I told him I had Essential Thrombocythemia, he said you are pronouncing it wrong its called Thrombocytopenia, I had to explain I had Thrombocythemia, the oposite of Thrombocytopenia, which is a condition in which you have a low blood platelet count.

[Jellybean129 in reply to Raphael_UK]

Oh dear!!!

[Swede in reply to Raphael_UK]

Interesting...my doc's sectretary, constantly gets it wrong (my keyboardis going cocobello hence funny fonts and stuff!!)and what more is that she is sending it to my GP, so she gets it wrong as well. I have been ringing them so many times to correct it.

[Rastavapa in reply to Raphael_UK]

I have lost count the amount of times a doctor has said I have thrombocytopenia lol, shame really they are supposed to be the experts...

[Cassie11 in reply to Raphael_UK]

Just shows what some doctors know!

[Jellybean129]

Hi Mary

The haemo nurse I saw said ET was not cancer - it was pre cancerous! Sounds like there are a lot out there who don't know enough but make out that they do. Fair enough - blood abnormalities cover a huge range of diagnoses but I wish they could just put their hands up and admit they aren't sure and will find someone who is!

Seeing as diagnosis seems to take a long time for most of us, I can't understand how the haemo is so certain your fatigue isn't related to your ET. It's funny how so many of us struggle with fatigue yet are told by many it has nothing to do with our MPN's - certainly the big guns dealing with MPN's seem to recognise fatigue as a major part of our lives.

Keep fighting your corner, Mary, and well done for the educating you have already done.

Best wishes

Gill x

[Ovingite in reply to Jellybean129]

You are not alone in this. The senior haematology consultant at my local hospital (no names!), who is co-located in the cancer wing, is adamant that ET is not a cancer but a pre-cancerous disorder. I suspect that is what they were taught when they trained years ago, but it's worrying that they are out of date. On the positive side, the diagnosis and treatment are the same whatever you call it.

[BigLish in reply to Ovingite]

I was told when first diagnosed with PV that it was not a cancer but pre cursor to cancer and “ don’t go thinking you can claim on any insurances for this because you can’t” were his next words to me which I was shocked at as I hadn’t even thought or mentioned anything to do with insurance claims!! I am so grateful to the next dr I saw who put me on to MPN voice where I learned mpn’s are cancer and claimable under most critical illness policies and led me to a successful insurance claim. Their ignorance at times is really quite worrying!!

[Aime]

Hi Mary, good for you. I’m having to do the same with the team I see. If my blood counts falter, I will be asking for a second opinion. My haem team prof said, “they (Guys) don’t know any more than we do!,” my thoughts were - how much more arrogant can you get!!

Kind regards Aime x😺😺

[Aime]

That didn’t look right! I meant to say “they, I.e the team at Guys hospital don’t know anymore than we do!!🙁🙁

[Ramy22]

What’s a meltdown?

[Garden987 in reply to Ramy22]

Discussions with haemo. Nurse. HI Fammy. A meltdown is when things become. overwhelming,, I.e. Feeling defeated, exhausted,grief at not being able to do the things we used to be able to do and when there is no one to support you. Hours of crying and feeling unable to cope. They do pass but are very distressing at the time. Mary

[Ramy22 in reply to Garden987]

Ok... thanks for telling me.

[Ramy22 in reply to Garden987]

That does sound horrible!

[francesb]

Hi, this may interest you re research being done into fatigue suffered by MPN patients, scroll right down for the transcript.

patientpower.info/video/the...

My consultant acknowledges it is a common symptom of MPNs. Best wishes, Frances.

[Garden987 in reply to francesb]

Fatigue. Hi France's. Thanks for the info. I'm not sure what to do re pursuing the item further. Do I have to join patient power and/or use the app? Am a total geek with this machine and don't really know how to use it apart from emails and posts to MPN. Did you find it helpful and if so. In what way? Best wishes. Mary

[francesb in reply to Garden987]

Hi Mary, I signed up/registered to patient power and get regular emails re info they put out, it's well worth it as they publish some interesting stuff. Regards Frances

[Bridie123]

Well done Mary, I will try to be brave at my January appointment and give them the fatigue poster I picked up at the London conference, regards Carole ☺

[Karol_Rua]

Have you ever been told by a health professional, on discussing your sometimes-unmanageable fatigue, that "We're all tired!!!"