MPN Voice
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Fatigue and pneumonia

10 years ago I contracted pneumonia and was ill for months and never really recovered. After 5 years of repeated visits to GP it was discovered that I had ET JAK 2,was given Hydroxy and sent home. Felt really unwell and fatigued and had repeated chest infections. My haemotologist merely said she'd get a copy of a letter which confirmed I had CFS. THEN I requested a sputum test and guess what? THe pneumonia bug is still in my lungs and I have a "spiny growth" although my GP doesn't know much about it! Am on yet more antibiotics which make me feel like the mad woman in Jane Eyre! So part explanation of fatigue. I have no support either from the medical profession or anyone else. Spend days and days without seeing or speaking to anyone - who mentioned a Clinical Psychologist? That resulted in my being referred to the adult Mental Health Team! My haemotologist seems pretty well uninterested although my GP prescribes diazepam which keeps me reasonably sane. We are all doing our best to deal with this illness so forgive the rant. Just wish there was more support. It would be so good to have a little excursion to the garden centre but each day results in my body saying NO. Fingers crossed that the lung problem will be resolved which might help with the fatigue and end my feeling like death on a piece of toast. I send you all my prayers and support. It's good to know you are there. Mary

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o dear, nothing useful to say, but hope u manage that trip to the garden centre soon

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Hi Mary

What a dreadful situation to be in. Are you anywhere near London? I highly recommend asking for a referral to see Professor Claire Harrison at Guy's Hospital (London Bridge) and then at least you would know whether Hydroxy is the right medication. It made me feel exhausted and very unwell so I was put on interferon injections fortnightly. This is much better for me as it controls the platelets better. Good luck 😊

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Thinking about you Mary. I don't understand all the things you are going through but huge sympathy re the fatigue. Hope you start feeling better soon. My hubby (who doesn't have an MPN to cope with as well) is on his third lot of antibiotics for a chest infection and I know how exhausted he's been!

Kindest regards and a load of E hugs Aime xx😺😺

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I'm so sorry to hear about your struggle. Through it all you have survived and I thank you for sharing. It is a hard journey for those with MPNs in many different ways. I hope you recover from this health issue and you can move on from the extreme fatigue. Look after yourself. I find pacing helps. Really being sensitive to what I can do on any one day.

Mal

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Have you seen a pulmonologist? I have recently been reading about the higher incidence of pulmonary hypertension in MPNs and it might be worth ruling that out if you haven't already? Either way I would take chronic lung issues straight to one who specializes in them. I hope you find relief soon. That sounds miserable.

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Fatigue & pneumonia

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Fatigue and pneumonia

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Thoughts are with you Mary, hope things improve for you soon.

Mary x

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I can't give you any advice - just sending you a virtual hug! x

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