Bronchiectasis

[Ramy22]

Hello

Does anyone here have, or know if anyone who has ET and bronchiectasis? I have both and it appears that bronchiectasis is affecting ET by raising the plc every time I have a chest infection which is very often.

I just wondered if anyone had a similar experience and had any advice.

[champ30]

Hello there,I have MF and bronchiectasis.This time of year here in UK is awful.I have had the bronchiectasis for several years.It was my respitory consultant in August 2017 who discovered my anaemia through a blood test that I was eventually diagnosed with MF.Yes my platelets were 1000,amongst other things.

I am trying to cope with both moreso this time of year.thankfully now the MF is under control,unlike a year ago when I was having blood transfusions every 6 weeks.

Obviously it's not good news for either condition getting a chest infection.As my platelet levels are under control now,they don't seem to be raised noticeably with an infection.

Thank you for sharing,it's good to know that I'm not the only one with bronchiectasis!!

Regards Lynda

[Wyebird in reply to champ30]

AS I said to Ramy22 you have enough on your plate without that as well.

Take care

[Ramy22]

Oh, although I am so very sorry you have MF, I am pleased someone else has bronchiectasis and a MPN!!! .

My plc hates chest infections and so elevates when I get one, which is often. Dr Lung isn’t really aware of ET.....Dr Blood is but wants to increase the Hu that usually controls ET when an infection isn’t present... which, due to UK weather, is all the time in the winter!

I have had ET for decades but was only diagnosed with Bronchiectasis in 2016.

It is currently driving me potty and I am falling out with the medical profession!! 😀 dear oh dear!

Thank you!!!!

Mary

[Wyebird]

Oh no as if you haven’t enough to contend with. Take care.

[Ramy22 in reply to Wyebird]

Thank you.... usually it’s all controlled and not a problem ... it’s just now when one is affecting the other. .... I wondered whether anyone else had it. You take care too.

[Garden987]

HI. Sorry to hear you have Bronchiectasis too. I'Ve just about given up with the NHS. Four visits to the chest clinic, breath test - showed 2.5 - whereas 4 is OK. Also told it could be emphysemaia. Finally saw the "God". Doctor for about 5 minutes. H said my lung function seems normal but he can't cure it and no further action needs to be taken at this stage.

!'!!! Suffered from. Best infections for a year before finally being referred.Am still very breathless though no infections. I have reached the point where I haven'T the energy now to spend a day travelling to hospital.I have JAK 2 / CALR and have awful fatigue. I am 80 and can barely walk (According to another "expert ". I'M fine. What's the point in exhausting myself when they obviously don't know or care. I live in Wales and the treatment/medical treatment leaves one wondering what to do. I hope you find a good physician who can help you. We have enough to be dealing with. No tips on how to deal with. It, sorry. Wishing you success in finding help. Mary

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[Ramy22]

That sounds just awful.... they can’t leave you without anything! They need to make sure you are OK!!!! Goodness me! This is dreadful!!!

[lavender007]

Hi Ramy,Have you used blf.org.uk . My mum was diagnosed recently. blf.org.uk/bronchiectasis, they have great booklets.

Good luck

[Ramy22 in reply to lavender007]

Hello... thanks for your help... my problem though is the effect bronchiectasis is having on Essential Thombocythemia...my medically controlled platelet count rises every time I have a chest infection, which is often. I just wanted to know who else has both bronchiectasis AND ET to see if the same thing happened.

Ramy