I have bronchiectasis and get regular episodes of hemopytsis that have worsened this year. I'm waiting to be called in for a BAE in the next few weeks. Tranexamic acid is making little if any difference. I'm also being treated for an aspergillus infection now, which isn't much fun
Does anyone know what I should expect of the BAE and the recovery time?
Hello 24cc. I have lifelong bronchiectasis and was referred for BAE following a huge haemoptisis in Nov 2020. I have damaged blood vessels caused by the bronch. However, events took over and I have not had it. I won’t bore you with complicated details. It is probably inevitable that I shall have to have this procedure at some point and so, although I can’t answer your question I will be very grateful for your experience of the procedure. I hope that it goes well.
Thanks Littlepom. I'll keep you posted.
I have bronchiectasis too and had a massive haemoptysis last year. I was on the cusp of having a BAE but luckily the Tranexamic acid by IV stemmed the massive bleed. I was advised it was a minimally invasive procedure with a good recovery.
That is awful you keep getting regular episodes, are they triggered by hard coughing before it happens? I guess having aspergillus infection is the problem? I really hope you can get your procedure done very soon, it would be interesting how you get on. All the very best.
Thanks. I've had haemoptysis very mildly off and on for years and had a bad episode at the start of the year that isn't settling down completely. I'm not sure the tranexamic acid is making much difference. They know where the bleeding is coming from now and I'm waiting for a date for the BAE. It was decided that my bloods indicated aspergillus last week but no one has had time to tell me much about what is actually wrong with me. The tablets for that can cause lots of side effects that make life a bit difficult at times. My gp is hopeless so I can only hope I get the BAE soon and can see/speak fully to my consultant.
How awful for you. Let's hope you get a date really soon. I've had ongoing problems too with infection and vile side effects from antibiotics, with no help from the GP. The consultant finally prescribed antibiotics through a nebuliser which has made a huge difference, that maybe an option for you. Also tranexamic acid can be nebulized which I believe may be more effective than the tranexamic tablets to stem bleeds.Your consultant will no doubt advise you.
How have things progressed with your NTM diagnosis?I have, after many years been offered treatment.
Made a habit of sending my consultant lots of bloody Sputum images!
And of course positive cultures.
They never managed to work out what bug I've got so I've gone untreated since it wasn't causing me too many problems. Now I've got regular haemoptysis and the ct scan shows the mass has grown so I'm hoping that after the BAE (this week - not looking forward to it) I will have another bronchoscopy that will finally establish what's growing. The CT report says it's either an NTM, fungal or just possibly cancer. It's all very exasperating and I've found the cold winter weather really hard to deal with. To top it all I had covid last month despite having been so careful. Good luck with your treatment.
Just had COVID myself, managed to get through but was a bit rough at the end.I have Nodules which are forming cavities.
I know It could be Cancer, but I just completely put that to bed in my mind and try and focus on the fact the NTM treatment will make me less breathless and give me back some energy.
Good Luck with everything.
I had my BAE on Wednesday. It wasn't painful but was definitely an endurance test, involving 3 hours as he poked around and a further 4 hours remaining flat on my back. Because of the need to hold my breath for loads of xrays I couldn't be sedated, but fortunately he gave me something that helped me relax otherwise I couldn't have got through it. He managed to do most of what needed doing although apparently this is likely to need repeating every couple of years unfortunately. I had an overnight stay and am back home with a sore chest and groin. I can't praise the consultant and other staff at Hammersmith enough - they were all lovely.
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