i just recieved news from my asthma nurse that i have now got a place for this treament ....... yippppeeee !!!!!!
bronchothermoplasty: i just recieved... - Asthma Community ...
bronchothermoplasty
64 Replies
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thats fab news, fingers crossed this is the road to a ""new life"" for you!!
xx
Yey. Great news. Do you know yet when they'll do it?
I got an appointment on the 22nf of feb to discuss it further then should start 1-2 weeks after this ..... Clinic dr has been great and has discussed it and gave me literature to read up on last year ... Just lung function was to low Last year. Now they reduced it I now fit the criteria and as treatments are running out they pushed to get me on it .....
That's great news gussypoo! Hope it all goes well and crossed fingers it helps.
That's great news Gussypoo I hope it all goes well for you
Fantastic news. wish you all the luck in the world with this treatment when it starts.
Good luck with the bronchothermoplasty.... A cheeky ask... would you mind posting at a later point on how you got on with this treatment? As it is so new there is not much info on it... Thanks...:)))
Yep will Keep you all Posted .. Tho hope I don't bore you all ....
Good luck, keep us posted. Oh and Gussypoo, don't think you could bore anyone 
That's great news! I hope it helps you, and I look forward to hearing about it 
went to clinic today, due to get my 1st session on monday, just need the lung function to be 50%, free from infection and well enough for the treatment, fingers crossed that the lungs behave over the weekend and increased steriods improve the lungs.......
Got everything crossed for you xxx
Great News !Hope all goes well for you.
Hi, I would be really keen to know how it goes as I have just been referred for this too.
Ok folks fingers crossed .... Fasting and waiting to go .....
Just gotta blow 50% lung function before they can start ....
3 days of increased Pred hopefully has helped !!!!!
Good luck gussypoo...hope it goes well x
Best of luck! Hope it all goes well, let us know how you get on.
Good luck today,hope goes well for you !
Good luck I hope it goes ok
Good luck hun this could change your life for the better hope everything goes well xxxx
Hope alls gone well, take care xx
good luck, fingers crossed here. hope you get on ok.
Good luck!!!!
good luck hope it all goes smoothly. let us all know how you go as soon as you can. will be thinking about you. xx ><>
Had my lung function .... Was in 45% despite the increase in Pred .. So I got a wee neb. Function got be 50% . Drs dcided i can get the treatment whoopee... Cannula inserted ... I've sedation to be given out the proceedure .... Nasal spray and throat sprays given..... Even when fasting Tasted disgusting ... I closed my eyes as inserted the tube ... He he he I fell asleep. Don't know wot else happened .... Coughing and wheezing more and the worse sore throat ever !!!!!! Waiting for repeat lung function only small dip is permitted from this morning readings or I'm in for further observation. .... To be honest worse bit was the sprays !!!!!!
from what i've read you are likely to feel worse, wheezey chesty for a bit after this first one. hopefully you are allowed two more goes in the near future. if you have to stay in doesnt mean that it didnt work, means at least they would rather monitor you for your own wellbeing! so glad it went ok and that you slept through. take care, rest and go gently. thinking of you. xx ><>
Lung function is ok... Allowed home to reduce the Pred in 2 day and start antibiotics if I start a productive cough. And seek medical advice if any concerns .... Cough and wheeze evident but nothing to bad that he nebs don't fix .... Paracetamol for the throat and a good night sleep !!!!
fantastic news on getting home hope you start improving soon.
Great to hear it went well and you're home already. Those anaesthetic sprays are foul (had a few with naso-endoscopes) & sore throat ouch esp if you can't have a drink for a while. Could be worth a try gargling dissolvable paracetamol if you have any.
Glad it went well !
Good news glad all went well especially as you were able to sleep through it!
Glad it all went well and you're back home! Crossed fingers you start seeing improvement soon.
I know what you mean about the sprays, that was definitely the worst part of my bronchoscopy! Did they use that foul throat one that tastes of banana and makes you feel like you can't swallow properly?
Great news!
Glad evertything went well and you are back home... hope you see the benefits from the procedure soon...
I am so pleased everything went well for you
I'm so glad that it went well for you. Makes me feel a little less anxious for myself. Keep well.
Asthma taking a few days to settle ( I'm not known for being patient ) so a few days longer on the Prednisolone at the higher dose... But the pain in lower lobe has gone now .... Just need the others buys done and hopefully all the pain will be gone ...
I have my clinic appointment on Wednesday next week. Hoping the magic numbers have improved . Its been just over a week Asthma still the same tho the pain has reduced in the right lung ...so I'm pleased with that ...
Well I had clinic appointment Next season will be on the 26th of march ... Was told that due to the inflammation and lungs being too narrow they where unable to go as far or deep as they initially planned with the treatment , but dr's still hoping for improvement with what was done .... Lung function slight dip but only just .... Clinically I have less pain and no longer out of puff when resting ... Told I look better also. So I think it's definately a positive result and I'm continueing with the treatment..so still smiling !!!!!
Glad your treatment is going well... Thank you for the updates
I'm so pleased it is going well for you and good luck for the 26th.
Valj have you heard any more about your treatment yet ...
Hi Gussypoo
I have an initial appointment at the Brompton on the 10th of April and will hopefully find out then if they will do it. I don't know if there will be too much of a delay waiting for pct funding etc but I hope not. I am desperate to get back to work as I have been off since September feeling very sorry for myself. Work have been good though I am not sure how long they will wait. I had been counting the days until my appointment, but have just had a really bad week and stopped thinking about much at all. Will keep you posted.
Today's treatment has been put off til Thursday problem with the scope. Suits me better as the lungs been having a mardis gra since last week and need to settle down before Thursday .....
Hi, Hope your lungs settle down in time for Thursday. I was absolutely gutted on Saturday to get a letter from the Brompton cancelling my appointment for the 10th April. It has now been moved to the 30th May. I am just giving them time to get into work and I am going to be on the phone soon!!
Good luck
Val
That's quite a long time away. Hope you Get a quicker appointment val
Well I had my second session today. The base of the left lung got treated ... This time it wasnt as pleasant and a bit uncomfortable near the end .... Could feel it zapping and the bronchoscope movement to other bits..... So next time they gonna give me more sedation '!!!!! Plus i got a lovely dry mouth due to Meds to stop the secretions !!!!! Post lung function readings should a slight increase in numbers .....
Had my final treatment on Monday ... This time both upper lobes of my lungs got treated and tho the proceedure was better this time . Thanks to the sedation . However I felt unwell during the recovery period , chest got really sore and short of breath . The nebuliser and pain killers quickly resolved this . Reviewed by medical staff and the repeat lung function was fine and so i was sent home ... Things got worse overnight and i needed more nebulisers ... Couldn't stop coughing ,wheezing and the stridor , as instructed phoned the respiratory dr and was told that as both lungs where done. Then my asthma would be worse over next few days before it would settle down. Reassured that the final stage was the worse one to experience . I went and had. A X-ray and was reviewed by the dr ... Things where fine,told I could manage things at home which I have . In the past I have noticed my asthma was worse for about 1-2 weeks after the proceedures but nothing compared to the way I felt during the night after this. Thankfully managed to stay at home and riding out the bumps .....
That's all the sessions completed . It's felt like a quick time scale and appologise for anyone I've bored with it .
Am I glad its over? yes .
Have I noticed an improvement ? yes lung function now finally up at 48 % on maintenance dose of prednisolone . CKan now sit in relative ease . As not as much pain evident in the lungs and not out of puff when sitting, being active is still a challenge , so dr is recommending pulmonary rehab . So I can safely learn new capabilities and new limitations of my asthma .
Any concerns ? Yes as it's still relatively new they don't know if there is any long term side effects of it yet and don't know how long the positive effects will last for.
Would I recommend it ? Yes tho proceedure is unpleasant and asthma is unsettled after it I do feel more positive for doing it. Thankfully by discussing it well with medical staff I was prepared for most of the little niggles that have occurred and by having increased contact points any problems where quickly addressed and resolved . Dr have said that this wont cure or solve my asthma . The aim of it was to reduce hospital admissions . Which it alreafy had . Also to teduce the maintenance dose of prednisolone . Told i will still require it on a daily basis but hopefully dose will be low enough that risk of side effects will be lower .
So i am now waiting patiently to asses the lung capabilities . Yippeee !!!!
I hope your lungs are settling down now after your last treatment and not misbehaving to much....
Thank you for posting all the info as it is nice to see how the newer treatments work from a patients perspective rather than a medical professional.
Thanks for all the info gussypoo. It has been really useful to get a patient's perspective on it. I am off to the RBH on the 16th and will see then if they will do it. Fingers crossed, but with some trepidation.
Great news Gussypoo!!!!!
Hope things settle soon but sounds positive for you
i just recieved news from my asthma nurse that i have now got a place for this treament ....... yippppeeee !!!!!!
Hey, hows things going? Hope treatment is working for you, and lungs have started calming down! X
Had my 2 week follow up today ... Seen the dr pleased with the progress so far. Was laughing said I'm walking faster now , quickest she's seen me move in a long time. So says I need to have a 5 minute walk each day in an area with benches so I can rest up if needed ... Then the good news . To go back in 6 weeks with a view of reducing the steroids !!!!! There goes the 3 month review !!! Lungs bit naughty at night so hope they settle soon !!!
It's put a big smile on my face to hear that you're doing well. Long may you continue to improve. I hope you get to reduce the steroids, and that the lungs behave at night. Good luck. x
Sounds very encouraging, hope things keep going well and you can reduce steroids!
valj, crossing fingers your appt about having this goes well too - is it next week?
Hi Gussypoo, so pleased to hear how you are doing. long may it continue! The thought of actually going for a walk must be great.
I am off to the Brompton on Wednesday, can't wait now and counting the days, but trying not to get my hopes up too much for a quick appt for the treatment (if they say they will do it). Just out of interest did you have to wait for pct funding?
All the best.
Val it was about 2 months . But they had to get the funding to include me as part of the trial ... As the trial was due to end in march it kinda forced an urgency in it. So I don't know if it was dealt with quicker or just the normal length .... Fingers crossed for you... I keep telling myself that the bumpy time after each session is so worth it. .... I just want out on that bike in the summer that's my goal !!!!!!
Hi val how did things go on the 16th hope it was good news ...
Apologies in advance for the long post!!! I got up at 4am to get to London in time. I saw Dr Menzies-Gow (eventually after being called in to see someone else first) and he was really nice. He said that my asthma didn't seem to fit the usual pattern and he was not sure whether thermoplasty was the right thing to do. He said that they would do a chest xray and some initial blood tests and then get me back as an in patient for a few days for some further in depth testing in about 8 weeks. I had my tests and got the coach home. Arrived home at about 4.15. Just finished our dinner and the phone rang. It was Dr MG to say that one of my tests was positive and that I was at high risk of a pulmonary embolism (blood clot in the lung). He said that I should go along to my local hospital to get it checked out - so there I was thinking tomorrow or the next day, but he said - no you need to go today to A&E. Off we went again -first time in a while that I've been to A&E when I've been feeling ok! They weren't able to get the xray and blood test results sent over so they decided to do their own so I had yet another xray and blood tests as well as an ecg, Heparin injections and the dreaded arterial blood gases. 2 hours later the bloods were not back and they discovered that the pod had got stuck in the chute and my blood had been sat there for 2 hours+ Finally the bloods came back at just before midnight. This time the test was negative and so they sent me home. My husband and I were so unbelievably tired. The next evening I had another phonecall from Dr MG's registrar to see if I was ok. He was very perplexed that I had not had a scan so he phoned my local hospital and asked them to do it, they said no and so the upshot is that I have to go back to the Brompton again tomorrow and they will repeat the test and if it is positive this time they will scan me. I'm not sure if the heparin will affect the blood tests. I'm keeping my fingers crossed that it will be negative and I can just come home again. Every time I think I am getting somewhere something else happens.
Gussypoo, how are you doing now? Fab to hear dr was pleased with the progress so far. Hope you get out on your bike this summer!
Valj, thanks for your update on the RBH appt too. 4am start, ouch. Good to hear Dr MG was nice. Did he say why he thought your asthma was not typical and what tests to explain when you stay? Wow, a consultant rather than a reg/nurse calling you directly and on the same day! Must be frustrating with the long day and no answers with the blood tests/?VQ scan at your local yet, hope it gets sorted tomorrow at the Brompton and you get some answers soon.
Sorry to hear about your run around Val . Hope everything gets the all clear and the inpatient tests has a positive outcome.
Tj lungs definately taking longer to settle, met another person who has had the treatment also, he says it took about a month for the last session to settle down, so I just have to be patient ....
Thanks Gussypoo, I went back to the Brompton yesterday and had a CT scan and got the all clear for pulmonary embolism, which is a relief.
Good to hear you are progressing. I was told at the Brompton that the thermoplasty can make you worse for 3 months and not the month it says in all the literature. Hope your lungs settle down soon. Best wishes
Bumped up for sassyj.
Thought you mught like a read if you haven't already.
thanks for bumping this lou.. its been really interesting to read.. a lot of things the leaflets dont tell you..
thanks again
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