My concern over recent diagnosis

My concern over recent diagnosis

Hi, I am new to this site, so may be long post. I have Bronchiectasis (8yrs) & have had problems with appointments since new hospital opened 3yrs ago, plus I had to cancel 2 appts in 2012 because my partner diagnosed with cancer, so he came first, but sadly died in Sept 2012. I had to get my GP to get me back with my consultant & got appt for Feb 2013, saw Junior Dr who I told I had been unwell for few wks & knew I had infection. She mis diagnosed me so I went to my GP next day & she confirmed chest infection & gave me antibiotics. I was very ill & never quite recovered from that. For several months after this I did not get follow up appt with my consultant, my GP tried a few times & as my breathing was worse than ever before I was worried, I could only walk a few metres & stop to catch my breath, everything such an effort. I finally got appt for March this yr (2014) over a year since last one, so I ask my GP to do bloods & order x.ray prior to my appt. Lucky I did because I saw my consultant & he said I have another cavity in left lung although not good news it confirmed why I had felt so weak & breathless all time! He seemed concerned & ordered tests (CT Scan, Bronchoscopy, respiratory tests & bloods) & see him in 6 wks. Next appt 24 April, he gave me drug V.Fend (6 wk course) & see me in 8 wks! I have hearing probs, caused by Vancomycin 12 yrs ago (long story) so do not hear everything said & no one to listen for me now, so I was unsure what these V.Fend were for. Pharmacy warned me of side effects.. After taking them for 5 days, with bad side effects my tongue & glands in my throat swelled? I returned drug to Pharmacy at hospital the next day & told I needed to go to A&E to see a Dr as need alternative drug for my problem? I won,t go into the visit to A&E but I came away with no replacement as Dr I saw knew nothing about respiratory problems & said I need to get appt to see my consultant ASAP? Despite my GP & myself trying to get another appt since then (3 months now) still waiting!! I did get a copy of letter sent to my GP several wks after my last appt with my consultant with Diagnosis of Invasive Aspergillosis & as this is very serious & can end my life, I am frightened & despite help from PALS (patient liaison team) I am still waiting for appt to see my consultant & no explanation of what to expect with this disease invading my lungs etc. apart from my own research. (Scary) I did get e.mail from PALS 2wks ago to say ' my consultant now on annual leave til 18 August, but he has written to a Prof Wilson at Royal Brompton Hosp in London' about my diagnosis! I am so worried, is this because my consultant not had much experience with this 'Invasive Aspergillosis' or is he unsure I have it??.. Without help from PALS I would not know any of this! So I am still waiting. Does anyone else know about this life ending disease & what to expect?

35 Replies

  • Hi a can see why your concerned .. Dont really know much about it myself but heres link to blf info page

    Yer they revamped them to cover everthing

    Hope it helps

    Also try search in search box in this site ... cheers wishing u well

  • Thank you for yr reply, I will look at site u recommend & wish u well too.

  • Hi I have been living with Bronchiectasis for a good many years. My Consultant believes it to been caused by Whooping Cough when I was a child.

    I was thinking as I read of your plight," why doesn't your GP refer you to another hospital". I think a referral to Prof Wilson is a great step forward. Hopefully now you will begin to start getting some help that you obviously need right away.

    Stay strong. Think positive and welcome to HU. I hope you continue to visit and sound us out. Your input will no doubt help others too. Don't be worried about ranting here to if you need a place to let fly at the world. Kind wishes. Rib

  • Hi, thank you for yr reply. I am not sure if my consultant has referred me to Prof Wilson or just asking his advice? I was,nt given that info from PALS, I was hoping its because he,s not sure he diagnosed me correctly? The fact it's been over 3 months since diagnosis & no treatment is main worry, but I have researched this Invasive Aspergillosis & mortality rate is 95/100% so naturally I am extremely worried & think it's bad my Consultant did not see me again in 8 weeks or sooner, & I still do not know when l will get another appt to see him. My only reason for contracting this is breathing in spores from the air as l live nr open fields & breathing been worst ever the past year. The only illness I have had to give me the low immune system is pneumonia over the past few yrs & was very ill after mis diagnosis in Feb 2013! I hope it is a referral as I have lost confidence in him & the new hospital at Pembury now. Good luck with yr illness too :) Sandy

  • Hi there,

    I am so sorry that you are having such a terrible time. I have had bronchiectasis for 61 years (since I was 3) and you will regularly find me banging on about the fact that our treatment is dire compared to that for COPD and other lung conditions.I have been going to the QE in Birmingham for years and my treatment there has deteriorated beyond words.My consultant has been ill for months and I also had junior doctors in clinics who had no idea about bronchiectasis. A useless waste of a 70 mile round trip to a clinic. Aspergillosis is a funny one. There are two forms and even the medics get confused. If you have been diagnosed with invasive aspergillosis in your lungs (when the spores grow in the lungs) you should have been given antifungal drugs immediately and your consultant is in breach of care for not treating this. There is another condition which I had. It is reactive aspergillosis where the immune system causes an allergic reaction to the presence of aspergiller fungus (it is everywhere). My condition improved when my bronchiectasis was treated better. The GP who was treating me at the time has died and recently I asked my new doctor for a blood test because I suspected that it may be happening again. He had no idea what I was talking about. Find out who is the secretary of your consultant. call and express your worry about this diagnosis. It may also be worth saying that you are considering a formal complaint because a dangerous condition has been left untreated. Demand to see him and not in six months. They can find you an appointment if forced to. When you get to the clinic refuse to see anybody but the consultant. Good luck, I hope that they misdiagnosed you and that you have the allergic reaction.If you get to the Brompton I shall be very envious because they, at least, seem to know what they are talking about.

  • Hi & thank you for yr reply. At my appt on 24 April, I saw my consultant, at that time he had results of recent tests (CT Scan, Bronchoscopy & bloods) but not respiratory as they were being done on 2nd May. As I said b4, I have hearing probs & do miss parts of conversation, but I did hear the word Aspergillis & he did give me prescription for V.Fend to get from hosp pharmacy & warned me of some side effects. He said wanted to see me in 8 wks..Pharmacist also mentioned side effects. After reading leaflet at home, l was wary of taking this drug, so as I had appt for respiratory test in a few days, I waited for that. Respiratory tests were done & as I thought I had better breathing that day, I ask what she thought & was told not allowed to say, but did say they were not good & she would be going to see my consultants secretary to say I need to be seen urgently, not in several wks! She also recommended i do take the V.Fend. I did take them & felt spaced & strange, nausea & sleepy & on 5th day after taking eve pill, my tongue started to swell all down my throat & glands in neck. I took antihistamin & tried to sleep, it was late & decided to take no more & return them to hosp pharmacy the next day (Fri 9 May). Swelling was going down by then, pharmacist said I need to get alternative urgently & sent me to A&E...2 hours waste Of time & saw a Dr who said I should have called ambulance the night b4 & I would have seen a member of my consultants team & as she new nothing about my respiratory probs?? I got upset & said why should I waste ambulance when I could drive the next day? She then said she could not help me & I need urgent appt with my consultant & to ring his secretary on following mon (12 May) or get someone to do it for me!!! I have had GP reception staff & my GP try to get me appt since then & no joy so I contacted PALS (patient liaison team) to help & you see the rest in my post! So I am now waiting for my consultant to come back from holiday & hope he has had reply from Prof Wilson & may give me appt to see him ASAP?? I do hope he has referred me but I was not told that info by PALS. So for past 3 months I have kept trying thru my GP & PALS to get seen, I will contact PALS again next wk. if this is Invasive Aspergulliosis as my consultant diagnosed as my ImmunoCap is higher than 200 whatever that means. He also said in his Diagnosis to my GP that it is not the allergic Aspergillis as tests are neg to that. I do have a few of symptoms but heart echo was fine, so maybe it's early stages? It causes many problems as it spreads, multiple organ failure being worst! I must try to think positive altho not easy at this stage. I wish u well & thank you again.

    Sandy x

  • Hi Sandy,

    All of this delay seems to be because you were given a drug which doesn't suit you. Anti fungals can have horrible side effects. As soon as your Consultant is back phone his secretary yourself. The patient is the most important person but most of us leave it to GPs etc to garner information and get things moving because we are worried that we are not allowed to do it ourselves. On the contrary the consultant needs to know that whether he was away or not, you have been messed about because of lack of communication and lack of expertise on the part of doctors whom you have seen in his absence.I know that it is hard because all of these conditions are very debilitating and it is easy to just give up. You have been very aware of your conditions and the effect of the drugs and have done everything that you can. Now you need the professionals to do their job. Don't frighten yourself by looking at the end stages of this condition. Look at the fact that with the right antifungals it can be successfully treated

    Also, make sure that they keep an eye on your heart. I spent two years telling the clinic and my consultant that I was unusually breathless, only to be told that I wasn't clearing my lungs properly.After 60 years of doing it myself!!! Finally my daughter insisted on an ECG etc. I have AF, Tachycardia and heart failure. Now that I am on the correct drugs life is fine (apart from the badly treated bronchiectasis).

    Again, good luck, keep your chin up

  • Actually my GP was more concerned about heart it seemed & he ordered Echogram, to see if have hypertension? It was all ok, altho I now know Inv Aspergullosis can cause damage to heart valves. So that was good of him. I was recently sweating far too much & not normal, armpits were ok, it was head & body & I had no appetite & lost 5 Kilo, but not so bad now cooled down. I already see everything Inv Asp can do, when researching into it & I ask my local chemist if I was over re acting about wanting to see my consultant ASAP & she said I am not over re acting & will end my life!! I do hope I have been referred by him to Prof Wilson, but have to wait for now. Thank you for yr reply & you are in much worse condition than I am, so make me feel selfish moaning about mine. So lovely to talk to you x

  • Hi Sandy, Really sorry to hear about all your problems. I have had problems with a consultant in the past. My answer was to ask my g.p. to get me a second opinion. This he did right away even discussing which hospital to go to and telling me which he knew to be very good. I saw new cons. within 2 weeks. I was fortunate to be able to pay £200.00 for a private consultation of an hour. He turned out excellent and said he would transfer me to NHS for future apps. You are entitled tons second opinion but I don't know how long waiting period on the NHS. Hope you get something sorted very quickly. Thinking of you barnowl

  • If my consultant has referred me to Prof Wilson @ Royal Brompton i will be happy, but cannot find out til next wk. So will be contacting hosp again then thru PALS of course, as they r very helpful. I was thinking of private second opinion as well, so see how it goes. Many thanks Sandy x

  • Hi Sandy, you have been given some great advice by Stillstanding and you need to URGENTLY insist on seeing the consultant. If he/she is too busy, they need to refer you as an URGENT PATIENT to another specialist who can treat you. Vfend is an antifungal medication and it's uses include the treatment of Invasive Aspergillosis. You need to let them know that you had to stop it due to serious side effects and you are sicker now. Good luck and let us know how you go. I wish you all the very bestxx

  • Hi, thank you, I have found people on here to be so kind & helpful & makes me feel less alone & I will keep in contact to say how things go or don,t go as is the case at the minute!

    Sandy x

  • Hi Sandy, thanks - I just read your reply to Stillstanding. Good idea to ring PALS again and also ring secretary of consultant to get appt. If all else fails, ring the ambulance saying you feel very ill or something, so you get to see the consultant's team as they advised at A&E. By the sounds of things you need treatment URGENTLY. Best of luck darlxxx

  • Thank you so much, my replies are a bit long, I did not know you can all see them, so will try not to repeat myself so much. I was told by respiratory technician I need to be seen urgently on 2nd May but that got me nowhere either. My GP thinks I should have IV drugs as had re action to VFend? This not knowing is worst & fingers crossed. Not feeling too bad today, so going to shops . Sandy x

  • Have you been to

  • No I have'nt but I will look. It's so nice to have people understanding how I feel. My GP altho very nice, he has Dutch accent & softly spoken, so I have trouble hearing him at times. He never ask if I wanted to change consultant? I was ok with him my consultant til these past few months. I no longer live in London & bought my now address when my partner was Ill with cancer & only moved in after he died, so only know people to chat to in if we meet in car park, very lonely As my daughter lives in London, but I drive so pick her up to come stay & help when her little one not in school. Sorry, going on a bit, I will check out yr link. Many thanks Sandy

  • Hey! Don't be worried about "going on". This is the right place for it. A lot of folks here treat it as a drop in centre. 3 am is a lonely place and it often finds people having a chat. There a a lot of very welcoming and understanding people here.

  • Thank I must admit I don,t go to bed til tired as one time 12 yrs ago, woke up in hospital & no memory of how I got there, but had been in coma for a month with severe pneumonia & Guillain-Barré syndrome & paralysed from neck down. Long story! but I survived & apart from not as fit as was before that & drugs given to save my life, causing deafness, until diagnosed with Bronchiectasis 4 yrs later, I have done well!! So now it looks like a 'final destination' scenario, except not so gory I hope! My problems are minor compared to yours & I,m sure many others on here & I should try to think positive & hope I will get referred to Prof Wilson as then at least I will know for sure what is happening.. Meanwhile thank you for yr messages & I checked out that site, altho it tells me I may go thru a lot of different stages as things progress, my Echogram was ok 3 months ago, so maybe got longer than I thought, but still does not excuse my consultant not seeing me before he went on holiday & explaining stuff & having to try & be cheerful with my family, when I see them. I watched my partner die of liver cancer (49 yrs old) & drove him back & forth to Kings College several times in that 12 months as he was patient of Professor Heaton, who I add, was easier to get appointment with than my consultant & answered my e.mail his self, when I wanted answers after my partner died. It's almost like my consultant avoiding me because he can,t explain about 13 month gap in appts & could this diagnosis have been avoided if not mis diagnosed in Feb last year? Sorry, end of rant & thank you for reading & replies. :)

  • Hi Sand what a nightmare and worrying time for you.I really hope its a referral to the Brompton ,they are just brilliant there and right up on the latest for lungs.My daughter is there now and she cant sing their praises high enough. :) If he hasnt referred you and just asking for advice,why dont you ask for a referral there yourself thats what my daughter did and her first appt was through within a couple of weeks,tests were organised to all be done on the same day.Goodluck come back and let us know how your doing eh? They are a great bunch here,wishing you a warm welcome. :) Janexx

  • Thank you Jane, it's been nice to offload a lot of my worries on here, although I do feel sad that there are lovely people so much worse than myself. I am at least still able to drive & do stuff myself as have no choice now on my own & I don,t like bothering people here & bit of a recluse. I have been so down these past few months & should be grateful for what I have achieved & not what I can,t. I will consider what you said about referral & I wish yr daughter well xx

  • You have had some good advice here. I wonder if your consultant is a general respiratory consultant rather than a bronchiectasis specialist. I have had bronch for 60+ years and for much of that time I just ogot on with life and saw consultants as and when I was called in. 8 years ago I began to have more problems and the local hospital consultants didn't seem to be listening to me. I complained to my GP and she said perhaps it was time for me to see someone who was a bronch specialist. I never knew there was such a thing!

    The new consultant has been great for 2-3 yrs but since last August I haven't seen her, just other members of her team and I am frustrated as I felt she had a definite plan in her head and now its all stopped.

    My local heart consultant suggested that I should have 'shared care' where the specialist consultant (hospital at a distance) and my local consultants, who look after me when I need hospital care, work together. Sounds good.

    Perhaps the Brompton will do this with you and your current consultant.

  • Hi, thank you for yr advice. I was diagnosed with Bronchy when admitted for other health issue. Severe allergic re action to a statin after a few days taking them. My consultant then, has since retired, but he was very good & always saw him every 3 months. His replacement is not a Bronchy specialist he is very nice & helpful until now, but I believe the Junior Drs diagnosis when I saw her 18 months ago is reason I have got progressively worse, as I was,nt given a effective antibiotic then & had to get broad spectrum one from my GP & was more sick than when I,ve been hospitalised previously & never fully recovered from that. I am hoping my consultant has referred me to Prof Wilson, because I think he was unsure what to do next after my reaction to Voricanazole (V.Fend) If I had not contacted PALS I still would not know he had written to Prof Wilson & they even gave me Prof Wilsons secretary,s number, so I could ring myself this wk to check they received the letter or e.mail? I have,nt because of hearing probs, I think PALS overlooked this? I will see if I get any news from my consultant after his holiday next wk, but won,t hold my breath (excuse the pun). No doubt I will have to contact PALS again regarding this. Any mail I get after my appointments are usually 3/4 wks later (I found out from a nurse at the clinic that he has no secretary & using others last couple months)? As this disease can be fatal & travels to other organs incl brain if not treated, I am stressed about lack of care. What you said about him being General respiratory consultant explains this! Thank you I,m learning a lot on here & grateful for the support. Sandy x

  • Hi Happyfeet

    We meet again and both still having problems with our clinic. Apparently there is a new consultant there now. Unfortunately I have completely lost faith in them. My last visit I saw a child registrar. Talking to her about bronchiectasis was like trying to explain nuclear physics to a 2 year old. She told me that I could not possibly have suddenly become allergic to inhaled colistin, completely disregarding the fact that I have been nebulising these drugs for 30 years and know very well how they affect me. There was no follow up letter from the clinic. I am interested in this idea of shared care. As you know the hospital closest to us does not have bronchiectasis expertise and our lady consultant told me two years ago that living where we do, we could not be admitted to the QE if we needed IV. Lovely. What a deterioration in care since the 1990s when we had our own ward. I am back to a choice of two oral antibiotics if I get sick and that's it. Worse than my treatment in the 1960s. If you find out about the shared care please let me know as I would like to follow it up. many thanks

  • Having had bronch for so long and been under consultant care all my life I find it hard to fit into the modern ways. It is now really a requirement that you deal directly with your consultant, phoning their secretary etc! And you have to follow up yourself with your GP when you have tests done. Back in the day my GP phoned me to let me know results and would tackle consultants on my behalf. Now you have to fight your own corner.

    Your GP should be helping you do get to the bottom of this.

    Also, have you got a friend who could be your 'listening ear' when you are speaking to the consultant? Someone you can trust?

  • What a nightmare Sandy. My heart goes out to you. I think if I were you I would walk in to The R Brompton next time I'm in London & see if you can get some advice/ help.

    My gps suspected I had Aspergilosis and/or bronchiectasis (very relieved I haven't, phew). I feel for you, I read all the information on aspergillosis too and it's scary.

    My GPs had to read up on it when 3 sputum tests for it came back positive. further skin prick, CT scan and blood test showed I haven't got it.

    In the country I would be wearing scarves to pull up at the slightest hint of spores floating about (I do anyway as allergic to other moulds), a nice silk one :)

    My GPs told me that if I have asper. then it would be managed with antifungals. I cannot understand why your GP has left it to stew without offering you another anti fungal drug.

    There are a couple of people on here who have experience of asper and/or bronch so I hope they will be along soon. In the meantime please, PLEASE ring the medical people on the BLF helpline 03000 030 555 9am - 5pm I think. They will guide you on anything lung related - not just copd. All the best to you. P

    ps I am very sorry for the loss of you partner........ & where is Pembury btw?

  • Yes yr right, l was diagnosed with Bronchy 8 ys ago, although had Asthma for longer. I think the change over to the new hosp @ Pembury has caused a lot of pressure for my consultant & others, they call it teething probs, but it over 3 yrs now. I never really new much about Bronchy until past couple of years but seemed to get more strength from somewhere while caring for my partner thru his cancer for that 12 months & when he was in Kings for 7 wks Xmas 2011, after driving 35 miles to get there & walking those long corridors to his ward, I could'nt speak for first few minutes til I got my breath back. Missing 2 appts that year 2012 because his appts came first. So since he died (Sept 2011) & got appt in following Feb when mis diagnosed! I have to do everything alone as my daughter who does not drive, lives in London but does come here whenever possible for a few days, I pick her up, but she has a 7 yr old son. I don,t know anyone here who I know well enough to ask to come with me, plus I,ve not had appt with my consultant for over 3 months now. So have to wait til next wk before I contact PALS again & I will keep pushing as I feel I have been unfairly treated so far. I think my GP just feels sorry for me after all probs past 3 yrs, & my consultant not easy to contact.

    Talking to PALS has been my main help & I will be pestering them again next wk if heard nothing from my consultant after his break! I am so fearing this Inv Aspergullosis & not knowing what can happen next to me because of it! People's response on here is making me feel less alone now.

    Many thanks

    Sandy x

  • It's called Tunbridge Wells new hospital @ Pembury, in Kent about 5 miles from me. Mould spores from rotting hay & plant life would be rife here after all the floods of winter & I do not go out much these days, so just unlucky I guess. I thought the move from London to here would be healthier for me! These spores are always in the air but because my lungs have been worse the past 2 yrs & a new cavity appearing, is reason for spores to invade I suppose. I get annoyed because people smoking outside shops makes me cough so have to cover nose when walking past, not knowing these invisible spores are a danger too. Sandy x

  • I got bit wrong in a reply earlier, I said my partner was in Kings over Xmas 2011 & then added he died in Sep 2011? He died in Sept 2012 after a yr of Cholangiocarcanoma. I know more about that than my own health issues. I moved here a year after I bought it, as stayed with my partner to care for him & moved in here Oct 2012 after funeral & clearing his house. I had work done in here in the months leading up to my partners death & some decorators only finished the day before I moved in & they had left doors to bedrooms open & thick dust from rubbing down new plaster & paintwork was everywhere & breathing it in must be what made me so breathless & got chest infections from then on. I seem to have been worse since moving here & got very depressed & in a dark place & I was hoping to get myself more positive when I got this last diagnosis?? Talking to you people is making me feel less alone & trying to be positive. Thank you x

  • Hi Sandy

    Firstly please accept my condolences on the passing of your partner- you have had quite a lot to deal with.

    Like Stillstanding you will also find me banging on about the lack of funding and services for non cf bronchiectatics and find the cf consultants I have discussed this with agree we are the orphans of the respiratory world, which is in itself not very high on the 'sexy conditions' table. Also like some others on here I have also had bronchiectasis since babyhood and agree with so many of the above comments.

    If it were me I would definitely not wait until the consultant returns. His secretary will know fine well if you have been referred to the consultant at the Brompton. I would also not just be hoping for a referral but would be asking for a referral - a second opinion.

    Agree totally with happyfeet you really need to make sure the consultant you see is a respiratory consultant with a special interest in cf/bronchiectasis.

    Hope you get sorted out soon. You really do have to be your own advocate.

    Good luck

    love cx

  • Hi, and thank you for your message to me. I did not realise Bronchiectasis was not treated like other lung disease (why is that)? I have had it for 8 yrs,maybe more but that's when diagnosed & since my breathing has been getting worse, I read up more on it as previously it was my partner that used a PC & I did not use his. He was the one that read into it when I was ill & in hospital 8 yrs ago, but he never told me much about it! I had nr death experience 12 yrs ago & thought it can,t be worse than that, obviously that contributed to lung damage leading up to Bronchi diagnosis. My previous consultant retired 4 yrs ago & he was very caring & saw me every 3 months & did more breathing tests than my now younger consultant. I read within the last yr that it has a mortality rate & this worried me as it seemed average was 10 yrs? Obviously not the case in everyone as you & some other people have had it since very young, so that is one good thing I,ve learned from here. The only treatment I have is Symbicort inhaler & use it more often recently. I have broad spectrum antibiotics here for when I feel I have chest infection, so can take them to prevent it getting worse until I see a Dr. Strangely, I have not had real chest infection for nearly a yr? So my breathing problems being so bad in the past 18 months is confusing. That is until I saw copy letter end of May with Invasive Aspergillosis diagnosis ? I was told a few wks ago that my consultant (who must be general) has no secretary right now & using others, that is why letters regarding visit to consultant in April took over 3 wks to arrive. I have done my best to try to see him in past 3 months as so frightened of diagnosis & knowing it's really incurable, may go away with treatment, but will return & mortality rate 95/100%. It's not knowing how fast it progresses & what signs to go by that is worrying me. It apparently gets into soft tissue, like nails & eyes & my eyes have been ok I only need 1.5 magnifying for reading & I.pad I use now, but recently seem to be getting worse & whites r not as white as usual? I have booked eye test for next wk because that can identify this Inv Asp as well I think? I still hope my diagnosis is wrong, but waiting all this time has had a bad affect on me & if my consultant has referred me I trust I will get appt to see Prof Wilson at the Brompton soon? If it's just advice he has ask for, who knows when I will be told? Anyway, I,m sorry for going on again, it's just so comforting to get opinions & advice from people with more experience & knowledge & not bored by me talking about it, like my daughter seems to be, or she does,nt want to know, I can understand that! I,m appreciating all advice I can get right now from people like yourself even tho u are so ill as well & for longer. Many thanks Sandy x

  • Dear Sandy, please stop worrying: I know it is easier said than done and it can be very frightening reading and hearing all the prognoses without being able to discuss them. As you have read on the internet, the pharmacist and others have said, your diagnosis of Invasive Asp means that if left untreated yes mortality rate is about 100%, unfortunately. However, if you get treated with antifungals survival will significantly improve from that figure: your immune system is likely to keep further invasion at bay - remember you are still young and your immune system will hopefully be able to handle it once it got the help from the antifungals.

    With regards to progression of diseases it is a very individual thing for each person, so for both bronch and the invasive asp nobody will be able to predict how it will develop with you in the future: it depends on "your body constitution", but there are many things you can do to support your body:

    *take medication as prescribed (if you have ill effects see dr straight away),

    *have flu and pneumonia vaccinations

    * for bronch in particular do exercises/coughing/huffing/use devices to get mucous out of your lungs,

    *avoid respiratory infections (wash hands, stay away from sick people, use VICK'S FIRST DEFENSE, ),

    *build strong immune system (get sleep, eat healthy, maybe take supplements like Vit D, C etc and don't forget that major part of immune system in gut so maybe take good probiotic especially when taking antibiotics)

    * some studies have suggested eating 5 unpeeled apples per week improves lung health

    * stay active/exercise.

    So please don't worry about the longer term right now: you need to urgently look after yourself now and get to see a specialist. Then start treatment and you should be fine - but remember lung damage is often irreversible so get onto it now. I wish you all the best and feel free to ask us anything/share your concerns. I hope you will get to see a specialist next week. Lots of hugs xxx

  • Agree with jenss post.

    Please allow me to clarify what I have posted. If you see the right consultant you will be treated well. When I stated bronch is the orphan of the resp world I am talking about funding - it is political. There is funding eg and quite rightly for CF and copd specialist nurses and matrons +++ but there are now roughly 4/5 specialist non cf bronch nurses in the UK, both hospital based and in the community.

    That said there are so many non cf bronchiectatics who have had the condition since babyhood or childhood. Personally I have had it for 66 years. As j says good management is the key - doing regular physio etc. which when you get a good cf/bronchiectasis consultant he will refer you to all the experts and do any tests he/she feels necessary.

    I feel you are getting ahead of yourself with worry and this will only be eased once you have seen a proactive specialist consultant and know exactly what you are dealing with.

    You might want to see your GP and ask if there is a way he can refer you to a cf/bronch consultant at the Brompton or 'phone Prof Wilson's secretary to see if they have received a request, or I think you have already said you could go private and so may be able to self refer - you need to ask.

    Try if you can to settle your mind this weekend and start to sort it out next week.

    Please let us know how you get on.

    love cx

  • Thank you to both of you for yr excellent advice & although physical exercise is hard work, my balance is affected by deafness, even walking I get so out of breath & recently getting lot of hip & joint pain? Everything else I will def take note & do the best I can. Feeling more positive already thanks to u all. Will be add any progress from my consultant (if & when it happens) & get my daughter to ring Prof Wilsons Sec on mon for me, as she & boys coming to stay for a few day. I wish u all a good wkend, Sandy xx

  • Good news that your daughter will be staying with you and can help you. I feel for you and wish you all the best- let us know how it goes... we are always here for you. Take care darlxx

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