Morning all. Just got granddaughter packed off for the day, chickens let out, rabbits fed and watered, cat fed, dog wondering what's going on. I'm off for bronchoscopy shortly. Still no answer from Brompton re slides they were sent beginning of June. Actually not sure chest consultant actually sent them. Bristol say not sarcoid nodules all over lungs, Gloucester says it IS sarcoid. No treatment as yet because I need bronchoscopy as chap thinks sarcoid may be in the airways as well as the lungs. Not happy with him at the moment as in June he decided I needed less thyroxine. I have been feeling g very ill, very hypo so upped medication and coming round again. Not had UC check up since 1999 so chap sending extra letter to gastro chap to check colon when I go for hiatus hernia appointment. Colonoscopy and gastroscopy in the pipeline then to see if they can find out why I keep getting VERY anaemic. Ocean liner may be turning. I am very grateful for what they are trying to do but it is frustrating that I have been ill for so long, had lung wedge resection op on 9th April and still no medication. grrr... Have super day. :-) :-) Alison

56 Replies

  • Best of luck.

  • Thank you knitter. Home now and feeling tired but OK.

  • Hope all goes well! M

  • Thank you Mocarey. All went well apart from the anaesthtic up the nose which made my eyes water! Alison

  • Hope it all goes well for you and you start to feel better soon. Take good care. TAD xx

  • Thank you TAD. Nurses were lovely. They said they would make sure I get my tea earlier when I have the gastroscopy and colonoscopy. (They forgot mine). :-) :-) Alison

  • You are very brave, I hope it all goes well for you today.

    polly xx

  • Thank you pollyjj. I'm not sure about brave. We were all trained not to make a fuss so we can tend to be overlooked or not listened to. Just look at all the people on here having probs with docs. Hope you are OK today. :-) Alison

  • Hope all goes well xx

  • Hi Chell, It was fine thank you. My consultant was there. Most surprising. He didn't even speak to me. The young doc was lovely. He told me my bloke was going to be there. I think he was directing which parts he wanted biopsied. How are you? :-) :-) Alison

  • At least it is done now. Do you know when you get the results? I'm okay just resting my knee xx

  • I am due to see him again in about 6 weeks or so. I do wonder why he didn't speak to me when i was getting the lines in for the bronchoscopy. I would have had to say hello. The young doctor was very pleasant. No running around or pole vaulting until your knee is much better. :-) Alison

  • Not too long to wait. Strange he didn't say anything, oh well at least the other doctor was nice. I will behave myself :)

  • I think consultants get preoccupied. The same happened to me. They see so many people.

  • Yeah, you are probably right annieseed but I know he knew me. Oooo er :-) :-) Alison

  • I hope all goes well alison. x

  • Thank you Toci, lots of rushing around this morning ensured I coughed quite a lot. Honestly I haven't coughed for a couple of days. Hoe you are well. :-) :-) Alison

  • Best of luck. As someone with Sarcoidosis I was diagnosed through the bronchoscopy (they couldn't biopsy me as they didn't think my lungs woudl hold up under general anaesthetic). As procedures go, its not bad at all really - better than a lung function test (in my eyes anyway!).

    I do hope they can make a diagnosis.

    Marie x

  • Thank you very much Marie, there do not seem to be many of us on here. How long should a diagnosis take, do you think? I have been really unwell for 21/2 years and had to give up work. I thought the lung resection would be definitive but there you go. The bronchoscopy was certainly so much easier than said operation. They also did a wash of the lungs apparently. I think that might be looking for bacterial involvement. If you don't mind my asking, is your treatment steroids? My bloke says that will be all that is on offer when investigations complete. Take care, Alison :-) :-)

  • Hi Alison

    They took a wash of my lungs too and found infection. Was given suitable antibiotics which finally killed the infection I had had for months. I probably lived with Sarc for about 4 years before I went to the doctor (3 years ago now). I had given up smoking and had felt shorter and shorter of breath and then got this cough. I tried telling myself that it was giving up smoking and that my lungs would readjust (I also had these weird marks on my skin). I was also losing weight. I was seen by a consultant in the Feb, had my bronchoscopy a week or so later and then some more tests (for TB). Diagnosis was pretty swift around 6 weeks?

    My treatment was steroids and immunosuppressants. I was on steroids for 20 months until I came off them. I am now just on the immunosuppressants (azathioprine), symbicort and azithromycin (I also have a touch of bronchiectasis). The immunosuppressants are in the greater scheme of things a bit better for you than steroids apparently. I have my ACE levels tested every so often but they seem happy that my sarcoid seems to have burned itself out (it does happen apparently). But I always panic if i get what I think is 'the cough'...

    Good luck and any more questions just ask or PM me.

    Marie x

    PS - I didn't like to say but the sedative they gave me didn't work - was completely awake for whole thing - very interesting watching your lungs on the telly!

  • Yes, I watched my stomach on telly and saw the v large hiatus hernia. It was very interesting. If i have sarcoid then it is most likely I have had it since 1991/2 when I, apparently, had ME. Divorcing nasty father of children. Had the leg blotches and many other similarities to sarc. Another theory is that I had it in 1986 when diagnosed with viral meningitis when 6 weeks pregnant with my youngest. When she was 6 months old I was found to be hypo in the thyroid department. At times of severe stress I become veryill. In 1999, I had severe ulcerative colitis. These things, if you talk to people with quite up-to-date knowledge of sarc could well provide evidence that I have had it for donkeys years and it is only now that the lungs have had a real battering that they are taking my feeling always unwell seriously. I hope you are lucky and it has burnt itself out. Unfortunately, some sarcs have many bouts of it, leaving damage wherever it has been. I have asked for appointment with eye consultant as sight has deteriorated each year for last 3 years and eyes re sometimes red and sore - hoping it is an allergic reaction. My bloke said he will not give me immunosuppressants, only steroids. Thank you so much for your reply. Interesting isn't it? :-) :-) Alison

  • I blame mine starting in the summer of 2006, had all sorts of problems and then had terrible spate of verruccas on my feet. Dozens of them! It may have burnt itself out but it now looks like I will need a lung transplant so the damage is done.

    I too had major issues with my eyes, mainly sore, red and gunky. Like I had permanent conjunctivitis. I saw an opthamologist (sp?) and she said that there was no damage but had 'dry eye' syndrome. This seems to have stopped itself now so I think it too was attributable to the Sarc. It is interesting - we must sound a bit weird!

    I do find it odd that whilst they think it has burnt out why I am still on immunosuppressants? I might ask that on my next visit to the consultant. I wonder why they won't consider immunosuppressants for you - might be your medical history. You need to have your bloods done every month with them as they can affect liver. kidneys and your cell count.

    Marie x

  • Hi Marie, in my opinion my consultant does not really know enough. I asked about immunosuppressants and he said they are far too toxic and you have to be careful not to catch illnesses. I pointed out that that was the same for steroids and I struggled with coming off them when i had UC. He said they would taper them quite quickly and I would not be starting off intravenousy as before. (2 weeks very high dose intravenous, taking a year to come off them). He also said I would be on a maintenance steroid dose. My view is that steroids are used because they give you a false sense of being pumped up and 'feeling' better without actually being better. Also, now cynical me knows they are the cheapest option! I am still thinking of asking for Royal Brompton referral but he has at least referred me for hiatus hernia, reflux, bowel and, hopefully eye consultant. The not-so-cynical me thinks you may be right that immunosuppressants might not be good because of the history BUT he didn't say that. Permanent conjunctivitis is a good description of how the eyes feel. Take care :-) :-) Alison

  • Immunosuppressants are toxic, and you do have to be very careful. I still work full time, travel and socialise. I think part of this is because I try and eat as healthily as possible and exercise. I started on steroids at 40mg a day for around 6 months, they then tapered them to 20mg and I then spent 6 months tapering down with a view to coming off them. I took my last steroid on 31 December 2012. Its tricky, I wonder if immunosuppressants have been chosen for me because I am transplant candidate? Osteoporosis is a big risk with steroids. I would prefer to be on neither but I dont' think its an option. If you are concerned get a referral. I ahve never been to Brompton but I have heard very good things. Interestingly enough I had terrible reflux pre-diagnosis. Its now gone. I do hope you get some answers, and that maintenace dose steroids aren't too high.

    Marie x

  • Thank you Marie, I try and eat healthily but exercise is so tricky because of breathlessness and general exhaustion. You could be right about the immunosuppressants and transplant possibility. It is just that I know how had it is to cut them down and I am concerned about osteoporosis. I wonder how the reflux managed to stop in your case - amazing! I too hope I don't have a huge maintenance dose. Thank you for your support. Hope you can continue to enjoy your active life. :-) :-) Alison

  • Hope all goes well


  • Thank you jojam. It was fine really apart from the throat and nose spray. Hope you are feeling OK today. :-) Alison

  • Glad it went ok, I'm feeling good today thanks.:-)


  • I had a bronchoscopy 3 weeks ago and was dreading it. In fact I didn't remember it even as was sedated and was admitted for 9 days for intravenous antibiotics. I can now breathe without struggling for the first time in over a year. I have a diagnosis ( bronchiectasis) and its much better to know what you are dealing with. All good wishes to you. Holly

  • Wow, what a good result in the end. I'm sure the 9 days was awful but it seems to have worked for you. Thank you for your good wishes. Alison :-) :-)

  • I wish you well Alison


  • Thank you very much king. I am just tired with a sore throat now. Choe's mum should be bringing her back a bit later so I am enjoying a peaceful cuppa for now. :-) :-) Alison

  • I've just seen this Alison, glad it went ok today. Enjoy your peaceful cuppa :)

    BC x

  • Thank you Blakey. Cuppa was lovely. Just hoping Chloe isn't brought back too late! :-) :-) Alison

  • I would like to hear more about this lung wash out. Is it to wash all the gunge out? Maybe a stupid question but I would like to know more. Thanks.

  • Hi annieseed, as far as I understand the process, they wash through the lungs and see if they can find bacteria. If so, they know what it is so they accurately prescribe an antibiotic. Could be interesting! I,ll let you know what, if anything, they find. :-) :-) Alison

  • I'd be interested, appyalison

  • Hope it all gets sorted out soon Alison. You sound like you have been through a rough time so hoping things get better. Chin up.

    Bev x

  • Thank you Bev, like many of us, I'm fine most of the time but there are times .... Bringing up Chloe keeps me very busy and stops me dwelling too much. It can be hard at times but she has a lovely smile and kind nature. Contact with her mum is very sporadic but I do my best to encourage their relationship. Keep breathing Bev, :-) :-) Alison

  • Oh dear, so much to cope are very brave. do hope you feel better soon. x

  • Thank you, Julie. Not sure about brave - more like too stubborn to give in. Having an eight year old relying on me makes it easier to blot out the niggles and concentrate on important issues such as violin practice and eating vegetables! Thank you for the good wishes. Alison :-) :-)

  • you have so much to cope with, I dont know how you do it 'appy. Take care, I hope they come up with the right results for you xxxx

  • Thank you peeg. It is about time someone listened isn't it? Many of us are in the same boat sadly. You are one of the posters who have helped me enormously over the past 3 months to feel I can do it. I was completely lost before I found everyone here so thank you very much.

  • you take care. I felt the same when I joined too, floundering in the dark & afraid my life was over :) (& then I found people much worse than me living life to the full) xxxx

  • Had a couple of bronchscophys worried myself sick days beforehand but no big deal,best of luck with all

  • Hi pechinawa, I found it was no problem, just the spray up the nose made my eyes water. As usual when the nurse did the pulse etc she said it was fast and I needn't be nervous. So, as usual, I told her I'm nt nervous, I always have a fast pulse. Every doctor and nurse in the world thinks I am nervous in their presence - bit frustrating when you are not! Been waiting so long to get sorted I am more than happy to be subjected to all sorts of tests. Thank you for your good wishes. Good luck to you too. :-) :-) Alison

  • Just like you my pulse was fast on admittance for the bronchoscopy ( 144) . The nurse said's just nerves .. and I said. no.. no it isn't . My pulse has been fast for months now, along with all my other symptoms. This is why I am here today, to find out what's going on............. It's so frustrating! I have found that Peeg and many others on this wonderful website so much more knowledgeable about the different lung conditions. I am much more informed now.Thank you to every one. x

  • oh goodness, I cant take any credit. A few months ago I knew nothing,my knowledge is still miniscule compared to others.

    Learning from good people here & passing it on.

    I'm desperate to stay well & not get worse.

    But thank you, sharing and supporting is what it's all about. You stay well too xxxx

  • Hi hollyhockhattie, I think the fast pulse may come from raised pulmonary artery pressure, which is another thing I have. That gave them the clue there was something going on in the lungs. 15 months of constant coughing , antibiotics and steroids might have been a bigger clue! Hey ho. I think the pulmonary artery pressure rises when scarring reduces the efficiency of the lungs. Could easily be wrong, of course. Keep well and breath easy, Alison :-) :-)

  • Hi appyalison. I have to say that I feel so much more able to cope mentally having come across you and peeg and all the kind posters on this site. It took me two years of becoming unwell with an unexplained shortness of breath, getting worse over time, constant visits to the surgery , being ignored and then an emergency admission from being very very poorly. I actually felt suicidal yesterday because I booked a post admission follow up at the GP because I've heard nothing from the practice and the realisation that they just do not care about you really upset me. This doctor had never seen me before but changed all the back up medications to what he thought I should be on. Stopped the omeprazole and I have a hiatus hernia so need it. Stopped my nebulizers. Talked down to me by telling me what the symptoms of a chest infection are. Upped my dose of prednisalone , told me that the hospital were wasting time and money sending me to The RB for genetic test because clearly I'm too old to have a link with cystic fibrosis. He then had the cheek to ask if I had attended the practice in the last two years to have my symptoms investigated. Did he check any of my vitals? No of course not. He just handed me the prescription and waited for me to leave. I was shocked. I have a hospital follow up in a couple of weeks and will feel in much safer hands.

    I am so glad that you are all here and understand. :) Sometimes I can challenge the professionals but yesterday I felt like I didn't even matter that I couldn't respond.


  • Hi Holly, I am so sorry you have been subjected to such an insensitive fool. Sadly this happens to many of us a lot of the time but it is WRONG. You need to tell the consultant when you see him/her what the gp has done. How dare he change what the hospital has set up for you. They are the ones who treated you. Your surgery has done nothing to look after you. I don't know but it sounds to me as though you had something much more than a chest infection. Most chest infections are not treated in hospital for 9 days. Most are treated at home with tablets. The arrogance is staggering isn't it? My consultant has had his eyes nearly popping out at what my gp has not done a couple of times. I hope the hospital person ticks off the gp. Some others on here have bronchiectasis so they will be able to give you the benefit of their experience. GPS do not know as much as they think. It is not your fault you felt unable to challenge the doc - it is such a shock to be treated like that. You are worrying about what the medication changes will do to your health so it is too difficult to think on your feet. I take an A4 writing pad with me to the hospital. I get further with the consultant and go if I have my son or older daughter with me. There s an assumption that older people are simple and expensive so they put you off. If i had had Roper treatment 21/2 years ago I think I would still be working. False economy to keep fobbing us off. We cost more in the long run. Please keep in touch to let me know how you are getting on. I will only worry about you otherwise. :-) :-) :-) Alison

  • Hope all went well for you had one two years ago like the others I worried about it before hand but I need not have it all was fine. I am having a colonoscopy tomorrow this getting old is nothing to cheer about is it?

  • Hi nanaber, Thank you for your good wishes. Good luck to you for tomorrow. I'll be thinking of you. I had a couple of bronchoscopies in 1999. They sound worse than they are. You will be fine I'm sure. Let us know how it goes. Love Alison

  • Alison "All ways Look on the Bright Side of Life"

  • I nearly always do but there are times ... :-) Alison

  • Alison,there's lots of times but that line always makes "chi chuckle "

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