Bronchiectasis with possible Invasive Aspergillosis?

[Sand64]

It's been a while since my last post & frankly things are no better. After several months of PALS, my hospital Liason team contacting my consultant because I could,nt, after he diagnosed me with Invasive Aspergillosis in April. I did,nt find out until May myself after a delayed letter to my GP (I got sent copy off) although he had given me VFend 6 wks prescription at my last appt, but had reaction to them after 5 days & stopped taking them & returned them to hosp. No appointment with my consultant since then even tho my GP has contacted his office & so did respiratory nurse who tested my breathing in May & said I needed to see consultant urgently! Long boring story I have told before & PALs did tell me in Aug that my consultant was on leave but had written to Prof Wilson at Royal Brompton about me? Several weeks later I received an appointment to see Prof Wilson but not til Nov 24, I presume because my consultant does not know enough about InV Aspergillosis (I have Bronchiectasis too 8 yrs now). I have been reading other people's comments on here & it seems they get meds for Bronchiectasis? I never have? I just have Symbicort for Asthma & some had physio show me breathing techniques to help cough. Plus on my own request I have some Amoxocilin on standby incase I feel I am getting chest infection. I cough up mucus & blood occasionally , my breathing is so bad I,m frightened to go out & I do go out to go to bank or food shop when I have to, but then I keep falling asleep sitting upright on sofa & can,t stop myself & wake gasping for breath, scary. I,m alone now as partner died 2 yrs ago of cancer, l moved into my apartment, I had previously bought when my partner was sick & hardly know anyone & only ones I do know are older & not on my wavelength, altho they are nice people. I can,t understand why I have no meds like others seem to have? My consultant did say back in April that he could arrange oxygen but never did! I know Inv Aspergillosis is life ending as I read up on it myself, but until I see Prof Wilson at Royal Brompton next month, I don,t know what will happen to me or when & frankly I have given up & eat unhealthy sweet stuff & cereal as cannot be bothered to cook just for me. I do go out every couple wks with my daughter for a meal. I drive to her because she lives in London 25 miles from me, or she comes to stay sometimes. I don,t even know if I,m I'll or not at the minute (coughing blood sometimes & breathless constantly) not sure if infection as feel same all the time now. I don,t sleep well, afraid to go to bed till early hrs because of breathing, very depressed & not looking forward to trip to see Prof Wilson, as will drive to my daughters to pick her up & then get train to London Bridge & tube to South Kensington, as easier than driving into Chelsea, but I have low immune system & going by tube is unhealthy for fit people, so may take mask to wear to help stop catching germs floating about. One more thing, I woke up a few days ago & my tongue was swollen & glands in my neck & could barely swallow as tongue swollen right down throat, I had not bitten it & I took my usual antihistamin & it slowly went down after a few hrs, has anyone else had this happen? Anyway that's my rant over again, wishing you all well.

Thanks for any comments that may help me relax a bit!

Sandy x

[Louisiana]

My dear Sandy, my heart goes out to you. You make me feel ashamed for feeling sorry for myself, which I do on occasion, especially when I am in lots of pain or can't breathe well....but I certainly haven't suffered the way you are suffering. I honestly don't know what to say other than I think you should demand immediate attention!!! - just because your professor is on holiday doesn't mean you shouldn't get help from others. Of course you are frightened and lonely - I know that feeling at night. Have you ever sat down with your GP and asked him the questions you have asked in this post? Like, why aren't you getting medication, for example. My dear, I so wish I could give you a big hug, but I am sending you one over the airwaves. One thought crossed my mind is if you feel utterly ghastly dial 999 and they have to help you out when you get to A&E....a friend of mine did that after months of not getting the help she needed at her surgery (it was for a different illness) - just a thought????? I will be watching for your posts and hope to read that you have had lots of help and support.

[Sand64 in reply to Louisiana]

Thank you Louisiana , for your kind words, I felt selfish & feeling sorry for myself after I sent it. I forgot to add I am deaf as well, due to vancomycin given to Me 12 yrs ago for a month in ICU, saved my life but left me with damaged hearing. So feel more alone as knocks yr confidence especially when out alone, no one to watch out, so occasionally walk out in front of bike or someone in wheelchair, not safe, but could be worse. I,m just having some bad days right now & my GP does,nt know enough about lung disease to help I suppose. My hospital AGM of respiratory medicine, wrote to me via PALS in Sept, with a lot of fobbing off & adding that ( as hospital is newly opened 3 yrs ago!) that they are now going to employ another respiratory consultant because of demand & apologised for delayed appointments owing to my consultants secretary being on leave,!! I waited from Feb 2013 to March 2014, secretary has a good job then? Altho I think they were talking about this year? The fact I added in one of my e.mails to PALS that the fact I was mis diagnosed by a junior registrar in Feb 2013 is probably the reason I have further damage & problems now? So maybe that's why I have the privilege of being referred to Prof Wilson? Hope I can last that long!b Don,t feel ashamed for feeling sorry for yourself as all our illnesses affect us differently & there,s always someone worse than us, but we have,nt experienced that yet & watching my partner die over 12 months (he was 49) acted 18 & loved his self until then) makes me feel like I,m wrong getting upset over my problems, but I was the only one who cared for him with no help & I felt healthier then, but since moving here I have been constantly Unwell? Anyway thanks again & much appreciated & I will go see my GP next wk & moan at him, have,nt been for a while. Take care

Sandy x

[Louisiana in reply to Sand64]

Nice to hear back from you Sandy. I know how alone it can feel to be hard of hearing. My darling Mum was deaf in one ear and it used to drive her crazy at times....and like you, would bump into things, and get confused when in a crowd, etc. and deafness is a "hidden" affliction, whereby others can't see it, so there is little patience and understanding from them. You must have felt utterly bereft when your husband died. Watching someone you love suffer is one of the worst things in the world. You say you felt healthier when you were taking care of your husband. That's understandable in a way, as you were concentrating entirely on him I expect, but now, you are suddenly alone, and your body is much more alert to your ailments and you have no one at home to talk to about anything. By the way, mentioning 999, I watched 24 hours in A&E on the television the other day, and one of the patients had lost his wife after 49 years of marriage and he was just so lonely and not feeling well, etc., etc...what impressed me was they arranged for someone to go and talk to him and someone was going to visit him at home and see what help he could have. Soooooo...there is hope out there. IF you did try the "999 plan", then you could tell them EXACTLY how you feel and they would get someone to talk to you...just a thought. I am glad you are going to your doctor and do PLEASE write a list of questions down. Firstly, to be fair to him, if you don't tell him everything and explain IN DETAIL he won't know how you are feeling so wouldn't have a clue how to get help for you, and secondly, you will get home and regret you forgot something Of course, I am saying this, but you might not be forgetful like me (I do have age to blame) Oops, I hope my posts aren't too long!!! - Take care, spend the weekend making your list of questions (that's an order) Rave all you want when you want.....that's one of the reasons this site is in existence Sending lots of good wishes

[jenss]

Dear Sandy, I am sorry to hear you are feeling so unwell. I think you need to see your GP and tell him how you are feeling (maybe take a printout of what you have written?). Louisiana is right you should not be left alone without treatment like this, so maybe dialing 999 and getting help from A&E is a way to get you some help now. Make sure you have a good list of questions and comments written out for when you see the Prof Wilson, but I think you need to also get some treatment NOW. Good luck and let us know how you go. Hugs a love to youxxx

[Sand64 in reply to jenss]

Thank you Jenss, I will go see GP this wk as getting worried now & I keep a diary of all the problems I have experienced over the past 2 yrs with my consultants clinic at new hospital, just incase, so my family who live 25 miles away, have it all in writing & can take action if need be. Hope you are coping with your health & hugs back xx

[Nanaeal]

I am so sorry only just saw your post. It's no wonder you feel so depressed how awfull that you have had to wait so long. You are so unlucky to have an ineffective GP lack of knowledge is no excuse for not treating you. Keep blogging and get suppprt 999 sounds like an aption. How about your MP in the meantime wrap yourself in this hug. I am in Lourdes at the moment so I hope you won't mind if I pray for you xoxoxo

[Sand64]

Aww, that's lovely & thank you. To be honest, I have given up on e.mailing, altho PALS did help me get this far & my consultant to write to Proff Wilson, so not much I can do til then. I do have an appt this wk to see respiratory nurse at same hospital, that came after AGM of respiratory meds wrote to me through PALS ? Not sure what that's about, maybe Proff Wilson requested it b4 I see him? As for going to A&E, I did that when took VFend back to pharmacy in hospital after reaction, & pharmacist sent me there as needed to see Dr urgently for alternative (his words). At that time I did not know about diagnosis of Inv Aspergillosis & after 2 hr wait I saw a Dr, who was no help at all, she said she knew nothing about lung probs & said I should have called ambulance the night b4 when I had reaction to VFend & then would have seen a member of my consultants team & as it was Friday eve my best option was to phone my consultants secretary the following Monday to get an appointment (l said I,m deaf & problems on phone), so she replied, get yr GP to do it then! So that was it, I left with no alternative meds or help, That was on May 9th & I did go to GP on the following mon & they did contact hosp, but I did not get an appointment sent, so after a few wks I started my e.mails to PALS & now 6 months later I have appt to see Proff Wilson on 24 Nov.. Sorry mssg a bit long & thank you, for yr offer to pray for me at Lourdes & I do hope being there will help you..

Sandy xxx

[peege]

Hang on in there. Prof Wilson has a very good reputation indeed. It will be so worth going and hopefully it will be life changing for you.

Please wean yourself off the sugar though. Sugar feeds fungi and you need to do everything in your power to help yourself.

Baby steps to the new you so don't be disheartened. Give the BLF helpline a call 03000 030555. 9-5 Mon-Fri cost of a local call from a landline.

All the best yo you. P

[Sand64]

Thank you Peeg, I know you are right about Proff Wilson, the only problem is going part way on underground & open to infection travelling around, so may wear face mask. U r also def right about sugar, but that would be really hard! so will try cutting down at least.

I cannot ring anyone as deaf caused by vancomycin 12 yrs ago for severe pneumonia & Guillain Barre Syndrome. Was,nt expected to live, so can,t complain, but siren in my head 24/7 does,nt help & cannot hear smoke or fire alarms because exact same pitch. Appreciate your message & will try think positive & Proff Wilson can help.

Sandy xx

[Barbie52]

Hi Sand64

I have Bronchiestasis with very low antibodies (6)

I am on Tilade puffer and Seratide and daily Doxycycline with stand by antibiotics

I recently had a Broncoscopy and lavage which really helped but with Aspergilliosis

I really feel for you

I cannot begin to imagine how you are coping without medicinal support

Totally relate to not wanting to sleep

I am thinking of you

[Sand64]

Hi Barbie, I obviously knew nothing about my illness til I joined H Unlocked! I have only Symbicort which I use maybe 4/5 times a day sometimes & wondered why it never seemed to help with breathlessness. I am tired all time but fight sleep but I can be reading & next thing I wake up breathless a few hrs later & it's like I pass out as was not sleepy when reading

[Sand64]

Sorry somehow sent reply before ended? I cannot believe I have not been given any other meds by my consultant & I ask my GP for the Amoxocillin as standby as my previous consultant who retired 4 yrs ago, always made sure I had them. I just feel like my now consultant had written me off after treatment I returned (Voricanazole) after bad re action after 5 days. He had said when I last saw him at end of April that he wanted to 6 me in 8 wks, but that appt never arrived, so I went through PALS as previously said on here! I will make sure I mention this to my respiratory nurse on tues, as I can see from people on here that I have not been helped at all? I just suffer it & have become a recluse apart from when I go see my daughter every 2 wks for a meal out. Thank you for your welcome reply & others these past few days. I was feeling that my life had already ended & so sad, but maybe there is hope & will last a bit longer after I,ve seen Proff Wilson next month. Take care

Sandy xx