Long term Bronchiectasis & also my long wait regarding diagnosis of Invasive Aspergillosis in April !!

[Sand64]

Hi people, it's been a few weeks since I first wrote in & had some friendly answers & advice. Since then I have been e.mailing the PALS team at my hospital to try & get some answers. As I said previously my consultant had gone on leave but had written to Professor Wilson at Royal Brompton Hosp. So I waited & have been eating better after my daughter stayed for a few days & had eye test, which showed no signs of Aspergillosis in them & no need for prescription either. So that's good news, although the eye guy did say it does not always affect eyes.

Last week I had e.mail From lady at PALS team to ask if I had heard from Prof Wilson or my consultant, since he came back on 18 Aug. I replied to say Not heard from them & asked why my consultant had written to Prof Wilson, was it for referral or advice? She relpled to say it was for advice? She said she would contact my consultants office & get back to me. I had not heard anymore since last week, so I mailed her again yesterday. Her reply was to say she had spoken to Prof Wilsons secretary today & they are sending me an appointment because Prof Wilson wants to see me.! So although I will be seeing a top lung specialist & get some answers at last, it has also worried me as l was thinking my consultant had maybe got it wrong & that's why he asked Prof Wilson for advice & I would eventually get to see my consultant & be told this!

So now I wait again & still confused as to why my consultant has kept me waiting so long without treatment & no more explanation about this disease I may have?

I am not happy about all this & feel it's because of being mis diagnosed in Feb 2013 by incompetent junior registrar & then trying to get appt to see my consultant for over a year since then, so did not see him til March this year & would I have got so bad if had been seen a lot sooner?

Another Rant over, hope you are all getting better treatment than this!

[RibvanRey]

I am so glad that you have posted again. Wonderful news that you are going to be seen by Dr Wilson. Such a awful shame that you have had to chase so much but it may have just spurred the original guy into passing the case more easily. Good luck and please stay in touch with us here. Regards Rib

[Sand64 in reply to RibvanRey]

Thanks Rib, altho I do not like keep mailing the PALS people, but if I had,nt I would not have got anywhere apart from waiting for another appointment to see my consultant or maybe not if this is real? I am ok apart from I get out of breath after doing stuff & cough a lot. Hope you are not suffering too much & have some good days if possible? X

[Hidden]

Hi, it's such a shame and disgusting really how we have chase appointments for ourselves, u get told any changes in how u feel u must see ur doctor, yeah right they either dismiss what ur telling them and make u sound like a hypercondriact ( don't know how u spell it lol ) or say they are going to refer u and u wait months sometimes for a response and end up chasing it urself, oh well hope u get seen soon. Take care xxx

[peege]

Good for you for fighting your corner. Hoping your appointment comes up soon, brilliant that you'll be seeing the best

[sassy59]

It is so wrong that you have had to do so much hard work just to get to see someone. You do need answers and I truly hope you get some very soon. I would like to add that Pete goes to the Brompton usually once a year and has always had great treatment from the Staff and Consultants there so I do wish you well. Let us know how it all goes. Take care and thinking of you. xxxx

[Sand64 in reply to sassy59]

Thank you, that's the only thing I have to look forward to, is seeing Prof Wilson because I need definite diagnosis to see if I have got Inv Aspergillosis, so I can plan what future I have left! Why did he diagnose that & then not see me for follow up appointment to discuss it with me, as I did not hear him say it at my last appointment with him, because of faulty ears & no one with me. It's like he,s avoided seeing me? That's why I went through PALS as want answers. I said should I be planning my funeral? That's when AGM of respiratory wrote to me, to say my consultant was being Assumative according to my symptoms? I think was the word or similar, not good answer!! I will see GP if poss this week. Sorry my messages bit long but I just bottle it up & no one else to say it all to. You take care, I will get back with any news & I,n learning more about my illness from u people on here.

Sandy xx

[jenss]

Hi there Sandy, I have been thinking of you and am glad to hear that you are feeling ok and had some reassuring news from the eye exam. I hope that your appointment will come through very soon- I don't think I would be as patient as you have been... I am amazed that your specialist has not been in contact since his return on the 18th. Anyhow, great to hear from you, look after yourself and let us know how you are getting on. I wish you all the best, lots of hugsxxx

[Sand64]

Thank you Peeg, Sassy & Jenss, I am still confused as to why my consultant has,nt seen me since I have been using PALS liaison team. Plus it's taken me over 4 months to get this far with no treatment since my problem with Voricanazole (V.Fend). Your support & advice has helped me feel better,as being deaf has hindered me making phone calls, so I have no choice but to be patient. I am still hoping my consultant, being a general consultant has wrongly diagnosed me & Professor Wilson will find this out or at least tell me what to expect & deal with it? I will check in again with updates. xx

[jenss in reply to Sand64]

Thanks. You know, you can come on here just to have chat anytime-not just for updates on medical conditions....xxx