Ebus procedure

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Hi there, am about to have a bronchoscopy and ebus procedure, am terrified, they think have sarcoidosis, has anyone got any advice please!

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19 Replies

  • Posted

    My husband has sarcoidosis and is doing great!Had it in his lungs!He takes methyltrexate 12.5 and it has all shrunk and he is living a normal life.He is 41.
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  • Posted

    Hi Gail,

    I was scared to pieces before having my bronchoscopy as well, I remember that feeling like it was yesterday. I was so relieved when it was over as there was nothing to it. I was home before I knew it and had absolutely no issues. Hopefully your procedure will go as smoothly as mine did and you'll be as relieved as I was. I was first diagnosed with sarcoidosis in my lungs in 1999. Most people can live a normal life with sarcoidosis, many are able to have it go into an inactive state within a 3 year window.

    Try not to fret over your upcoming procedure, it truly isn't scary as it sounds. When you wake up, you'll have a cough but that should be it.

    Deb

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  • Posted

    Hi Gail,

    A 57 year old white mall

    I had this 15 months ago. I was terrified at the time but it was nothing. I ended up having sarcoidosis in the chest lymp Noieds and esophagus. The meds the rhemotologist started me on were 40mg of Prednisone and 10 mg methotrexate. (Injection once a week) several issues arose wIth in the 15 months. It all depends on the person. It could go stagnant with just the steroid treatments.

    I now have it my eyes - not where you want it to attack. On 5 different drops 1 Ointment.

    Surgery next week to in place plugs to see if this will help from the dryness and create my own tears my preasure points a extremely high risk

    I hope this helps,

    Chris

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  • Posted

    Hi Gail,

    I had a bronchoscopy and biopsy done in July and was also very nervous but it was really easy and I had no complications. It was the first time I was ever under anesthesia so I was extra worried.

    Sarcoidosis was confirmed from the biopsy. I was prescribed prednisone and my last ct scan showed a significant improvement with only residual nodules. The only symptom I had was joint pain. Some aren't so lucky. This disease is so different in the way it affects everyone. You'll be fine and it will be over before you know it!

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  • Posted

    Hi there sorry for the delay yer I also had a ebus I didn't like the thought of being awake to have it done but it wasn't that bad to honest I had to wait 2weeks for the results but as it was just after Xmas wen I had it done it does take longer for the results, I was so relieved it wasn't chest cancer as the docs had 1st thought but sarcoidosis was still a shock as I'd never heard of it before an didn't know wat to expect good luck an plz let me know ur out come xx

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    • Posted

      Hi thay gave me a light sedative because thay prefer you to be a wake when thay put the tube down because it helps your recovery better to be honest I was petrified but it wasn't as bad as I thought it was going to be, I had to wait for nearly 2weeks before I got my results which was hell but it was a relief when thay told me it was sarcoidosis, what's your systems? Do thay relate to any of the ones you read on the internet, good luck I'm sure u will be fine x

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    • Posted

      Your welcome I didn't know much sarcoidosis either, it was a shock to me I only had a ct scan to check on my heart as I have a heart murmur an thay told me I had multiple swollen lymph nodes an could b a choice of 3 things (chest cancer lymphoma or sarcoidosis) but with my symptoms my doctor was edging more toward sarcoidosis, so thankfully the biopsy came back as sarcoidosis, I'm on 20mg of prednisone steroid I've got to have another ct scan soon an go back in April to see if the steroids are working I'm very tired a lot an my chest hurts all the time when it's tight I take the inhaler the doc gave me an sometimes it helps, what systems are you having xx

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    • Posted

      Hi Gail please try not to worry I'm sure everything will go ok, please let me know how u get on, thay say this condition is rare but there seems to be a lot of people with this condition and we can all help each other. Xx. Good luck x

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    • Posted

      I agree I don't think it's a very rare condition!Hang in there and try to remember we all get hardships at some time but it usually works out ok in the end!Good luck everything!My husband is doing well!

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