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Dealing with bronchiectesis

Posted , 8 users are following.

Nygirl
Nygirl

Hi everyone my name is Eram. I have had bronchectiesis for 20 yrs. I finally got so fed up being sick and constantly being on meds and steriods that I decided to get a lung lobectomy as recommended by my doctor. So on July 11th, 2017 I did a lower left lobe lobeactomy. The surgeon informed that my entire lower lobe had collapsed so getting rid of it would eliminate the damage portion and finish bronchiectisis. I wanted to know if any body else has got a lobectomy done to eliminate this horrible disease and how long did it take him or her fully recover. Doctor had told me that recovery is 6wks but honestly I am tired all the time still and have nerve pain where my incisions were. Also the center of my chest still hurt. Does anyone know when this nerve pain and chest pain will go away? I will really appreciate it if some can shed some light regarding this matter.

Thank

Eram

2 likes, 14 replies

14 Replies

  • Melfin
    Melfin Nygirl

    Posted

    I haven't had the op but could I ask what meds you were taking. I have this and asthma. I take Fostair inhaler and ventolin for asthma but nothing for both 

    • Melfin
      Melfin

      Posted

      Sorry I don't take anything for BX

    • Nygirl
      Nygirl Melfin

      Posted

      Hi Melfin,

      First of all, I apologize for not replying back quickly. Answering you question the medications I used before my operation were breo, incruser, proair, singular, daily once a day. Also, nebulizer,steroids and antibotics as needed.I am still on these medication because my pulmonologist wants be to heal before trying to take me off them slowly after the winter. Please feel free to ask what ever you like. I will be more than happy to reply you back.

      Thanks

      Eram

  • ohara
    ohara Nygirl

    Posted

    Hi Eram   I had both my lower lobes out 63 years ago  !!!   so the operations were nothing like yours but with the same result , half your lung gone ( in my case  2 halves)    The ops were  a much bigger deal and the recovery slower, although I was  much younger than you when I had them.  But they did not have antibiotics then ( only by pencillin injection)   and therefore removal was the only treatment for Bronchiectasis.

    Well as I am still here, ( my prognosis before the op was i'd get to 20 years)  the operations did get me through until they developed antibiotics and the ab's have kept me going since then .  Thank God for the NHS

    Back to your questions, which may not help you because of the developments in medicine since my operations.

    Feeling tired after a major operation is normal , because even though they do things quickly now ( keyhole etc instead of big cuts round the body)   it is still a major op.   It will take time more than a couple of months, so treat yourself kindly , don't try to rush things eat well, but keep exercising ( walking is good)  you will soon get your strength back.  Whenever you get a cut at on op, you will have some pain around the scars for varying amounts of time.  The scars that caused me the most pain in the years after my ops, were not so much the big long scars going right round my chest, but the small scars where the drains into my lungs that took away the fluid in my lungs  went..   The pains WILL go away , but it takes time....and to be honest now and again over the years I get pain in the scars again.   The inside scars also need to heal and they too will take time I'm afraid .  Take things easy, don't try to do anything too strenuous or lift heavy things.

    The good thing is that you have most probably had most  of your Brochchectasis damaged lungs removed ( there may be some damaged lung left)   and so greatly extended your life span .    and your health should improve greatly and  it will give you a new lease of life.

    When you are weak you feel you will never get that inside strength back,  but as the days go by and you get stronger , you start to feel brilliant again.  The pain is just something you have to get through in order to have a better and healthier future

    Good luck

    • Nygirl
      Nygirl ohara

      Posted

      Hi Ohara,

      Thank you for your insight. It good to know that there is hope and light at the end of this tunnel. I am amazed to her your story about dealing your are truly an inspiration.

      Eram

  • joviswoman
    joviswoman Nygirl

    Posted

    Eram,

    I've been wondering about having a part of my lobe removed.

    I've just had 10 days in hospital on intravenous antibos, nebuliser and carbocisteine.

    I feel a bit better, but it already seems to be wearing off.

    Consultant tells me that I will need my middle right lobe removing soon as it's completely collapsed. But I'm trying to put it off as the lower lobe has started to go too and I can't see a reason to have two surgeries when one will do.

    So I'm hoping you'll keep us updated as I'd like to know what I'll be letting myself in for.

    Did they do keyhole or full cut?

    I do hope you start to feel better soon. 

    Gail.

     

    • Nygirl
      Nygirl joviswoman

      Posted

      Hi Gail,

      I hope my response helps you. My lower left lobe was removed. My surgery was done scopically at Columbia Hospital in New York.

      The surgeon made 4 incisions. One under my left breast, then 2 between my ribs and one near my left shoulder on my back. 3 of my incisons were small about 1in or less and one under my armpit region near my breast was about 2 in.The only one that really still bothering me is the one under my breast. I am still unable to wear a bra due to nerve pain. I am on betapentin to manage the pain. I will advise you get another opinion from another surgeon to see if there is any other option so you dont have to wait. Also I will suggest you to be mentally prepared that though the dr say in 6wks you will be good to go back to your normal routine it takes time. Initially the pain will be intense which is more muscular the first 2weeks after op but afterwards it will be more nerve pain which takes from months to years to heal from what my dr had told me. 2 months after operation I am slowly starting to become normal but I am glad to get this done. I am hoping with time my asthma will subside as well.

      Eram

    • joviswoman
      joviswoman Nygirl

      Posted

      Dear Eram,

      I really do hope to start feeling well soon.

      I've had my gall bladder taken out via keyhole, but I'd no idea they could take your lung this way too. I wonder if we'd do it that way over here in the UK?? hmmm....

      I think they may decide to take my middle and lower lobe sooner, rather than later, as I'm now back to feeling poorly and tired again.

      To be fair I just want my bad bits of lung gone! I'm hoping with it gone I can get back to some sort of normalcy. 

      My asthma, thank goodness, hasn't really played up with having BX for that I'm extremely thankful for.

      Gail.

    • Nygirl
      Nygirl joviswoman

      Posted

      Dear Gail,

      Thank you so much for your kind words. I understand how you feel and I think once you talk to a good surgeon in UK. I am sure they can give you a better explanation of how much of the damage part is there and how much they will be able to save and remove. I did alot of research where I wanted to get operated at and who will do my surgery. It was my pulmonologist who forced me to talk to my first consult. He told me either u get ur surgery or you are going to be on rotating antibotics for 6month a year from now on.So i go my first consult and then got a second consult and that surgeon walked in and did not even introduce himself to me. He directly told me your lower lobe has completely collapsed and due to scar tissue he will have to do another ct scan to decide whether to do scopically or open incision surgery. He told me it is better I get rid of it since there is no use of it as it is dead. This was the first time I found out that my whole lobe had collapsed. He was not friendly but he explained to me the procedure and told me he will try his best to do this surgery scopically to speed up the recovery and healing process. I am truly grateful that he did my surgery. My first wanted to do an open incision so I am glad to get another opinion. Also my pulmonologist helped me look up who can do robotic or scopic surgery. Also I asked around if anyone knows some good pulmonary thoracic surgeon. So please do research on the surgeon.

      So when you go in to see the doctor you are prepared what he is going to do. Also, write down all the questions before to ask him or her. Also try to find out who does the surgery there scopically and his success rate etc. See if you can make an appoinment with that doctor.I hope you feel better soon as well. I know this must not be an easy decison for you to make but I think you will make the best decision for your well being in the long run. If you have any other questions let me know if I can help.

      Eram

    • joviswoman
      joviswoman Nygirl

      Posted

      Hey Eram,

      I'll talk to my consultant and if I'm not happy, as my old consultant has just retired, and see if I like the guy as to whether he does my surgery.

      Least you found out face to face your lobe had gone, I found out in a letter, copied to me via my normal doctor, that they'd found out it was dead in the middle AND my lower lobe has started to go too.

      Least I now know what I'm up against.

      You take care honey.

      Gail  

  • Nygirl
    Nygirl

    Posted

    Hi everyone,

    I am truly sorry for not replying back to all of you sooner. I have not been feeling well and honestly, it had been difficult to manage everything on my own since I came back home after the operation. I have two very activity kids who exhaust me. Thank you for your thoughts and questions I will try to answer everyone back as soon as possible.

    Eram

  • lisa5932
    lisa5932 Nygirl

    Posted

    Hi Eram,

    I was wondering if you are feeling any better. I am also considering a lower left lobectomy. Did you have it done in New York City? I have been suffering with this disease for a long time and nothing seems to help. I have had 4 bronchoscopies in the past 6 months to get rid of the mucus in my lung but it just comes right back. My surgeon thinks he can do it robotically, was yours done that way. I am extremely nervous to have the surgery.

  • sue00942
    sue00942 Nygirl

    Posted

    Hi there. I am just reading your messages. I didn't know Lobectomies are used today. Can anyone with bronchiectasis ask for this or is it a procedure only available for certain patients with certain lobe damage?

     

  • evangeline03379
    evangeline03379 Nygirl

    Posted

    Hi Eram,

    I just saw this site today. I had lobectomy for bronchiectasis in 12/2016. Nerve pain lasted for at least 12 months. Since this post is 10 months ago you probably don't have it anymore.

    Let me know.

    Evangeline

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