Bronchiectasis

Chest and lungs
1

Hi all,

My name is Laura I'm 25 and have been diagnosed with bronchiectasis for a while now. I have never posted on something like this before and I am just looking for support from people that can actually relate to me.

I have quite a challenging job and find day to day life pretty difficult and stressful a lot of the time. I have constant chest infections and have to do physio a lot too, my consultant is talking about possible removing half of my damaged lung and the thought of this terrifies me. Has anyone had this done?

Life appears to be really difficult sometimes with all the medication and upkeep to myself it's tireing 🙁

Laura X

2

Hi Laura. Are you UK? I too had a consultant who was going to remove some damaged lung. I am much older than you but have had B for a long long time. I changed consultants and hospital for a second opinion to a B specialist. It's been nearly 18 months on treatment and now and I feel a lot better with their expertise. I'm not saying he doesn't understand your condition but you are entitled to a second opinion. My new consultant told me I didn't need any lung removing yet. I recently have started nebulised saline every day. What a difference it's made to me. My advice is seek out a bronchiectasis specialist for a second opinion and Speak to your parents to tell them how concerned you feel because you need someone to talk to.

3

Hi Laura.

Do you live in the UK? I have had bronchiectasis since I was a little girl and I'm now 48yrs old and manage my condition well due to going to Papworth hospital in cambridge when I was around yr age. They taught me so much and in my opinion it's the best hospital for our condition in the UK. I know people who have had part of their lung removed and have gone on to live very active lives. I would get a second opinion and I would try and see a specialist at Papworth hospital if you do live in the UK. If you want any info regarding this I'm happy to help.

Rachel x

4

Sorry to hear you are having such a rough time, however it is very familiar. I struggled for several years, each flare up taking weeks to recover from. I have now reduced my hours as I also have a challenging job, I am hoping this will help; could this be possible for you as I am sure the tiredness and stress exacerbated my symptoms?

5

Hello Laura

I have had bronchiectasis since my twenties and I'm now in my sixties. When I was diagnosed with it my consultant said that it would be possible to take away the lower part of my lungs which would solve the problem. He suggested that it would be possible further down the line if it couldn't be controlled with medication. 

I do have a salt pipe (which really does help) and do my physio daily but I have been a lot better since I stopped working as I can rest on my "off" days. However, I have often wondered if the surgery would have cured the problem. I do worry about the amount of antibiotics I take over the course of a year.

I know this won't have helped you but I feel maybe we're on the same wavelength here.

6

Hey, thank you for this comment my consultant is currently looking to refere me to another specialist for a second opinion, because he's basically saying he wants to make sure it would be the right thing to do before the procedure actually goes through.

I'm willing to do anything really to Avoid taking constant antibiotics!

Thank you

7

Hi Rachel,

Thank you for commenting like I said in my above comment, my specialist is already talking about referring me for the second opinion. I just wanted to know is anyone had actually has this done.

I this its just going to be a very long process of how to keep my contrition under control without is resorting in hospital all the time

Thank you Laura

8

Hello Deborah,

Yes I think my work sometimes has a direct link with how I am coping with my condition. I previously had a very physical job which I left because I couldn't cope with that anymore, so I have switched but is feels like I seem to struggle that same amount.

I think tiredness and lack of motivation is one of the most important symptoms that I experience.

Thank you Laura

9

Thank you for this information, it's interesting to see how different people cope with our condition.

I feel I need to keep on with work because is does keep me going to a certain extent. It would just be nice for a change for so one that does not have this condition to understand and sympathise more instead of saying, oh your breathing sounds bad you should take your inhaler, this condition is so much more that using an inhaler.

Thank you Laura

10

Three three weeks ago told I have this condition.    Also in my sixties.   Doctor said growing up I had pneumonia.   I think I would have know.   Not on any meds yet.   Seeing the doc end of august

11

Hi Laura,

I'm 43 and I have been living with B most of my life, for the most part trying to ignore that I have a problem, especially since I had a lower left lobectomy in my early twenties. I just wanted to be normal.

I said I'd never have surgery again if given the choice now, but I don't know the flip side of the coin either, so its hard to advise.

However, I will say that it was the worst experience of my life. I was in ICU for a week, so drugged up that I wasn't aware of my surroundings most of the time and in excrutiating pain. I was off work for a month, my husband at the time couldn't sleep in the same bed as me. The slightest movement was painful.

Not to mention the complications post surgery. 

Am I better off having had my most affected part of my lungs removed? For a few years yes. Until one bad winter when my remaining left lung, which at the time of surgery was the healthier looking lung, deteriorated.

It was all downhill from there to be honest. 

Complications post surgery: All your organs move to fill the gap left - not a problem, however, and there is no evidence for this, but it was said by a few medical professionals that the surgery affected my posture. My right shoulder dropped, which has a knock on effect on my right hip, and neck and muscle tension in muscles compensating for the misalignment. Headaches are my newest problem as a result of my neck tension. My right hip is rolled forward and can be corrected with regular visits to the Osteo, but this is yet another thing you'll be doing for the rest of your life.

They never warned me about this, and perhaps they don't know because I never saw that specialist again to tell her.

 

Is the procedure the same? It may be worth asking them step by step how they perform the removal, from the drugs to the drips to drainage pipes to the aftercare and possible side effects.

Let's hope you don't need it!!

You're welcome to call on me again once you are clearer.

I don't mean to scare you - like I said this was 20 years ago. So much could have changed since then. Get clear to the finest detail and then choose.

12

Hi Laura, I'm so sorry you are having to deal with this illness...you are so young.  I am here in the USA and so far I've not heard of surgery to remove a part of the lung.  I would look into it further.  Have you gotten any information from the MAYO Clinic in the US on line?  Perhaps your body is resistant to the ant-biotic you are on. I was tested in first grade for TB and the test was positive, but nothing was done.  I am 73 now and spent many years getting bronchitis and pneumonia several times a year. Then I started the hack hack cough and I was diagnosed with Bronchaiectisis .  In the beginning i had lots of mucous coming up but not so much now; just get very tired as if someone pulled the battery out.   What kind of physio to you do?  Can you get a second opinion?  Also they put me on a daily antibiotic actually for something else and I haven't had any infections since.  I had two sinus surgeries and psheudomonis (sp?) was found in my sinuses both times which is a pneumonia.  I know you are tired, but you are young and need to get the very best care.  Keep a daily journal of your symptoms and meds.  I started keeping a record on my calendar and finally I was taken seriously.  I hope you find the best answer.  Ask the consultant, we don't have them here, for references and a list of people who have had the lung partialy removed so you can contact them about their recovery.  Best of luck. Hang in there!!!!!!!

 

13

Hi laura,

I'm Vic I was diagnosed about the same age as you I'm 31 now. I've never been offered surgery but I echo everything the others said about getting a second opinion and as much info as you possibly can.

I totally know what you mean about the Physio and meds and everything it's so exhausting.

Sorry this has happened to you but it would be nice to chat to someone my own age going through this of you want to?

Vic x