Bronchiectasis

[sjm57]

I was diagnosed with Bronchiectasis when I was 19 yrs old, when I was 16 the doctors thought it was Cystic Fibrosis, I am now 57. Anyway for the last two years I have been having issues with my oxygen levels, now I don't know if I've always had these issues and just didn't know it or if this is a new thing. Can anyone relate? Will it get better? Or is this my new normal?

[monkey65]

Hi sjm and welcome to the site. It is possible that you can have another condition alongside bronchiectasis (eg asthma, emphysema). Do you have a chest consultant you can talk to?

[sjm57 in reply to monkey65]

Hi monkey65, thx. I do have a Pulmonary Physician and he encourages me to keep my lungs clear by using many different methods. This is a new experience for me and I was wondering if anyone else was experiencing similar symptoms.

[Hidden]

are you using your own pulse ometer or is someone else doing the readings....i also have bronchiectasis and my normal is 88 but rarely get to it and im oxygen dependant...if your readings are low you may need oxygen too...who have you seen about it

[sjm57 in reply to Hidden]

Hi mandy6513, I do have my own and monitor it especially when I get winded doing simple tasks like walking to the kitchen. No I am not oxygen dependent, my normal is 95 but I have been experiencing saturation levels of 90/91. I thought I had an infection and went to my primary physical for antibiotics, I will see my pulmonary physician in a couple of weeks and find out what he says is causing this.

[happyfeet59 in reply to sjm57]

Hi there, I have had bronch for over 60 years and was put on oxygen last year. Everyones sats drop on exercise so the focus is on where you start from, what you go down to and how long to recovery. Before last year my ' normal,at rest' was 91 and it went down to 88 on exertion. I was very breathless but my recovery time was good at a few minutes and I adjusted to life at a slower pace.

Your normal is 95 and your exertion level is 91 so I don't think they will give you oxygen. A normal of below 90 at rest and a reading of below 88 when exerting yourself is when they start to take note. Even then its all about blood test results. Not everyone who gets breathless will be offered o2. Perhaps your sats have been affected by your infection - did you send in a sample?

I would advise a chat with your gp for reassurance. Most importantly you must keep up with your chest clearance. If I am being honest, I didn't always heed this advice when I was young. If only I had a crystal ball....

People who really are struggling with low levels do need oxygen and have no option but to accept that route. It is not something you can pick up or leave as and when. It is generally for life and can change your lifestyle dramatically. Everything seems to take so much more organising. I should say I am on a high level of oxygen - others are on much lower and may not have the same problems. But, if you need it, it is a life saver.

If I were you what would I do? Do my physio, exercise more, keep on top of infections and talk to your consultant.

[sjm57 in reply to happyfeet59]

Thanks happyfeet59, this is the best advice I have received, you covered all my questions and helped me to understand that I am not in this alone. Yes, I have a great Pulmonologist; however, talking with people who have the same type of symptoms lets me know that I am not going crazy. I really appreciate your honesty. Thanks again.

[cofdrop-UK]

A very warm welcome to you sjm. It seems to have taken them a long time if they thought you had cystic fibrosis aged 16 not to diagnose you with non cf bronchiectasis until 3 years later

Regarding the issues with oxygen levels it might be best to discuss this with your consultant. Do you have an appointment some time soon?

You could also discuss it with BLF (click the red balloon above for details) but they won't be in again until Monday.

Good luck

cx

[sjm57 in reply to cofdrop-UK]

Thanks cofdrop

[peege]

Hello and a warm welcome to this site. I don't have bronch but many do and I'm sure they'll be along soon. All the best. P

[sjm57]

Thanks peeg

[Offcut]

I was always off school with Bronchiectasis (most terms) was eventually diagnosed with asthma I have had many bouts of pleurisy and pneumonia one of which put me in ICU for 32 days and left me with all sorts of problems and scaring to the inside and outside of the lungs. I have now been diagnosed with RLD. I recover well but lose and drop oxygen levels in an instant. My GP only bases his opinion on my at rest stats were my consultants has stated my conditions has given me great limitations. My GP see's 350 on peak flow and says that is not to bad. Consultant tells me that is all I have in my lungs and I am empty once I blow.

Have you had a spiromitry test? Worth asking for one if not.

Be Well