Insight into Bronchiectasis
Posted , 5 users are following.
Hi! My name is Alonica & I am a Respiratory Therapy student. I am here here to gain insight on what Brochiectasis patients & caregivers would like to see from their respiratory therapist and what we can do better to give you the best care possible to aid in your treatments. Your recommendations or advice can be anything that has to do with your treatments or whatever you feel could be done better!
Thanks so much!
0 likes, 10 replies
dancing_queen alonica06105
Posted
I have had bronchiectasis for 40 years. After finally getting it all under control and learning how to manage the condition I only had a flare up about twice a year, going back about 15 years now.
At which point I was discharged from hospital although I was told I could get an appointment if I felt I needed one. I went over two years coping quite well but then I started to get repeated infections. When I rang the hospital they said as I had gone so long without an appointment I would need to get my doctor to make a referral.
A few more years down the line and I haven’t been able to see a specialist again.
I think it would be a good idea if, once diagnosed, you are permanently on record for an annual check up at least, and able to get to see someone within a matter of days rather than weeks when trying to book an appointment with my doctor.
alonica06105 dancing_queen
Posted
Thank you so much for your reply. I’m so sorry you are having to wait so long for doctor’s visits when you’re enduring an infection. But, I hope you are able to see a specialist soon & you’re able to continue to manage it with minimal infections.
What happens during your flare ups & how have you been able to manage Bronchiectasis for many years with minimal flare ups?
marion49836 dancing_queen
Posted
I agree with you 100% dancing queen, one year is nothing in the life of a bronchi. Another thing that would be
good is that GP's should be educated in Bronchiactesis !
dancing_queen marion49836
Posted
Good thinking Marion
Anne
alonica06105 marion49836
Posted
Have you found that GP’s don’t have an adequate knowledge of Bronchiectasis? How does that affect your treatments? And what would you like them to be more aware of?
dancing_queen alonica06105
Posted
I had learned to tell the signs of the onset of an infection. I used to get a strong metallic taste in my mouth and I would find it an effort to het up the hill where I live without slowing down. Then in a couple of days after I would develop the cough with thick, green mucus which is when I started to take my antibiotics as soon as the cough started. Within two days I would feel ok again.
However, this has now changed. I find one minute I am ok and literally, the next I feel totally exhausted and then the cough and mucus starts. It is so sudden, and now I find it takes me longer to recover. Obviously I am older now and I don’t have a young family to think about. And maybe I think about myself too much, I don’t know.
i saw my doctor today who has sent me for an X-ray but he thinks I have developed bronchitis on top of the bronchiectasis. He has prescribed me some steroids, the first time ever for me, and an inhaler. I have to say I took the steroids as soon as I got them this morning and already I am feeling a little better in myself this evening.
when I am felling fit I try to exercise, walking, swimming and I do dancing too. It makes me breathless but I just don’t overdo it. I also use a salt pipe daily to open up my airways, and then use an Acapella after to help clear my lungs. This has become a way of life for me and only takes half hour a day when I am on top of things.
alonica06105 dancing_queen
Posted
Oh wow! I’m sorry that the onset of an infection has more of a rapid onset. I can imagine how difficult that is.
I do not think you think about yourself too much. It is good that you are self aware & on top of your health & able to recognize signs of infection.
I hope your X-ray comes back with nothing at all, & if you do have bronchitis, I hope you will be able to recover quickly.
Glad to hear the steroids are helping! And the inhaler should help as well.
It is great that you stay active & that you use an Acapella everyday!
I hope these prophylactic treatments continue to work & help decrease the onset of infections.
Thank you so much for all of this information!
As I learn more about Bronchiectasis, is it okay to message you about any questions I have?
dancing_queen alonica06105
Posted
jess.p alonica06105
Posted
Alonica,
As a young patient with bronchiectasis, I would say it's very frustrating when people look at me and are skeptical about my diagnosis. I'm pretty healthy and energetic so it takes a lot for me to feel really sick. Unfortunately, this happens quite frequently and whenever I see a doctor they never take my condition seriously because I'm young.
You might think I'm lying, but I sometimes have to visit different doctors (I'm at school so my primary doctor is far away) because they don't treat me properly when I'm sick.
So long story short, just know when a patient is in a lot of pain and believe them
Easier said than done I guess because I've run into this issue many times.
alonica06105 jess.p
Posted
Jess.P,
Thank you so much for replying! I am so sorry you have to endure clinicians not taking your condition seriously. I can only imagine how frustrating that must be, especially during the times you're not feeling well.
I feel it is very important to tune into a patient and take their concerns and pain seriously, especially since they have to live with it and would certainly be aware of their pain before anyone else would.
I will make sure I put forth an effort to believe my patients when they say they're in pain and act accordingly to help relieve their pain and signs & symptoms the best way I can.
Thank you so much for sharing! And if there's anything else you think of, please feel free to reach out to me.