As a life long sufferer of Bronchiectasis (I am now 66) I had this burning desire to construct a website about ''Coping with and self management of Bronchiectasis - ''A Patient's Perspective''.
I have spent a lot of time discussing with specialist health professionals and other patients as to content of such a site.....Best to let you all have a look.... www.bronchiectasishelp.org.uk
I feel patients need day to day simple, practical and friendly advice on self management of this disease.....hope you find it interesting..............Rob
thank you i have found your site very helpful ..
I too have visited your website. It is excellent. I have made it a favourite in my browser so I can visit it again.
Thank you for going to so much trouble.
Thank you, your website is really informative, it's great to have all the information in one place!
Hi I'm new to the forum I am intrested in knowing anyone with bronciectasis I am 62 have had it since I was young I just wondered how you cope I have never met anyone or spoke to anyone with it thanks eileen
Thank you for the guide. I congratulate you on the profession appearance and layout and although it contains much of the information I have obtained from the Brompton and the wonderful nurse practitioner at my GPs you can never have enough info and contact with other people with the condition. I had quite forgotten about drinking a lot - luckily I get thirsty because I have allergic rhinitis too and it means I often sleep with my mouth open - which leads to a dry mouth.
You don't meet many people with bronchiectasis I quite agree Eileen. I am 65 - nearly 66 - and have had mine since I was 13 months old.
Thank you Rob, the site is really informative.
I totally agree with the above ,very professional and informative I have this disease and a patent ductus arterioscolosis ,I am 49 and had 4 children and never have these problems been picked up till I had a chest infection in October that resulted in a ct scan and then things have just gone from bad to worse .so thank you for all the information
Thank you all for praise about my website.....I am adding new updates to the site next month....such as pages about ....Coping withFatigue.....How to stay out of Hospital.......What is Self Management - and self management plan leaflet that can be downloaded.....New Physiotherapy pages....Knowing your Numbers..........and a few updates to existing pages.
I am also working on a list of all hospital bronchiectasis services in Scotland followed by UK lists......this takes some time. Hopefully a big help to all patients looking for the best care centres in the UK.
It is so important to know about and understand this debilitating condition ........self management is the key!
Kind regards. Rob
Well done, excellent site.
I have found that Manuka Honey with a UMF of 10+ extremely effective in helping to prevent chest infections. I take one teaspoon daily but if I start to experience any early symptoms of an infection I increase the Honey to one teaspoon in the morning and one in the evening. Not 100% guaranteed but I have only had one infection in two years since I started taking the Honey and was experiencing three/six very bad infections a year prior to this.
Will definitely consider Manuka Honey for future reference. The fewer infections we all get the better we will be.
robert - you are working so hard with the website. It is such a good thing that you are doing.
Hi Eileen, I sometimes feel I am the only one with bronchiectasis, especially because I have never talked to anyone with it. I am 69 and as a result of broncho-pneumonia at aged 2 I have suffered with a bad chest since then. I officially got a diagnosis of bronchiectasis 33 years ago. I have done posteral drainage each day since then. Some years back I started to take Gentamycin through a nebulizer, this I now do each day.
Last year I was also diagnosed with chronic asthma, this has been hard to deal with. I take ventalin and respontin each day through a nebulizer.
I am very organised with my daily routine, this keeps me well, along with a good diet and lots of fresh air.
Would love to hear how you cope.
Robert, I am so pleased that you decided to construct this website. Is good to know that there are people out there who understand what it is like to live with bronchiectasis. I am 69 and got broncho-pneumonia at 2. I was always chesty but got a diagnosis of bronchiectasis when I was 33.
I have felt alone all these years with regards to my health, but now I will visit the website and feel that there are people out there like me. Thank you, Stella
Hi stella it seems your coping ok doing all the right things I cope pretty wellI do drain morning and night am on all the usual meds but take antibiotics prophalactic have been for about 14 years now secondry antibotic when needed have got pernicous anemia too along with other problems but it's the tiredness thats hard to cope with I hope your ok chin up stay well xxx
Thanks Stella.....I know exactly how you feel your condition is so similar to my own. I too was diagnosed at 33 years of age .....I am 67.....at that time you were left on your own...even my GP had never heard of bronchiectasis, there was very little or no information for patients at that time......hopefully my website will provide patient friendly information and support...especially helping us all to share ideas of patient self management and understanding this debilitating disease........look after yourself....Robert
Just to reiterate really that this forum is wonderful because so few people know about bronchiectasis these days - although I was shocked that a GP didn't. People always think its like asthma.. Never mind. We are still here battling on. That's the thing to cling to on bad days.
What a star you are Rob! You have obviously spent many hours of your time to construct the contents of the website which I find so helpful.
You deserve a medal.
You did a good job robert its been so helpful seeing how others cope I had never spoke to anyone with bronch its been very informative thank you
Hi operalyn im 62 63 this year ive had bronch since I was very young too I dont know if you've heard of PINKS DISEASE mercury poisoning it was in the teething powders and as far as I know national dried milk I had pinks when I was I all my illnesses seem to stem from that stay well xx
Hello im new to this site want i would like to know is how do people manage to work with this condition i have had cronic bronchiectasis sicne birth and im now 40 when i left school it didnt really bother me but when i got older working got so hard i went from 48 hours aweek down and down and now i havent worked for a long time ,once i start doing any thing i get so out of breath i would lv to speak with anyone who has something to say i also found your site really good paul