Hello to all my fellow bronchi friends, I havent been on the forum for a few weeks now, just wondered how everyone is doing with the warm weather. I am feeling very tired and breathing is a nightmare ! I was becoming so lazy to go out, that I bought a puppy which forces me to go out walks a couple of times a day. It is said excercise is good for us !
Hello,
So sorry to hear that you are struggling! The puppy is a great idea, and not just for excercise...it is good for the mind and soul as well. Hard to feel too down when around a puppy.
hello marion, yes a dog is the best medicine in the world for any illness,its daunting at first to walk up the hill(very hilly were i live)but feel so much better when i get home and so does the dog. i have had bronchi all my life and have had pets since i can remember and i think that is why i am still here at 77 although its begining to get tougher as my joints are causing me problems as well as my lungs. the weather does not affect me to much if i go out early in the morning its the winters that affect me most.
Yes Marion i have not been on for a while Joe my husband not very well so just having a quick look now. He has had cipro for 2 weeks for psudamona but have not worked, went to G.P. on Tuesday and said the consultant said next time he would get I.V. at home. Hospital phoned Wednesday to say they will book him in o for Monday10 August 6 days. His chest is really struggling and chest ratteling. Trying to keep him going till Monday really hard for him and of course it is warm
So sorry to hear about your husband it must be awful for you too, watching him suffer and feel powerless to do anything for him. Hopefully he will get some relief on Monday. The heat definitely does not help. I wish you all the best. I am not a religious fanatic, but there are times when prayer really does help
Thank you Sylvia, the dog is a help I am 71 and luckily the only thing ailing me is the dreaded bronchi. I bought a gorgeous little shih tzu who is now 14 weeks and full of mischief. My enture family is in love with her. I have to concentrate on her needs instead of thinking about my breathing.
thank you so much Marion, i just wish itwas Monday now
Yes Gary it is good for the mind when you have to think of a puppy who is desperate to get outside for toilet when I would rather have another 10 minutes in bed
Monday will soon be here, please let us know how your husband gets on
hello marion, yeah i sympathise entirely with what you are saying, ive had a week or more of tight chest feeling maybe weather related though i do know pollen knocks hell out of me in the summer, the weather has been awful up here in the far north, probably the worst summer for 30 years! maybe i need a puppy too. breathing like this is so unpleasant and worrying also, bah humbud
Hello from South Africa. I have had Bronchi Ektesis all my life and am 57 now. A few months ago I got a very bad strain of Psudamonas throughout both lungs. I refused to go to hospital so they tried to attack it with very strong anti-biotics and the IV drug via the nebulizer at home.This course lasted about three weeks but did not rid the lungs of the bug. I am now on Azithromycin for the next six months taking 250gms (half a Pill) every second day. This prevents the germ from communicating with each other and regrouping...beieve it or not. It is apparantly a highly evolved strain. This does seem to be working. Unfortunately my heart has taken strain thoughout the years so has now all but given up. Need any good ideas how to fix the heart?
yes its so true when you have a dog dependant on you there needs come first, although i do not think my partner would agree with me. i have a doberman who is three now, she makes me laugh with her antics and also helps me up the hills. hope your breathing is better today as it has gone cooler.
oh i am sorry to hear about your heart condition on top of all the other stuff wish i had a heart for you
Hi to everybody
Breathing has been descr a real issue for the last four weeks here in South London. I thought it was because I had changed my laundry conditioner which has a powerful smell which stays with you forever. So that's gone! But there's no difference to the breathlessness. I've changed the Oxygen concentrator to deliver 2.5 l/min just to stay at about 94 - 95% levels.
I do wonder if it is the quality of air?
Have had three courses of Cipro 750mg for ten days each time, but there is no real difference. I am still producing copius amounts of phlegm (sorry about the description, but that's what we live with).
Best wishes
Thank you for your kind comment Jeannie. Dont let my condition scare anyone as I should not be so ill. I was diagnosed with Bronchiectesis as a small child and I purposefully lived my life as though I did not have a disease because I so wanted to appear 'normal' regardless of constant cough and trail of tissues. For the most part it worked for me, but now it has caught up. I feel very blessed to have got this far. I think my biggest saviour was cutting out all dairy and wheat products most of my life...any cloggers..even rice.
Hi Sparkright You are so right about the weather I live in NW London, so much the same as South London Today it is much cooler, so I am breathing a bit better, but I would like a bit more energy. Did you get your Oxygen concentrator from your doctor, I have nothing like that. Only a puffer which is next to useless for broncheactesis
Hi Marion
the concentrator was prescribed by the hospital. Unfortunately, the GPs are not allowed to prescribe home Oxygen. In addition I have a portable oxygen cylinder which I fill up before going out. All very useful.
i am off to see a consultant today to see if my breathlessness is related to some new complication!
best wishes
Hi Sparkright
I am also on home oxygen. What system and make do you have? My partner is sometimes disturbed by the noise of the machine and he says there is a strange smell that could be the oxygen or the machine. Has your solution got any of these problems? He is coming to the UK later this month and wants to research better options.
Hello Pomodoros
The Oxygen tank that I have is liquid oxygen. I fill up a portable oxygen container made by Helios, and the model is Marathon. We find this easier to handle than the metal Oxygen tank, which was heavy and cumbersome. The Helios product has both continuous as well as a on-demand option, so can easily last for about six hours. However, the downside is that the oxygen evaporates and this empties the tank overnight!
The main concentrator is made by Invacare, and the model is Perfecto. This is much better than the first machine we had which was noisy, and had started to smell. When the engineer checked it out, he found that the chemican catalyst that extracts oxygen had leaked, thus giving less concentration as well as the smell!
We also have a portable concentrator that can be used in the car - this is made by Philips (model Respironics) - a really neat machine.
Hope this helps.
Your reply is very helpful. I have the Millenium M5 Respironics that converts the air into oxygen. It is also very noisy and last night my partner noticed a smell coming from it. I have not got any sense of smell so am in the dark in that area. Regarding the odour we have been trying to figure out why. I wonder if it could be the same explaination as yours and may explain why I do not seem to be benefitting from the oxygen as I was. My fingers and lips go blue quicker when off.
My partner had put a blanket over the machine to muffle the sound but I am sure this was not a good idea.
Either way he will be in the UK soon and will research the wonderful options you have given me. Thank you for taking the time to give me such important information.
Life becomes such a fine blend of elements.