Hi I have asthma I'm currently on 24/7 oxygen

Hi abhi3112, I have another lung condition as well but I have had asthma since I was 4 years old it wasn't always bad but over the past 16 years things have go worse in and out of hospital my oxygen levels were getting that bad that last year I was in hospital more than I was at home , I had type 2 respiratory failure twice last year and when I sleep I stop breathing I had sleep studys done as they were going to give me a bypap machine for sleeping with but they also noticed that my oxygen levels were very low so decided to give me , try the oxygen first and then I have to get another sleep study done with the oxygen to see if I still need the bypap mask for sleeping, I have not been in hospital since I started the home oxygen,I also have home nebuliser so I have my own little hospital at home lol, I know a few people with home oxygen, it takes a bit of getting used too I still am, it's a bit of a pain having something stuck up your nose constantly, but I will get there if it keeps me at home then I would rather that than in hospital, 

is it asthma that you have?

Yes, I have asthma too..I assume you are older then me as I am still 32. But I had a serious lung infection about 18 months back and I am still recovering. I am also a ex-smoker. smoked for around 10 yrs. I am feeling better then before. Hopefully will recover fully soon. The only thing that baffels me that no one was able to understand the cause of it as all of my blood tests came back negative. Even X-ray and CT scan came back negative. How old are you by the way ? Was your asthma always bad ?

Hi , I'm older I'm 46 years old, but feel about 86 sometimes lol , I have been in hospital and see women in therev90s fitter than me , lol ,

my asthma was never too bad the occasional visit to a&e but sometimes I didn't even need to use my blue inhaler, only if I had a chest infection, but when I was 30! I has pluracy and phnemonea and I know that not how you spell it but my fibro fog is bad tonight, anyway after that I just never seemed to get better I had to take inhalers all the time and was always needing steroids for infections and I was in and out of hospital, I used to smoke as well ,  I was given tablets as well as inhalers for my asthma trying all sorts if treatments but my constant just said I had difficulty to control asthma as it was not like it was only in the summer I was bad , I did have a few years when I wasn't in hospital at all but normally at least twice a year except last year from April to September I was in hospital 7 times I was starting to think that was my new home , but since I got home in October I have had a couple of chest infection but I have managed to stay at home, fingers crossed it stays that way , 

are you still having trouble with your asthma since the infection ?

Well, It seems like I am getting better now. the most troublesome is the pain around my chest. Sometimes I dont really realize if I am having trouble breathing because of this chest tightness and pain. The one good thing I do is play. Which really helps to breath better. I think playing has made my lungs recover well. I am hopefull to recover fully soon. Have you ever asked your doc about Lung thromoplasty ? It is treatment for sever asthma patients. 

Hi abh3112, I do hope that the chest tightness and pain get better soon , have you been back to your doctor as I know it's not good when your chest is tight and sore I tend to use heat bags to try to ease the pain , are you taking regular inhalers or other medications for this as it sound like you could still have a infection , 

i have not heard thromoplasty , unless it is like some medications that come under different names like singular is also know as montalukast , sorry about the spelling it's late now, I will take note of it as I have an appointment with my respitory consultant on th 22 of this month , 

take care 

loraine 

Hi abhi3112.

How are you keeping did you get bavk to the doctors about your chest and the pain,

I saw my consultant on Wednesday at the hospital he is thinking about starting my on the zolair injections twice s month instead of the mycrpheolate or he said that he might increase the mycrpheolate i already take 1000mg morning and evening thr side effects im getting used to nowvbut hechad me ho for a xray so he is going to have a look at thst and decided where to go next he is also chasing up for another sleep study to be done as i should have been for it by now it was requested in October but its at the actual clinic ehere the one i had done before in the hospital but he said it a more in depth study to see if i need the cpsp make on at nigjt as well as the oxygen. I have my own portable hospital getting.

I hope you are feeling better

Take care Loraine x

Yes me to aschm32186, it really makes a difference when its even brightet like today eben though I don't go out much I like to look out the window when its nice. I hope you are keeping well , oh i had a look at the thromoplastly online but I dont think its for me , but I will still mention it on Wednesday when I see my consultant? I am on unyphilione, montilukast, mycrpheolate, symbycort flixonase, plus my nebulizers and oxygen as well as medication for fibromyalgia oh the list is endless lol im a walking chemist. Lol

Hello again Loraine I have been reading other posts and noticed someone saying that she increased her exercise program and that she was able to not use her oxygen as much. I might give that a try too cause my daughter is making me exercise, so I will to keep her happy and maybe it will do me some good too. Good Luck 

Hi Aschm32186, I am sorry I never answered you yesterday I wasn't on the site i only went on when I read my emails , I was sore and tiered yesterday after my trip out the day before to the hospital to see my respiratory consultant, it always seems to take a lot out of me these days, i think it could be that I rush getting myself washed and dressed where normally i would just poter about and take my time and my daughter would wash and dry my hair, then polava getting the wheelchair and portable oxygen cylinder organised for the car well my partner does but he gets stressed out easily and I try not to cause him any more stress as he makes me feel on edge which dosnt help my breathing or fibromyalgia as stress agrivates both, I miss being independent where I would just get in the car and away no stress , lol .

It seems like for ever seen i was able to do that , I have become more and more realant on other and less and less mobil over the past few years even more since having the oxygen, i was always so independent and done everything for all the family so its was hard on them in the later 16years I have going from working full-time, single mother of 2 and very sociable to a hermit with very little mobility, I do have good dayscand im sure when the weather improves i will get out on my scooter and get some fresh air and met people who I have not seen all winter , I am on slimming world healthy eating to try and help as I have increased in size a great deal although the doctor said that my medication can weight increase but I have not really changed much of my medication except the increase prednisolone and im on a maintenance dose as well as the mycrpheolate this has been in the past year ive constantly been on steroids. And not smoking, I was eating through the night a lot when I can't sleep either because of the breathing or fibro, which is quite a lot. How ever in my first week i lost 11pounds in weight on my healthy eating so maybe oncevi have lost a bit more i can think about exercise but even walking around the house is an effort although there are exercise you can do sitting down,

My consultant is considering trying me on zolair which is a injection twice a month replacing the mycrpheolate as he isn't happy with the results he expected more benefit from them so he is deciding to continue with them and see if I can tolerate a higher dose or to srart me on the zolair im not sure if that's how its spelt I will have to look into it again as he had spoke about this injection 3 years ago when he discoveted that it was more than just asthma that was causing me to be admitted to hospital so much. But it took him a while before starting any treatment? I thought that he had forgotten about me but it was due to the fact he wasn't sure exactly what it was without doing a byopsi which he wasn't going to do as he doesn't think I am fit enough for it and the effect it can cause after so he was consulting with colleagues in other hospital over my CT scan. I had intravenous high dose methapregnislone 1 amonth for 6 month and on mycrpheolate low dosecsnd graduatle increase with weekly blood test dmards luckly they are now monthly.

So he had a xray done when i was in on Wednesday and he is going to look at that and chase up my appointment for the specialist sleep study as it was requested in October and I still have not heard anything, I asked him why i could not have it done there as i had before but he said its much more specific information at the sleep clinc. As I was only shown to stop breathing 20 times in the night they dont one but very low oxygen. So thstvmy medical history sorry I dobtend to digress and go on .

I hope you are keeping well and not exercise too much,

Takecare

Loraine x

Hi Aschm32186, you are lucky to have such a caring daughter, I have two daughters one still ar home but shecisca workaholic so I hardly see her although it is her slimming world books i have been using and I have got the app on my phone and i pad, I have a food diary app as well its good it counts the calories and fat carbs, protein. I takes time filling itbin but im getting quicker, i have tge doctor today as I only have enough orlistat left to ladt me until Saturday and i think I have the start of a chest infection, I have just been off antibiotics and high dose steroids i have been teducing my maintenance prednisolone one day i have 15 mg next day 10 mg abd continue alternative days from now on this is my consultant new idea to help me try and get back off them as there is steroids in other medication i take as well inhakers and mycrpheolate had corticosteroids in it as well so i will seecwhat the doctor says today.

Keep up the good work enjoy the gym.

Take care Loraine x