Just to say I went to the Dr again yesterday. I’m waking up some mornings and have a job to take a deep enough breath for me to walk to the bathroom. I’ve practically fallen there hanging on to whatever I can on the way. It’s been quite scary. My ventolin helps after I’ve been to the bathroom but even then I’ve got a job to breathe the ventolin in. After about five minutes it gets a bit better. I’m still breathless all the time and still weak. The Dr examined my chest and apparently I still have the crackles in my left lung. She took a blood test and I went to have another X Ray today. I probably won’t know any more until Monday unless they are working tomorrow. I think they now work Saturdays and three evenings a week.
I also went to have the camera into my stomach as I’ve been experiencing pain there. I was amazed when he found nothing there. I even saw on the screen that it is very healthy. It’s good in one way but it now means they have to look elsewhere. The Dr that did the procedure thinks it’s probably referred pain. Muscular skeletal or maybe gall bladder. The trouble is it’s all come together.
My question is. Is there anything more I can do anything to help me breathe better when I wake up in the morning. The Dr said it would be good if I could lie there for a couple of minutes but that’s impossible because as soon as I wake I need the bathroom.
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Mavary
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Hi mavary, I do sympathise. After my pneumonia years ago I use to wake up after a restless night and grab my inhaler.
I have looked back over your previous posts, and see that you have been treated with various antibiotics but still have crackles. Hopefully with blood tests and a sputum test they will find the right one.
I was helped by new GP who managed to prescribe the right antibiotic and a much longer tapering course of prednisolone......the red coated ones that protect the stomach better. I became less reliant on the Ventolin .
I know you need to visit the bathroom when you get up, but can you manage to sit for a few moments to breathe gently and maybe use your inhaler with a spacer first.
Maybe try wearing a pad for a while in case of accidents.
I was wondering what preventer you are on, I had to try a number before I found one that was ok for me.
I am keeping my fingers crossed that they sort out your infection soon, can you be prescribed some Fortisip to help regain your strength too.
I’ve got a feeling it’s going to lead to steroids. The Dr took a blood test on Thursday and I went for the X Ray yesterday so I’m not going to get any results until Monday now.
It’s this morning thing that bothers me. I wasn’t too bad waking this morning. It’s not every morning. I’m usually a bad sleeper but I think yesterday tired me out. I slept for nine and a half hours. I drove myself twelve miles for an X Ray. It had taken me all morning to get ready. I’ve just got no energy.
I had prednisone in hospital with pneumonia for a week- when I came home the dose was slowly reduced. Then I felt breathless for a few weeks and someone told me ( not the dr of course ) that when you take prednisone your own cortisone supply stops working ( to a degree I think). So when you finish all the tablets it takes a while for your own cortisone to kick in again. I didn’t know this till later but wish a dr had told me!
I knew it was something like that Mardi as my Mother took it for Sarcoidosis. They told her she would never come off them but she was determined she would and did. Knowing what I know now I think she was a bit silly to do it. But my Mother was a very determined person.
Unusual to have to taper pred after just one week Mardi. Even two Im told is ok without, though myself I always do taper after two just to be sure. Generally though after just one week our adrenal glands shouldn't be affected and shouldn't be producing less cortisol. That's what Ive always been told and read too, but we are all different.
When I went into hospital a nurse or dr said 3 lots of 50mg prednisone over 3 days and you don’t need to taper. When the specialist came floating in (with her red hair flowing like someone from Riverdance) she said you must taper or your lungs might not work. So taper I did. 😏
I was on some antibiotics as I was getting worse and had a temperature of 38.2 for two weeks -Iive with my family but when I said to my daughter about the temp she shrugged her shoulders- jeez- finally I went back to dr and she said go to hospital and don’t go home to get clothes first! Probably worry about sepsis do you think? My daughter got a big shock - they are SO busy these days at work with 3kids under 10.
Sepsis or just worsening pneumonia. It's often hard for people close to us to realise how dangerous our condition can be until they see an emergency actually happen. Your daughter probably won't be so complacent next time.
Yes, 2days before I had to pick the kids up from school and felt very weak and in the parking lot I took a lump of wood off a fence with the side of the car 🚗- I was going very slowly. I notice you have secondary polycythaemia- I’ve had primary polycythaemia for 4 years - PV They call it- ten weak chemo tablets a week and baby aspirin is keeping me very well. People under 60 have phlebotomies- everyone is different- sons are very ill. Your haemochromotosis sounds a pain in the neck - heard of it but didn’t have a clue what it was. I wonder about pneumonia causing PV.
I don't know about pneumonia causing PV - Maybe someone will come on with info. They don't do phlebotomies for secondary polycythemia but I have now had two done for the haemochromatosis as apparently my iron levels shot up after having pneumonia. Pneumonia is responsible for so much rubbish. Anyway I love my phlebotomy nurse and it's any easy way to stay safe. Im 72 btw, so the 60 year old cut off for bloodletting can't apply to haemo.
I also felt tight across the chest for a few weeks.- However after a few weeks I went back to my ice skating group - started learning at 64- until I fell over on my back too much and had a severe pain but only for 3 weeks. Didn’t go back after that!
I would love to think I could do something like that but the way I bruise with taking steroid inhaler I would be black and blue. When I went to have the camera in my stomach I went with my Son. I felt a bit wobbly walking along the long corridor so I went to hold his arm. He was carrying a duffle bag thing with his work in. He thought I was going to be a couple of hours which I was. Anyway as I tried to thread my arm in his I caught my arm on a buckle. I now have a bruise as big as a tangerine.
Morning Mavary, have you tried sleeping propped up? Obviously it means that all the muck stays at the bottom of your lungs allowing possibly enough breath to make it to the bathroom and back and then you could start your meds. Just a thought. Take care.
Yes! I do sleep upright. I have for the last few weeks. I don’t like it but needs must. I get a bad head sleeping upright.
Hi Mavary
It takes a while to get back to normal.
Hope they find the right treatment for you to clear that lingering infection.
Do you have a spacer or aerochamber to take your ventolin? That would make it easier.
Do you have a nebuliser and nebs at home? I would ask for one if not it helps to bring up the leftover mucus which lays thick and low in our lungs.
Also I have a kettle by my bed now so I can have a cup of tea to give me strength..
Boiled or glycerin sweets help..
Take your time, sit up slowly, inhale as deep as you can without forcing a couple of times, exhale pursed lips and when you feel stronger get up slowly.
Keep your phone with you in your dressing-gown if you live alone.
No! I don’t have a nebuliser. I’ve never needed one before and it hasn’t been suggested. They are a bit concerned that I still have the crackles in my lung. Me too! I just want to get on with my life. I was going to clean my kitchen when my Neice was cleaning for me. I don’t like her doing it all and it’s only tiny. I did manage to clean the kitchen floor but that was enough for me. I hate being reliant on other people. I did put my kettle in the bedroom a couple of nights. Perhaps I will try that again. You really mustn’t encourage me to eat boiled sweets. I sat down last night and ate about six. I think it’s the only thing keeping my weight up to what it is. I’m a sugarholic and if it isn’t a word it is now. I just love sweet things. I’ve lost ten pounds and am now eight stone thirteen despite eating sweet things. As I say, getting up slowly isn’t an option. It’s I’ve got to go right now. I really didn’t think I would get there the morning before last. I thought I was going to pass out. This morning OK so keep your fingers crossed for me.
Ok I understand..Some days we can get on with our lives, some days we can’t. On those days don’t feel guilty, easy to say I know .
I know maybe people don’t clean the way you like it done and you don’t want to rely on your niece same as I don’t want to rely on my Bea but we are so lucky to get help when some lonely people have to fend for themselves.
Yes try the kettle again!! And never mind for the sweets for now. We need our treats and it helps with our cough and throat..sorry to say a chamber pot or a commode would help. I had one under my bed for years when we had an outside toilet at parents’in law in Kent.
I am certainly keeping my fingers crossed for you.
Take good care of yourself Mavary and let us know how you are getting on xx
It wasn’t so much I don’t like someone else doing my cleaning. She goes to work about eight in the morning. She’s cleaning a boys dorm at school. She gets home at twelve; has a quick lunch then comes to me for twelve thirty. She’s nearly sixty and I think it’s too much for her.
I don’t think I could get a home help as it’s only going to be for a few weeks. I think my Neice would be put out if I did as it was her idea to do it in the first place.
Mavary, I know what this is like! Ive had accidents because couldnt get there in time. Keep a pee bottle by the bed, or some sort of commode. Humiliating I know, but a better option.
Hi when you wake up and want to go to the toilet you automatically tense your muscles. If you consciously relax them you will be able to wait a minute before getting up and going. x
I wish it was like that. My bladder goes into spasm and will not stop until I go. I had my sigmoid colon removed eight years ago and my bladder was fused with my bowel. They separated it but I was left with the problem of having to go when I need to. It’s really annoying especially if I go abroad. This country there are loos everywhere. We are very lucky.
Given your specific physical situation Mavary, this may or may not help. I had physio for slight incontinence a while ago. The physio identified two kind of incontinence, stress and urge. (Stay with me here.) One is when your pelvic floor is stressed (coughing, sneezing etc), the other is psychological, e.g. door key syndrome like when you're getting home, opening the door and you can't wait even though you've been ok walking down the street, and you suddenly desperately need to pee. So the physio said that since this is psychological you can control it by talking to your bladder - yes, truly. Ive tried it and it works. You have to explain to your bladder that you are in control, not it. Seriously it started working straightaway. So that might possibly give you the extra time you need in bed to follow up on the various suggestions here, and might avoid the tensing up that Bev mentions above. Or a chamber pot might be a good idea as Fran suggests.
I quite agree that most of it is phychological. Like getting to the front door and you need the loo desperately. I can definitely relate to that. Drawing off water to wash up and I’ve also found I have the habit of when I clean my teeth or have a shower. I’ve had to get out of the shower soaking wet a few times now. I try to remember to go first but sometimes I don’t think about it as I don’t want to go. No matter how much I try, once it goes into spasm it doesn’t let go. I did go to hospital and they tried everything but it didn’t work. I had to go to see the urologist this year as I passed blood a couple of times and he suggested anti spasmodic tablets but I haven’t followed up on it nor did the Dr. It might be the way to go.
I'd give the anti spasmodic tablets a try too, if doctor thinks they might help. They worked well for me. That was for simple problems though and you seem to have a complex history.
After my bilateral pneumonia I found sleeping in a well supported upright position helped. Also I took Ventolin just before sleeping. I did not feel that breathless before going to bed but found that by taking it before sleeping it helped in the morning.
I do hope your doctors are really listening to you. Like O2 said a few days ago, with pneumonia it is important to get the antibiotic right and the dosage right. Perhaps you need to insist more with docs about these worrying symptoms you're describing?
I can only wait until tomorrow to see what comes up on the blood test and X Ray. I did have a bit of a problem this morning but not as bad as it has been. I was lucky that I could lie there for a minute or two to let the ventolin work. I’m not feeling too bad in myself now until I do something. I’ve got a weakness in my back that seems to come out when I’m poorly. I’m hoping to hear from my Dr tomorrow so watch this space.
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