Newly Diagnosed - Living Alone

Chest and lungs
1

Good morning everyone from down here in Sunny (windy brrrr Southampton)

Question how many of you all with this horrible illness like me live alone and are struggling with this illness?

I'm 62 recently diagnosed and had been struggling with a productive cough for a little over 2yrs

I'm very which down today and quite tearful , have recently been in hospital on a 2wk course of IV antibiotics and felt not right but well enough to come home (according to the team) I've been home just a few days and now coughing again, congested, chest hurts, coughing hurts my ears (does it affect anyone else like this?) 

I do have an under lining sinus prob which I understand can be linked with the BX so if I'm not suffering with one I'm suffering with the other or both together!

I'm struggling with the clearing of my chest , looked at lots of Youtube tutorials and one member suggested postural clearing but as I do not have anyone to help me that's out of the question 

Sorry for sounding negative but I really am fed up and miserable today :-( 

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Hi Margiesgirl, I was diagnosed 2 years ago after 12 months of a productive cough. I used to cough constantly, sometimes so hard I vomited. I finally ended up in hospital twice with phneumonia. i have since seen a specialist and take symbicort turbo inhaler twice a day and i now have.it under control. I still cough occasionally and get infections but i always have antibiotics on hand. have you seen a specialist? go and see a physio for treatment that helped me get alot of the mucus off my chest. I thought I would never feel good again but I do. another way of getting up mucus is by huffing. you can google how to do.this and you can do this on your own. I hope you feel better soon. x

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Hi,

I too would recommend you have a look at huff and cough.

i was recently shown this technique. 

It is easier to get rid of the rubbish in your lungs.

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Hi there Margiesgirl,...Sorry to hear your struggling on your own ,i live alone also ,so i know how you feel ,but do not give up.... ask for help from your GP,...Physio is the way forward ,but family can help as well .get someone to give you a prolonged pat on the back ,it will help you ,Also ask your GP for Azithromycin it  kills the bacteria and really helps with the cough...hope this is some help to you ....Keep your chin up !!!.

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Hi margiesgirl

I'm new here also and still trying to understand how to use.

I have had so lovely messages from lovely people going through the same as myself which has made me feel less isolated.

I live alone too, my ex husband couldn't cope with me being ill so much and I think was frightened he would end up being my carer ha, had a couple of relationships but when they discovered my illness ( the coughing fits etc ) they ran a mile !!!! 🙈😀.

Anyway- I get very down too, so I completely understand. Think because this an illness you have to keep on top of EVERY day of your life it gets overwhelming.

I am 56years old and was born with bronchiectasis .

I feel I have lost friends due to my illness, think they get fed up with me if we have arranged anything then I need to cancel if I have an exacerbation, it's really tough, so many people don't get it even though you try to explain 😢 .

I also have sinus problems margi, have nasal polyps which makes it even most difficult to breathe for us 🙈.

I've been ill for 8 weeks and was in hospital over Xmas and New Year, to be honest I would rather be at home.

Do you have a respiratory consultant?

For my sinuses at the moment Dr has prescribed vistamethasone drops, sterimar spray and have been prescribed cetirizine antihistamines for many years. I am on a constant rotation of antibiotics doxycycline for a month then Clarithromycin then Amoxicillin and metoclopramide to help with the nausea.

I also nebulise sodium chloride (saline) it helps a bit in clearing the mucus .

Hope this helps, it's so repetitive but keeping the lungs as clear as possible is key....

Hope you get on ok, with this dreadful disease you "look" healthy on the outside and I personally find that's why there is a lack of understanding.

You take care xxx

P.s...hope I've not been rambling on too much 🙈

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Thanks for the advice re: Azithromycin alas I very nearly died last year after the most terrible reaction to this antibiotic (look up Steven-Johnsons Syndrome (uk) it's a rare life threatening reaction to this drug and others 

so now it is more challenging for my health care providers to treat recurrent infections...immungoblin therapy has been suggested but as yet I haven't heard any more re: this , regarding family sadly I have one daughter and she works full time , I fear life ahead is pretty bleak currently

 

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 You don't need to apologize for feeling exhausted and frustrated. We all understand exactly where you are right now. Saying a prayer for you that this is just an exacerbation, and not an infection, and it will pass quickly.  Postural drainage definitely works. Could you ask your doctor to assign physical therapy for this? Or is in-home care a possibility?  Also nebulizer with 2% saline solution is helpful. 

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So sorry to hear of your reaction to Azithromycin margi 😢 , it must have been so frightening for you, I hope you have recovered from that and I really hope they find something suitable that will help you soon.

That's another thing we have in common, I have one daughter too, she has a busy life with her own family. I am very lucky I have a granddaughter who is 4 years old who is such a tonic . My daughter and son-in-law work full time and I feel SO GUILTY and sad that I have not been able to help and spend precious time looking after my granddaughter because of this dam illness, it makes me very angry missing out on things like this. I hate to admit this but I actually feel a bit jealous that her other gran is able to do this, and spend so much time with her ,she is a lovely lady and i really appreciate her helping out but I'm so envious . Just love it when i do get to spend time with her. She's at that age asking so many questions and keeps asking why I have a bad cough ha.

You sound very low margi, I have to take setraline an antidepressant as I was really struggling, I still get down but not as bad as I was before I went on them, maybe the Dr could give u something to help you cope. It's not just physically challenging but mentally challenging. I've been for CBT therapy but didn't really help.

Wouldn't it be great if there could be a bronchiectasis patients day one a year (like a support group) in the UK where everyone could meet up.

The better weather is just around the corner, maybe this will lift our spirits.

Sending you a huge hug xx

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Hi Sharn,

So sorry to read your post. I think it's quite a shock to receive this diagnose and take it all in. I recently said to my respiratory consultant that when I met her a year ago and was diagnosed I understood very little of what she was telling me. I did a lot of research, particularly on the British Lung Foundation website. You can even ring them for support and advice. That's where I found out about the Breathe Easy group in my area. 

You're not alone in this so do post and get lots of support. 

Janet 

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Margie, look for more videos on postural drainage because it can be done just lying in various positions. For lung pounding yes you need either a healthy human or a machine. I live alone and have a machine. My cervical spine cannot take lying with head hanging down off the edge of the bed.

Yes, being ill & living alone isn't fun but it's been my reality for most of 27 years. No kids, no family. I have quite a few other serious ailments & have bad pain every day in at least 20 joints so i get out less and less. Wouldn't make it without all the love & joy embodied in my lip. Well, him & faith.

It sounds as tho you could have a bounce back or new problem. Please call doc/nurse.

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I’m 59 and live alone too. Was diagnosed 4-5 years ago. Had polyps removed in sinuses and also diagnosed with asthma   My pulmonologist ordered a Hill-Rom Vest airway clearance machine I use daily after an albuterol neb which helps tremendously keeping lungs clear. I also do daily saline Nettie bottle treatments which helps too. Drink lots of water and get lots of rest when you need to. Don’t fight it. It’s not our fault   It’s embarrassing at times when with people when crap comes up when coughing  sugar free Ricola to suck on helps keep cough at bay when needed.  FYI. I’m in the states.  Stay strong.  I tell myself it could be worse when I get down.  I’ve missed so many outings due to bad days 🍀🙏🏻💕