Struggling to deal with constant infections

Chest and lungs
1

hi there I'm so glad I went on to this website and read everyone's stories.. I've had COPD for about 4 years now,, for the past 15 years there hasn't been a year that I haven't went down with plurisey and pneumonia,, last October I came down with my usual chest infection,, went to the doctors and got antibiotics.. 

Finished my course went back to my GP as there was no improvement,, prescribed another course,, again no improvement..

i was on my 6th course then he arranged for me to go for a CT scan.. I was diagnosed with Bronchiectasis in December,, was given doxycycline,, different inhalours and appointment to see chest physiotherapist who taught me how to clear my chest..

for the past 6 months there hasn't been a week went by without me catching another infection,, I normally get one sometimes two good days out a week

was at my follow up appointment last Thursday and told her that nothing seems to be working,, I got a letter from her to take to my GP to say I've to be prescribed Carbocistiene...

Today all I have done is cry,, I'm 52 I live on my own and I would be telling lies if I said I'm not scared cause I am as there's day's go by I  don't see anyone and there's times I'm so weak my temperature is so high I can barley lift a phone...

having this condition has made me feel so alone,,, I don't speak to my friends as much as I used to,,  who wants to hear someone say 

"" I'm not feeling good ""

i am a strong person though was starting to give up on fighting this condition...

reading your stories has gave me that fight back and I would like to thank you all for that

lorraine

2

I just want to wish you well, and say don't give up, as hard as it may be. From time to time Bx will win its little battles but you can fight back, For me Azrythromycin made the difference. However Bx is winning one of its little battles, even though I claim success. Two pneumonias in two years is proof the chest is a weakness, a weakness always exploited by those simple head olds, that pass along. Now with a new illness, a brain tumour, not a good one, I thought at least no Bx. Now, a simple head cold ( lots around here right now ) and I am fighting the Bx too. One odd thing I discovered was that years Inwould be prescribed prednisolone with any acute attack, yet improvements never occurred until Inwas almost tapered off the steroids. Strange but I always thought steroids actually increased the phlegm as if steroids upset a gentle balance. Azrythromycin waded in with its different anti-inflammatory method. Now, because I am on massive steroid does for the grad ( known as Dex for short ) that , with a mild infection from the head cold, has upset the balance again. The very drug, a steroid, that should help is actually aggravating it. To Azrythromycin or not, with my rescue pack is something to grapple with. Brain  tumours and Bx, in the same sentence will press my GP to decide.

so, Lorraine, keep up the battle, get your GP on side, and know there are others thinking of you

3

Lorraine, you have to not give in to this phase of your illness. I have heard of many stories here on our site and have also expeireced I believe exactly or somewhay what you are  experieincing. What i have done is learned as much as I can, and am still learning and then begun to act on all of this. 

I still have days when I'm exausted and that is unpleasnt, but I see alot of reason to keep myself going, though it is not at the level I was used to before all of this started. And it's still a work inprogress. Men at Work.

Somedays I  do feel what you are talking about.

Some of our members have had BRX for years and are managing.

See all the doctors you can like Infectious disease and Immunolog, etc.. My infectious disease doctor has made it clear that he will put me in the hospital in a New York second if I beging to run high fever, becasue I have some rather unplesant guys habitating my lungs.He also put mt on a six months dose of Azthromycin, which is helping.

Keep your freinds close is a good idea, they will help your spirits stay rosy.

Best of all thihgs,

Russ

Lastly, if you are feeling really sick, I think you should find out why. 

There are lot of people our site that will help guide you. 

You reached out to us. You made the first big step.

4

Hi, Lorraine,

I'm sorry too that you are feeling alone with these conditions. However, I agree with Russell who said pretty much all the right things and all I can add in a different way is to just tell you to build up your immune system and since you have gone back and read all our stories I'm not repeating mine again as I know they'll kick it out for repetition but check out what I do which has cured my pleurisy which I had for many painful months years ago and never got it back and got rid of bacteria without using antibiotics because like Broadsword earlier said, they upset the balance of things and you don't feel so good.  Like you and others I stay home most of the time, someone else runs errands and I don't even make phone calls because one day years ago shortly before I was dxd with COPD my son asked me on the phone 'what's wrong with your voice, Mom' and I don't know what I said but my voice today is worse as it's hoarse and scratchy. But somehow I pull it together when I have to go out.  You can have somewhat of a social life and others do I have read, but  you time yourself with your inhalers and everything you have to do to make yourself OK to go out. (I know you have to get feeling good first).  Sometimes it takes me a whole hour just to do everything necessary to go and get my vitamins, supplements, glass bottle of water (no plastic), meds etc. to take with me so I'm good for whatever comes.  Somehow whenever I go out I'm fine.  I suffer more at home and not in other places which is strange. I find eating helps a lot of symptoms and when I go out it's sometimes to eat so I'm good.  I don't think your friends would be turned off if you told them why your condition makes you feel 'bad' or feverish or coughing or whatever.. I say yes at every invitation so I'll continue to be asked as I don't want them to give up on me.  They are your friends and care about you.  But first you have to build up the immune system with supplements for one, good diet, you know what to do because you've read all these stories.  Some of these suggestions will prevent you from getting infection in the first place.and then u don't need antibiotics.  Find a natural doctor instead of a medical one or there are both - just find one that practices alternative medicine and he can advise you how to build your immune system. I've not taken an antiobiotic at all except for one incidence and I was stupid and could have prevented it and didn't.  But I don't get infections so far as I can tell (ie no fevers or chills or feeling bad) with Bx or COPD or Asthma so I know it can be done, and by the way take Probiotics as long as you're on the antibiotics and then hopefully you can get off them and get slowly stronger so you'll start to feel better emotionally too.  Just take one step at a time and do something new every day for your condition and see what gives you results.  That way it will give you a goal and force you to do something different.    I read everyone's story and copied and pasted all their remedies and printed it out.  It's 2 pages.  And as I try something I check it off or make a comment and I feel not so alone with my conditions now and feel closer to the people I've talked with here and I know you will be feeling better pretty soon.

Let us know how you do and look for that natural doctor biggrin

5

Hello Lorraine

Gosh, I feel for you. I know in the past I've actually thought that being like this is not living, its hell. Have some faith in that you will feel better at some point and you will learn to take control and understand your body. You will try lots of different methods but you will find some that suit you. You will start to feel better than you do now and you will enjoy some of your days. You will get there. Just be a bit patient for now and look forward to a better future. Have you tried a salt pipe which I find does help you to breathe easier, which is a start.

Hope you feel a little better soon but don't give up on yourself.

6

I think how you feel at this time Lorraine reminds us all how we felt in the beginning, stick in there and do your research. Maybe there is a self help group within your community, sharing helps, good luck and keep in touch with us

Madeleine

7

Hello Lorraine,

Sorry to hear you are so low,don.t let it get you,stay strong by doing or at least trying some of the things we all have been saying we do,especially some of the alternative remedies to help with your Immune system.

As for the Antibiotics just ask your GP,by being on this site I kept hearing about Azrythromycin,alot and now I have been on it for 3 weeks and it has helped alot I take it Mon./ Weds,/ Fri. and it has made a big difference,but I also stay on courese with my Nebelizer.

Take your time and just see what works, but don't let this BX win,you will do just fine.

Best Regards,

Charlie 

8

Hi Lorraine,

As a COPD sufferer, I can fully understand what you are going through. The constant infections, breathlessness, sweats, weakness, fatigue, headaches, sleepless nights and emotional stress - awful. Unless somebody had experienced it nobody has idea how horrid it is.

Having been a ‘super fit’ sportsman it hit me very hard, especially as I also developed some serious spinal problems before the COPD.

Regretfully, I don’t think we can give out e-mail addresses, otherwise I’d be happy to offer you some obviously much needed support. Regardless, all I can say (which may be of little comfort) is that we are not alone (no, I don’t mean little green men)!, there are many others like us, and believe it or not some are far worse … yep it’s possible!

What I find helps is taking my dog for a walk over the fields (I live in the country), trust me walking is not easy for me, but it does seem to help my breathing …. despite feeling utterly shattered afterwards.

Keep your chin up Lorraine and don’t be fobbed off by your GP.

Regards.wink

9

hello lorraine

You really sound quite awful, I feel for you.  I have had Bronchiatesis for just over 10years, as you will have read there are quite a few of us.  Hopefully their support will help you.  I must agree with oldbloke taking the dog for a walk is beneficial,  I actually bought a puppy who loves going for walks.  I dont always feel like it, but I find that it

helps with the lung clearance when I come home.  Do you manage to do the  clearance?  The Carbo really does help to thin the mucas.  I have also found that getting  the antibiotics does'nt work without getting the steroids on the same prescription.  Keep on at your doctor.  Also find out which clearance psisiton is best for you.  I was taught to lie down on the bed, but after reading from other sufferers, i have found the doggie posistion is very effective.. Not very ladylike but hey if it works then so be it.  Best wishes to you.  I am 72 and still going strong even although I'm always out of puff.

10

I agree Marion, antibiotics and steroids are the best combination.  I'm struggling from a tooth abcess that has been draining for some months (despite the Dentist slapping antibiotics and mouth washes down me) it has infected my throat, oesophagus and stomach - thankfully the tooth is due to be removed on the 25th.! So I shall be one missing, at 71 it's not bad going eh!

Fresh air is wonderful, but takes a lot of will power when you feel so breathless and shattered, but it works, so do old fashioned remidies such as steam inhalation.

11

Dancing queen, well said.

Russ

12

Charlie, I started the Mon Wed Friday Azth. after you said what your schedule was. Easier to remember. How you been doing?

Russ

13

Tabatha, I'm back!!!! What rabbit hole did I fall into? Thank you for your great letter about NJH and for taking the time to put it all together. I see that you get to the "so many balls in the air" (in this case paragraphs) but you always get it together. You could be the Rick Steves of the Wonderful World of Living with Bronchiectasis. Concise step by step instructions. You took so much time to do all of that. It helped me immensely just seeing all the work you did to help me out.

I have NJH tucked in my back pocket for now. as I am still harvesting the positive effects from my recent life style changes.

Fatigue is still a problem, but it seems less so these days. 

I will write more later, I'm swimming in a gelatinous stream of platitudes rthis morning. Like what you said to Lorraine. This is good example of how we as a group help each other live a better life with such a daunting illness. 

Best

Russ

14

Marion, I enjoyed your post. I have a little dog also and he is very insistent on my attetion in getting him the proper exercise which does for me what you have said about walking your dog. (Also glad to hear that your dog does not affect your BRX.

I'm almost 69 now. There is still a young man inside of me that keep saying, "who is this old guy that I keep seeing in mirrors all over the place". It seems like a cruel joke, then I remember how much better I feel about my life now that I can look back on it from this point of view. It's a trade off.and a paradox all wraped in a riddle, but gee it's great to be alive. Even with a mess of an illness, its still a wonder.

Glad you are doing well,

Russ

15

Thank you Russ for your post.  BRX can be a horrible thing, particularly if you let it get to you.  It's there so I may as well accept it.  I do believe exercise helps a lot. I can't do any gym type thing, so walking is easier. Even if I have to walk slower than the people around me. My daughter is a runner and my grandchildren seem to walk fast.  It's quite hard explaining to them why I can't move as fast as them.  To me it's like running and getting out of breath,but then feeling like that all the time after any exertion .  Has your breathing gotten any worse over the years ?  I read a brilliant way to hide the wrinkles.  "When you look in the mirror take your glasses off" keep young 

16

HI PETER I IN SAME BOAT AS YOU LOL. JOIN COPD UK. ON FACEBOOK AND OTHER GROUPS  LOOK AT HERBS TO TAKE AS WELL AS MEDS. ALSO SALT PIPES --AND  ONE  HERB THATS INTERESTING IS ICELANDIC MOSS. !LUCK P!  KEEP FIGHTING LOTS OF INFRO OUT THERE  GOOD  LUCK PETER

17

Hi Lorraine,

So sorry that you are feeling this bad. I have read all the posts and what wonderful advice all around. I hope some of it can help you. Try to remember that everything always changes. So now that you are feeling so bad, you will eventually feel better. I am rooting for you and thinking of you.

All the best,

Ida

Ida

18

Marion, thanks for the letter back. I am making a big effort to get back to my normal level of exercise jusr a few months ago. I have a stationary bike that is qit great and is right next to my bed, that make it easier. I can listen to Richard Attenbourgh on Netflix while I am evercising.

Sorry your grandchildren don't understand. I was talking to an old freind tonight and we both realized how much we did not understand what our parent's behaviors or illnesses ment. I had not realized that. Maybe it is the same for them. So far I do not have shortness of breath, knock on wood. How is your SOB? 

I have used the glasses off trick and works. I just want to reverse time.

I keep thinking of what it was like when I was even 40 or 50. Maybe I should where sun glasses in the house.

It was good hearing form you. Keep me posted on your progress.

Best

Russ

19

So sorry about all you are going through. However, it's very encouraging to hear how well you are handling both your Bx and your tumor. 

I hope by now you have gotten some good advice from your doctor and are doing better.

Thinking of you and everybody here who are struggling,

Ida

20

Hiya, Boy what a change taking this Med I feel 100% better then I have in the past 3 years just got back to the states going to see the doctors soon.

Best,

Charlie