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Finally found somewhere to talk!

Posted , 3 users are following.

joviswoman
joviswoman

Hey folks,

After coughing for over 10yrs I was finally, 2yrs ago, diagnosed with Bronchiectasis in my right lung right in the middle. I'm also an asthmatic. The phlem I cough up daily can be anywhere from white to dark green also hard sometimes, and lord my spit could hold up wallpaper yuck!

They did a bronchoscopy and from that it led to me having petechial hemorrhaging the day after and for months after I had what the dr's called PTSD from it as I kept waking up screaming no and telling them to get off me. That led to depression and stress. The consultant wants to do another one and I've told them no way in hell will I have it done again.

I'm so tired all the time and I've no inclination to do anything. The coughing is pulling everything which doesn't help when I slipped my disc a while ago.

I'm February I ended up off work for the month I had 3 differrent anitbiotics and steroids. It finally let up but I'm on a final written warning at work due to all the time I've had off with this. I'm so stressed that I'll loose my job due to this illness. I actually have co-amoxaclav on stand by now at home incase I think I've an infection starting, I can't have clarithromycin and any of the same group as I'm allergic to it.

I've had our OH department talk to me and in a letter they've qutoed the Equality act of 2010 but I've no idea why??? Anyone?

People at work look at me and can't see anything so they assume I'm pulling a fast one even though they hear my coughing myself silly most days.

The consultant is now telling me I've some sort of influenza along with the Bronchectasis that's knocking me for six all the time. Does anyone else have this?

I've looked at all your discussions and I realise I really have no clue to all the different drugs and ways to help with this, also I've no clue to what you're referring to most of the time, drug wise and symotoms that is lol.

Sorry if I'm waffling, it's just nice to be able to get this out. People around me just don't understand and I just need people who have this disease to talk to.

1 like, 9 replies

9 Replies

  • aitarg35939
    aitarg35939 joviswoman

    Posted

    Hi, and sorry that you've joined our little club. I'm in the States so am unfamiliar with some of those work references, but I understand how terrified you must be about possibly losing your job. That fear unfortunately harms your health, emotional and physiological health. Wish I had a solution for I know that telling people not to worry or be fearful in a situation of immediate threat is just plain dumb. You are under threat of losing work.

    If you were in the States I would suggest a chat with your pulmonologist. Explain that you're on your last warning. Since clearly s/he has nothing to improve your health, will he support you in a disability claim, starting with temporary then going to permanent if you don't improve. Over here, temporary only counts if one has private disability insurance (&it may not count even then). If he wouldn't help, you'd have to find someone else.

    Ask if you would benefit from prolonged rest. I don't know as I'd been on permanent disability after a long ago accident. I've only been diagnosed with bronchiectasis (BX) since November. Had COPD (chronic obstructive pulmonary disease), chronic bronchitis form, for many years & thought I was just experiencing an exacerbation or progression. Wrong! Since pneumonia last August, I have been on ABs (antibiotics) 8-10 times. Can't take many of the newer & stronger ones. I keep hoping to get through 2 months without another round ,,,

    We had a lively discussion a month or 2 back about the colors and consistencies of our phlegm. So NOT a conversation I ever thought I'd be in! The disease sucks, and you are absolutely correct that people don't understand anything about it. It is depressing, too. I was in a terrible funk for about 4 months, but I don't have the added work pressure you've got. I know that my disability check will come barring interference from that obscenity in the White House.

    Can't think of other acronyms we use, except that PR is Pulmonary Rehab, far more available in the UK than here; PT is Physical Therapy. Oftentimes you can google the initials & get the full words, or you can ask. People here are very nice & helpful.

    We are always here and we understand the rainbow hues if lung gunk.

    • joviswoman
      joviswoman aitarg35939

      Posted

      Hi and thank you for replying. It's just nice to have people who I can vent too lol.

      The AB's don't seem to really do anything. I've just finished 2wk course of AB's because of the underlying influenza they thinking I have. If I don't get any better then I'm heading into hospital for intravenous AB's.

      I think I've resigned myself to loosing my job and after 23yrs of service and to be frank they can puker up and kiss my butt lol. 

      I will ask my consultant about prolong rest but they seem to be focused on doing another bronchoscopy, which I don't want.

      I do PT every day, it helps mostly but on bad days I can't shift anything till it wants to leave lol.

      I lmao at the conversation on phlem colours as I class myself to now be an expert at it and can gross my friends out very easily and can explain the difference to any Dr or nurse who asks lol.

      I'm sorry for anyone who has this disease as it's so debilitating.

    • aitarg35939
      aitarg35939 joviswoman

      Posted

      Your reaction to the bronchoscopy is making me think twice about that. All of the ER/ emergency room or emerge department, equivalent to casualty, doc's plus in hospital doc when I was admitted, plus my GP/ general practitioner or family doctor kept asking about bronchpscopies and the saying that my pulmo would do one when I got one. Well he didn't so I asked last time I saw him. He said we'd see in September.

      Ha! I've got an autoimmune/AI disease which dries out my innards. Medical equipment often catches or tugs and wakes me from sedation ,,, I think I'm gonna pass on the bronchoscopy. Speaking of my AI disease, it is possible that it is the true cause of all my lung problems. Nobody here knows.

      There is a step short of IV/intravenous ABs: nebulizer ABs. Wouldn't hurt to ask as anything that keeps us out of hospital is a good thing. They'd get you a nebulizer to use at home. Next time I need ABs, I'm going to ask. But, thank God, I think I've gone a month! We are into our brief period of lower pollen counts/vicious plants, but slightly higher mold counts due to rain. If you're somewhere far North -- I'm in Texas -- you may be into your high pollen time and that makes everything worse for us.

      As you will have read, some people on here stay on year-round courses of ABs. Some take a ton or frequent rounds of azithromycin. That's a great strong AB, frequently called "Z-pack" in the States in reference to the small blister packets one gets at the pharmacy, and to the fact that people could only remember that there was a Z in the drug's name. Or at least that's all we feeble-minded Americans can remember, lol. And if November's election proved anything ,,,

      You've got a good sense of humor and that's going to help you. By prolonged rest what I mainly meant was a brief period where you didn't have to get up & out to work every day. Age also matters, but if you've also got influenza, I'm surprised that they haven't insisted you stay home. At the very least, they should be telling you to stay off public transit which, for many, means staying home from work.

      Hang in there!

    • joviswoman
      joviswoman aitarg35939

      Posted

      I think I had a bad reaction to the bronchoscopy as my father in law had to have one after I had mine and he said it was fine lol. So maybe you'd be ok with having one. I can have a gastroscopy with no probs.

      It's rediculous that in this day and age they can't tell you if your's is your AI or not!

      I'm in the East in the UK and we seem to get all the crap from the rest of the country blown on us lol which had us thinking a few years ago about moving, but after holidays over the rest of the country we've given it a miss as I seem to have it wherever.

      Though saying that we were in New Orleans last June and the week and a half we were over there I hardly coughed at all?!?!?!  Not sure if it's having AC in all buildings.

      I always try to stay happy/laughing at things, but I do say that's sometimes a mask I wear. But I AM trying to stay positive, but after the last 2wks I'm so tired and fed up I feel like crying. The coughing and the flying phlem are at their worst.

      I don't seem to have it worst in the hot or cold weather and the pollen doesn't seem to have a say in my health, but I am on a antihistamine's all year round.

      I'm 51 and a quarter lol. They haven't said I need to stay at home, even though I work in a supermarket that's like a sespool of germs flying around lol.

      I've made work clean out all the air and heat vents as they were FULL of dust. My consultant told us to remove all carpets from the house which we've nearly done because of dust too. But I'm not sure if it's made any difference.

      If I get really tight chested I get into the car as I've AC in there with a pollen filter and it helps a little. I don't have to use public transport which is a blessing.

      I'm hanging in there and thanks for the help.

       

    • aitarg35939
      aitarg35939 joviswoman

      Posted

      Medical tests, just like drug development & most drug testing up until the last 30 years, has all been geared toward men. They tend to be just fine with the newer, much stronger ABs, whereas a disproportionate number of women are the ones with adverse reactions. Tubes, sedation, etc., were designed for men so it could've been a breeze to your in-law and less so for you just because you're a woman. Not only do I have an AI which affects almost only women, I've battled endometriosis all my life. As you may guess, I have this huge soapbox for this theme. But right now I only care because I wish I could take these stronger ABs!

      The allergist who works with my pulmo is going to make me stay in the office while they try to get me to where I can use Zpack. I'm actually looking forward to that - 4 hours on a horrible chair with my epinephrine pen at the ready & the ER 100' away!

    • joviswoman
      joviswoman aitarg35939

      Posted

      I never knew that everything was geared towards men (no comment lol) I NEED stronger AB as the three they keep giving just don't cut it any more.

      I've always suffer with IBS since teenage and I've lots of reflux and pain in my stomach. It also took them several decades to figure out I needed my gallblader out.

      My sister from another mother has Crohn's and I've seen her turn from healthy to at the minute half the size she was, which was petite to begin with.

      So I don't mind soapboxes, I get on mind that often hubster says I'll soon need another one!

      Hmmmm......I think there might be a little sarcasm about that chair there lol. 

      I do hope that those 4 hours go quick and that nothing untoward happens and your bum doesn't get too numb.

  • Tatafanow
    Tatafanow joviswoman

    Posted

    I was only diagnosed last year after lifetime of chronic chest infections. Up until that point I worked in an office snd coughed constantly felt as though I had to clear my throat. Since being diagnosed and reading up, I am now aware that if I have the need to constantky vlear my throat there must be an allergen triggering my condition, the women wore certain perfumes that triggered bouts on one occadion I need 3 weeks off work. We also had fresh flowers in the office - I now know lillies literally will put me on my back for days so I have to avoid them like the plague, they were big on plug in air freshners too. Sadly I had to leave the job as I could not cope with the triggers. I am lucky enough to now have my own office but the boss came in with aftershave on yesterday that triggered brochiectasis and im off sick today - bit scared this morning as I was woken up choking on hard phlegm. I now avoid triggers like the plague, although inconvenient, especially when lillies are in public places like restaurants!! I have also learned to take my inhaler with me now as pollution from traffic triggers it too. It is horrible because I look absolutely fine until something triggers it.

    Avoid scented tissues, before my diagnosis I had a bout that went on for weeks and had steroids and was on the verge of being admitted to hospital and throughout the bout I was spitting phlegm constanyly into lightly scented tissues that I now know are actually a trigger. Sorry for long post but its my first x.

    • aitarg35939
      aitarg35939 Tatafanow

      Posted

      I have had many of the same triggers for decades before I was diagnosed with any lung disease, much less BX. Lucky for me, they caused massive migraines to begin with so I avoided them as much as possible. Later, they caused sinus infections which always ended in my lungs, aggravating my chronic bronchitis. It's been about 8 years since I could have lilies in the house but now I have to wear a mask in church when all the lilies are there & carry my communion bread & wine to the back of the church before I can remove the mask. A certain grocery store has lily festivals several times yearly and even if I'm wearing a mask, I can't go near that part of the store.

      I am surprised that no one told you to always carry an inhaler, and that you need to avoid stinkbombs of all sorts, from cut flowers to after shave to scented tissue. I haven't seen that stuff for sale for 10 or more years. You may have to talk to people at work and make it clear that your office has to be kept free of all perfumes/ aftershaves. I learned the hard way 20 years ago that there are a lot of stupid men who wilk keep trying to wear a gallon of aftershave in my car becausbanned i only banned perfumes & scented lotions.

      What I can't believe is

    • joviswoman
      joviswoman Tatafanow

      Posted

      Tha'ts how I started always clearing my throat. Then onto the coughing and phelm flinging. 

      Yes I've noticed that certain perfumes/aftershaves have a bad effect on my chest. I'm fairly lucky that all the people I work with don't have overpowering scents on them. But sometimes I get customers in that seemed to have bathed in the stuff and I end up heading off the shop floor to do PT to clear the sudden phlem from coughing.

      And my first post, this discussion, was fairly long too so if you need to talk just go for it.

      I just needed to get it out there.

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