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Alone in America

Posted , 9 users are following.

murphs
murphs

I've been reading these discussions for 2 months now and am so happy that i found this website.  I felt really alone after being diagnosed with something that no one had ever heard of , near me.  I was diagnosed with bronch after finally have ct scan done.  I had been sick for 3 months.  My GP had said to me a few times that she was just trying to keep me out of the hospital. I had been on tons of steroids and antibiotics before  CTdiagnosis.

Went to a pulmonologist in Feb and she told me that i had bronch and asthma.  She has me on nasal, oral, and eye allergy medicines and a steroid inhaler.  She told me to come back in 6 months and don't panic when I go online to read about this disease that i have.  I did panic.

She didn't tell me how severe it was.  I still cough alot.  Sometimes I get super tired. AND now I feel like I have a new cold, which is a little scary. 

I am a nursery school teacher and i love my little students but realize I shouldn't go back to it next year,  because they are always coming in literally oozing germs.  Which I'm pretty sad about. sad

Anyway, I have always struggled with my sinuses and CF was never brought up.  No sputum tests.   I did have a routine blood test , maybe that checked for CF?

I have had numerous cases of bronchitis, lung infections, and she thinks whooping cough.  So that part makes sense.

From reading your discussions it seems like I should have been told more.  What to do now that I'm getting sick again.  I don't think even the specialists know alot about bronch here in the states.  

I also have those lung nodes butnot even thinking about them.

Also If you have Bronch do you automatically have asthma? 

FYI, I'm 53 am pretty fit.  Like many of you, people always say I look good even when I don't feel well.

                  Thanks for reading this!

 

4 likes, 51 replies

51 Replies

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  • lesley05714
    lesley05714 murphs

    Posted

    Hi, Just a thought about boosting your immune system...I have been juicing every morning to reduce inflamation and boost the immune system, just giving it a try;

    5 carrots (1lb weight)

    1 green apple

    1 stick celery

    1 raw beetroot

    piece of tumeric,

    piece of ginger

    wash everything and juice...I have a glass with my husband every morning, you can adjust the amount of ginger for a flavour that you prefer.

    Blessings,

    Lesley

    • murphs
      murphs lesley05714

      Posted

      Hi Lesley,  I wil try that!  Must get a juicer, I have a blender but I don't think it's up to raw carrots.  Thanks for the great idea!

      Do you use probiotics?  I'm thinking about taking those also.  

                     Thanks ,      Wendy

    • lesley05714
      lesley05714 murphs

      Posted

      ...I have used probiotics, they replace the good bacteria that antibiotics kill.

      I am thinking the juice may help to reduce the inflamation in my lungs, and it builds up the immune system. (also great for fighting cancer). You are right, a blender is different than a juicer...juicers are made for the job, but get a good one as you get what you pay for, as always.

      Blessings,

      Lesley

  • charles60050
    charles60050 murphs

    Posted

    Unless you are really poorly dont give up the job as a teacher.I myself love my work(as a nurse) and have not felt the need to give up.Perhaps I may be wrong but we are all living in a too clean society and a few germs will help us to boost our immunity.Stay away from viral diseases like flu and measles and chicken pox but simple colds will be always around.You will probably develop an immunity to the childrens "germs" but if you give up your job you may soon become more depressed at leaving.You need the day to day activity to help you stay "sane".

    I can remember going potatoe picking with my mum when a child in the 50's and in the fields we were unable to wash our hands before eating our sandwiches sat next to the potato sacks.The only bacteria you need worry too much is the bowel bugs which cause all the problems in wounds and bladder and food poisoning.

    Good luck  Murphs.

    • murphs
      murphs charles60050

      Posted

      Thank you Charles,  I appreciate what you are saying and I will miss the children very much,  it makes me sad to think about it.   They sit on my lap and hug me, say the cutest and funniest things, and I love it.  4 year olds.  I've had this age-group for about 20 years.  But they bring in flus, stomach bugs, you name it. Their parents send them in sick,  they really do.  It's insane.

       Every year I've been getting sicker for longer periods of time.  Now that I have been diagnosed w Bronch I know why it takes me so long to get better.  This year I was out for 3 months. I've been back for a month and now have another lung infection.  I feel afraid sometimes.

      I'm going to finish out the year and then really focus on my oil paintings.  That's got to be bad too, but I keep room well ventilated.  I play the piano, and love to garden.  I will try to keep busy.  Maybe get another job.

      Thank you for your insight Charles,  you're right.  I'm just afraid.

  • mizsuzyq
    mizsuzyq murphs

    Posted

    Murphs,

    You have got to get in touch with either National Jewish Hospital in Denver, CO. or Beth Isreal on east coast.  Also, the Cleveland Clinic. These places have wonderful doctors that deal with our folks like us on a daily basis. They come from all over the world to these two places. have your doctor refer you to one of them. If you go to National Jewish, it will be a least a ten day stay and they will put you through all sorts of tests like you can not imagine.  They have classes you can take to learn how to deal with this and how to destress.  Stress is a bad boy for us.  Pleae contact them ASAP.  

    • murphs
      murphs mizsuzyq

      Posted

      Mizsuzyq,

      I'm a train-ride away from Beth Isreal.  That's really good to know.  I have mild bronch in both lungs,  it'd be great to keep it mild. I will definitey ask my pulmonary doc in August.  I'll check it out ,  thanks!

       

    • mizsuzyq
      mizsuzyq murphs

      Posted

      Murphs,

      Just checking in to see how you are doing. Have you talked to your doctor about Beth Isreal?  Have you gotten any of the breathing devices to help you  clean your lungs.  Also, once in awhile when I get so tired of coughing up this stuff, I finally have my doc go ahead and do a bronch scope and he washing it out and I can breath easier for a bout 4-5 weeks, still cough, but breathing is better.  

      Take care and let us know how you are doing.

    • murphs
      murphs mizsuzyq

      Posted

      Hi Mizsuzyq,

      I've been feeling pretty good, thanks for asking.  I went to regular doc 2 weeks ago.  She said that hot showers would help loosen mucus and didn't seem to know much about breathing devices.  She also said maybe use cough syrup with expectorant.  

      She gave me prescription for Azithromycin to have on hand if I need it, also have to go back for ttap? and pnuemonia vaccine.

      Someone on our chat said that you can purchase a fluttervalve on amazon.  Should I use flutter valve everyday, even on a normal day?

      I'm going to specialist in August for recheck and will ask her about beth

      israel.  I feel well now and take naps.  Hired a lawn crew to mow my lawn but will still do all the gardening. Finishing out my school year.  Still painting , but with windows open.

      Take care and Good Luck to you.

       

    • mizsuzyq
      mizsuzyq murphs

      Posted

      Definitely purchase the Acappella Fluttervaluve. Adults use the green one. A good lung doctor will be able to show you how to use it. You should use at least 3 times a day. This will aid expelling the mucus.  A mucus mist will aid in thinning the mucus so it can be expelled easier. There is a specific way to use this device and it will teach you to huff instead of cough.  There are good videos online that will be able to assist you. I was told to do on back, not completed flat, on each side and sitting up.  Keep active as much as you can to work those lungs, you don't want to tote a tank around. Swimming is good, too.  
    • murphs
      murphs mizsuzyq

      Posted

      I'll look to see if I can purchase one online now, and  then bring it to my next appointment w specialist in August.  I drink a ton of water in the morning and cough up a lot of mucus, luckily not bad color.

      Some days I feel great and then other days I feel so exhausted.  Really exhausted, even though I'm not having a flare up.  Is that how it is for you?

    • mizsuzyq
      mizsuzyq murphs

      Posted

      Hi Murphs.   

      Yes, you will feel tired even without the flareups.  One of the problems is that our oxygen level is lower at times.  You might consider picking up one of those finger oxygen levels they use in hospitals from Walgreens or some other pharmacy, relatively inexpensive. Our oxygen level should never get below 90. However, we probably will never have 100 percent either, even healty folks do not read 100.  Probably somewhere around 93-97 percent is very good for us.  Also, lack of sleep due to coughing will make you feel tired and when we get run down, we open up the doors for flareups, so it's important to rest when you can.  Also, very important to keep your activity up so our lungs do get worked. Swimming is very good for us.  Oh, if you purchase the acapella device, green is for adults. I am supposed to use 2x daily.  It's very important to be shown how to use correctly so your lungs get the full beneifit. Below is how I use it, but you should be able to see a video on this online out there somewhere. They showed me how to use it correcly when I was at National Jewish Hospital in Denver, CO. When I was there, they had folks coming in from all parts of the world.  

      The thee little bumps is the feet and consider tha the bottom, always keep them down like they are standing on the floor. 

      1. Inhale deeply and hold for count of 3 then

      2. Exhale all air out of lungs slowly throught the device

      Do the above ten times (you can feel the vibration and it will be hard to keep from coughing)

      After the tenth time, huff three times and then you will probably cough. 

      National Jewish had me do this in sitting position, lying on each side and back with a little elevation.  

      Let me mention that you don't want to cough really, really hard because this can damage the bronch and treacheo, which in my case did lead to another issue: Tracheobronchomalacia or TBM. 

      You do not want to develope this condition because then it's really, really hard to expel the mucus, which can cause bacteria and mucus plugs down there and will have to be scoped out.  It's a mess!  

      This is for everyone out there:  One of the doctors from The Cleveland Clinic in Ohio, USA, had me purchas "The Vest"  In my case this had really helped keeping my mucus loose.

      Well, I've rattled on enough for now. Take care and let us know your progress.  

  • petered
    petered murphs

    Posted

    It is something that does flare up every now and then. The worst thing is to panic, and worrying will not help. Having it myself I learnt to read the signs of a flare up. The best thing you can do is when an infection feels like, it is starting is to get an antibiotic. Whether it be IV or oral, keeping things under control will take time.
    • murphs
      murphs petered

      Posted

      Thanks Petered , I feel calmer and better lately.  

      Stay well.

  • charles60050
    charles60050 murphs

    Posted

    "Oximeter"  or pulse oximeter  is the finger device for measuring O2 (oxygen) saturation levels in blood and as mizsuzyq   suggests should be higher than 90% .The lungs sort the oxygen out but please bear in mind that if you are anaemic (which can happen with lots of chronic illnesses) this also will cause or add to having a lower oxygen saturation rate.  The little meter is eassy to use but please dont get bogged down with too many gadgets.Live with the disease  and dont let it take over your life.Perhaps my situation is mild because I dont use a salt pipe or flutter valve but I manage but I am trying to be open minded.I work partime now but was working fulltime until I reached retirement age. Good luck.       
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