I have COP/BOOP

Well as I start this process, I find myself in unfamiliar territory. My name is Nadine Harder and I live in the UNITED STATES, Muskego WI, I am married and I have 1 child. I have COP / BOOP. I was diagnosed in 2007,with a pulmonary wedge of the rt. lung. This was in October, so the following October because I was having SOB,and still struggling. I have been having trouble with this since I was diagnosed. I have lost my job, I have been to the Mayo Clinic, and now I am on my 4th pulmonologist! This is crazy! I am a Respiratory Therapist by trade, and working for 20yrs in this field I have never treated, to my knowledge, anyone with this. I have never had conversation with anyone who has this. I have worked at most of the hospitals in the greater Milwaukee area. Thanks for letting me babble, Nadine Harder

17 Replies

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  • Welcome to the forum Nadine. I hope we can help in some way.

    I had to Google " BOOP " as I have never heard of it before so I'll put a link up so others can read about it.

    en.wikipedia.org/wiki/Bronc...

  • Thanks for your reply, do you have COP?

  • Hi Nadine

    A very warm welcome to you, although I am sorry you have these health issues. I don't have COP/BOOP but I am hoping someone will come along and post soon. In the meantime you may find it helpful to talk to the specialist nurses at BLF, who you, I am sure will find very helpful. I am aware you are in the USA and may prefer to email.

    Telephone: 0207 688 5555

    Email: enquiries@blf.org.uk

    cx

  • Thanks, Nadine

  • Hi Nadine and welcome to this forum. Was your BOOP treated with steroids ?

  • Yes it was, the 1st time I had a difficult time weaning off, even if I would decrease 10mg, I would go right back into it. And 2yrs ago I had prednisone toxicity, so now I can't have steroids ever again.

  • I read the link the night you posted and saw that the treatment involved huge doses of steroids over a long time. That must have been so hard to cope with - the treatment and the disease. I developed steroid myopathy as well, from much lower doses but way too many courses of them last year. I still have a lot of weakness and wobbliness in my legs and find it hard to stand without something to lean on. I have bronchiectasis but for about a year now, my condition has changed. I get regular exacerbations but no longer cough up sputum. Lab tests show no sign of infection but I have to take antibiotics every few weeks. To be honest when I read the link about COP, it made me wonder if this was what was happening to me but I don't have weight loss or fever. Just pain, weakness and extreme sob. Since my last hospital stay in November 2014, I've been taking Amitryptilin along with my other meds and it seems to be helping.

    How is your condition being treated now ?

    I hope things improve for you soon and that you get some support here.

  • Right now I am in an exasperation and have been for about 6 weeks now. Thanks for asking! I am on Tudorza, and antibiotics. I did catch a Respiratory virus that my daughter had, about the same time. I usually don't have a cough, but that is what I have been doing for over a month now. So I have been coughing so much and hard that I almost pass out. So my pulmonologist has put me on Benzoate Pearls, basically Lidocaine. I'm having a difficult time right now....

  • What you're going through sounds terrible. Sending you as much positive energy as I can. Take care Xx

  • Thanks, Nadine

  • Welcome Nadine.

    Just wanted to say hello, you've already been good advice contact BLF nurses. Hope you find some answers.

    Kim xx

  • Nice to meet you Nadine. What a terrible irony working as respiratory therapist with so many then getting dxd with pulmonary issues and now COP/BOOP which i too had to look up (thanks Puff)

    Like many here i have copd and Im sure you'll have worked with many copd patients yourself.

    The Mayo clinic has a pretty good reputation but Im wondering when you say you're on your fourth pulmonologist.

    I can only say welcome and like everyone else hope you get some more information. And do try the BLF helpline; they are really good.

    Very best wishes :)

  • Hust a thought - there is a member on Bronchiectasis R Us from the USA who was a respiratory therapist for years who has PCD. She may have come across folks with your health issues. She is a most lovely helpful lady.

    cx

  • Hi Nadline, Welcome to the site, you have found the best site in the UK for COPD help. all the members here have been diagnosed with it, and we will try and help you as much as possible, the red balloon will take you to the British Lung foundation, should you require to ask a questions that a mamber cannot help you with. Neo.

  • Sorry everyone for not getting back with you, but I am sure glad that I have reached out to you! So for all those who have not heard of COP-BOOP before, it is kind of like having a permanent pneumonia with out the phlegm. I however don't cough with this. This is different from person to person, depending upon the person, some have only one exhasperation. But I am one of the lucky ones who have them anywhere from 1-4x a year. And when that happens I become very SOB with any exertion, however; if I am sitting I am just fine. Your lungs hurt, they feel like you have a tight corset on that you cannot breath against. It feels like you're being punched from the inside, out. And if I'm having an exasperation, I can't hardly walk a flight of stairs. You can't talk, you shake and your pulse ox drops rapidly. It does recover as soon as you are at rest. I hope that I have explained this. Also it is idiopathic, and to diagnose this, you have to have a pulmonary wedge done b/c a bronch doesn't give enough lung tissue. Weight loss, I happened to have lost 70lbs in a year. And now I am exhausted with doing a lot less than what I did before.

    Enough about me, I am looking forward to getting to know you all. It will be nice to chat with others who are in the same boat as me. As you know, if you don't look sick people don't think you are.

    Oh I forgot, they only discovered this is in 1985. Like I said, it will be so nice to get to know you all, so as for now I am going to to say Thanks, Nadine 😊

  • Me too! Diagnosed Jan,2015

    Just found heath unlock. Live 60 miles S of Chicago. I'm looking for the post saying his wife is taking vitman A and is improving. I take lots of meds and it feels like my brain is fried. Was doing real good a few wks ago, Now I've had a set back, almost like ground O again.has anyone taken vit A? Plus experience a set back?

  • I'm from Canada and my father has Boop/ cop. He Was diagnosed ten years ago. It re occurs and its a constant battle of weaning off and then increasing predizone. He has never met anyone with Boop cop so im just looking for a community for him to connect with. I really think it would help him to talk with someone who has had a similar experiences. Please email me: jillian.lee@dal.ca

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