Keeping abreast of COPD

[Pookiesherlock]

Do you find that your doctors don't really know how to treat this disease? I have had several exacerbations brought on by being improperly treated when I get infections. I feel that if antibiotics and prednisone were prescribed sooner I would have less severe reactions. I wonder what this is doing to my heart.

[squady]

hi Pookiesherlock you should have an emergency it at home of preds and antibiotic and you should take the two together sounds like your doctor is not following this but a lot o white coats d not know a lot aboutcopd

[Pookiesherlock in reply to squady]

Thank you for your input. I replied to Jennifer-S that I have not heard of this rescue kit but it makes total sense. The nurse called today to ask me about setting up therapy. Imagine, over 10 years with a diagnosis and this is the first I'm hearing about so much.

[squady in reply to Pookiesherlock]

ten years change your doctor what stage are you on I'm on stage 3 severe with af caused by copd

[Pookiesherlock in reply to squady]

I have no idea what stage I'm on. I have had 3 hospitalizations as a result of exacerbation since 2013 with a couple of ER visits. I am on O2 at night for sleep apnea as of April of this year and just this week I am on it during the day as well. My counts were 86/106 when I went into the ER last week. I'm doing much better today at 90/76.

[squady in reply to Pookiesherlock]

thanks for the reply its a pity you were not given the proper advice you might have avoided some of the stuff you went through you have learnt to keep your eyes on your sats that's good mine never drops below 97 but there is a lot of times I could have to stop and rest

[Hidden]

Hello Pookiesherlock, and a warm welcome to the site.

Make sure you obtain a rescue package from your doctor and in the event of an infection , you will have Prednisolone and an antibiotic to start treatment immediately. Has your copd nurse or doctor mentioned Pulmonary Rehabilitation to you?

xx

[Pookiesherlock in reply to Hidden]

This is the first I am hearing about a rescue kit or Rehab and I've been diagnosed for 10 years. I finally got my doc to give me a script for the antibiotics and prednisone to have on hand yesterday. I'm sure you all know how scary it is when you can't breathe. I also found out I can and probably should use oxygen when I shower. I am so thankful I found this site because it looks like I'll be able to learn a lot from you all.

[Hidden in reply to Pookiesherlock]

Just ask away about anything lung related on here, and someone will be along to help you. Yes -it can be terrifying, and that is why it is called a rescue package, for it really is.

[Peteybob]

Hello Pookiesherlock and welcome to the group!

[Caspiana]

Hello Pookiesherlock . So nice to meet you. Hopefully we'll hear lots more from you.

Cas xx 🌼

[Sheilab123]

Hi Pookiesherlock and welcome to our amazing little forum. The others have given you good advice, anything at all, just post and someone will be along with an answer (or at least a reply, wish we had all the answers!) Take care xx

[tamariki]

I have just got over a bad case of bronchitis. I was given prednisone, but the doctor told me I didn't need an antibiotic, since my disease was viral. Made me wonder!

[Pookiesherlock in reply to tamariki]

Did you have blood tests to prove viral or bacterial? Without the blood test the doctor cannot determine which it is. To assume viral is putting you at risk.

[tamariki in reply to Pookiesherlock]

No blood tests. I had a thorough chest and physical exam, and it was found there was a bit of wheezing still on my left side. The doctor told me to take 2 prednisone tablets for five day. I do take a daily dose of roxithromycin, which is an antibiotic, mainly to guard against any infections I come across whilst with my grandchildren or out shopping. I think my doctor is worried I might not be getting the expected results from all the antibiotics I have been taking.

[Beth1949]

Welcome to this forum.

I came across this forum last November and I have learned a lot! Plus it's so nice to be able to share information as well as knowing that other people are going thru what I am going thru.

I have also learned to question doctors. We have recently moved to an area that have bronchiectasis specialists (we moved to be closer to our family). Where we moved from, my pulmonary specialist was not familiar with this condition. I think very, very highly of him, if I started having problems, he would see me within 24 hrs. He even had me go to the Mayo Clinic, because he felt he was missing something in my care. He had me go to an immunologist to find out I have an immune issue, so I have an IV once a month.

So question doctors. Also, I learned from this forum, to think outside the box. I take Turmeric (with pepper) and Manuka honey every day and limit dairy products.

You are not alone and this is a great place for support, Beth

[Pookiesherlock in reply to Beth1949]

Thank you Beth. What area are you in? I'm in Central PA. My doctor chided me for asking too many questions between office visits. Well, if I wait until the allotted time to ask questions I could be dead, so I explained I have no intention of putting off my questions. I had a very frightening experience last weekend and I have no desire to repeat that episode

[Beth1949 in reply to Pookiesherlock]

We live in Des Moines Iowa now. We moved from northern Indiana, near South Bend. We had lived in a county that had a lot of factories (air pollution), so I'm hoping that the air quality is better here.

I can understand how frightening this condition can be. This past year, I have done better. The previous 2 fall/winters, I had numerous bronchscopies. Do you see a specialist? One that is familiar with bronchiectasis?

I'm 67 yrs old and have had lung issues for close to 30 yrs. And as far as questioning doctors, I never did. I was diagnosed first with allergies, then asthma. Years later, we moved and I was diagnosed with COPD and my specialist was proactive: started me using a nebulizer, a percussion vest and the proper meds. He's the one that sent me to Mayo 3 yrs ago. That's when I had a CT scan that showed bronchiectesis. Then a few months ago we moved here. Now I question doctors.

The worst: In 2000, I spent 6 days in ICU on a respirator, my lungs were so full of mucus that my brain wasn't getting enough oxygen. That when I was assigned to the specialist that got me going in the right direction.

Stay healthy, Beth

[Pookiesherlock in reply to Beth1949]

I am so grateful to you for responding Beth. My name is Nancy. I am just now getting information from the doctors about different things, but honestly, most of my information is coming from this site. For 10 years the doctors mentioned COPD because they knew I smoked. So every time I got sick it was COPD, but I can only give you a handful of times they prescribed antibiotics, took tests or even cared that I was sick. I've heard "this will pass" from the doctors so many times it's sickening,,,,no pun intended. If I may I'd like to keep you updated on my treatment. You seem to have a good handle on what can be done.

[Beth1949 in reply to Pookiesherlock]

Nancy,

That doctor needs to be more proactive. It's much easier to be prepared for when you start having breathing problems, than to wait until you do, then see the doctor. So it's a good idea to have prednisone and antibiotics on hand.

Also, if you travel, my doctor always had me take antibiotics with me in case I needed them.

Keep me and this forum posted on how well you are doing and if you have a question, post it here....you will get a lot of advise.

Stay Healthy, Beth