New to COPD: I have a few questions I'm hoping... - COPD Friends

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Kjfreeheitkamp profile image
7 Replies

I have a few questions I'm hoping someone can help me with?

1) At what stage you were referred out to a pulmonoligist?

2) Does anyone else have a ulcer with this? I'm not sure if it's normal or not?

3) can you feel this in your lungs or is it just a feeling of breathlessness?

4) did you ever have swelling under the breasts as well as at the bottom of the rib cage (between them) around the end of the sternum area? It so tough for me to pinpoint all the swelling I have with this but I know I have read there is lung swelling involved in this but I have no idea what that feels like.

5) any other problems that has came along with this?

I'm newly diagnosed by my family doctor and the results only say I am moderately/severe obstructive airway disease with a reversible airway component. No type of staging or anything

I am also anemic and asthmatic have been since I was younger, been on Advair 250/50 with a Ventolin rescue inhaler, since diagnosis by PFT I was also put on Tudorza Pressair which to me seems to make everything worse, I feel more like I am chocking rather than I have problems getting air in and out of my lungs but I don't know if that's the normal feeling to this or not.

I was in the medical field for years before quitting to stay home with my children so I regularly listen to my lungs but I hear no sounds of wheezing, crackles or abnormal sounds however I do realize it is harder to hear when listening to yourself so I could be missing it.

Looking for insight

Thank you in advance for any help!

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Kjfreeheitkamp
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LORBIC profile image
LORBIC

You need to see pulmonary from the beginning, beginning anemic will make your breathing worst and you can have asthma over lay of copd. As for the swelling you maybe retaining fluids and need fluid pills to get rid of it. It could also be bloating, I take an over the counter drug to help with that.

I have not had any ulcers with this, but that doesn't mean it couldn't happen.

I'm also on Tudorza Pressair and you have to take a deep breath and blow it all out before you take the Tudorza and hold it for a count of 10 afterwards, if you can. I can feel it working it's way into the lungs. I question if it might be the Advair you are having issues with, you may need to try something different. Advair stopped working for me so I'm now on Dulera.

I can feel it in my lungs, as parts of the lung will ache and be painfull, more so during a flare up.

See your pulmonary the sooner the better.

Kjfreeheitkamp profile image
Kjfreeheitkamp in reply to LORBIC

LORBIC

Thank you that was very helpful

Sadly no one shows me how to do any of these meds properly.

I actually have had asthma since I was a child it was controlled with no meds until I was a young adult then they added the advair 250/50 he just moved that up to 500/50 after the copd diagnosis

I guess I never thought I'd have a problem with something stopping doing its job only worried about starting new meds and if they would work. I'll have to bring that up with this new dr.

I also have a ventolin inhaler for emergencies that I have always had and rarely had to use, until just recently.

If I could go back I would have saw a pulmonary dr from the time I was old enough to know but I just didn't realize until now how much a specialist with this was important sadly.

2 of my children have asthma so the pulmonoligist I am going to see for the first time this week has to be super happy as both of my children also have appointments with him to manage their asthma. Both of them were born with it so I still have hopes they can grow out of it as I have heard this happens for those born with it. Or send it into remission I guess is better wording.

I started noticing the sob I had after I was put on a beta blocker which causes respitory stress I now know but my family dr says it's not that but he also said many other things that wasn't fact too.

It's all confusing as other than the shortness of breath and body aches I haven't had hacking or bronchitis, pneumonia or any of those things in forever.

I've had walking pneumonia once in my life and I didn't even know it , went for a normal check up and I was wheezing apparently so it didn't affect me much that was roughly 5 years ago that did follow months after with Mono and Epstein Barr which my husband has years ago when we were very young and apparently I had it in me and when my immune system got low with the walking pneumonia it set that off

But again I didn't feel sick just super tired all the time.

You said you can feel it in your lungs. I never feel anything much going on it my lungs. I actually listen to myself a lot to hear anything stage or to see if I'm just not feeling it or not recognizing the feeling

It's all confusing and frustrating to me

I appreciate you help

LORBIC profile image
LORBIC in reply to Kjfreeheitkamp

Hi, I understand when you say no one shows us how to use the inhalers. The pulmonary doctor I have now has a nurse that is very good at sitting and explaining how to use them and watches as you do it.

I was born as a blue baby and doctor told me parents I had asthma but when I was in my late 50's I found out that I was born with a hole in my heart and that 30 to 50% of the blood was flowing the wrong direction, The damage to the heart had already starting happening. I tell you this to make sure that neither you or the children have any heart defects that could be causing the breathing problems. I'm a stickler for knowing the cause not just the treatment, it you don't know the cause then there is no way to know if you are getting the right treatment. Just because a doctor say's so doesn't make it right. Do lots of research and reading on the so called disease the doctor has labeled you with, this way you know the questions to ask when you see them.

Glad you and the children are seeing a pulmonary, they should do the right testing to decide if it's asthma or some other lung or heart problem. You could be in the very beginning of copd and if so with the right meds. and doing pulmonary rehab you can stay there for yrs.

Be careful with the Ventolin inhaler, it can cause your heart to race and that is never a good thing.

Glad I can be help, I'm hear for you so just ask away.

Have a good day

Kjfreeheitkamp profile image
Kjfreeheitkamp in reply to LORBIC

Thank you!

My kinds actually did have thier hearts checked so we are good there, they did that at children's when they was younger after the asthma diagnosis.

I have a wide array of health issues going on right now and his breathing thing just started after I was put on a beta blocker which I know depresses your respitory system however my current dr which is just a family doc will not hear me when I tell him they go hand in hand.

This has been going on since roughly September I had no problems until I stated that medicine however I fear just stopping taking it as it says you can't do that for risk of heart attack which keeps me taking it.

I also have 3 bulging discs one in my neck which is pressing on my throat so my airway feels very constricted due to that something I also told him but he says the PFT states it is COPD, not sure on how he comes to this I read it and what it states at the bottom is that I have moderately/severe obstructive airway disease with a reversible airway component

I believe my bp started to rise because I get body vibrations, it feels like a cell phone in your body going off on vibrate and usually only happens when I lay Down or sit to relax that's been going on for quite sometime which I now know is due to the cervical disc bulge, I also have a lot of pain to the point it makes me cry in my right shoulder, arm and back all on the right side along with numbness and pain in my right foot all of which goes with this disc buldging however I'm not ruling out copd I take the med as if this is what's is for sure going on but I still wonder due to the timeline or I'm still in denial. Not sure which yet.

Kjfreeheitkamp profile image
Kjfreeheitkamp in reply to Kjfreeheitkamp

Kids* sorry not kinds ☹️

nymima01 profile image
nymima01

I am newly diagnosed also. Stage 1. I started developing shortness of breath this past year. I felt as though I couldn't get a full breath of air. I saw my PCP and he ordered a pulmonary function test, which indicated the stage 1 COPD. Interestingly, I developed anemia too around the same time I became short of breath. I am still somewhat anemic, but my PCP has me on 2 iron pills a day. My anemia is slowly getting better, but it's been 3 slow months and I only came up 1.2 pts. I was also diagnosed with a rheumatoid condition called PMR ( Polymyalgia Rheumatica). I have to be on prednisone for a year in the hopes of sending the condition into remission. I am on a Flovent inhaler for my COPD. I too feel as if I have asthma.

I smoked for 11 yrs. back in the day, but quit when I was 30 yrs. old. I did however work in a smoke-filled environment for years before the smoking ban came into effect in the mid 90's. I am 65 yrs. old now, and I have to admit, I am upset that I will be dealing with this now. Some days are better than others with my breathing.

I see a pulmonologist and she will see me again in 3 months to see how things are doing. I also see a rheumatologist for the PMR. Specialists are a must for these conditions. I feel I am in good hands with all my doctors. But, I do my homework too. I hope things improve for you.

Kjfreeheitkamp profile image
Kjfreeheitkamp in reply to nymima01

Thank you

It it's all confusing. I actually have had asthma since childhood and been anemic since I was around 17 sometimes I can get my anemia under control and sometimes I can't we try to do it with food as I also get very badly constipated so iron is my enemy so that is used only when I can't get enough in me in other ways that will balance the iron outamd nit make me more miserable.

My asthma has been well controlled until he started me on a beta blocker that is when I noticed the sob started.

I guess the tests results starting I have moderately severe obstructive airway with a reversible airway component confuses me

I am 41 and was told 2 weeks ago based soley on a PFT which I also posted on here in hopes someone knows more than I about the reading

Thanks and good luck to you

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