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jeanette52
@jeanette52

Posts: 10
Joined: Oct 19, 2018

Just Diagnosed Emphysema

Posted by @jeanette52, Fri, Oct 19 1:49pm

Hello…I am a 66 year old female just diagnosed with "predominant upper lobe emphysema" yesterday via CT chest scan (done on 10/17/2018). I was having a year follow-up scan for a perifissural lung nodule (which hasn't changed in 2 years so no more follow-ups). On the last scan there was no mention of emphysema. Right now (and when I had the scan on 10/17/2018) I have an allergic flare-up. Nasal passages completely closed, throat hurts and congestion in right upper lung. This started about 2 months ago when I sneezed all night and then my nose started pouring. Then it totally closed up.Lung congestion apeared about a day later. I only had a cough for the first couple of days then it went away. The nasal and lung congestion are still present. Phlegm in upper throat as well. Since there is no cough I have to hack up the phlegm from my lung. I have made my self pretty sore doing this.The sinus issues are almost overwhelming. I went to my primary care physician on 9/28/2018 and my temp was fine at 97/9, O2 saturation at 99%. Blood pressure 121/70. She listened to my lungs and said she didn't hear anything. I just had blood work done right before that visit that showed my eosinophil % at 6.1. She said that was a little high and to take regular Zyrtec because I had allergies to something. I cannot take decongestants because I have paroxymal AFib. It has done me no good. I cannot get air through my nostrils. The AFib makes it hard to take anything to clear this up. The only thing that seems to help a little is store brand Mucinex. Could these issues have caused it to look like I have emphysema? I am so scared. I am a super anxious person diagnosed the Generalized Anxiety Disorder so you can imagine what seeing this on the test results has done to me!! I will admit that I still smoke…a few a day. I feel so guilty and horrible that I may have hurt myself like this. But my daughter died a year ago (10/21/201) and trying to quit would have been so hard. I am still in horrendous grief and sadness at her loss.

According to the scan it looks as if I have no other lung issues. Could this illness (allergy) have caused some kind of misreading? Maybe asthma?
I would like to not here that I have never had a smoker's cough. Smoked a lot of years, though.

Thanks so much for reading my story and whatever insight you can give.

Jeanette52

REPLY

Hi @jeanette52, welcome to Connect.
I'd like to introduce to other members on Connect talking about emphysema, lung congestion and complications of A-Fib. Please meet @robertjr @waterboy @ppeschke @cognac @windwalker @sneakerss @jo54 @crashnam and @penlee. You can read more about them in these discussions:

– COPD/ Emphysema https://connect.mayoclinic.org/discussion/copd-emphysema/
– Palpitations & Emphysema https://connect.mayoclinic.org/discussion/palpitations-emphysema/
– Stop smoking panic attacks https://connect.mayoclinic.org/discussion/stop-smoking-panic-attacks/

Quitting smoking is really hard. @littleonefmohio @merpreb certainly understand that. But it must be especially when you work hard to manage anxiety and have recently suffered such a heart-wrenching loss. One step at a time.

Thanks for responding. Hope to hear from some of these folks you mentioned. Thank you also for your kindness.

@jeanette52

I feel very sad that no one but a moderator responded to my post. I guess I will try somewhere else. Thanks again, Colleen.

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@jeanette52, Here is some information about emphysema that you might be interested in, since you are newly diagnosed.
https://www.mayoclinic.org/diseases-conditions/emphysema/symptoms-causes/syc-20355555

I have no experience with emphysema, but I can imagine your desire to connect with someone who is familiar with oit. I see that you have posted this question 2 days ago, and I suggest that you hang in for a while longer. It can take a bit more time for our members and volunteer mentors to read and respond to the discussions. Weekends are often very busy for many people, plus members and volunteer mentors have their own jobs, families, health factors that can limit the amount of time that they can commit.

Have you read looked at the discussion groups that Colleen provided? As a Connect member, you are invited to ask questions and make comments to any of the replies that you are interested in.
If you need help to do this, Will you let me know? I will be checking, and be ready to assist you.

I feel very sad that no one but a moderator responded to my post. I guess I will try somewhere else. Thanks again, Colleen.

@rosemarya

@jeanette52, Here is some information about emphysema that you might be interested in, since you are newly diagnosed.
https://www.mayoclinic.org/diseases-conditions/emphysema/symptoms-causes/syc-20355555

I have no experience with emphysema, but I can imagine your desire to connect with someone who is familiar with oit. I see that you have posted this question 2 days ago, and I suggest that you hang in for a while longer. It can take a bit more time for our members and volunteer mentors to read and respond to the discussions. Weekends are often very busy for many people, plus members and volunteer mentors have their own jobs, families, health factors that can limit the amount of time that they can commit.

Have you read looked at the discussion groups that Colleen provided? As a Connect member, you are invited to ask questions and make comments to any of the replies that you are interested in.
If you need help to do this, Will you let me know? I will be checking, and be ready to assist you.

Jump to this post

Thank you. I will do that. You guys are very kind.

@jeanette52

I feel very sad that no one but a moderator responded to my post. I guess I will try somewhere else. Thanks again, Colleen.

Jump to this post

It's me again @jeanette52. I'm confident that other members will chime in soon. As you know first-hand emphysema is a challenging condition. I find that the participation of members in the Lung Health group comes and goes as members are able.

It sounds like you're not convinced of the diagnosis of emphysema. Have you considered a second opinion?

@jeanette52

Thank you. I will do that. You guys are very kind.

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Hi Janette, I am a woman who's diagnosed with emphysema. I also have a spot on my lung that has shown no growth in years. I'm not on oxygen but I do get short of breath when walking. I am on daily Anora. Don't know if it helps. My advice to you is stay calm. Be certain that you have the right doctor. Have had two pulmonary doctors that I would rate a C. Next walk even a short distance. I'm sorry but you must stop smoking. I smoked for 40 years and quitting was the hardest thing I have ever done. You must unless you want to get worse. You are in charge of your health. There are many of us who wish we had listened earlier. There's no easy way but the reward is being able to breathe. Please let us know how you are doing. God bless and good luck.

@jo54

Hi Janette, I am a woman who's diagnosed with emphysema. I also have a spot on my lung that has shown no growth in years. I'm not on oxygen but I do get short of breath when walking. I am on daily Anora. Don't know if it helps. My advice to you is stay calm. Be certain that you have the right doctor. Have had two pulmonary doctors that I would rate a C. Next walk even a short distance. I'm sorry but you must stop smoking. I smoked for 40 years and quitting was the hardest thing I have ever done. You must unless you want to get worse. You are in charge of your health. There are many of us who wish we had listened earlier. There's no easy way but the reward is being able to breathe. Please let us know how you are doing. God bless and good luck.

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PS. Sorry for your loss. I understand as my husband passed last year. Life is not easy. I have faith in God and this helps me. You are not alone. He is with you.

Liked by Jamie Olson

@rosemarya

@jeanette52, Here is some information about emphysema that you might be interested in, since you are newly diagnosed.
https://www.mayoclinic.org/diseases-conditions/emphysema/symptoms-causes/syc-20355555

I have no experience with emphysema, but I can imagine your desire to connect with someone who is familiar with oit. I see that you have posted this question 2 days ago, and I suggest that you hang in for a while longer. It can take a bit more time for our members and volunteer mentors to read and respond to the discussions. Weekends are often very busy for many people, plus members and volunteer mentors have their own jobs, families, health factors that can limit the amount of time that they can commit.

Have you read looked at the discussion groups that Colleen provided? As a Connect member, you are invited to ask questions and make comments to any of the replies that you are interested in.
If you need help to do this, Will you let me know? I will be checking, and be ready to assist you.

Jump to this post

Hi, My name is Kathy – I am 66 and was diagnosed with emphysema about 4 ago. My last test said it had progressed to severe, however, I am not on oxygen at all, so I was skeptical. I recently got referred to a lung specialist and had another test. The doctor would not stage me as he says he treats me, not stages! I am on brero for 3 months and will take another test to determine if asthma is a component of my disease and to the extent. AT this appt. I will insist on knowing what my stage is, as I feel I have a right to know where I am, and my life expectancy. I am an ex smoker (4 years ago) and since quitting, have gained 60 lbs. I do get very breathless when walking etc. I am finally working on my weight and am hoping it causes some of my breathlessness. I know it is very scary Jeanette.

Jeanette,
@jeanette52
I'm sorry for your loss. You're not alone here. You mentioned that your congestion and sinus issues have lasted a couple months. I'm suspecting that you could have an infection in your sinuses that spreads to your lungs. Congestion does show up on X-rays and that is how they diagnose pneumonia. I don't know if that would hinder a diagnosis, but you might want to ask a lung specialist about that. Staff infections can cause sinus infections, and I think I have had similar trouble. A lot of people carry staph in their noses unknowingly. I had some instances of excess phlegm in my lungs that I can feel, but little other symptoms except the post nasal drip. No fever or cough. Sometimes asthma phlegm is caused by some type of low grade infection, and I have found that to be true in my case. I've had some reoccurring chest infections that seemed to start in my sinuses. I use a saline rinse bottle. I take generic Mucinex to thin the mucous so it's easier to expel. I had spine surgery at Mayo 2 years ago. Before surgery, they had me treat my nose by putting Mupirocin (generic for Bactroban) ointment in the nostrils twice a day for about 10 days to kill any staph infections. I had some ointment left and I tried it when I had breathing issues with excess phlegm, and it worked. After treating for about 3 days, breathing would be normal again because I wasn't labored with phlegm. I'm better at recognizing this earlier now, but it's been enough to raise my resting heart rate over 100 beats per minute and the first time that happened, I went to the emergency room. They diagnosed bronchitis and put me on oral antibiotics which cured it, but it happens periodically. My doctor wrote more prescriptions for Mupirocin so I have it on hand now and can treat my sinuses as soon as it starts. I do have allergies and do allergy shots and antihistamines, and I have to avoid foods that cause allergies and phlegm (like milk). You might want to consider seeing an ENT to see if they can culture what's in your sinus and throat. That's probably my next step too. I don't smoke, but I certainly have worried a lot when I struggle to breathe, and that makes my asthma worse, so the best thing I can do is try to relax and do diaphramatic breathing. You can also do physical therapy or use a massager to loosen phlegm. Walking would help if you feel up to it. I also have a nebulizer which helps the asthma rescue medication get deeper into the lungs to clear them. I used it the day after my surgery because I had so much phlegm from the anesthesia which is something that normally happens, but I had trouble getting rid of it. I remember reading an article once about this kind of chest infection which is why I tried the antibiotic ointment. I hope these suggestions help and gives you something to ask your doctor about.

Thank you…very informative. I do walk…3-4 times a week 1.25-1.50 miles at 3.0 speed.Walks usually last about 25 minutes each. I have an app on my phone that measures it. I am going to call my PCP tomorrow and get a referral to an ENT. It is something that needs to get done. Will talk with PCP about the Mupirocin. God bless!!

Liked by Jennifer Hunter

@kathydyd

Hi, My name is Kathy – I am 66 and was diagnosed with emphysema about 4 ago. My last test said it had progressed to severe, however, I am not on oxygen at all, so I was skeptical. I recently got referred to a lung specialist and had another test. The doctor would not stage me as he says he treats me, not stages! I am on brero for 3 months and will take another test to determine if asthma is a component of my disease and to the extent. AT this appt. I will insist on knowing what my stage is, as I feel I have a right to know where I am, and my life expectancy. I am an ex smoker (4 years ago) and since quitting, have gained 60 lbs. I do get very breathless when walking etc. I am finally working on my weight and am hoping it causes some of my breathlessness. I know it is very scary Jeanette.

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I am also 66. Going to find a way to let the smokes go. Have to. I walk 3-4 times a week … 1.25-1.50 miles at 3.0 speed. Will find out more from PCP about the CT scan this week. I need to get an appointment with an ENT and get this nasal condition cleared up first. Thanks so much for your input. God bless and good luck with your weight loss!!

Liked by Jennifer Hunter

@jo54

PS. Sorry for your loss. I understand as my husband passed last year. Life is not easy. I have faith in God and this helps me. You are not alone. He is with you.

Jump to this post

Yes I know. Thank you. God bless!!

@jeanette52

Thank you…very informative. I do walk…3-4 times a week 1.25-1.50 miles at 3.0 speed.Walks usually last about 25 minutes each. I have an app on my phone that measures it. I am going to call my PCP tomorrow and get a referral to an ENT. It is something that needs to get done. Will talk with PCP about the Mupirocin. God bless!!

Jump to this post

Good for you, Jeanette! You're taking steps in the right direction! I hope you feel better soon.

This is a follow up question to my last post "Just Diagnosed Emphysema". I had a CT scan of chest on 9/11/2017 and there was no mention of emphysema. The follow up scan (checking a nodule) was done 10/17/2018 and the emphysema was discovered. In the "Impressions" section it was listed #3 under "nodule unchanged" and "no acute chest process identified". The word Emphysema was all that was there. No recommendations were given, no staging, nothing. Just emphysema. This is worrisome because I don't know where I stand with this. Does anyone know why nothing else was stated? The findings section didn't say any either. I have a call into my PCP and will probably hear from her tomorrow. My anxiety is through the roof. Thanks for any input.

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