Just Diagnosed Emphysema

Posted by jeanette52 @jeanette52, Oct 19, 2018

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

Interested in more discussions like this? Go to the COPD: Chronic obstructive pulmonary disease Support Group.

@olgamarie

Yes, I am. I have been trying to do this by myself. But, I am scared. I should be having an appt in March at Mayo. My Dr. transfered to another site. I am missing her. I know I have to ask questions, but afraid of the answers.

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@olgamarie Could you do a videoconference or phone call with your doctor who moved? She could access your medical records to refresh her memory of your latest test results, address your immediate concerns AND refer you to a new doctor to see in person. I totally believe in learning as much as I can about my own medical issues, but I would never try to figure things out on my own. We're all different; but for me having a diagnosis and a plan made in partnership with a doctor to address my medical problems give me a peace of mind that greatly outweigh my fears of the unknown and constantly thinking about worst case scenarios. I hope you will a new doctor soon to help you figure things out. Thanks for reaching out on this site -- Merry and others have so much good advice to offer. Take care! Nancy

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@erikas

@olgamarie Welcome back to Mayo Clinic Connect, a place to give and get support.

You are looking to connect with members like @merpreb @emily10 @mrbill @juliette39 @janrn1 @spudmato
@erasmus and discuss new advances for emphysema.

You will notice I moved your question to a previous discussion. I did this so members could more easily connect with you in a central location. If you have not already done so, you may want to scroll through the past posts and look for interesting information.

Below I have also linked a discussion that you may find of interest.
- COPD and Emphysema: Want to connect with others https://connect.mayoclinic.org/discussion/copd-emphysema/

May I ask if you interest in emphysema is due to you having this diagnosis?

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Yes

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In reply to @eew "Yes" + (show)

Welcome @eew. I understand you were just recently diagnosed with emphysema. Can you tell me a little bit more about yourself? What is your main symptom? How are you doing with the news of this diagnosis?

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I'm sorry to hear about your daughter.My name is Mike Miller from magnolia Ohio. I was diagnosed with copd emphysema 2yrs. ago. My 🫁 doctor prescribed Anoro which is a Inhaler it has stabilized my breathing. I smoke one 🚬 per day sometimes none. My feet are swollen so I can't go on the treadmill until the swelling has gone down. I'm 40lbs. Over wt. I'm 5ft.10 at 265lbs. I need to drink more water for my swelling feet and of course quit eating so much also I'm 66yrs old. The best thing I do for my sob is deep breathing exercises. Go on line and pick out the breathing exercise that works best for you. I also take a anxiety 💊. Please try not to be too hard on yourself! At least your trying . Prayers is only thing 🙏 I have to offer. GOD BLESS YOU!

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@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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Best of luck to you as well in dealing with this. It's good that you quit smoking

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@kozmo

I'm sorry to hear about your daughter.My name is Mike Miller from magnolia Ohio. I was diagnosed with copd emphysema 2yrs. ago. My 🫁 doctor prescribed Anoro which is a Inhaler it has stabilized my breathing. I smoke one 🚬 per day sometimes none. My feet are swollen so I can't go on the treadmill until the swelling has gone down. I'm 40lbs. Over wt. I'm 5ft.10 at 265lbs. I need to drink more water for my swelling feet and of course quit eating so much also I'm 66yrs old. The best thing I do for my sob is deep breathing exercises. Go on line and pick out the breathing exercise that works best for you. I also take a anxiety 💊. Please try not to be too hard on yourself! At least your trying . Prayers is only thing 🙏 I have to offer. GOD BLESS YOU!

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One cigarette is major progress, especially if you were a former pack a day smoker, like most of us, that is a 90 percent reduction . I took Wellbutrin and found that it is easier than trying to quit cold turkey if can just get down to one a day..I did two a day for 2 months and then got rid of the one I had before bed... the one with my coffee in the morning was the hardest... but you like me are using it as the carrots and stick. ..ie that one a day being the reward if you can make it 24 hours without one... the triggers and cravings eventually go away once you drop the level of nicotine...it took people years to get to where you are at, so you can't just expect someone to quit smoking.. just like that... the fact you are this far is great. Many people can't quit. Even when they are told cigarettes are killing them and can't breathe. I'm glad they are airing commercials on TV now, showing ordiny people dealing with the effects of smoking later in life now, so hopefully people quit before the damage is permanent. Hope things improve for you.

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I have the exact same issues that you do Jeanette. I also have not completely quit smoking. I definitely need help with that because I panic when I think about quitting. I have cut down but my phlegm is worse and my coughing is all day long now. I also have sinus issues and hearing problems due to my sinus issues and have to see an ENT who told me I have a severe deviated septum. I have a real hard time breathing at night if I'm laying flat so now I'm using a breathe Right strip on my nose at night and it instantly clears my nose to breathe. I also had some skin irritation on my nose from it so there's always something. The breathe Right strip does not stop the phlegm. I just don't want you to feel alone. I have no answers at this point. But we can keep in touch and see how it goes. sending big hugs and oxygen LOL.

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My COPD, is caused by smoking, diagnosed as emphysema. In my case, I smoked for on and off, for 50 Plus years. I am 79, but wasn’t diagnosed until 14 years ago. I went on Oxygen in 2017, 24/7. I retain CO2, which obviously is poison, so I am on the Trilogy Sleep System, which “pulls” the CO2 off. I’m on it at night, My last hospital stay I was in ICU, and intubated, due to build up of CO2…I had not been sleeping with it on every night (I would have trouble with my mask fitting, and leave it off‼️) Too close to dying, I Never sleep, Or Nap, without it!!!!

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Hi, Jeanette. I am so very sorry for your loss. As for your chest CT scan, my doctors want me to have one for lung cancer as well since I still haven't been able to quit smoking. I researched the test and found that the test gives many false positives and also often causes doctors to panic when they see something that actually requires no treatment. I have denied testing due to what I have read. I don't have any lung cancer symptoms. Research the testing you had, and I think you will find comfort that it often indicates problems that don't exist. I wish you all the best!

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