I would love any advice that anyone c... - Lung Conditions C...

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I would love any advice that anyone could give me to ease my mind. I am a 42 year old female living in the U.S. (in Virginia).

kpatrick profile image
16 Replies

I have never smoked, never done drugs, do not drink, have been a long-distance runner for 30 years, exercise regularly, etc. I was just diagnosed with emphysema in the lower lobes of the lungs. Blood tests showed that there is no genetic factor involved, so the Pulmonologist is telling me that we don't know the cause of the emphysema (could be asthma, he said). All of this was found after my 3rd time of dealing with uncontrolled coughing that ended up with me having 6 fractured ribs from all of the coughing. I have been prescribed daily Spiriva inhaler, but other than that, the Pulmonologist has said that he will "see me back in 6 months" unless the symptoms progress. Is this an answer that I should be happy/comfortable with? I am nervous as I've always been a healthy person. I've been reading about emphysema, and I have several family members on both sides of the family who have died from this lung issue. Should I seek out advice from other doctors, or simply watch my symptoms and stay on the Spiriva? I would so appreciative of responses from those who have gone through this, or who have experience with emphysema. Thanks so much!

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kpatrick
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initial profile image
initial

Firstly, welcome to the community kpatrick :)

I'm on Spiriva and Seretide as preventers and salbutamol as a reliever inhaler. I also have uniphyllin and carbocisteine pills to take too. But, I'm classed as having very severe COPD.

If you're finding the Spiriva is controlling your symptoms, then all well and good, but there are other medications should this not be the case. I would certainly talk this over with your doctor, and try and get your meds tailored to control your symptoms.

Being healthy, eating healthily, staying away from atmospheric pollutants will all stand you in good stead. It's not the end of the world, this is a slowly progressive condition, and one which you can to a reasonable level keep stabilised.

As long as the Spiriva is controlling your condition, relax, and enjoy your Christmas. Again, Welcome, and Merry Christmas :) x

kpatrick profile image
kpatrick in reply to initial

Thank you SO much for the quick reply! The Spiriva seems to be controlling the coughing and the asthma, but I'm just not used to having to take something daily. I'm the kind of person who doesn't even like to take an Advil for a headache, and now that the Spiriva is something I have to take, I guess I'm just concerned. And that word "progressive" causes me to worry even more. I guess I'll continue to take the Spiriva, and return to the Pulmonologist in 6 months, and see where I am at that point. I hope that you are feeling well, and I wish you a blessed, wonderful Christmas, and a Happy New Year!!!! :-)

initial profile image
initial in reply to kpatrick

Please don't be worried about the 'progressive' bit. There are people on here, and still active 20 years after diagnosis. Taking care of yourself with a healthy diet, exercise etc., all contribute to maintaining lung health.

This is the first Christmas in over 10 years that I don't have a chest infection, kpatrick, so I have every intention to make the most of it and enjoy myself :) Merry Christmas :) x

kpatrick profile image
kpatrick in reply to initial

I am so happy that you can celebrate this Christmas without a chest infection!! Enjoy every minute of it.......

Hi kpatrick,

I'm afraid I can't answer your question about your lung condition as I don't have Emphysema. I have Bronchiectasis. But I was a little concerned about the fact that you had 6 fractured ribs due to coughing. Have they checked your bone density? I know you have always exercised and it may seem odd to think you might have bone thinning, but it does happen. I have mild Osteopenia and take Adcal +D3 to stave off Osteoporosis.

kpatrick profile image
kpatrick in reply to

Yes, I have had my bone density checked numerous times over the years. I do have osteoporosis in my hips and lower spine, as well as osteopenia in and around those areas as well. I have struggled with anorexia since I was 13 years old, so the thinning bones do not surprise me at all. When I went to the ER mid-December, it was because of chest pain, and that is when they did a CT scan and found that I had fractured 6 ribs from the constant coughing, and they also discovered that I had numerous other old fractures from years ago. This was the third time that the "illness" began with a tickle in my throat, then progressed to constant coughing that I couldn't control. All of the coughing led to the broken ribs. In the past, I just waited everything out, and then carried on with life. This last time, though, had me scared, as I was having trouble breathing when the coughing began, and I also had other "weird" symptoms (e.g., my calf muscles remained cramped for over a week, odd things with my fingernails, etc.). Having other family members on both sides die from lung issues, I was worried. Going on the Internet is nerve-wracking, so I felt that emailing with other persons who are dealing with similar situations (either themselves or with other family members/friends) would give me a better picture of what emphysema is, and how concerned I should be long-term. I truly appreciate your reply. Have a great Christmas tomorrow!! :-)

in reply to kpatrick

You too. Sending very gentle hugs. xxx

Welcome kp

To ease your mind about the genetic form of emphysema you may want to check out the alpha1 antytripsin site to help you decide if you want further testing:

alpha1.org/

There are other factors that could play a part in why you and family members have lung damage which has caused emphysema, if the family are living in the same area or same type of location, where perhaps vehicle traffic volume is high, or there is a lot of dust or air pollution from farmers cropping or spraying etc.

A good idea to keep going with the spiriva especially if it is helping you to breathe and continue to exercise, which is very important.

Lots of info on BLF's home pages, you can access them by clicking on the red balloon top right.

Stay as well as you can by good diet and regular exercises, try to avoid having contact with people who may be infected with a cold or the flu. Protect the airways from cold temperatures by wearing a scarf or buff over nose and mouth, protect also from dust or other air pollutants. Look after yourself well and you can improve your chances of stabilising the condition and help slow the progression right down.

Keep focussed on wellness and health and enjoy the holiday season :)

Best wishes BC

Buff link:

youtube.com/watch?v=sSvRm4C...

kpatrick profile image
kpatrick in reply to

Wow! I am so grateful for all of the quick responses that I have received just today. Everyone has been so helpful and reassuring. I did have the genetic testing done, and it came back negative. A bit frustrating, because that might have better explained why I have emphysema. Now I really don't know the "cause", so to say, but I do live in a very high traffic area (Northern VA), and I have been an outdoor runner for 30 years now. I will definitely take all of this advice to heart, and thank you so much for your email/post to me. I hope your holiday season is a wonderful one! :-)

bonzothehoss profile image
bonzothehoss in reply to kpatrick

my partner has emphasyma and was diagnosed with it in april 2013 although he has obviously had it a lot longer. he is categorised as severe but still works full time. he was put on spiriva to start with which helped a lot and more recently had seretide added which has made a really positive improvement to the coughing, he also has a ventolin inhaler. the cause for him was definitely smoking - he gave up when he was diagnosed - but luckily we are with a gp who doesn't go in for value jusdgements in the way that some seem to and he is getting excellent care. i read about it on the internet when he was first diagnosed and frightened myself to death with it all. this site is a great support so i hope you get things stabilised and can get on with life. happy christmas!

kpatrick profile image
kpatrick in reply to bonzothehoss

Thank you so much, Bonzothehoss, for your reply. The responses that I've received so far have helped to ease my mind, and have been extremely useful as I learn more about this new diagnosis. I am so incredibly sorry for the loss of your Partner, and I pray that you can enjoy this holiday season with beautiful memories of your times together.

Offcut profile image
Offcut

Hi and welcome

It is never good to over worry your self. slightly off track but my father was diagnosed with a progressive Leukaemia when he was 50 and passed away at 82 he refused to let it get him down and lived life the best he could.

Be Well and PMA

kpatrick profile image
kpatrick in reply to Offcut

Thanks for the reply, Offcut! I'm definitely not one to worry over myself (it took me 6 fractured ribs to finally go to the doctor - hehehe......), but just want to make sure that I'm doing all that I can to stave off the impact of the emphysema. Have a wonderful holiday season!!!! :-)

Hitchcock profile image
Hitchcock

USA/Indiana here. I used to run marathons, too.....while I was a smoker. One of my running buddies had cold weather asthma. You might think about doing indoor training during cold weather? Otherwise, use your Spiriva daily and correctly. You'll be fine.

kpatrick profile image
kpatrick in reply to Hitchcock

Thanks so much, Hitchcock! Yes, I'm very stubborn when it comes to the running. I will run in anything, even ice. I'm faithfully using the Spiriva and have the Ventolin inhaler in case, plus trying to continue running very early in the morning before too much traffic (pollution) hits.

Shadwell profile image
Shadwell in reply to kpatrick

Keep up the running it will be very good for you Iv just been on a pr course and they can't enficise enough how important exercise is for u it strengthens the lungs cover your mouth & nose with a scarf to protect from fumes & cold air or wind and u should be ok.

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