Does anyone here have emphysema?

In My Humble Opinion
1

My mother had pneumonia in November. She didn’t get better and now her doctor tells her it’s emphysema. This doesn’t make much sense since she hasn’t smoked in thirty years. My father also quit many years ago.

The specialist merely told her to see him again in three months. He didn’t prescribe any treatment. Does anyone have an experience dealing with this disease?

I’m really worried about her. :frowning:

This has been the week from hell for my parents since my father was diagnosed with a cataract and macular degeneration on Tuesday.

Damn.

2

Damn. :frowning: I’m sorry I don’t have any useful to add as far as treatment goes, because I really have no idea what the very early stages of emphysema are like. I did want to let you know that my thoughts are with you and your parents. How awful.

3

Thank you.

My mom has suffered from diabetes, diabetic neuropathy, heart trouble, uterine cancer and carpal tunnel syndrome over the years. But somehow this diagnosis just bugs her more than the rest.

I think it’s because she was so proud that she managed to give up smoking for over three decades.

I’m so worried about her . . . :frowning:

4

It is possible even for someone who has never smoked at all to get emphysema - just rare.

It is impossible to know the situation from here, but you might want a second opinion.

The treatment for emphysema, as I understand it, is mostly symptom relief and an attempt to slow progression of the disorder as there is no way to reverse the damage that has been done.

My mother has emphysema, but she’s till smoking two packs a day :rolleyes:

5

My dad suffered from emphysema for many years and remained a heavy smoker until his death. I don’t remember much of his early diagnosis, but IIRC the diagnosis was done by lung x-rays as well as his symptoms.

Symptom relief is the only treatment, really. While it’s possible to maintain a good quality of life for a great duration of the disease, the latter stages are not so pleasant. Death was a blessing to my dad. He described it as slowly strangling to death.

It’s amazing to me that still today smokers choose to not acknowledge the damage that they are doing to their bodies. I understand your mother’s frustration. She likely feels like she did the right thing by quitting smoking and she still gets emphysema. Very frustrating, indeed.

6

Three of my four brothers had emphesyma ( I hate spelling this word.)

A big chunk of their problems were brought on by not being medically in great or medically ok shape anyways due to the Muscular Dystrophy another part is all three of these individuals smoked: two of them sporatic one regular. My survivng brother with MD has never smoked and he is in the best shaped of the three ( well, being that he is alive would be a plus.)

If I had MD or some other horrific wasting genetic disease, I would be doing a high grade drug than tobacco, like cocaine or heroin. It is a bitch.

One brother died from pnumonia (another word I hate spelling.) and his lungs gave out. He was 45.

One brother got a cold it turned into brochitis then pnumonia over night then double pnunomia and his lungs started pancaking (collapsing) and we removed life supportThis all happened in the span of a week. That brother was the most consistant smoker and had a emphesyma cough pretty much his entire life. He was 44

The last brother was was bedridden for 5 years was on oxygen 24/7 at 100% for the last year or so. 100% oxygen is not good, it means the machine is giving him all the air and he is not doing any work. His system just wore out. he was 50.
Even though your mom stopped smoking all those years ago, the damage was done and my guess, with all the other health related problems, the stress on the body probably just was too much for her lungs. Also, living with a smoker doesn’t help and it also could be enviromental ( paint, carpet, pollution).

Cold weather is a big problem as the cold air constricts the brachial (?) and causes spazms. So covering the mouth and keeping a scarf around the neck is key.

Emphesyma is a horrible, horrible disease. Gasping for breath for every breath is no way to live.

I wish I knew more about treatments & medicines, but in my brothers’ cases, really there wasn’t anything that could be done.

Find a good pulimonologist and develope a rapport with them.

7

I’m don’t think that some of our experiences are going to help you feel any better but you did ask.

My grandfather and father both developed emphysema even after having quit smoking for several years before. They had both smoked for most of their lives though. Watching his father suffer and die from emphysema is what got my father to quit smoking, it was about 20 years later before he succumbed to it. My grandfather also had a bout with cancer so he didn’t really live with the emphysema as long as my father. It bothers me that two of my brothers still smoke after watching both our grandfather and father die of this.

My grandfather had to be on oxygen all the time in his later years. My father had it for several years but did not require oxygen all the time. He had a nebulizer and had to take breathing treatments several times a day. His activity eventually slowed down but he did go to a gym for quite some time for doctor prescribed exercise. His vision got very bad, he had glaucoma surgery and corneal transplants which didn’t help. His vision problems added to his limited activity in his last years.

A couple years ago my father developed pneumonia and went to the hospital. He was about to be released after a week in the hospital when one of the bullae in his lungs ruptured causing a pneumothorax. He had a chest tube put in and was moved to ICU. He started to improve and we thought he would be released, then he developed subcutaneous emphysema, probably from the chest tube leaking or another bulla rupture. Sub Q emphysema is basically air under the skin and it makes one look very puffy. I have seen it a lot in animals but I didn’t even realized it could happen to people. He was in a lot of pain so they started giving him morphine, then he slipped into a coma and his organs started to fail. He died two days later.

I’m sure someone in the medical field might be able to tell you more about treatments. My father did have several years with respiratory therapies, although his activity was limited he did manage to still do some things around the house for several years, until his last couple of years.

I would second a recommendation made previously that your mother see a specialist for the emphysema.

8

I just found this post [by searching for emphysema].

I’m sorry for you and your mom, lavenderlemon and for all of you who’ve lost loved ones.

I have advanced emphysema, am on oxygen and albuterol. I was actually searching [Googling] for some sort of forum for fellow patients, but the fora I found had no new messages in them.
Anyone know a message board that’s still active?
Thanks.

All the best to your mom, lavenderlemon.

9

Thanks, gum. Unfortunately I haven’t seen much in the way of online support groups either. It wouldn’t do my mother much good since she hates computers but I thought I could hang out there and try to find out as much as I could for her sake.

I’m very sorry to hear about your condition. :frowning: My mom’s basically taking it one day at a time. She’s on meds and uses oxygen several hours a day. I’m still worried about her. Reading this thread was depressing as heck.

The only good thought is knowing that she might survive another twenty years. We have a small child and I’d like her to get the chance to play grandma for a good while longer. I just so hate the thought of her struggling for every breath when the disease progresses.

10

Can you take your Mom to a Pulmonologist?

Let him confirm (or deny) the diagnosis. If she does indeed have emohysema, he will almost certainly be the best MD to treat your Mother.

I’m 71, smoked for many many years and now have emphysema. But, I’m holding my own under the care of a Pulmonologist.

11

Emphysema is not necessarily always a major deal. My FIL was diagnosed with minor emphysema 15 years or so ago (he smoked heavily for 45 years) and has remained symptomless all this time.

My Uncle John (lifetime Lucky smoker) suffered greatly before dying, however. Let’s hope yer mom is like my FIL.

12

Here are 3 good sites that explain emphysema, its causes, symptoms, and treatment.

http://hcd2.bupa.co.uk/fact_sheets/html/chronic_bronchitis.html
http://www.emedicinehealth.com/articles/16255-1.asp
http://health.allrefer.com/health/emphysema-info.html

13

One of my grandmothers has smoked for, like, 50 years and has had emphysema for quite a while. She’s on oxygen and still smokes.

As far as I know, she’s still alive and what’s weirder is her heart, blood pressure, cholesterol, etc. are fine (this holds true for all the heavy smokers on that side of the family, oddly enough). She pretty much does what she wants, just packs up her oxygen and goes. Who knew?

Emphysema damn near killed my grandfather a year or so ago, though.

I’m basically telling you this to illustrate the point that emphysema, while bad, may not necessarily be a death sentence. Especially since Mom hasn’t smoked in 30 years, this may not affect her every day life very much.

I couldn’t tell from your post if the doctor who diagnosed her is the same as the specialist. At any rate, a second (third?) opinion can never hurt. Sometimes doctors get it wrong, ya know?

14

My problem is that I live three thousand miles away from my mother. I’m getting this information very second-hand mostly from her and a little bit from my father. I haven’t even seen her in person since last summer.

What she essentially told me is that she was in the hospital in November for a week for what she thought was bronchitis. She was oxygen while she was there. When they couldn’t wean her off the oxygen she told me they refered to her a specialist. She finally saw him in January and then got the official diagnosis. My mother tells me she can’t make it through the day without resorting to oxygen for a few hours.

It’s very frustrating trying to deal with a parental medical problem, let along trying to get information long distance. Unfortunately I can’t take the time off from work right now to run off and check up on her. Even more unfortunately she has me worried because she has a habit of concealing medical problems from me because she wants to protect me. She’s supposed to come here in October. I’m hoping she’ll trust me more at that point.

Thanks for the good wishes everyone.

15

I’m sorry to have made you depressed, lavenderlemon.
As I understand it, there are many forms of emphysema. Your mom may be a grandmother for a long, long time.

Thanks for the links, Imasquare. Here’s another one:
http://www.merck.com/mrkshared/mmanual/section6/chapter68/68c.jsp

It says this about smoking:

“For unknown reasons, only about 15% of cigarette smokers develop clinically significant COPD.”

And this about lavenderlemon’s mom’s ability to see her grand-child getting into his/her nasty puberty years :wink: :

“Some patients with severe airway obstruction survive for many years beyond the average, up to 15 yr.”

I’m fairly young and my emphysema is due to alpha1. It’s hereditary and I’ve got 2 to 5 years left. I was searching for tips and tricks as to how to get some darn flesh on my bones again.
I never really liked the ‘catwalk-model look’, but it seems I might become the next Kate Moss yet. hehehe.

All the best, again.

16

My mom died from emphysema a couple of years ago. The idea is that the lung will expand but does not contract so, while you can breath in, breathing out is a difficulty. Try it yourself: you should breath out for twice as long as you breath in, expanding your lungs then squeezing them.

It is caused by many things: for seniors who were exposed to woodstoves with bad exhaust; for younger people, improper breathing; long term exposure to various gases and family history.

Because your lungs do not process oxygen breathed in naturally, the straight oxygen helps when inhaled directly from the tube attached to the supply.

Macular degeneration is a comomon side effect as eyes require oxygen to function.

Lungs do not repair themselves. Once the damage is done, it is done. By quitting smoking, you simply extend the time it takes to take effect.

High humidity can cause more trouble, along with hgih stress. With my experience, if there is a smoker in the house, they will not provide oxygen because it is highly flammable (at least the company we dealt with).
From my experience, three months is too long…should be monitored monthly to assure no side effects and to monitor progression. There is a place here called Westpark which run educational and “how to live with” breathing difficulties. It is not something which gets better with exercise or treatment. It continually gets worse, although time frames are different with everyone.

Eventually, even making the bed will become impossible without resting between.

I’m not trying to be the bearer of terrible news here but the more you are involved, the better. Get all the information you can and if you need to, call the doctor yourself. Explain the situation and ask appropriate questions: they may not give you the information at first, but they will know you exist and want to be involved and eventually that may change.

I’ll try to keep up with this post and post more but I can’t think about it too long otherwise I’ll fall apart.

17

Oh no! And here I thought my mother was unlucky. At least her disease took sixty one years to show up.

I’m so sorry that you have the hereditary form. :frowning:

18

Thanks, lavenderlemon. I’m used to the idea by now. I’m not afraid of death and I prefer to make jokes about it. I’m just looking for things to make me as comfy as I can. Believe me, it’s no fun sitting on a butt containing just bones. Also: I can poke your eye out with one of my shoulder blades. heh.

That doesn’t mean I won’t wish you and your mom all the best and I offer my condolences to Canadiangirl.