We’re in shock. At his annual physical the doctor was a bit concerned with my son’s breathing test and thought he might have mild asthma. He was sent to a lung specialist who did some tests and thinks he has early onset emphysema. He’s 29. Yes, he smokes, but the doctor said this is very unusual in someone so young even if they smoke. Based on his age, there may be a genetic component.
My head is just spinning and I keep breaking down in tears. The good thing is It was caught very early because of the physical. From what I’ve read, it is incurable but progress may be slowed or even stopped if he quits smoking and is on medication. Current plan is 6 weeks on an inhaler, no smoking, retest. If no change then more tests.
I’m beside myself with worry. He is in shock and lives far away and is on his own. He was so shocked when the doctor told him that he had to call the nurse after he left and have her explain it all to him again. He’d actually been trying to quit the last few weeks as he knows how bad it is for him but it is a struggle. I asked him if he was now definitely quitting and he says yes, he has to.
Anyone have any experience with someone having early onset emphysema? (Please no comments a out how stupid he is to smoke, I know it, he knows it. The irony is that his Dad quit smoking when he was born because I didn’t want him smoking around him.)
So sorry to hear what your son, you, and the rest of your family are going through. I have no experience with this but will be hoping for the best outcome for your son. Hugs to you and take care of yourself during this stressful, emotional time.
He needs to be immediately given a blood test for Alpha-1antitrypsin deficiency, the genetic form of emphysema and be given medical assistance to immediately quit smoking. The treatment for the genetic form is different from other forms of emphysema.
Did he have both a chest CT scan AND a full pulmonary function test to confirm the diagnosis?
You can send me a PM, as I know a lot more if you and your family are interested. If he has good insurance, consider a referral to National Jewish, the #1 respiratory hospital in the US. They are awesome at evaluating and treating. I have been a patient there for 16 years.
29 is young for an emphysema diagnosis, but with the genetic form of emphysema and smoking, it isn’t unheard of. By the way, folks with emphysema CAN and DO live active and full lives, with emphysema and other lung conditions, as long as they have great medical care and work closely with their healthcare team. Emphysema is scary to hear but can be kept mild for a very long time and not affect quality of life much.
I sent you a PM with more info. www.foundation.org website has tons of good info about COPD (chronic obstructive pulmonary disease), the umbrella term for lung conditions which include emphysema, chronic bronchitis and chronic asthma.
My sister didn’t smoke cigarettes, but she’s been a patient at N Jewish since she was 22. She always had asthma. Once they learn to deal with the situation, they become masters of treatment.m
Thanks everyone - it does help to share the news and get some feedback even just the sympathetic kind. I was really missing my Mum yesterday as she was always the first person I’d call in good times or bad.
@HImom - thank you so much. I will have a look at the stuff you sent me. He did have some sort of blood test - I think it may be the one you asked about as he mentioned the genetic thing. He didn’t have xrays or a CT scan, but some sort of breathing thing that tested how much he is breathing out. (I think - I was a bit in shock when he called me yesterday so probably didn’t absorb it all well. I know he didn’t rely absorb it all either)
Thanks also for the reassurance about living a full active life. Hearing that news about a 29 year old who otherwise seems reasonably healthy was shocking. He doesn’t really have symptoms in his day to day life.
OP, my husband was diagnosed with Alpha-1 about 20 years ago when he had a cold that wouldn’t go away. He was around 50 so not especially young, but a scary diagnosis nonetheless. He had been a social smoker (smoked only when someone offered him cigarettes) but stopped immediately after the diagnosis. Our next door neighbor died last year from the disease–at the age of 94 and was actively going to the gym up until 2 years before she died.
As you and he know, stopping smoking is critical. We were guests for 4 days last week at a friend who was a “secret” smoker. I am congested although I took Claritin during our visit and my H has a horrible cough. Luckily, his home nurse (he gets weekly infusions of an enzyme that he is missing) said his lungs are clear so he is not having to go to the doctor. He has learned that he cannot ignore what would be a minor illness in someone else.
I am sure every case is different but with my H, stopping smoking, being diligent with caring for minor illnesses, getting his medication, and exercising regularly has drastically slowed the progression of his disease. For several years, his lung function had improved although recently, at age 76, it has started to decline. He now uses oxygen at night to support his lungs. I think his a fib is more of a factor in his daily life than the emphysema. During our recent trip to LA for our son’s graduation he skipped his weekly infusion, didn’t use the oxygen and was able to walk several blocks and tour two museums. Unfortunately, the visit with our smoker friend along with 109 degree heat ended our trip.
Good luck to your son. If he follows doctors’ orders, this could be just a wake-up call to follow a healthy lifestyle.
@lotsofquests thank you. His attitude about stopping smoking certainly seems very strong and positive. He has tried before but always relapsed when he got stressed. When we talked yesterday his comment was that he has to stop now and he can’t smoke anymore. He said being told that news is totally different from hearing what might happen.
What type of job does your son have @swimcatom? He needs to be careful if he works around respiratory irritants. He needs to use proper equipment to reduce exposure. This may not be applicable to him, but thought it was worth mentioning . Best of luck to him.
He works at a chemical plant, so that is something that crossed my mind. They only wear respiratory equipment in case of a leak. Something I’ll mention to him though.
Thanks @VaBluebird - I keep hoping that it may turn out to be something less scary. Yes, him being far away makes it harder. I Want to rush and see him and make it all better. When he hung up the phone yesterday he said he was going to go drink beer, listen to music, and cry. Coming from my 6 ft 1" son who doesn’t like to show his emotions, that broke me up.
Today he was fixing a tire and planning to exercise before doing his first inhaler and heading to work, he seemed a more pragmatic than yesterday.
It has been several months since I have logged in, though I have been reading without logging in. I wanted to put in another nod towards being tested for Alpha 1. My 23 year old daughter is a carrier, we found out when her lungs started collapsing for no reason when she was 14. So, the whole family was tested and my H (her dad) is also a carrier.
I would suggest that if the Alpha 1 test comes back positive, then both you and your sons dad need to be tested to see which side of the family it comes from.
There is a wide network of support groups nationwide. I suggest finding one and attending for awhile if this is what it is. I can help you find one if you want, just PM me.