23 with Emphysema

[joshuagarthwaite]

Hi, I am a 23 year old male diagnosed with COPD emphysema. This is my first time on the site and am wondering if there is anything I can do to help my lungs improve naturally or any herbal remedies that will help my lungs function better or repair themselves in the coming years. I have smoked for around 8 years and have stopped since finding out this news. I spoke to the doctor at the hospital and he was very brief and said it is irreversible and there is nothing I can do. Any help would be appreciated, thanks.

[Katinka46]

Hello Joshua

Wellcome to this forum.

You are very young to be diagnosed with COPD and Emphysema. What were the tests that were run? Have you been tested for Alpha-1-Antitripsin-Deficiency? What are your symptoms? And how severe? Have you got a copy of your pulmonary function test? If so would you be happy to post them here? Sorry, I realise that that is too much interrogation. But I should love to hear more about your story.

Kate

[joshuagarthwaite in reply to Katinka46]

I am going to my doctors this week to find out more about it. I had a spontaneous pneumothorax back at the end of February this year and have only just received the results this week. I had blood taken while I was there so will hopefully get the results back asap. I have not been tested for Alpha-1-Antitripsin-Deficiency unless that is what they took my blood this week for maybe? As for symptoms I just feel like someone is pressing down on my chest and it feels tight and sometimes when I am breathing in I have a sharp stabbing pain in the left side of my chest. The doctor said it is rare for someone my age to have it which was making me think I might of been born with it. I'm going to be honest it has really scared me and I want to find out what I can do to improve my health. I have been prescribed a salamol (salbutamol) inhaler and also a Spiriva (Tiotropium bromide) inhaler.

[Katinka46 in reply to joshuagarthwaite]

I assume they have ruled out pulmonary embolism? That would cause your symptoms. Push for more answers.

All the best and let us know how things develop.

Kate

[joshuagarthwaite in reply to Katinka46]

I honestly have not had much information about what is happening to me which is what's making me more worried. I will ask the doctor this week when I see him but I have had a CT scan a few months ago... wouldn't it show up on that?

I appreciate your response Kate,

Thanks Josh.

[Katinka46 in reply to joshuagarthwaite]

Did they do a CTPA scan? That’s the one with an intravenous dye trace, and they usually warn you that it makes you feel warm and as if you’ve wet yourself (!). The dye shows up the blood vessels in your lungs and they can see if there are any areas of non-perfusion which could indicate PEs. However, I have had CT scans in which abnormalities have been missed. So be assertive and politely insistent. I asked for a second opinion on a scan and my consultant already had another radiologist lined up and, yes, he found the abnormality we were expecting.

All the best

Kate x

[joshuagarthwaite in reply to Katinka46]

Yes they said when I had the scan it would feel warm so I'm guessing it was a CTPA scan. As I said before I know nothing about what is going on really, I put it of and only just this week started researching about it. I was thinking of going private instead of going through the NHS as they seem to take a very long time to get back to me. The first time I went with chest pains they sent me home even though my lung had collapsed. I went back in the next morning and went straight in to surgery for a drain. It took them 3 months just to tell me that it was COPD/Emphysema. I just want to try find some natural remedies to help improve my lung as I don't really like taking tablets or these inhalers. will update when I find out more.

Thanks again Josh

[Hidden in reply to joshuagarthwaite]

To diagnose copd/emphysema in someone so young following a spontaneous pneumothorax doesn’t sound right to me. I think that Katinka had better ideas. You need a really good respiratory consultant as it seems to me that the people who have seen you so far don’t actually know what they are looking at and failed in their duty of care towards you by sending you home with a collapsed lung.

I don’t often recommend going private for our lung conditions but I think that you need to know quickly what is going on and so if you can afford it- and the tests I would say find the best that you can. Preferably one who also works NHS so that you can transfer to their clinic when you get your proper diagnosis. I would also recommend that you get your GP to refer you for an A1A Antitripsyn test just in case you do have copd which could have developed at such a young age due to that genetic cause.

I hope that you get sorted out soon.

[garshe in reply to joshuagarthwaite]

I was diagnosed COPD severe 9yrs ago .gave up smoking immediately and lung function improved. I have lately been taking supplements. CHLORELLA and Turmeric also Spirulina. I eat plenty of broccoli and green veg which is great for lungs. Also bananas. Keep your fitness up as exercise improves lung function.you are very young so hopefully your condition will improve now you are not smoking. .Good luck and stay Positive.

Sheila.

[MacColl in reply to joshuagarthwaite]

I'm on Ventolin and Spiriva Respimat too, but for asthma because I can't tolerate steroid inhalers. I also have Uniphyllin tablets.

Nothing worse than needing more explanation and information - I found out far more once discharged from hospital and talking to a private consultant when I had U. Colitis/Sepsis - we'd had nothing explained properly when I was in hospital.

We even eventually made a private appointment for my husband who isn't privately insured, but it was well worth it as he needed treatment. Not saying that you do by any means at all, but if even a one off consultation can put your mind at rest one way or another, then if you can afford it, then it is worth it for speed, reassurance and more information.

If undecided, and you have a local Nuffield hospital, phone them - they will advise on the cost of a consultation with no obligation. (I only know of Nuffield hospitals as that is what we used).

No need to accept any treatment privately either - the important thing is to get the facts, and if further treatment is needed, then get referred to an NHS doctor/consultant as tests and medication can be expensive privately, and often no difference via NHS GP's.

The most important thing is that you get a diagnosis or information that you trust and understand, then you can concentrate on being as well as you can be!

Worry always makes things feel worse.

Shame you don't have a respiratory nurse practitioner - the one I have at my GP practice is terrific, and always willing to discuss things and help.

[AndrewT]

Dear Joshua,

I'm probably NOT the best person, to ask about Lung Function, as I have Kidney Disease- I had a Transplant, in July 2013. However, I think, that that Doctor was VERY rude to you! Even IF, what (s)he says IS correct, I just don't know unfortunately, that is no way to talk to a- no doubt worried- Patient.

Apart, from knowing, that The Lungs can be affected I know 'Not a Lot' about the Mechanism(s) involved- beyond some Autonomic responses.

Sorry that I can't be 'Much Help' here Joshua though, I know, that 'Others' CAN help....and yes, you are 'in' the right place.

Thanks for becoming a 'Friend', I have reciprocated, even though I might NOT be much 'Use', to you.

Warmest Wishes anyway

AndrewT

[oldbulldog123clock]

Currently they are doing tests at Texas A&M University, and the University of Nebraska utilizing Ibuprofen as a way of killing the disease. These tests are on the internet and I am a little irritated that they have not published their findings which are being funded by NIH and wonder if politics are slowing things up on the research? Your doctor has little to no bedside manner and there is no cause for that.

[shortbreath in reply to oldbulldog123clock]

AT THE SAME TIME WHY SUGAR COAT SUCH A TERRIBLE DIESES.

IT IS WHAT IT IS AND ITS TERRIBLE.

[oldbulldog123clock in reply to shortbreath]

One of the things I have learned as I get older, now in my seventies, getting mad doesn't solve anything by it self, getting focused to find a solution is my mantra. Within the next week I will reach out to the doctors involved in the study and try to pin them down in a polite and professional way for their input. For all I know now it is possible that President Trump prevented the funding to be ongoing etc. As of know, since I offered to be a participant in the study (they were full) I am at least a known person to them. My understanding is there is a part of Advil (IBP) that they are working to get out of the drug enabling us to take higher doses of the new medically mutilated Advil which will kill the disease. Right now if we take too much ADVIL it will take out the emphysema but as a side issue, it will kill you. I have beaten cancer in the 1980's (hurray for radiation) Survived a stroke that temporarily made my face look like a Dick Tracy character (Thank You Baylor Hospital) Had numerous heart attacks with stents etc. Followed by the Widow maker heart attack which resulted in the power saws to cut my rib cage open for a six way by Pass (Dr. Acuff, you are the Best! I died twice on the table) My wife and I have our own retail business, I repair/restore any size any age antique clock for museums, historical society's and private collectors. I work out in the Gym 3 times a week, go to physical therapy twice a week, see 2 of my grand kids every week for baseball training etc. So you see short breath I am to focused and to busy to feel sorry for my self, When I die my body will go to science and when they are done they will cremate the unwanted parts into a urn. I got tail ended by a cement truck putting me in the hospital when I was younger, and I looked up at my Welsh Grandmother, and said, Why Me? She said; "Why not you?" "You will get through it and be a stronger man for having gone through it" She was right, so please don't get mad, get busy looking for the solution~ It's out there we just need to find it.

[skooch in reply to oldbulldog123clock]

Lol at ur granny x

[oldbulldog123clock in reply to skooch]

?

[Badbessie]

Obviously you are very young to have copd/emphysema. As the Doctor told you what stage? You have done the best thing by giving up smoking you should now look at your lifestyle. A good diet and exercise will help you. From reading other posts after giving up smoking a lot of people's respiratory function did improve my own went from low 50s to mid 60s. It is a very anxious time for you but do not think it is the end of the world. Once you have a definitive cause you can make more positive plans.

[shortbreath]

Unfortunately your doctor gave you the correct answer.

You can maintain a good life style by taking your meds religiously every day.

Very important to stay away from cigarettes and others that smoke.

I'm a SEVER case, have had COPD for 13 years, it progressively gets worse.

I'm on oxygen 24/7, nebulizer 4 to 6 times a day, 3 different inhalers twice a day, and the most important thing I can tell you other than what I already have, is to STAY ACTIVE..

GOD BLESS.

[Hacienda]

Hi Josh, Welcome to the Forum, If you don't mind I shall "Follow" you to keep updated on your progress. I do hope you are not too overloaded with all these Great responses to you, It is always best to Hear from our Friends on here, they are all the Experts and say it as it is. Best wishes from an Old Gal with Emphysema/COPD. Look after your self Hun. xxxx

[Brazier1248]

hi speak to your doctor to refute you to primary rehab you exercise and they help you control your cops I hope this helps you

[Christabella153]

I got COPD 8 years after giving up smoking but everyone who smoked on my dear mothers side had it also so must be the Alpha-1 so was unlucky. So 14 years since diagnoses waiting for appointment with Cardiologist since before Christmas so on hold for the moment as Doctor & Oxygen Nurse (who I see at Chest Clinic once a year) both believe it is the second Heart Condition Angina making me so breathless when walking. Not on Oxygen yet I use Eucalyptus Oil for breathlessness which helps but as I have high B/P have to be careful using. Singing helps also pursed lip breathing when breathless keep moving as much as possible try to eat well God Bless XC

[joshuagarthwaite]

I am so grateful to everyone for there input and comments it is very much appreciated. I still haven't seen the doctor yet as I have been busy working but will defiantly be going next week to find out more about what's going on. Will Keep everyone updated has been a lot of help.

Thanks Josh