Help. I am 38(f) and am confused COPD

As do I. Thank you for your reply. I was just sort of shocked that no X-rays were involved.

Hi i have got this virus cold thing second week now, i fetch rubbish up mostly mornings and some during the day but it's that thick it's like having a drink and it goes down the wrong way and takes my breath a bit.

Thank you so much. I was taken aback and just flustered at myself. I will be seeking docs advice on further testing.

Good luck Lizzielove, keeping fingers crossed for you that it is only in the mild stage and there is so much you can do to help prevent its progression. Best Wishes V  

(Some information and tips here:  https://patient.info/forums/discuss/tips-know-the-difference-478568 )

Thank you so much. I have plans to call the doctor on Monday.

Good.  Let us know how you get on.  x

 

I don't know where you live Brenda but I am in the UK.  I doubt whether the NHS could cope with doing lots of tests unless they suspected there was something else going on apart from copd.

As far as I'm aware the spirometry test is the one they always do first and they can diagnose from that.  I have high moderate copd and never had anything other than this,  I even had to push and push for a chest x-ray and it took 4 years for my GP's to begrudgingly agree.  x 

 

I thought you knew that I am from the USA? I was stating how I felt was the first ways of finding about COPD, and gave my opinion. The doctor's here usually begin by giving the PFT (pulmonary function test), and we are told to use an oximeter, in order to know our oxygen blood sats., while at home. The PFT include spirometry test too. I am sorry that your doctor's won't allow more testing done, but, we go by our own insurance plans (yearly chosen from Obamacare), as what kind of medical plans n testing's we will be given throughout the year. We choose our own doctors, according to our plans doctor lists, and each plan pay's by percentage's for all other testing, pharmaceuticals, imagery, equipment, etc. I always center my thinking around my own lung condition, whenever choosing a plan, and this is why I can afford many tests following the spirometry. That was nice that the GP's gave you the chest x-ray. Take Care. 

No sorry I didn't know you were from USA.  I can't comment then as I don't know how the system works there.  x

 

Hypercat, that is okay, and I understand, but, we still have to pay, and the expenses are called co-pays, and there is a co-pay for everything,  all medical procedures. The co-pays depend on the plan chosen each year. Plus there is a monthly fee called, a premium, and the monthly premium costs are due to the type of plan chosen also. We are at liberty to have any kind of tests, or procedures possible, but it has to be approved by our doctor...we can also choose our own doctor, it the doctor is supported by the chosen plan. I made sure I got a very good plan the first year of my condition, so I could find out as much medically possible about it. Lately, my plans are average, because I now know, thanks to having all those tests done that first year of searching. I no longer need an expensive monthly premium plan. I know this may sound silly, but myself, along with other Americans, like the plan you have, because it seems you don't have to pay for anything, but not sure.  xo

People in work in UK do have to pay prescriptions charges and other medical expenses such as flu jab, dental, optometrist etc. however medication prescription costs can be no where near the amount that the drugs would actually cost the NHS. A person wishing to go private of course has to pay for medical - that means they don't have to go on the NHS waiting list for any appointments or operations required, for NHS patients may have to wait some time to see a specialising consultant and can wait up to 6 months for an operation. Cancer patients are the exception.  Some people with cateracts for instance may have to wait 6 months unable to see properly before a schedule operation appointment is mad3e available.  Its swings and roundabouts.

This is where here on patient UK, a non UK person cannot advise UK residents on these things as UK residents cannot advise non UK residence on their own country's medical situation.

No doubt it would be helpful if people can identify the country they reside in then those in same country can advise and others need not reply.

 

A very good reply Vee and I totally agree.  x

Yes, very well said, and helpful too, thank you Vee…..it would be nicer to know the country, also, I never thought to ask either, but in all sincerity, I meant to help though

Vee, what country do you live in?

Years back, this being a Patient UK site I generally answered people as though they were patients in UK.  However I have in the past frequented US lung discussion forums so appreciate how much health care can differ in different countries.

Yes I appreciate you meant to be helpful we can but share our own experiences.  

I am living in the UK  Brenda

 

Thank you Vee....I remember reading some of your comments, and you are very helpful! But, for some reason, I don't know why, but I thought you were from either Canada or USA. I definitely agree, that each country, and their type of health care system, are very interesting .Chatting with people from all over the world, and many different health care systems, can really be very interesting, due to all their many differences. It is so nice talking with you, and thank you for sharing! Xo

Yes for sure Brenda but because they are different I would advise people to approach the lung foundation or association in their own country for detailed help regarding care and procedures and treatments (the latter can have different names for the same medicine for example)  Often if people make contact with the lung foundation in their own country they can access a local helpline and support groups that they may be able to access in the area they are living.   In addition lung foundation / associations around the world often have great educational resources accurate to their own country so more useful to a patient in their own country, with links to help and support groups etc.

Vee, yes, I agree, regarding seeking out medical help groups, located in our own countries, in order to ask for important information, questions, and help. Most all of them probably have websites for researching too. I agree, these groups are very helpful and valuable! But what I like the most about this group or forum, is there are members from different countries. Nice talking with you!

You say "what you like most about this group or forum, is there are members from different countries."

I have found this to be the case in just about all the open internet support / discussion forum I have frequented myself, although I have not frequented all, I am familiar with  several US support forums sites for COPD and other illnesses similar to here at patient UK and BLF  

  (if anyone wants the links just pm me)

Nice talking with you too brenda

Vee, The reason I had so many tests done was,  because it took them three years before they could find out what was wrong with me, because my symptoms were very exaggerated COPD symptoms. Right off the bat, I am on oxygen 24/7, and wheelchair, since couldn't walk long distances, etc. I am not that old yet, and they new that I had something else, mainly from just first glance, since I presently look very healthy, and now frail due to later stage and later stage symptoms caused by having COPD. The tests ended up showing that I have a very rare lung disease called, Bronchiolitis Obliterans. BO is inflammation of the tiny airways, or, bronchiolitis's. It is not the swelling of the bronchitis (large airways), but is the swelling of the smaller ones. The larger airways deal with smooth muscle inflammation, but the little airways have no smooth muscle, and therefore it is the tissue that swells only. So, due to tissue, is difficult to un-swell. The larger airways swelling can be reduced, due to asthma medications and pumps, but there are no medications for the smaller airways for reducing their swelling. Because of the swelling, it is difficult breathing air inside the lungs.  I find it difficult finding others to communicate with that have this same disease, and also find it difficult finding a website supporting it. They say that the only cure is transplant, and they don't know what medications are good for it. I have found a few other people with it, but only on transplant websites, and they are going to have a transplant and look forward to doing so. They are brave, but sooooo encouraging and inspiring!...lol. But, I am not sure, but if you know of any website that has the "Bronchiolitis Obliterans (BO)" lung disease, please let me know through a message sent to me (this site), and thank you so much for all your help! xo

Sorry, there is a mistake in spelling.....in about the fifth sentence from start (above), 'now frail due to later stage' should read, 'NOT frail due to later stage'. Sorry. 

Hi Brenda, I will pm you later today, in UK Bronchiolitis Obliterans is not COPD as such but it is a different lung disease issue, BLF site will explain this to you, in the mean time, go to BLF UK or maybe the AMA and type in Bronchiolitis Obliterans its a question of using the search box on site or just being selective when you search.

Bronchiolitis Obliterans.

Bronchiolitis Obliterans support forums etc  when using a search engine I always follow the key words with UK if I am looking for myself but you may want to first search USA.

Good luck

https://www.blf.org.uk/

you may find BO under BOOP on the Blf site.  

AMA should read ALA ( American Lung Association )

Hi Vee, I plan to still stay in this forum, since I love to read and learn about other's who have COPD, because this is what I thought I had at first for many years, and have been on this site, reading and learning. It is difficult to leave something that you have become so attached to, and want to also help other's too. 

 But, even though, I will be checking out all the other sites that you have sent me, and thank you so much for all the many sites you have provided Vee! I love them, and will be researching them as soon possible. 

Also, I agree that BO is not under the COPD category, but the COPD  has the same symptom's, due to having obstruction (inflammed tissue inside small airways). So, I do pick up ideas on COPD sites too. Lately, I have been a member in a few double lung transplant sites too, because I may actually try to go through one, one day. My doctor suggested me to review and join this type of site, so I can learn from them...they are very interesting! 

Thank you so much for your help and all the links! 

Hi Brenda

Yes for sure you are welcome here I am sure there will be others you can help support and vice versa, the breathing difficulties affect us all similarly.  Its good to know of other locations as well on the internet,and true you can get attached to chatting on different forums.

That's great you have contact and support at the transplant site in case you need to go that route.

Stay as well as you can.

Best wishes V

Hi I am a member of the British Lung Foundation site and this is for all lung diseases from asthma to bronchiestasis.  Although the majority of lung sufferers have copd there is everything on there from mild asthma to sarcoidosis!   I have seen BO on there too.   Even though it is a British site there are a number of foreign nationals and everyone is equally welcome.  Hope to see you on there.  x

 

Vee, thank you so much, and yes, so true, I will be enjoying the other sites too! Thank you so much for giving them to me, and they all seem so nice. I enjoyed chatting with you, and if you should need any help or information, or just to talk, please contact me at the message center of this site. 

Brenda xo

Hypercat, thank you for the information, and I will be researching it, and hoping to see you on there too! 

Brenda xo

 

  Yes I am on there daily but under a different name.  I will watch out for you though....  x

thanks Brenda, I do find the British Lung Foundation home page is a great online encyclopedia resource on every lung condition + it has a help line so a great resource for all UK based and those overseas.   

Vee, you are welcome, and I will be researching the British Lung Foundation home page also...sounds like it is a very good website that has a lot of information on almost everything. We will talk again! xo

Hypercat, I hope to see you on there too! Ty! xo