My share COPD / Emphysema

My hope is to share and maybe help some one.

Was told I'm dodgy... wandered into the wrong neighborhood

[garshe]

You are in the States here in UK its different. I have a Respiratory Team also a COPD team who I can contact any day and have a chat. They will call to my home if required. They prescribe any medication required so fantastic support.

Hope you find a solution to your health issues xxSheila 💕⚘

[Albertdog in reply to garshe]

How do you manage such visits...??

What part of the country do you live in - where I live I can't even see a GP never mind a visit from a nurse.

Any problems I have . I end up calling an ambulance ... and end up spending a week in hospital.

I have just come out again - any follow up - NO. ....at 86 years old with serious COPD and DNR on my records - I do not expect to do this much longer.

Perhaps this is their aim .....😡

[LiveSalt in reply to Albertdog]

It's a bit of a postcode lottery, really, in the UK. Some have "rescue" packs on hand, while some of us wait a week for a pack to be issued! Good luck to you Albertdog, keep going - if only to annoy them. Maybe it's time to make your presence felt at your surgery, after all they WILL forget you if they don't hear from you. Too many of us put up with a shoddy or negligent relationship with our GPs.

[garshe in reply to Albertdog]

I am very fortunate have wonderful support. Requested routine blood tests and got them. The teams are so supportive and know more than the GP, 's re Copd

.hope you can get some support. Takes the stress out of life. xxSheila ⚘💕

[Patk1 in reply to Albertdog]

Hope yr able to manage x

[Chinadoll81 in reply to Albertdog]

I have no support at all here in the Highlands. 81 and wondering if sexism is alive and wellShould have stayed in South Africa where medical was brilliant

Blessings and live xxxx

[Hidden in reply to garshe]

Hi Garshe yes I am in the state sounds like you have much help. This is always a good thing. I live miles from much of anything.

[garshe in reply to Hidden]

Yes great support from both teams .even check my oxygen levels with tests at hospital also. . Very fortunate indeed nothing too much trouble. Also very highly trained on Lung Diseases especially COPD. xxSheila 👍👍

[PaulineHM]

Hello big-air,

It is good to read of your progress through COPD via a sound holistic/ complementary approach to self management.

As garshe has mentioned we here in the U K, are very fortunate to enjoy health care at the point of delivery, and yes some meds do have some side effects.

What works for me is a blend of good nutrition ( yes low calories ) education, regular exercise (despite continuous flow oxygen ) medication, positive mental attitude, meditation and social connection.

Keep well.

Pauline

[Hidden in reply to PaulineHM]

Hi Pauline I agree with your approach, Diet, Education, regular Exercise are very important to managing this condition. I started with a very strict diet 2 years ago and it worked. How ever the last year I have eaten different foods testing them. So I'll eat something and see how it effects breathing an hour or two later. If it has a poor effect I will not eat that item again. Sweets as much as I love them, pie, cake, pastries are off the menu sugar can inflame the air ways (so I've read). But my experience has been a decline in ability to breath after consuming sugar. Being over weight is also a big problem.... I try to stay fit.

Sorry to hear you are on continuous oxygen I hope to avoid it. But likely will need it one day. I continue to search and work at delaying, stopping, this condition (emphysema).

Nice meeting you Pauline, may I ask what stage are you in?

[Bingo88]

Interesting reading. Thanks for your experience and suggestions. Hope you keep doing well. Brian

[Hidden in reply to Bingo88]

Thank You Bingo88 -- last week I dig a ditch about 2 feet deep x 1 foot wide and 200 feet long. Took me two days but I got it done. Plane on building a porch on the back of the house this spring and summer. Our frost line is 4 and a 1/2 feet down I'll need to go at least that deep for the footer. Am going to dig it by hand the porch will be 10 feet x 12 feet on block foundation. We still have freezing temperatures with snow on the ground here. But soon it will be gone and I'll get started.

Nice to meet you Bingo88

[Kristicats]

I remember that book. It was debated on here along time ago. Maybe SOME of the dietary advise is sensible but other advise is extreme, restrictive and unhealthy. The following summery written I feel was justified:-

Although If you plan to buy this believing you will reverse your COPD prepare to be disappointed. The author claims to have reversed his Mom's COPD (Emphysema) but provides no evidence to back up his claim, only anecdotal references to her improved mental and physical health. It is revealed at the end of the book that she passed away ,of the dIf.

As for the anti aging peptide there is little evidence or guarantees of safety on it here in the U.K. I would worry re side effects for people taking anticoagulants. Sure it sounds good though reading the advertisements.

It’s great though that people try safe things out and try to live as healthy as possible. As they say “what works for one…..,,”

Best wishes

[Hidden in reply to Kristicats]

Hi there Kristicats yes the book has some things I might question and have freedom to chose. How ever his mother went into decline due to his sister interfering with and taking over her care as far as diet and supplements were concerned. But apart from all that... I have the book I have followed the plan for diet, vitamins, and supplements. Some things I feel may be extra and not really needed. But I must say for me it is not a debate with another party, but living it through experience and it has helped me. I have not declined much at all from where I started 2 years ago after I received my diagnosis. I do not believe any thing in the book will reverse emphysema / COPD.

As far as the peptides go the GHK / GHK-CU has not been studied in depth for internal use for human beings. It has shown great indication and result with lab animals and in the dish with human lung cells. There are also medical papers that go beyond. One example you may look for is posted in the International Journal of Molecular Sciences. The review titled

Regenerative and Protective Actions of the GHK-Cu Peptide in the Light of the New Gene Data

Loren Pickart and Anna Margolina Received: 18 May 2018; Accepted: 2 July 2018; Published: 7 July 2018

So I am not reading advertisements, but medical papers. In the USA this has not gone through the medical trials to receive FDA approval and so must be sold for research only if at all. I have read a number of papers on it and they all seem to agree that it could / can cause remodeling of the lung tissues. As well as regulating irritation in the lungs keeping inflammation and mucus in check. some of the primary things that cause emphysema progression. If it in fact can do this it is a gamble I will take. in light of the mainstream medical community saying it cannot be stopped or reversed. These things may not be set in stone as they would have one believe.

The other peptide I mention by trade name and is a Natural Lung Peptide Bio-regulator. It is not sold as research only. It is a product from Russia and is being sold as a supplement here in the USA. For me in my opinion it works period. The trade name is Taxorest and my be found at vita-stream. I am late 2nd stage. For stage 3 or 4 I can not speak through experience.

Nice to meet you Kristicats I love a good comment A new day is a win.

[watergazer]

hi and welcome 🤗

[Hidden in reply to watergazer]

Thank You good to be here

[Mellywelly]

Good to know it's not just me constantly searching for things. What you have written is food for thought. I think you have to help yourself in this world, if you waited in-between making doctors appointments and actually getting them you wouldn't be getting very far. I will be looking into what you have said. 👍

[Hidden in reply to Mellywelly]

Thank You please have a look at the post I just put up

Learning About COPD / New findings COPD - Emphysema

I think you may find it interesting... do you like to read?