Breathlessness-went back to see GP

[twinks1954]

Diagnosed 2 weeks ago today - Happy Anniversary to me- with COPD after having Spirometry test with Nurse. My FEV1 reading before inhaler was 71 and after 73. FVC was 109.

Told me to come back in a year. Prescribed Salbutamol and Qvar100. SOB was constant and when I saw GP yesterday she prescribed 7 day course of Presidone 5mg. Day 2 of taking them so they haven't really kicked in yet.

I have to say, these last 2 weeks of coming onto this site has been so informative and all of you have given me ideas of what questions to ask. I asked GP yesterday if I could be referred to Pulmonary Rehabilitation Group and she said she will do that and well done me for asking for it. I wouldn't have known to ask for it if it hadn't been for your great posts and information. That worries me. Do I now have to spend my time seeking out treatment/ideas and taking it to my GP? I asked if I could be referred to Pulmonary Consultant but she didn't like that idea and said ' lets see how you get on with RA Group'.

I switched to ecigs in March this year after smoking for 40+ years. Thrilled that it worked for me and haven't had cig since then. Now I want to ease off ecigs. Wonder how they affect spirometry reading after using them.

Here is my wee check list:

Need to lose weight but do not feel gym is for me.

Will use exercise bike and treadmill at home.

Go out for walks as often as possible.

What are best vitamins to take? Been reading on posts here that Vit D3 is good.

Had awful leg/foot cramps last 2 weeks and read from posts the need to eat bananas as that helps. Learn more from you wonderful people than my GP.

Am I missing anything else?

Thank you all so much. Another night sitting on sofa for me I think. Maybe it will take for me to get to day 3 or 4 for Prednisone to kick in.

Thanks you all so very much.

[phillips1]

Hiya Twinks. I'm glad it went well for you at the GP's. It's no good me giving you advice, you know what us men are we just blunder on in our own sweet way. I am sure some of the ladies will soon be along to tell you about all sorts of things. One tip though. If you have any choccy there hide it if you see Scrobbity coming, she will steal it all. Have a good night sweetheart.

Bobby xxx

[Puffthemagicdragon]

I'm doing the banana thing and vitamin D3. My cramps seem to be far and few between now so maybe it works. I'm not sure about the D3 but it doesn't seem to be doing me any harm so I'll plod a long.

Another thing is to try and get rid of the mucus. I'm using Flutter device. It works for me and these can be got on the NHS.

[scrobbitty]

Hiya twinks - your chocolate is safe......... for the moment LOL.

Well at least you are getting somewhere now and yes, you probably will have to take ideas and suggestions to the G.P., some are very aware of lung problems, others less so. At least you can pick our brains and get a good idea of what applies to you to take forward. Bananas are good for the cramps and I take multi-vitamins religiously every day even though I eat healthily, because of the Crohn's Disease I need them. xx

[sillywitch]

A lot of people get prescribed Mucodyne for the mucas but I,m affraid I,m allergic to it, I get a lot of cramps in my feet to the point I,m woken every morning in a lot of pain, tried bannanas but no joy,

I hope the steroids kick in soon for you twinks, there is nothing worse than feeling ill, especially when the sun is shining

Keep up the great work with the E,cigs you can reduce then by getting lower strengths, & doing it that way, I wish you luck with it

Karen

xxxx

[twinks1954]

Haha Bobby. You don't blunder at all. Your strength, humour and spirit shines through your messages. Can I ask you what stage you were when diagnosed?

Yes Puff I will buy some D3. I find I don't have a lot of mucus. well coughing up anyway but maybe it is in there. so will get a flutter device. oh I ordered a salt pipe and it arrived today. all these weird and wonderful things to try.

step away from my mars bar scrobbitty. hee hee. with all this wonderful advice.................. I would gladly give you my last rolo.

oh, my son told me on sunday that they are expecting a baby. I have always wanted to be a gran and soooo excited. early days as due in march.

[scrobbitty in reply to twinks1954]

Your mars bar is safe - am on a turkish delight hype at the moment !

Brilliant news about your son, something really great to look forward to xx

[twinks1954]

thank you Karen. have you tried the flutter device to get relief? Cramps are painful aren't they. Get them in toes and calf of leg. I have cut down ecig during day now and just have it in evening. Also cut down on the nicotine strength. Yesterday didn't have ecig at all but couldn't stop myself this evening. Here's the funny thing............. I got oximeter and glad I did............. my reading has been 91 - 95 but mostly staying at 93. Maybe that's reason for my breathlessness I don't know. Anyway, when I have had ecig it goes up to 97/98.

[scrobbitty in reply to twinks1954]

The nicotine opens up the airways, twinks, it acts as a bronchi-inhalator - mad isn't it?

[twinks1954]

Yes it is mad scrobbitty. I know its the tar and everything else in cigs that is bad but wonder is nicotine bad for lungs. Depends what else is in ecigs I guess. We don't know answer to that one yet

[Hidden]

My husband gets very bad cramps from his ventolin (blue) rescue inhaler, he told the doctor and she gave him a new inhaler - Bricanyl which is a rescue inhaler and does not give him cramp. I think you will find the PR course really good - you will lots of information and the nurses have great information. My husband has never been referred to a consultant but the PR team have told him that if he feels he needs it they can actually fast track him to the chest consultant. Hope the SOB sorts itself out for you.

Sorry to say I have found that you have to ask and find out information yourself! This site is so good though with lots of lovely people willing to help. Take care of yourself, TAD xx

[twinks1954]

Thank you Tadaw. So glad I found this site so early on and information given is priceless. I know they haven't referred me to chest consultant but I am just so pleased that they will follow through with referrel for PR Course.

Thank you all and take care

[Hidden in reply to twinks1954]

Hi Twinks,

My nurse changed one of my inhalers a couple of years ago and I got really bad cramp in bed, went back to her and she changed it to another and I was fine. So sometimes it can be the medication.

Slade

[Hidden]

Since I joined this site last Autumn, I get a lot of information from reading the blogs, and making notes. I had to ask the GP twice for PR referral which was given willingly but not automatically. I am wondering if it adds to their costs.

[Pete762]

Hello Twinks, Requesting joining a Pulmonary Rehabilitation Group is the best thing you could have done. I have had emphysema/COPD for 6 years that is now severe, but was not referred to a PR group until Jan this year after hospitalization - the best treatment I have had. The specialist nurses running my course were very pretty but more important, they knew what would improve my lung condition and had all the answers to my questions about treatment.

Keep on at your GP until you get a date - I wish I had known about this service 6 years ago.

[twinks1954 in reply to Pete762]

Hi Pete, that's terrible that you had to wait so long. That's what I meant about if we don't know about courses etc that will help us then we don't know what to ask. Hearing about Pulmonary Rehab Group on here has been so good and I now see the need to be pro-active and not just leave it to GP to guide me. Yes I will keep on to GP till I get a date. What do you think, leave it a month and if I don't hear anything get back in touch? Sorry to hear you were in hospital in Jan. Do you get flu and pneumonia jab? Can I ask please what stage your copd was when first diagnosed?

[Pagandog]

It took 4 years to diagnose my ph. I had so many tests, a number of them for cancer, before we got a really good male gp who sent me to the heart specialist. He first mentioned PH and referred me to the lung specialist who referred me to the PH centre at Sheffield. From then it was all go because by then I was literally dying. They did tests and confirmed it and started me on Bosentan and oxygen therapy. My PH is associated with Systemic Sclerisis. I know take quite a few medications including the latest, Sildenafil (Viagra)

Hope my story helps you. if you are on facebook we have a small, but friendly, group called Pulmonary Hypertension Association International so please feel free to join us and put any worries you have forward. It is for patients, carers and those who ant to know more about PH and need support

[Hidden]

Hi Twinks, if your really having a problem getting off the Ecigs try one of the Vapour ones!

[twinks1954 in reply to Hidden]

Hi Retreat, I have ecig which looks like cig and EgoV2 vape. Do you use ecigs?