Confused and feeling alone

[cookiechic]

I was told I had COPD about 10 years ago, I have lived a normal life maybe the odd really bad cough in winter but nothing that needed hospital treatment, since February 2017 I have gone down bank quickly, my legs and feet are that swollen I cannot get any shoes on, it hurts to walk, if I stand up and move one foot in front of the other I start to get breathless, I'm not sleeping at night, I mange to get around 4 hours then I wake up out of breath, my Doctor has given me 3 inhalers Relvar Ellipta, Incruse Ellipta, and Ventolin, I am also on a host of other medications including 80mg of Furosemide each day for my legs and feet which doesn't help them at all they are still swollen, My GP referred me to a Consultant at the hospital, I waited 9 months before I got an appointment to see him then when the letter did come thru I had to wait another 3 months before my appointment date, Anyway I saw him and he sent me for all different kinds of tests CT scan etc etc CT scan came back ok no nasty's showing, also I have seen a Heart Doctor who has dismissed that the oedema is Heart related, the last time I saw the Resp Doctor he sent me for a 6 minute walk test which I did last week, I wore an oxometer whilst doing the test and it hardly changed, my O2 levels were around the 92% mark thru it all even thou I could barely breathe, I had to stop around 5/6 times time to catch my breath, even the nurse was surprised at the readings, he also prescribed me to use a nebuliser 1 neb 4 times a day ( I'm using it more than that ), I have got to go back to see him at the beginning of July and I know I am not going to get any satisfactory answers from him, I still don't know what form of COPD I have, I am 57 years old and I cannot go thru the door without any help so I am stuck indoors unless my husband is off work for the day, I have been off sick from my job since September last year and now I have to retire on ill health I loved my job working on the Switchboard at the Hospital but I cannot do it because I'm out of breath talking.

Sorry for the long post and it's my first one too, tbh I don't know why I have posted it, I don't know if I want advise on what to do, or advise on what to ask the Consultant, I just feel so alone, my 10 year old Granddaughter asked me the other day * nana why don't you play with us like you used to do* it really upset me

[mikeadams51]

Have you had kidney and liver function blood tests done

[cookiechic in reply to mikeadams51]

Hi Mike yes ive had all those tests xx

[mikeadams51 in reply to cookiechic]

Sorry I cannot think of anything else that might help. So keep your spirits up, hard I know, but there might be solution round the corner. Hopefully!

[Hidden]

Bless you cookie chic........I wish I could solve it for you as it certainly is a puzzle as to exactly why you are suffering so badly . I can't give you any answers but there are very knowledgeable and caring people on this forum who can so don't despair and don't be lonely. This is the best place for you amongst people who will become your friends. Take care xx

[sassy59]

Welcome cookiechic, don’t worry about reasons for posting it’s just nice to hear from you. You have certainly been going through the mill just lately and sometimes it’s just good to chat to others.

Clearly things aren’t right and perhaps you need more tests to try and establish what the problem is.

Please stay in touch as this is a great forum full of caring people who just might be able to help.

Take care xxxxx

[Hidden]

I must ask. Did the heart doctor say that the swollen feet were not associated with your heart? Your symptoms are so similar to mine when I developed dilated cardiomyopathy. My sats are always 98 or 99 but the breathlessness which developed when my heart problems started is more severe and different to that caused by my bronchiectasis and I had swollen legs like tree stumps at one point. It took me three years to persuade them to look properly at my heart, Now I have the heart medication life is easier but I do still get breatless from my heart. Maybe keep pushing to have it looked at again.

By the way, instead of feeling sad and hiding your condition from your grandchildren just share it with them gently so that they understand how much they can expect from you. I have 5 grandchildren who all know my limitations and enjoy themselves with me within my capabilities. As they also have a grandad ( their mother’s father) who is even worse than me they just take it all in their stride and there is still much jollity from them when One of us arrives.

[cookiechic in reply to Hidden]

Hi Littelpom yes she did tell me that it wasnt associated with my heart, ive had ecg, echocardiograms my resp doctor insists it is but heart doctor says it isnt

[Hidden in reply to cookiechic]

Oh dear that doesn’t help you does it.

[Megan321 in reply to cookiechic]

I think u need to get a second opinion re..... heart.... they could be wrong✌️

[hypercat54]

I agree with Littlepom about your grandchildren. They will take their lead from you so if you treat it like a game so will they. x

[Linnie13]

Hope you get it sorted, I don't think this hot weather helps my ankles have been getting swollen, ,I drink loads of water and keep them up as often as I can

[Dubba61]

Hello Cookie, n welcome. I'm so sorry about your recent troubles and I have to say that I too, have no helpful answers. I have an Aunt ( older than you), in a similar situation, though and the Docs can't pinpoint any, one, particular cause. So far. Appart , from her COPD. As others have said, your Grandchildren will be excepting of your condition, as Children are marvellously resilient. And it teaches them about Life and being compassionate, too. Do keep in touch with us on here. People are very, caring and nice. Best wishes 😊🌻✌️

[O2Trees]

Hi Cookiechic, I can't really add much to what has been said - you're in a horrid situation feeling so ill and not getting answers. Linnie13's post made me think of something - Ive had ankles and legs like Littlepom's tree trunks, though only when Ive had pneumonia. But last time I had them my respiratory nurse asked me if I was drinking enough and said that often people with swollen legs won't drink enough in the hope that this may decrease the swelling. Becoming dehydrated is really bad for all our conditions, but if this doesnt apply to you, please ignore - I just thought I'd mention it in case. I realised when I was asked by the nurse that despite knowing that drinking enough fluid is essential to help stay well, I was often forgetting.

Enough of that - Im glad you've posted. I'd suggest asking your GP to write a letter to your respiratory doctor and the heart doctor jointly and explain that these contradictory opinions about why you are getting the swelling are upsetting and confusing you. In some ways the NHS is brilliant, but it's not always very good at joining up the dots but your GP is meant to be the gatekeeper to all the different medics you see.

You could try calling the BLF helpline (03000 030 555 office hours) and talk your situation through with one of their nurses. And do stay in touch, take care :

[Hidden in reply to O2Trees]

Hi O2 I have water retention problems that are only really helped if I double up on the prescribed 40 mgs furusomide . I recently was told by doc that I should wear tight socks as a preventative measure the logic being the water would be pushed back up my legs....I don't know if that would work as I haven't tried it myself yet. I have heart failure so that is the cause of my water retention. Re the liquid intake...I drink lots of tea and coffee ( decaf) ..is that counted towards the water intake do you know?

[O2Trees in reply to Hidden]

Well coffee is a diuretic but I don't really know the answer to your question. Generally I've always read that water is the best thing to drink, and it's what I always do drink. The milk in coffee and tea won't count obvs.

[Hidden in reply to O2Trees]

Thanks for your feedback 😀

[cookiechic in reply to O2Trees]

i drink around 2 litres of water a day, i was warned by my doctor that if i didn't drink enough water whilst on Furosemide it could damage my kidneys, and i think i have enough to worry about with out worrying about my kidneys too lol

[anng1814]

Hi cookiechic,

It sounds awful what you are going through. If you can't get any satisfaction from your GP contacting the consultants, I think I would ask to be referred to a different lung/heart specialist. Could you afford to go private?

I have seen 4 different lung specialists on the NHS in the last two years, 3 of whom were locums. With the exception of 1, it has been a waste of time. One did not speak English, another was not aware that I had come to get my scan and blood test results after waiting over 3 months. He was very rude when I forced him to look at his computer. However, it was useful in that I read the radiologist's report with him, which gave me a clear diagnosis of emphysema. The final consultant that I have just seen was the real NHS consultant. He was an hour late as he had been delayed in a meeting. I thought it was strange that I did not have to have a spirometer test done, as it is a year since I had one. He asked me a few vague questions, told me my oxygen readings were good and since I had not had an infection discharged me. Our particular nhs hospital is under special measures and I believe this lung consultant is very overworked so I believe he has been told to shed some patients.

I am a similar age to you and also love my grandchildren, who are both boys. They are resilient, but I'm so sympathetic to you when you can't do things with them.

Do take care

[stamford1234]

You sound very depressed, not surprising really with all you have had to worry about. Giving up work must have been difficult. I hope you start to feel a bit better soon. Can you knit? Why don't you teach your granddaughter?

[Sjf129903]

I'm at somewhat at relief with post here as I'm going through EXACTLY the something as you are except I live alone I don't know what to do anymore especially about our feet...the swelling is so badvand gettin worse but won't spread past the ankle starting to show blood spots.....skin so streched it burns I'm scared to death to goto hospital affraid to tell anyone about wear slippers all the time to hide them thank you so much for sharing

[Welshsteveee]

Theirs still might be hope,try looking-up Jeff copd waters.

[Johnem]

Hi cookiechic. My symptoms are identical and it was recently found out via Echocardiogram that I have advanced heart failure along with my COPD, which unfortunately is not uncommon.

I really do think that you need to ask for a second opinion via another Cardiologist, especially as your respiratory specialist appears to disagree with him/her.

Best wishes,

John.

[Herz]

I have been where you are at and still am. I entered into a lung study here in Kansas a month ago and they did a CT scan immediatly not just the lungs, but my whole upper body. They called me an hour after I got home to inform me that it was not my lungs after all. It was my heart. Amazing... All this suffering and never getting better. Inhalers and Oxygen, lots of Prednisone... 3 years now it has been really bad. So looks like after today I am getting open heart surgery. I have what is called Aortic Stenosis... It mimics the same symptoms. I hate the idea of surgery but looking forward to living a normal life again finally. Beware, these lung doctors at least here do not always look at your heart! They automatically “assumed” that I had COPD, Emphysema simply because I am an ex smoker...😏

I hope this might help someone here.

[Megan321]

Maybe you should also get a sputum test done to make sure you don't have a bacteria that is making the COPD worse....if u don't have enough sputum, ask about a bronchioscopy....you have to be an advocate for yourself..a lot of times, they just leave it✌️