Newbie COPD Breathlessness After Quitting/Menopause/Insomnia

Hi everyone. My name is Suzann. I stumbled upon this wonderful site / community some weeks ago and have very much appreciated reading your discussions on various topics. Your generosity of spirit, warm support of each other and input from personal experience is so welcome for people like me who are "newishly" diagnosed with copd.

In May 2013 I was diagnosed with endometrial cancer. Before surgery I was sent for ct scan of the chest, abdomen and pelvis. I was told the results were good. meaning no cancer spread to other areas or lymph nodes etc.

I had a radical hysterectomy the following month. The morning after the surgery the surgeon told us there was very little disease actually no cancer was found on the hysterectomy pathology. It was classed as stage 1A and no further treatment required. Of course I was feeling thoroughly blessed. Before the surgery the anaesthetist asked me about any problems etc and I'd told him I had sometimes woken up in the early hours of the morning feeling tight in the chest, I was a smoker and made a habit of clearing my throat type cough. I thought I had night time asthma.

The day after the surgery he visited me and told me what I thought was asthma was showing on the scans as mild emphysema. (Funny my GP and 2 other specialists had told me the scans were good...well I guess they were in regard to what they were looking for) He suggested if I stopped smoking hopefully I would maintain my current level of fitness and it would not progress. I never touched another cigarette. Someone who had wasted God knows how much money on patches over the years when they went on get fit binges, only to rip them off and have a fag, just stopped cold turkey. It wasn't very pleasant I had surgical menopause so my life suddenly included hot flushes and nicotine cravings.

A couple of weeks after the surgery I started walking in earnest. My life was pretty active anyway. For the first few months I noticed all the wonderful benefits of quitting, The cough went within days. I no longer woke up feeling tight in the chest. The occassional wheeze was gone. Although it was tough as first I felt stronger and fitter and extended the distance I covered.

Then I got a flu type bug. Starting with really bad sinus. I never get sinus without ending up with a chest infection. I noticed not long after this that doing chores that were run of the mill for me caused me to huff and puff (breathless) That turned me off walking for awhile. I have re commenced but I couldnt hold a conversation with anyone while im walking.

This is getting a bit long winded if your still with me thank you. My question is several fold. I have read where others have become worse after giving up smoking. Why is this and does it pass? I cant get my head around the fact that if this breathlessness is progression does it happen just like that ? I was not on any medication but went to a GP a few weeks ago as a new patient. He had his nurse do a spirometry test. I didnt get a print out but the numbers were I think 80% fev1? then he divided something by something and came up with 59%. I was given a nebuliser treatment with ventolin and re tested but there was only a 1% difference. I figure that ruled out asthma. I was given See Bri Breezhaler and an anti biotic.

Earlier this week I had an erratic heartbeat that I have had before but not ALL day long. I went to the dr. A cardiograph showed odd things involving the bottom chamber and left side of the heart. I have since had a chest x ray (no phone call so it must be ok) and blood tests and have an appointment with a cardiologist next week. I feel better knowing other possibilities of causes of breathlessness are being looked into. has anyone had a similar experience? Thanks for your patience.

Warm wishes to all

Suzann

10 Replies

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  • Hi Suzann, welcome. Not long winded I now have a good picture of all that is worrying you. Unfortunately I'm not much help my FEV1 is 32%. I was only diagnosed when I had gone a long way down the path. I thought my fatigue, weight loss. breathlessness was old age. Someone more knowledgeable will be on soon. You must keep as active as possible and a positive attitude. I'm the BOSS not the Emphysema. Take care xx

  • Hi Suzy thanks for your warmth and positive thoughts. I do hope your having a lovely weekend. xx

  • "Hello Suzann, I have just read your very interesting post, first let me welcome you to this amazing site which is full of so many awesome people who are so loving, and so wiling to listen and to advise where they can. I am one those people like your self very new to all this, and I too have been diagnosed 4 months back with stage 3 copd and living alone I was scared out of my tiny mind until I came across this wonderful site. I WAS!! a smoker until I was given my bad news and from that moment on I never put a cigarette near my mouth again. But!! did I suffer for it, for the first month, in fact I could hardly breath, talk, walk, lie down. it was awful. but in the last couple weeks I am feeling so much better for not giving in to the cigarette's , If you can keep remaining positive Suzann them I promise you the rewards are great. I want you to know that all these moments that your going through will eventually pass and you soon will start to breath in new air, new tastes and new smells. good luck to you and keep in touch with us all, let us know how your doing. have a lovely and safe weekend Suzann.... Megan"

  • Hi there Megan thank you for your reply. We have several things in common both quitting smoking from the moment we were given the copd diagnosis. I now cant stand the smell of them and wished I had had the good sense to stop a very long time ago. I also spend half of the year by myself as my husband works away. Week on week off. Where we do differ is that physically (cravings were another matter) I felt better from the first day I stopped. Everything for the first year was on the up. The cough was gone within days of stopping. And the more I walked each day the further I could go. I actually looked foward to it. (as did my beautiful dogs) Till I got a bug. I had some time off just doing the things I needed to do... which are many... but not putting myself through the rigorious exercise. And I think I allowed it to "bluff" me. Stupid thing is I can even remember telling someone that even bugs didnt have such an ill effect on me as when I was a smoker. All that positivity and effort and then bang the last couple of months Im breathless doing chores I do everyday. So I wondered if this is a common happening after giving up smoking. Does it let up or is this the way it is. How do you know if its a progression of the disease? Is that possible so quickly when you are for all intents and purposes doing the right things. Im so pleased you are feeling much improved. It can be scary when we are by ourselves and feeling vulnerable. Suz xx

  • Hello Suzann, welcome to the site, I'm so pleased you found us! I am sure you will find lots of useful information here I know how helpful it's been for lots of us. I think no smoking, good nutrition, and plenty of exercise is the way forward, you can improve your 'numbers' I have and you can too! I focus on feeling 'well' and do not think of myself as unwell and this helps me, keeping positive is most important! :) huff x

  • Hi Huff!! Thank you for your kind reply. Sorry Im being a misery guts and a whiner today. I think Im just confused and very disappointed because I to thought (and was led to believe) that the common sense approach of not smoking (and I never will again) exercise and a positive attitude would reap rewards and they did for months and then for seemingly no reason all of a sudden I feel like I have gone downhill. I guess I was just looking to see if anyone else had had a similar experience. Suz xx

  • Hi Suz, I think we have every reason to kick against the cards that life has dealt us! of course we all have bad days and good days and yes I go up and down with this rotton stupid lung dis-ease!! as you do!! I've been severe, moderate then severe and moderate again! at the moment I don't know how I am, I'm coughing up blood again though I don't cough a great deal..but do I give a monkeys? :) I think all disease is caused by dis-ease, the total opposite of stress-less! so, I try to take a relaxed approach to whatever happens, I am trying to learn to meditate but my mind wanders off!......ommmmmmm :D

    I know Suz that many people who are chronically ill like us fall into a malaise, the blues, depression, anxiety....but like I said I think that makes you feel physically worse...... we don't need that.so what's the answer except to try and stay positive and relaxed about life!

    You could get anti depressants from the doc's or herbal remedies maybe.

    I asked my GP if my emph' could be genetic as it is progressing nicely, and she said 'don't be silly you'd be dead already!' and then nine years later I am told it is genetic they never thought to test for it! and then I learn there is no treatment in this country because of the cost!...EEEEK.sorry I went on a bit then, Suz, but I hope we all can find at least 2 positive thoughts for every 1 negative and that you will focus on being well and very happy every day, it's why we were born, it is our birth right and as Mother Teresa said 'Peace begins with a smile.' so look for peace 'within', and lets go up hill again! :) A peaceful, and happy Sunday to you, it's one day at a time :) huff x

  • Ooops Suz I forgot to say , lots of us felt worse than before the smoking but eventually that passes and you will feel less breathless, also check with doctor about trying different inhaler, and my hubs is week on week off as well! :) huff x

  • Hi Suz and welcome from me as well, thanks Huff for this interesting post you are the first post I've read who has mentioned coughing up blood as this is what I did was told it was pneumonia given antibiotics and sent home after xray ct scan and two nights in hospital no mention was made of COPD until weeks later when I kept going back

    To GP eventually getting tested

    And yes Suz I too have felt worse since stopping smoking been seven months now and like you stopped when in hospital

    You will get lots of good advice here I know I have so much I cannot answer every post I read

    Good luck sending hugs

  • Quitting smoking improves the blood supply to every part of the body, eg smoking can mask or delay the symptoms of ulcerative colitis. Whatever happens please don't give up on giving up - it'll be the best thing you ever did for your condition.

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