In need of some support!!

Good Morning everyone!! Wow a supportive group, I also was diagnose with COPD, Doctor not sure if I have emphysema. Have an appt with a specialist on Jan 18. Where I will find out if I also have emphysema. This Google search is driving me to a point that I just want to give up. I get really really bad anxiety and panic attack. One thing I with COPD. I might cough maybe once or twice a day. I go up and down the steps plenty of times and just a little out of breath but I think that is normal for someone going up and down the stairs. I do laundry, clean, etc. But I have loss lot of weight in the pass 9 month since my Mom passed away is where my lost of weight started. From 156 I am down to 117 pounds. People keep telling me that my oxygen level is gonna go down. And my organs will shut down. Is that true I am very scared. I do google a lot and it's is very scary. I do Drink a lot of water and eat but not much. I don't want to go any wheres cause I feel ugly and skinny and feel like people are starring at me . Wanted to share this to all. To get some support Obviously I don't have that support with my family which is very sad.

37 Replies

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  • Hi Anita nice to meet you and welcome to the site. Emphysema comes under the umbrella of copd which also includes Chronic Bronchitis, so you don't have Emphysema and COPD. You sound quite fit at if you can manage stairs etc. without too much SOB (shortness of breath).

    Whilst COPD is a progressive disease it rarely progresses very quickly and with not smoking, having a healthy diet and exercise you have a very good chance of holding it steady or only progressing a bit for many years yet.

    I am 61 and was diagnosed with mild copd (lung function 78%) and it has not changed since diagnosis 5 years ago. When you have your consultation find out what your lung function is (FEV1) and FVC (forced vital capacity). I should think you would be mild. I was told by my doctor that something else would get me first ie old age, so unless you want to live to 120 try not to worry too much.

    Dr Google will tell you lots of depressing things so try and stick only to recognised sites such as this one and the NHS etc. Whilst copd is a chronic condition with care you will learn to manage it and live a full and happy life. x

  • Hi CAL

    Good reply, you have said it all.

    Velvet xx

  • Well put and so true. Reading the general site can be upsetting stick to sites that deal with the problem or NHS. I would say Anita you just need a little more confidence which does not come in tablet form.

    Be Well

  • Coughalot2 has said it all.

    Your appointment to check emphysema, is that a CT scan?

    Even if you don't eat a lot, it is important to eat loads of fruit and vegetables. Your body needs lots more vitamins and nutrients than before.

    Whatever you do STOP googling, there is a lot of nonsense on there. If you have a question ask on here, there are some very knowledgeable people on here, some who have been living with this sickness for years.

    Do you smoke? If so STOP.

    Merv

  • Hi anita I used to google until I found this site.coughalot as said it all I have copd asthma .I used to worry what how fast my health would go down hill . But drink plenty eat well stay active . Dont google dave

  • I did stop smoking Immediately when I found out I had COPD. I do drink smoothies and a lil of Vegetable not a big fan, Yes Coughalot2. I stop Googling cause It was driving me crazy!!!

  • Hi Anita, coughalot and swerv have given you good advice.

    My elderly mother died in August so I can guess the feelings of loss you have ....you have my sympathy. But you need to look after yourself too.

    I know Swerv makes a lot of fruit and vegetable smoothies and they have helped him a lot....could you try them as well as nourishing soups.

    When I was first diagnosed after a bout of pneumonia I lost 21pounds ...I could see the look of shock on people's faces when they met me...but now I have managed to regain weight,

    Good luck with your appointment in January, then you will hopefully know what you are dealing with.....and be able to move forwards with help.

    The BLF has some good advice .

    Take care and there is always someone here to ' talk to'

  • Thanks So much Knitter. I do make smoothies they are great. I think I just worrying to much and I'm getting paranoid and anxious. Which causes me anxiety and depression. Thanks so much I need all the support I can get.

  • Hi Anita, welcome to the site. I lost my mum shortly before Christmas so understand how you may be feeling, you must take care of yourself, I know easier said than done. All the advice given is good you just need to work out which is best for you personally. I have COPD and it was diagnosed six years ago and as been fairly stable till this year which I put down to the stress of losing my mum. Good luck with your appointment in two weeks, that should sort out what is best for you medically, in the mean time you can come and chat to us or contact the BLF helpline nurse. Take care

  • Thanks Katieoxo60 Losing my best friend which was my mom, Really Kick my butt! Yes you are right I gotta do me Thanks so much!!

  • 1. Do not ever google medical info after the sun goes down. Give yourself a rest from the scary stuff on google.

    Eat plenty of fruit and veggies.

    Get sunshine every day.

    Exercise every day.

    Go out the house once a day.

    Look after your mental health.

  • In a nutshell Happy :) x

  • Thanks Happy26 Losing my best friend which was my mom, Really Kick my butt! Yes you are right I gotta do me Thanks so much!!

  • Yes Happy26 I did stop the google research it was driving insane. I do lots of smooties not a big fan of Veggies :(. One think I notice my shoulders are always stiff Ugh!!

  • Good Morning & welcome to the community. I hope your feeling reassured by the advise. I would suggest reading the NICE guidliness they tell you what to expect from your consultation & help you to get a long st if questions. The Help line on this site is also good. Keep in touch all theembers are supportive & helpful it's like a family here Best wishes Nan

  • I like this nan, we were given a copy at Pulmonary Rehab.

  • Tanks Nanaeal, Ii need all the support I can get. From being very active to not want to do anything is very frustrating.

  • That's perfectly normal, juar try small goals each day. Gradually you will gain confidence, Breath easy groups, pulmonary rehab, a healthy duet breathing exercises ( I used the one s on U tube & gentle simple exercise again u tube helped untill I got on breath easy & P R. Best wishes Nan

  • Good reply from cough and a great explanation of what copd is.

    You will get lots of support on this site anita so try not to Google as that can be scary.

    Wishing you well. Xxx

  • Thanks Sassy59 It's what I need!

  • Hi Anita, I can see that you have already been given some excellent info from coughalot and others on this site, just let me try to reassure you, I was diagnosed with COPD a year ago and thought that's it my life was over, but Ohh no the team at my local hospital were brilliant and a lot of support from my doctor, once my care programme was put into practice and a lot of info given to me, I am going along quite nicely as long as I take my medication, so don't worry there is life with COPD.

    I know the others have said this but I feel I have to reiterate it, please, please do not Google

    Good luck with your appointmentđź‘Ť

    Txx

  • Thanks btown. I wouldn't not research again It was driving me crazy. Then people staring talking about if my oxygen level goes down my who inside will shut down :(,,,, Now that was scary!!

  • Thanks 1008 :)

  • Hi Anita,

    Welcome to the site, Cough and co. have given you excellent advice, keep in touch with us. Sorry to hear about your mum, take each day as it comes and be kind to yourself don't forget to rest regularly when you feel short of breath.

    Sue

  • Thanks Bayleyray I get plenty of rest,Some days I have good one some days are tough. But My breathing is not that bad at all. I just get all work up and I give myself and anxiety. And it feels like I can't

    breath. :)

  • Really good replies take heart - .maybe you might try just to keep doing all you are doing which is impressive. Your weight loss would it be due to a bit of worry that you are going to become more unwell in the future? Perhaps you would like to try and wait till consultant gives you the full diagnosis. Then make a plan.

    Eating well is important for all but for those of us with significant lung problems eating well is essential.

    Good weight is what gives you bounce but like everything if there is too much weight then you don't bounce just roll and that is not so good! So make sure what you eat is good food

    Exercise is key so I must now go for a walk as the rain had stopped ye ha!

    Be gentle with your self and try not to over worry as that won't make things better just more difficult to endure.

    It is ok to be sad at times just try and be happy at other times. Laugh when you can gives the lungs the best exercise .watch a really funny Dvd when you can.

    Take care.

  • A cough couple times a day and a little sob on stairs doen't sound like COPD.

    And unless you've had a CT scan they won't know if you've got emphysema.

    Weight loss in COPD is generally caused by the amount of calories used in working to breath - so if you're having little trouble breathing it won't be the reason for your weight loss.

    What tests did the Dr do to come to the idea that you have COPD?

    Have you had an Xray?

    Do you smoke heavily?

  • Hi soulsave , It was just an xray and Said I have COPD and Might have emphysema but she wasn't sure. So that's why I made an appt with a pulmonary lung Dr .Which is on Jan 18,, No I don't smoke stop like 19 yrs ago!

  • Hi Anita & welcome. I have had copd diagnosis for about 12 years now. Sometimes I have been very unwell at other times like now, I can do most things. The advice on here is good, I walk every day when I can. Once you have a confirmed.diagnosis from specialist , ask about pulmonary rehabilitation. This is great education about the condition & exercise. Try not to worry, it adds to the stress. I should just add mum had this (never smoker) and lived until 92. I lost her in 2014 . Be kind to yourself. love Margaret x

  • Scopiolass Believe me I am trying very hard. But I am determent to fight this.

  • Hi Anita.

    That's a bunch of sound advice, the only thing I can add is that I found the use of an oxygen meter to check my self if I found myself breathing heavy,by the way that's the gagett the medics put on your finger to give your oxygen count,if low rest and breath deeply,my medics tell me 88 or higher is OK for me but you must take advice. If you want to buy a meter look on Amazon oxygen meters they are

    quite cheep god luck .

  • Hi Anita,

    You've had lots of good advice from people here.

    I only joined this group a few weeks ago and reading the posts on COPD have taught me so so much, where I was very down about my symptoms before I can now see a bit of light at the end of the tunnel.

    Don't be too concerned about losing weight. I lost a lot of weight when my father died - 2 dress sizes - it was emotional stress and took me a long while to put the weight back on.

    Good luck with your test later in the month, you'll be fine.

    Love Thea.

  • Thanks Thea!!!! Love all the support in here Cause I don't get that with y family it so sad. And I'm always there when they need me. :(

  • Take it a day at a time. There is a lot of rubbish around concerning this issue. Give it time until you know just what your situation is re: COPD. Skinny ? I am skinny, or should I say I do not carry much in the way of extra fat. On average, we last longer than anyone else and we last in better condition. As far as appearance is concerned I suppose that it is all a matter of proportion, but most people are trying to look thinner these days. My BMI is spot on, and I feel just fine. I have had the same measurements for the past 45 years and I am generally considered to have a good appetite, perhaps even a bit on the greedy side.

    I just aint no "Arnie"

    There could be any number of reasons for your weight loss. By the sound of your activities with no real breathing problems, perhaps your condition is not quite as severe as you might think.

    Like I say, take it a day at a time until you have all the facts and "then" decide how ill you are, not before.

    I would also advise against trawling the Internet for info, even if we all do it !

    This site and BLF are the ones to take notice of. And even in those camps you will find differing opinions.

    Good luck !

  • Thanks Fred. Will Do :)

  • Thanks so much!!

  • Well it sounds to me like your not sure if you have emphysema and what stage for panic attacks ask your doctor about it I have mild emphysema on oxygen at night and nebulizer twice a day stopped smoking about four months and am feeling a lot better so wait until you get all your information and then talk with you lung Doctor it isn't a death sentence

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