Emphysema

[Nanapenny]

Hi, I'm 53 and 6 wks ago was diagnosed with mild emphysema. In 2004 almost died from severe pneumonia since then I've had it 5 more times and pleurisy twice. I've known for a long time something wasn't right because I'd always been active until Feb this year again after a bout of pneumonia, finally referred for spirometer test and got diagnosis. Like many of you I've been looking on the net and got the 2-5 years prognosis because I've not been given much information about it. Although I intend to see my own gp this week as the last couple of days I have struggled breathing even when in bed, in fact I've had to get up agin because I can't stand the heavy feeling in my chest. I worked as a community carer, and I know my job isn't helping matters but I can't see anybody giving me a job now. Not only that but I'm having my gallbladder out in the next few weeks. So quite down at the moment. I think my husband is just glad I've gave up the smokes as he's not talked to me about the condition, when I tell him I'm having difficulty breathing he asks 'why?' Actually I feel quite alone.

[hopetorun]

I can fully understand where you are coming from. Partners take a long time to adjust too. Its as if they think you have a choice about having breathing problems. It can be a bit of a roller coaster with feelings. Physical activiety is good. Keep up your determination to do things. Try and build up strenght

Most of all do not think about life expectacy that is rubbish just work on diet and exercise and you will be supprised at the results. Best wishes to you and hope you feel better soon.

[Nanapenny in reply to hopetorun]

Hi hopetorun, I had to tell him this morning to read up on it, he hasn't got a clue. I think I'll have to take him with me when I see the Gp.

I certainly don't intent to give up. Thank you x

[sassy59]

Hello Nanapenny, you are no longer alone as you are now a member of this wonderful forum.

Don’t be afraid, you can and will live a full life, with care, and just speak with your doctor to get information and medication.

Take care xxxxx

[Nanapenny in reply to sassy59]

Thank you sassy59, I think I'm just feeling a bit low with all that's happening (gallbladder), oh and I'm having 2 teeth out tomorrow and I suffer with depression as well. Think I'm keeping nhs afloat at the moment. Lol x

[2greys]

First congratulations on quitting smoking, the best and hardest thing you could have done to slow down the progression. Feeling alone, apparently, is not unusual. I was diagnosed 18 months ago and still feel alone, except here with this forum.

Like @ hopetorun says "do not think about life expectacy" nor believe what you find with Dr Google, there are many here that are living proof that the 3 - 5 years prognosis is absolute rubbish. A healthy lifestyle and loads of exercise coupled with religiously taking your meds will ease your symptoms but give it time do not rush into giving up work.

I have severe emphysema and yet still work full-time, on my feet all day, so it is possible.

[Nanapenny in reply to 2greys]

Thanks 2greys, I'd been smoking since age 11 and tried many times to give up without success, but when this came along with the help of vaping I managed it.

I must admit after reading the dr google it frightened me, but after reading all the comments on this forum, I feel a little more at ease.

At the hospital, it was literally, 'oh yes, you have mild emphysema. We don't need to see you again, any problems see your own gp'.

No information at all.

I don't intend to pack in work, as I enjoy my job. But I do worry that they will try to get rid of me, because they have to adjust my client list to accommodate me. X

[2greys]

Loads of us have had the same issue with lack of information on diagnosis, given a blue inhaler and just discharged. I have said before, just a single sheet of paper with the web addresses of approved sites seems too much to ask.

My partner is a carer in a nursing home, so I know how much you are attached to your job. There is an acute shortage of professional carers, so maybe they will accommodate you without to much trouble. Good luck.

[Alisoll]

I think I understand how you are feeling life is hard and when I look at my sister is wish I had a magic wand . She had eumonia 7 times this year and sepsis twice also stage 3 kidneydisease and arthritis. She has astma since she was 3 years old and also lives with mental health and has to take medication for ever . She needs a operation for gaulbladder removed but is never well enough x she is the nicest person you could ever meet and I just wish I could take all her pain away

[Offcut]

Good advice already. I can only add that if you look at the life expectancy it will worry you to death. Things change all the time and most are very out of date as soon as they are printed. The Wife has been told a number of times now "I will not see the night out!" I am still here and do not plan on going anywhere but on a holiday or fishing?

Tell your man to put a straw in his mouth and only breath through that for a time and suggest that is how it feels? Some ambulance peeps do this to understand poor breathers.

Be well