Not a full time carer yet for hubby as he works from home, but he had a bad bout of pneumonia and with COPD that is not good (last February).
I posted earlier this week, when I was at a loss about what is "normal" in COPD. thank you guys for all the responses, it was helpful. Went to see his COPD nurse today, and she says his exascerbations because they are more regular mean that his health is getting worse. That has been a huge blow for both of us. I really hoped that the giving up smoking would help matters, but it has not. Now she is saying he must do 4 x 10 with the Blue inhaler with the spacer during the day. (ventolin type) its like a nebuliser she says. She is also talking about him going on daily steroids. The doc will ring tomorrow to talk this through with him\us.
This apparently will keep him more well.
Am feelings very low and blue about all this and wondering about life expectancy, what is in the future? Is there one? How long do we have? Feeling very doomy right now. Have to up my anti-depressants again, in order to cope. Dammit. Any responses - gratefully received. I know that all COPD patients are different and that one persons experience is not the same as anothers...
However, he is down for Pulmonary Rehab, and will be going for X ray tomorrow.
Steph
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Hi, you sound like me, a few years ago, when I was first diagnosed. It's all gloom and doom isn't it? Does your husband see a consultant? I know theCOPD nurse said.... - but I had loads of exacerbations just after diagnosis, missed great chunks of work, thought I was going to die - and very quickly. Well, I didn't. I am still here, and I have a decent quality of life. I found the blue inhaler (mainly for asthmatics) made me feel a lot worse and did not really help my breathing. Once my meds were sorted to what suited me the flare ups became less. As I got more used to my condition, read and understood more, I found I could manage it quite well. I have just had a spell in hospital (3 weeks) but that is the first time in three years. And I am up and about again now, feeling not too bad. So what am I saying? That it is not all bad. That as you said, we are all different and progress at different rates. That a bad patch does not necessarily mean the end. If we lose hope we die. Don't give in, or he will. We can and do bounce back sometimes. Keep your chin up, accept that there will be limitations but continue to look forward. And Pulmonary Rehab is often a great help in feeling better and doing more. Good luck to you both.
Thanks auntymary. Yes he has been diagnosed for some years. Yes he has seen a consultant who says "just get on with life" not due to see them again until November. Has anyone else been prescribed daily steroids? How is it? Any problems? Don't want to take them on if they are worse than the alternative. We are both struggling to keep positive today, and don't want to be railroaded into doing anything that we don't want.
Let me tell you about about my dad. He has Emphysema and Pulmonary Fibrosis. Was diagnosed 4 years ago and until before Christmas you would think there was nothing wrong. He was getting short of breath, found it difficult to walk far etc etc. Fast forward to May. His consultant said patients with PF usually only last 2 years from diagnosis and with a wave of his hand suggested he would arrange pallative care. Needless to say there were tears shed and we were all devastated. Next day, dad started rehab. It was amazing. He felt so much better and they did so much for him.
With the help of his GP we found a specialist in his conditions and booked an appointment. What a turn around. Between all the care from the medical professionals my dad is well looked after and for a while was managing his conditions and not letting them manage him. He went on holiday and did things he never thought he would ever do again, like walking, paddled in the sea and swam a little. It was a lovely time we will always treasure. All the while dad was on steroids and they made a real difference to him. He had none of the side effects we had read about or others had experienced. He had a new lease of life.
Unfortunately last month he had a hospital admission and nearly died but he didn't, he came through it. I believe it was his sheer determination and positivity that pulled him through along with his family support. He has made many adjustments in his life but remains so positive it amazes me. I love dad so much he truly is an inspiration. He knows now and accepts his limitations and lives accordingly. He is realistic and so are we and we live for each day, making the most of it.
So what I am saying hun is, never give up, be as positive as you can even though it is hard, because he will need you more than ever now and he will need you to be there for him no matter what. I cry. My mum cries. We don't let him see though, he doesn't need that. He sees us laughing and smiling and having fun together. It is the little things that count and make all the difference. He could have given up in May but didn't. We didn't. Its team work. Work together with your husband and get support wherever you can get it for both of you.
Take care xx
I don't take steroids as they make me very depressed but I know others who take them either with each lot of antibios or on a daily basis. Others take a small daily does of antibiotics. I think the worst worry with daily steroids is the effect on bones (osteoporosis) but you have to weigh up pros and cons; thinner bones has to be better than not breathing! Talk to his consultant. Make a list of your worries, concerns and questions and take it along with you in November, he is the one who can help most. Read all you can find - become an expert in the condition, then you can play a part in deciding what treatments are best from your own knowledge. The BLF are exceptionally good at helping/advising so don't hesitate to ring them on the helpline. Again, I wish you luck.
You do get good times as well feel well in yourself ,feel fit life is worth living. Drawbacks are when you are ill but you get over it takes time though Val
Hi,just read your post,and although to-day is a rough ,tough day for you both,you will get through it. i was diagnoised with copd earlier this year (moderate),whch was a huge blow to me, as i have suffered with severe asthma since 17 (now 51). I like you thought i could take no more,and was frightened,I am on daily steriods 40mg,but for my asthma not copd,they frankly have kept me alive,and too see my first born married a forthnight ago ,i wouldn.t lie to you there is a down side too these drugs,weight gain,brittle bones,mood swings,although in my case not so much of that,nowadays the doctoers treat steroids with the repect they deserve and are very careful with them,so have a good chat to-morrow and weigh it all up,i know only too well how down hearted you can become,but there is always another way,the trick is to keep trying to find it x
please excuse the spelling mistakes typing too fast lol x
I feel for you both, try and draw a line under today and let it go, tomorrow is a new day and after reading the replies on here you might start to feel a little better. As a carer the best thing to do is to try and look after yourself. I know it is easy to say but that's what you have to do. Please keep us informed and take care. x
Hi Steph, so sorry to hear this news/
Look forward to the pulmonary rehabilitation, this course can make a big difference to how things can improve in the future, I hope he doesn't have to wait too long for this, sooner the better probably. The main thing at the moment is the docs and nurses are trying to get your husband stable again, so the increase in meds may not all need to be continued once stability is achieved.
pneumonia is common with copd and we have to be aware to deal with infections rapidly to offset this. I have had pneumonia two years running and with infections and low sats have had to suffer quite a bit of illness this last summer. All dealt with now and I now feel fitter than for a long time. We really do go through some rough times but the good days feel really so much better when we get there again. Never give up hope. Providing we get the medication we need, some exercise, and stay positive even in adversity we will come through. Many of us with copd have a steroid a day and others an antibiotic a day. All to control our condition. Stay strong and I am sure that given a little time your husband will bounce back again. My blog is at bitz-and-bobz.co.uk/copd
HI, it is so difficult being a carer! And so frightening! My husband has a dreadful time a couple of years ago and I never imagined that we would be able to get through it or over it or that he could be as active as he is. The pulmonary rehab course for him was a life saver - it taught him about his illness, and taught him how to deal with it and the importance of excercise. Which was in turn a life saver for me - he has taken control rather than waiting for me to take control. We were just left with the diagnosis and to be honest he still does not have a specialist !! but we do have the support of the specialist respiratory team. We did get a blue badge (a godsend!) and he has been put on the right medication. If the steroids help thats great - my husband was on them for a long time but he is not now. I would not necessarily agree with the nurse - sometimes it is worse than other times! Just another thing has he had a pneumonia vaccination and will he be getting the flu vacc? Try to contact the local breath easy group - that helped my husband, he realised he wasn't the only person in the world struggling with COPD. Good luck and try to be positive, TAD xxx
Ok this morning we had a chat with the doctor. He was not keen to put him on steroids, we will be trying daily antibiotics first and hope that that does the job. It is such a relief to hear this, I didn't want to go the steroid route immediately neither did he. Getting the meds this afternoon so hopefully things will pick up now. We both will be having the flu vaccination and he will get the pneu vaccination too I hope. Still feeling very anxious, and have everything crossed that this is the start of some steady weeks\months of life. Hope the pulmonary rehab does everything that everyone says it will. Hubby doesn't have trouble talking, he goes sailing when the weather is good enough (dinghy) and rides a bike. Just at the moment he is under the weather having just finished his most recent course of anti's and steroids. One day at a time eh? We can do this..
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,i wouldn.t lie to you there is a down side too these drugs,weight gain,brittle bones,mood swings,although in my case not so much of that,nowadays the doctoers treat steroids with the repect they deserve and are very careful with them,so have a good chat to-morrow and weigh it all up,i know only too well how down hearted you can become,but there is always another way,the trick is to keep trying to find it x
Copd mental changes
My friend is upset. Please help.
