Son of COPD patient.

Hi Tessa.

Yeah, mum gets effected by humid, cold and windy weather. She also gets bad sinus's from hayfever which can cause an infection for her too. Do you have a chest infection? I hope it isn't too bad. Luckily my dad takes really good care of mum, so (touch wood) she isn't too bad.

She text me last night asking about my weekend and saying that she was ok, so that sorted my worry out! I always feel really panicky when mum is low, after February I just freak out when I think she is ill - it's a really horrible feeling sometimes. I can't imagine what it's like for her, or you too Tessa I am sure it must worry you.

I hope you are well, and hope the infection goes without any problems...

Robbie.

Hi Robbie,

I'm so pleased to hear your Mum is ok. After that February it is easy to get really worried. But your Dad is doing a fantastic job. How is he by the way, he hasn't been on site for a little while. Last time I think he said he was really busy.

Yes I have a chest infection, but think I got the antibiotics down in time. Spent most of the day resting, translated, that means playing computer games with my Granddaughter. But not moving round doesn't do us any good, so every now and then I would get up and do a job that had to be done. I am very limited in the housework I can do now. But I can still wipe worktops over and do a bit of washing up.

Thanks for your good wishes Robbie.

Tessa

Hey Tessa.

Dad has been really busy recently. My sister is getting married, so he has been running my mum about meeting the in-laws etc.

They drove across Ireland the other day to 'meet the parents' then to see the church where the wedding is taking place. My mum had a blast which is fantastic as she really hopes not only to see the wedding, but take part in the whole celebration too. Hopefully, hopefully, she'll get some new parts before then!

I understand what you say about the housework... I can never know exactly what you go through but i see it with mum. I remember when she first started becoming effected by COPD and started to find it harder to do the housework - say hoovering for example - she used to struggle like mad to get it done and it was horrible to see. So during the summer holidays when she was at work I used to do the housework for her. I suppose it worked well both ways - discipline for me and an easier life for her.

Mum used to work in a playgroup, then a cross community play project for the older kids and was always really active. She used to join in the fun and games with us - often being picked first for football since she was a good goalie - and really enjoyed swimming. Through time she has found that this has been taken away from her, but it doesn't seem to get her down very often - she is very strong willed.

Whenever mum and dad went on holiday she just used to swim and sunbathe... I guess she misses that a lot.

Anyway, after all that, she now struggles to wash herself which I am sure is so bloody frustrating. I hope you can continue to do bits and bobs around the house Tessa, it must be hard realising that somethings are getting a bit harder.

Hope you are well.

Robbie.

This is from another post I made... I thought it might be useful on this one too...

COPD is a disease that the sufferer can live with for a period of time and lead a fairly normal life, but as it is a progressive illness it starts to take its toll on the sufferer after flair ups and infections the condition gets worse and worse. Unfortunately the more infections that occur the weaker the person gets, leaving the open to more infections etc - it's a vicious circle, that is never ending. Through time the sufferers lungs get badly damaged, and loose elastisty so struggle to get enough oxygen into the blood to make everything work. The body compensates for this by increasing the heart rate quite dramatically, but might not be strong enough to actually get the blood completely around the body so heart failure is also a worry to the sufferer at this stage.

This is the stage that a constant supply of oxygen is needed to allow the heart to pump good oxygenated blood around the body to allow it to work efficently. It isn't the cure, as remember the lungs are loosing elastisity, but it does help so shouldn't be avoided at all. Some people, like my mum, find it very hard to get their head around relying on O2. The sufferer will now pick up infections and the like, but struggle to get rid of them and will not recover in time when the next may come along, damaging the lungs further and making the heart work harder. This basically leaves the person bed ridden for long periods of time without really getting over any illness that comes along. All the nasty things that come along with COPD can occur now too - muscle loss, depression, heart failure, hospitalization etc etc etc (it's a long list!). The doctors will give medication to help mentally, and to manage the condition in ways that they can but there is only so much they can do in the end. That is what, unfortunately, is the end stage of COPD.

I am not a doctor by any means, and everything I've put up is what I have picked up from talking to people - my mum, my dad and doctors - and what I have read myself - mostly on the internet... I know it's not very nice reading, but knowledge has helped my mum maintiain a life that she probably couldn't have, so I would suggest to anyone reading this to get online and search for info on the illness that effects them, or their loved ones as it WILL help.

I hope you are well Tracie, and I hope your mum has came out of hospital and is not too bad. I understand what you're going through, so please let us know how you are.

Robbie

Hi Robbie,

Thank you for that most as it answered a lot of questions. As you say, knowledge about this condition is the key to managing things and having a better quality of life.

I have found the most useful but the hardest thing to do is pacing. There are many things I cannot do now, but when I have days that I can do a few things, I found I manage if I do them slowly and take rests in between.

My husband has booked a day off work next week so we can go for a meal of fish and chips. I hate that because it causes stress, as I worry in case I am not well enough when the day comes.

Oh for the days when I could just put on my coat and off I would go. We don't appreciate the simple things until we can no longer do them.

Hope you are keeping well Robbie.

Tessa

Hi Robbie

Hi, I was recently (this week) diagnosed as having COPD and am already in what seems to be the latter stage, needing to use oxygen constantly at home. I am a wife, mum and grandma and was working full-time. Suddenly I am an invalid and it is so scary. I had very little knowledge of what was happening so turned to the web and found this site, and then your comments. I just wanted to thank you so much, your comments are helpful, informative, insightful and humorous - no mean feat!! I really enjoyed reading them as they helped me to gain information in such a human way and I also found your care and love for your mother very uplifting. I hope she is keeping well and that her transplant is still a possibility.

I was very interetsed in your experiences with your Mum Robbie and although COPD sufferer myself have only had two major exacerbations in 5 years and until March 2008 was working full time in a sedentary job, but made redundant just before 65th birthday retirement. Until recently I was pretty active using 4LPM oxygen for ambulatory/exercise purposes which allowed me \"shop till I drop\" and go for walks but not to play as much with my 18 month granddaughter as I would like to have done, as my parents had done with my children at the same age. I was at one point referred as a possible transplant patient although only one lung would be available to me but after a year it has been decided not to go ahead at this moment - age and condition of lungs if memory serves me correctly.

I use the usual inhalers of Tiotropium and Symbicort and Ventolin if required and I attend a rehab programme once a week if at all possible although most of my exercise comes from walking. 2 weeks ago I had my second nasty exacerbation when I was literally gasping for breath and despite being close to a tank of 02 found it hard to get close enough to turn it on!! Terrifying feeling. I was in for about 9 days on antibiotics and steroids and a peculiar machine called a BIPAP???? - bit like being girl in the iron mask. Luckily I had been to various groups and classes at the Hospital and got to know the COPD nurses, physios and doctors all of whom came to visit and give me support to pull me round. Now that I am home again I am taking 02 at a rate of 2LPM for 16 hours per day - unless I go out in whic case I use the 4LPM, but am worried this is going to be a long term solution. I am hoping that once the steroids have finished and the chest infection has cleared I am might get back to some semblance of normality - if there is such a thing with this dreadful disease.

What I wanted to ask of you and any others with more knowledge/experience than myself, is does one's diet help to influence at all?? 2 years ago I was fortunate enough to be given a consult with a practising nutritionist and it was suggested that non-dairy products would useful but have not been able to follow this up at all.

I trust your Mum is still progressing well and interfering in your new home as only us Mum's are allowed to do!!!

Hi Robbie/Tessa and everyone. I don't know if I have managed to join the group yet but here's a very little about myself. I am a young 65 and was diagnised withc.o.p.d some 13 years ago. I also have bronchiestasis and diabetes along with a few other things... i think I have reached the beginning of the end so to speak . Been in hospital with acuteexcerbations twice this year, on every medication available including nebulisers and high dose steroids, none of which seem to have much effect. Its a struggle getting by now - exhausted alot of the time and even the smallest of tasks takes forever but I'm a positive old soul and I will not give up the fight until it gives me up. Live on my own in a bungalow (thank God) with 2 cats and a dog. Got 3 grown up children and 7 g.children but I'm very independent and try not to be a nuisance although they do take Poppy out for me. Can barely walk anymore as my leg muscles have gone. Thankfully I have a scooter which means I can stilll get out for a bit. Anyway,this probably won't reach you but if it does I'd love to hear from you. Carole.

[color=blue:ab8a56c74b]Sorry but Patient Admin have removed an email address from this posting, as it is the policy of Patient UK not to publish these on this forum.

[/color:ab8a56c74b]

Hi Carole,

Glad you made it on to the discussion group and for posting your story.

I haven't been around for a few days as I've been laid up with an infection. So checking on things now.

You have a good positive attitude Carole. I should think looking after your pets exhausts you.

My husband has three ferrets and a bird which he keeps in the shed. Now his shed is better than the house. It is carpeted and warm has his all his electrical equipment in there so of an evening that's where he is to be found in front of the tv in his comfy chair. I think it is his refuge from a housefull of women. In the house there is a cat and 2 guinea pigs, although I have a problem with them, they irritate my lungs.

Hi Rita,

Good to hear your story.

I haven't heard from Robbie for awhile, but his Dad says he is doing well.

Robbies Dad, Gil, also hasn't been on here for awhile because he is busy trying to keep his wife well enough for the transplant when the call comes.

Yes, there is the theory that dairy foods are not good. I personally find no difference if I leave them out of my diet But other people have said it helps them. You could give it a try and see how you go.

Will talk again. Take care.

Tessa

Thanks for replying Tessa - I'm so glad to be on the site. Yes, I do try to keep positive ,lifeis for living even though it can be tough at times. As I have diabetes and high cholesterol I am watchful of what I eat (but not too much). If I did everything by the book then there would be very little left. I believe in what will be ,will be, the end will come to us all sooner orlater. I'd rather go enjoying some of the bad things than deny myself most pleasures and live maybe a few weeks/months longer. Having had c.o.p.d. for a long time now I know quite a bit about it and will happily share any knowledge/experience that may be of use. I gather that you too have c.o.p.d. and bronchiestasis- how are you feeling now. How far down the line etc.,etc., YOu said you have'nt been well lately. Fortunately I am not a 'worrier' how do you cope? Bye for now. Carole (Caz)

Hi Caz,

Just got back from having a chest x ray. Had to wait an hour to be seen. It isn't usually that crowded.

I think being as positive as you possibly can be is really important.

I haven't been that good for the past couple of weeks. Maybe have another infection brewing. Well have had the x ray and sent a sputum sample to pathology yesterday so that should tell me if there is something going on. It may just be this chilly weather.

I have had copd for 13 years but only had the bronchiectasis diagnosed nearly 4 years ago.

Caz, if you keep your eye on the daily postings, you will find people who you can be of great help and support.

I'm off to make a cup of tea and try to warm up.

Take care

Tessa

Hi All

Does anyone out there have any advice about taking holidays and obtaining oxygen abroad???

Jacee

Hi Robbie your letter hit a note .

I see your mail was posted a year ago or so

How are things now ?

Regards

Hi Robbie! I am a Daughter of a COPD patient which is my mother.... I have enjoyed reading your posts because it feels like we aren't alone in this situation... My mother was diagnosed a few years ago with COPD. We have been to PA for clinical treatment/ stem cell therapy and have tried to make my Mom feel more comfortable. My mom has difficulty sleeping at night, she can't get comfortable, she has major anxiety, and I was just wondering if your mom has the same? It hurts me deeply to see her in this shape becasuse she was always the woman who never sat down to watch a tv show, and now she says she feels like she is in a jail cell. If you have any advice it would be appreciated!