sarcoidosis and Copd-My Mum is terribly Ill

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gayleybo Posted: 07-11-2009 3:36 PM

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Hey There Guys,

My name is Gayle and I would love to pick all your Brains, as i figured Theres Proffessional Boffins on this site and Boffins whos knowledge has been gifted through years of suffering.  Im desperately worried about my precious Mother.  Around 12 years ago she was diagnosed with chronic Scarcoidosis.  Over these past 12 years she has been able to manage her illness resonably well.  This year however her health has deteriorated with extreme haste and fury.  My mum cant walk-as she simply cannot bear the pressure walking has on her  lungs.  She is confined to a wheelchair because of this.  This has just started since the turn of the year and im unsure if its COPD or sarcoidosis which is causing such an extreme deterioration in her health.

Two years ago my mum accidently choked on a garden pea which got lodged in her lung.  Her Doctor provided her with anti fungal tablets for a week-this made her cough up the Pea.  I feel though that perhaps there is still infection left behind and growing all the time.

If this is only Copd can anyone tell me if there is a long term cure or treatment my mum can take to improve her breathing.The treatment she takes just now is only oxygen, she hasnt got a nebuliser.

Please if any one has any advice please send it on, as any advice is better than what i feel just now.  I fear for my mums life at the moment and i despertaly would like to have a better understanding of what i could do to help her.

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Annie Robson replied on 07-11-2009 4:40 PM

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Hello Gayleybo,

Your own pain shrieks out of every line of your post.  I am sure you know deep down that only a medic who can actually SEE your Mum can make any difference.  Long distance diagnosis just won't work.  I am sure  that the medics who are close up are doing their utmost to alleviate her distress.

I hope that you will find it useful to come here and share your story with us - it will help is you have a safe place where you can admit how awful it is to see her like this - whilst putting on a brave face for her.

I don't have children involved in my story - and I in a way that's a re;lief - but I think your Mum is blessed to have you to care for her and to love her.

Annie

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Shibley replied on 07-11-2009 6:21 PM

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Hi Gaylebo, 

Thanks for your post in which you describe an acute worsening of your symptoms of your mother with a dual diagnosis of COPD and sarcoidosis.

Obviously, it would be wrong for us to offer specific advice on the basis of the information above. It would be worth though perhaps your mother seeing her GP/hospital Consultant as soon as possible with a view to taking an up-to-date history, performing an appropriate medical examination, and doing some targeted investigations. The history of your mother will be especially important for the Doctor looking after her. 

It might also be worth contacting our Helpline on Monday morning, to get some personal support.

I wish not to inhibit to others from posting here in response to your post above, to offer some personal advice. 

With many thanks.

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SusieQ replied on 07-11-2009 9:18 PM

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Hi Gayle,

My heart goes out to you - what a situation you are in and your poor Mum. 

I can imagine how lonely it must feel right now, but there are no boffins on here, just ordinary people who have experience of the various conditions and who are all at different stages in their illnesses.  Just one thought, if she has coughed up the pea and took antibiotics, then doubt very much whether there would be any infection still there as a result.  Quick blood test would give the answer to that.

I have COPD, but no knowledge of Sarcoidosis at all.  I am on oxygen, but only need a nebuliser in extremis, i.e. a really, really bad infection which will not clear up with normal antibiotics. 

As has been said, think the best thing you can do is speak to her doc or consultant and put your questions to them.

As for helping your mum, personally think you are already doing that just by being with her and giving her your support.

Thinking of you both.  Do keep in touch.

Sue

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gayleybo replied on 07-14-2009 8:43 PM

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Hello again Guys,

Thanks each of you for responding To my thread, I truely appreciate all your help,advice and opinions.  I would just like to update on my last thread.

The last time i was on the site im sure you could tell i was rather frantic, i was unsure what was wrong with my mum and increasingly worried about the deterioration of her breathing.  My Mum and I was at the Doctors on Monday and we finaly got the diagnosis we had been looking for, for what seemed months.  The result was Diagnosis of COPD.

Its strange as I always had an idea it may be COPD but thought,  if my mum could maintain and battle against a heavy weight such as sarcoidosis then surely Copd wouldnt effect her any worse than that.  It was ignorance on my part im ashamed to admitt.  I now know that COPD is worse and more dibilitating than sarcoidosis and the likes than i had ever comprehended.

My Mum feels pretty devestated as do I, naturaly.  As a strongly independandt woman even throughout her Illness's,  I know that she feels theres little left for her if not independance to walk around shops with her daughters, meet for a chat and a coffee or plan holidays and visits.  After battling with Osteperosis as a result of the treatment  received from The Sarcoid to stay as mobile as possible, the irony that she should be confined to a wheelchair through COPD burns.

We are still both very ill informed about COPD, is there hope? Is there treatments? we both dont know.  We both have picked her Doctors brain but i think, they presume we already knew that My Mum had COPD and as a result know how to deal with it.

So a new chapter begins,  I just hope that it doesnt seem as bleak in the forth coming weeks as it does today, and of coarse as my Mum would say "Never, say Never".  I know my Thread sounds downbeat and depressing, I appologise for that guys.  We both know that mobility through a wheelchair is better than none at all.  We both know that we still can do the things we want and did previously, it will just take a little more planning.

Please feel free again to respond to this thread guys as i would love to hear all your stories and receive any advice you have to share, and thank you once again for taking the time to respond it helped alot.

Hope too hear from you soon.

Gayle

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margaret1 replied on 07-15-2009 12:46 AM

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hya Gayle....i think the worst part of having COPD is when it is first diagnosed....i was in a awful state physically and mentally ..and what made it worse was my dad died of the same condition 15 years earlier....the pictures i had in my head were dreadful and the thing i hated most was the thought of my family watching their mother go down the same awful path that i had with my dad....i tried to put on a brave face  (not easy when you cannot get your breath)...but 4 years down the line i am  coping much better..my life is very different but still good

this site is extremely good...its anonymous so you feel as though you can 'bare your soul'....i have lots of times and so have others....i have pictures in my head of my new found friends on here  all good ones....there is lots of information from our previous posts......lots of reading and if you get down there is always the fun forum to cheer you up

i use a little scooter to get around..i was pushed around in a wheel chair for a while but i hated it...i felt like a piece of meat....i now say that the key to my scooter is the key to my life...when my chest is ok i go all over...it gives me a brilliant feeling of Independence

feel free to ask any questions...

cheers Margaret

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SusieQ replied on 07-15-2009 10:29 PM

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Hi Gayle,

Second Margaret's post - we have all, in our own ways, been there, read the book, got the T shirt and survived or are surviving or planning to survive.

Your Mum and you need time to come to terms with the news and then look around to see what help is about. COPD does limit what I can do - but I still manage to do quite a bit :  days out with friends (especially where I can hire a scooter!), lunches with friends (yesterday and today - going to rest tomorrow!), trips to Greece twice a year, shopping trips, just been on a week's holiday with friends to Cornwall (put me off communal living for life, but that is another story). 

Think it is a question of knowing your capabilities and then working within those ......... she will get it wrong from time to time as I have done and will then need to take a day out to recover.  Looking out for help where you can:  I have a cleaner - actually have had one for years, well before COPD, as me and domesticity were rarely heard in the same sentence;  I have heavy, bulky shopping delivered (at the moment there is no delivery charge, which makes it all the more appealing);  I have learned to ask for help, which was so, so difficult, but have, in turn, learnt that many people love being of use and helping.  If they want to peel my grapes and fan me, why should I stop them! 

Is there hope - always.   Is there treatment?   Yes and that is to be discussed with Docs.  Also ask about Pulmonary Rehab - lots of posts on here about that - as that will increase mobility and strength, which will in turn make better use of oxygen and enable your Mum to continue doing various bits and pieces for herself.  For me, I also make use of complementary therapies, i.e. reflexology, reiki, ayurveda, and I also have a regular massage.  As I have the delight of bronchiectasis, which means I cough quite a lot, I need to have what I call my coughing muscles straightened out - and it is wonderful.  I sometimes just come out and flake out on the bed for a couple of hours - bliss.

By the way never apologise for what you post .......... you do not have to be upbeat or happy, just be yourself and have a good old rant.  Think you just need to be with the diagnosis for the moment and allow that to settle.

Good luck on this journey and, for my part, I would certainly say that it is not the end of the world - just the start of a different journey.  Has she seen a consultant yet?  Not sure where you live, so do not know whether you have a good lung unit near you.  I am in Bristol and we have fantastic service with a brilliant consultant and lung unit ... very well looked after and so fortunate.  Anyway  if you have any further questions, post away but would also encourage another trip to Docs with a list of questions.

Sue

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Geof the Miner replied on 08-10-2009 9:13 PM

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Hi Gayle and Mum. I am very sorry for replying to you late only I was away in Cornwall getting soaked for three weeks.

            What I have read on the other post to you are spot on but there again I knew that because each of the people on here have just about been where your mother is now, I don't know about the Scarcoidosis, this is new to me. I was diagnosed with COPD. Chronic Bronchitis and Emphysema just over three years ago.

           Gayle, has you mum as A loving and caring person looking after her, I had my wife Ann She was offering me all the love imaginable; if she was to have wrote about my 12 months three years ago it would have been similar to yours. "I am scared to death, this last 12 months he as gone down hill that fast I a sure that he as given up" And yes she would have been spot on. I had given up. Then something that I have seen Suesie mentioned to you, Pulmonary Rehab. You ask if there are any break through treaments to help your mam and yes there is. If you can try and find the two threads on here about Pulmonary Rehab and you will see what it as done for us people on here and lots more. I went from being in the Xackers yard to running about all over the place helping others, going on holiday to Cornwall, Heartbeat Country with a 12 year old grandson, then on to Whitby and finished in Scarborough over two days then to Skegness for another two days That was mainly down to the help and exercise that I recieved at PR.

           I don't know about your mums physical problems are, but the people at Rehab will know and will set a program for mum to do, which with your enthusiasm behind her will help bring a big change in mums mind once there are positive thoughts going through mums mind she will be on a winner. I know that all this seems hard to believe for now and that is where the second great peace of treatment comes. You have found your way on here. Every person on here are as have already been said they are all on different levels of COPD. There again like me they have all found the ways and means to be able to live a good quality of life round their problems. The thing is Gayle all these people are waiting to pass that experience on to your mum, in order to give her the same sort of life as we are now living.

            I know that there is no cure for COPD but there is a way of being able to control its progress somewhat and that is what the people on here have learnt to do and like you do now Gayle. I would have been the same three years ago saying to Ann noway its impossible to be like them well by my own personal experience its not. It is on offer to everyone who wants it. So Gayle you keep your mums and your chins up and if you do feel down any time just click on here and we will be waiting. Geof the Miner.

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Elaine Wright replied on 09-04-2009 1:02 PM

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Hi Gayle.. sorry I have only just joined the forums for lung deceases as I have been mainly focussing on the kidney cancer side of my illness but now I have kidney cancer related sarcoidosis and have been diagnosed for just over a year so maybe I can help with the questions of treatment.. I am no doctor but  can tell you how they are treating me... I have had one long course of steroid treatment last year when I was first diagnosed.. they put me on Predniselone tablet.. i started for the first month on 6 a day then they slowly cut them down to 4 a day then 3 a day then 2 a day for about 6 months then slowly weaned me off them over a period of 4 months cutting one tablet a month untill I was totally weaned off them.  At the same time because I was on steroids long term I had a bone protection tablet once a week as long term steroid treatment effects the bones. for pain management I was on paracetamol and Morphine (MST's) I stablised but this summer I have had another bad bout.. apparently from time to time it will get worse and the only treatment is to go back on the steroid treatment for a time then be weaned off them again slowly.  I too am on oxygen I have mine attached to my CPAP machine too through the night.... I also can't walk more than a few yards so your mum and I seem to be in similar circumstances... I hope this has helped please contact me at any time if you just want to talk or pick my brains

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dfwhite19438 replied on 09-12-2009 4:22 AM

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Hi Gayle sorry to hear about your mum, don't give  up everyday medicine comes up with new treatments for all kinds of illnesses ! Good luck to you and your mom,

dan-ma