Feeling so helpless!

Hello

I would just like to share my story below

My husband was first diagnosed with Emphysema 3.5 years ago, caused by working down the coal mines for 21 yrs, he's 64 yrs old. He was diagnosed via chest X-ray and CT scan due to his lips turning purple with cyanosis which made us think he had heart trouble, he was sent to see chest specialist who was very understanding when my husband announced that he wouldn't take any meds/inhalers that were offered to him as he didn't believe they would help plus they couldn't cure him so he didn't see the point in flooding his body/lungs with yet more toxins from these inhalers. Together as a couple we went onto a wheat/sugar free diet (which isn't easy believe me) as too much sugar in the body makes the body acidic and sugar also feeds tumours etc so we wondered if it would help slow down the progression of Emphysema hopefully to a halt. We ate nothing but organic where we could, I scoured the internet for alternative meds and he took Serrapeptase which eats away inflammation in the body, Zell oxygen, Krill oil and oil of Oregano which has been brilliant and highly recommended for keeping colds at bay. We purchased our own BP machine and oxymeter to keep a check on blood oxygen levels which were always between 95-97% and until November last year (2014) he never even had as much as a sniffle. We walked our dogs 3 to 5 miles every day, decorating, gardening and inbetween moved home 3 times just in one year which is very stressful in itself. Kevin my husband put it all down to the use of the amazing oil of Oregano because prior to COPD diagnosis he used to catch colds all of the time and would take weeks to recover, he took it twice daily 8 drops under the tongue and he even nursed myself and our daughter when we both caught flu and he never got it which was amazing! but things started to change when he became complacent and being a tight Yorkshire man lol he thought he would cut a few corners ie reduced it to once daily, then every other day until he was taking it just once a week which proved to be wrong thing to do because he caught a virus which knocked him off his feet, it took 3 mths to recover and his health as deteriorated very quickly, during that time his GP put him on 3 courses of anti biotics which did no good at all and his blood oxygen levels dropped well below 90% down to 83% and still to this day never get over 88-89%, he's exhausted all of the time can no longer walk the dogs very far, hills are out of the question, he gets out of breath just getting dressed and walking up the garden. Respiritary clinic nurse told him his lung capacity is 57% and he's got the lungs of a 90 yrear old which has spiralled him into a state of depression. We cannot believe how one exacerbation can cause his health to deteriorate so quickly and worry for the future and dread the winter coming as the cold damp weather is lethal for anyone with COPD, kevin is frightened at the speed this has deteriorated just 8 mths ago he was walking 3-5 miles per day and living his life to the full, his outlook on life has deteriorated too which is understandable, thank you for reading this and I wish you all well.

18 Replies

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  • My husband too has Copd for over 12 years. He was in denial for years and. Just about used inhalers. About five years ago now he was very ill I remember it was new year and he too deteriorated very quickly, the good news is he stabilised - he actually didn't recover fully but even though he has only 27% lung function still works and we have learned to have a good quality of life that is not determined by Copd!

    The turning point for him was a pulmonary rehab course - you needs referral from the doc. Six weeks, twice a week, two hours, one of monitored exercise and one of information. It sounds a bit dramatic but it changed his life and gave him back some control. Personally the inhalers he takes help to ward off the breathlessness. The other thing would be to have a flu jab and pneumonia jab.

    Don't loose heart it can take ages to recover from these viruses. My husband also takes serrapeptSe which seems to help. You might want to ring the bed helpline on Monday and ask their advise. Take good care, lots of love TAD xxx

  • Hello Tad

    Thanks for your advice I will try to get my husband to at least think about the pulmonary rehabilitation as he's not got much faith in the medical system. He refuses to take any flu/pneumonia jabs as after researching about these the only people who benefit are the pharmaceutical companies that manufacturer them plus the ingredients leave a lot to be desired. Kevin's not in denial he's angry and bitter as he's never smoked and always been health conscious and it's directed towards the NCB who incidently refuse him compensation :( we are both firm believers that the body given the right tools ie good clean food/nutrition it should be able to repair itself. We know there's no known cure we would just like to stop it getting worse, since his exacerbation he's been on spiriva once day plus blue rescue inhaler none of them have helped at all, the other annoying thing is if it wasn't for this horrible debilitating disease he would be very fit as his bp, cholesterol and pulse rates are  all very good for his age. I'm pleased your husband is stabilised and I wish you both the very best of luck and health for the future xx

  • Hi sorry your hubby has/is poorly ,I'm in full,agreement with other comments on here ,,,pulmary rehab course ,,,,,they will be of a great help,to your hubby,,, I've attended the course a few time since 2008 due to infections ,,,,but with their help I am back in the gym again doing approx 2&1/2 Klm on the tread mill each time ,my aim is reach 5 Klm then I want to do a sponsered walk for our pulmary rehab team ,...so,when I reach that level,I will be on here looking for sponsered haha,,,,,seriously though I was diagnosed back in 1992 I'm age 69 and have had many additions to hospital and intensive care unit when I had septasyma ,,,,I take each day as it comes and try to keep as fit as I can ,I intend to be around for a good few years yet ,I don't have to use oxygen at home ,and I can't fly abroad anymore even with Supplymentary oxygen as my oxygen levels drop far too low,and I'm afraid of the sea because I panic ( I can't swim ) ,,,so we enjoy our holidays in the uk ,and thoroughly enjoy the quality times spent with family especially our 12 yearold grandaughter whom I adore and is the light of my life ,so I try to focus on what I can do and not what I can't do ,we all get to know our limitations and have some days better than others ,once you've done the rehab course ,,the team are only a phone call away ,,,and I find ( FOR ME ) they are better than going to see my GP , they are specialist nurses in COPD ,

    I wish your hubby well ,and you to ,best wishes ,

  • Hello Nanny 1086

    Thanks for taking the time to reply to my email, we can relate to a lot of what you've said and when you do your sponsored walk for the pulmonary rehab team we will definately sponsor you! Everybody responds differently to COPD our neighbor also has Emphysema and a host of other health problems and he's got it quite severe poor soul, yet he always manages to stay positive and keeps busy and a happy go lucky chap, Kevin my hubby does get stressed very easily and wishes he could be so positive and he knows being negative and a stress head only makes things worse! having said that he's much calmer now than he's ever been as his lungs won't allow him to lose it lol. I'm glad I found this forum because a problem shared is problem halved and just makes you feel better as other people including my family don't understand what this terrible debiltating disease does as they only see kevin when he's having a good day and never see him when he's struggling to breathe, anyway we wish you and your family well and take care

    jayney3 x

  • Hi again ,can I suggest you take a look on you tube and look at the Buteyko breathing exersises ,,,I have to say I don't do them every day ( like I should ) but wephen I've have found my breathing a bit more trouble some than usual I do the exersises,and I do feel the benefit ,I have a friend who's hubby is like your hubby and refuses to use inhalers etc even though I've been in his house and showed him the difference of going up stairs without using ventalin and later with it ,,,,but he still refuses ,,,but I've showed him the exersises and he does them occasionally and he said they DID help ,

    It's such a shame your hubby won't take advantage of the medication and help that's out there ,,,,,but I understand ,,,,as I to am married to an ex miner who was in the pits from age 19 until they closed down ,that broke his heart and as a result he ended up having 2 mini strokes and panic attacks ,,,,,but like your hubby won't go to the doctors ,,,,I think it must be due to ,,,,,tough miners syndrome ,,haha,

    But he does keep quite well ,,,,,he has to he says ,,,,to look after me haha,,,,,,I thank god for my hubby in my life ,,,,I really don't know where I would be without him ,,,,please stay intouch ,I'm here to listen ,,,,as an after thought ,,,,,You have found us ,,,,,would your hubby read some of the positive comments on here ??? ,

    Take care ,,,,God a Bless ,

  • Hello again Nanny 1086

    Since his exacerbation that sped his deterioration up like something on fast forward he's been taking Spiriva inhaler once a day and also has a blue rescue inhaler, been on them for 5mths now and they've done nothing for him at all, no relief....zilch! he's really disapointed and I can see where he's coming from because a few months ago he was like someone who didn't have a lung problem at all, fit as a fiddle and he's gone from that to having lungs of a 90 yrs old in a short space of time which is quite disturbing! His respirtory nurse told him the inhalers won't cure him only help him manage the disease and hopefully slow it down and so far they're not doing that. I have to say that I did originally support him in his decision not to go down the inhaler/steroid route and to try and manage it with alternative meds and for 3 whole years he did very well with not one cold/flu and even nursed myself and daughter when we both had flu and he never caught it, which was a miracle because prior to him going on his total health regime he used to catch a cold at least once a month and take ages to get over it. He decided to take the nurses advice and take the meds and so far his blood oxygen never gets above 87% 88% occasionally it goes to 90% then plummets within minutes! prior to his exacerbation it was between 95-98% without any meds at all, so its easy to see why he doesn't have any faith in them :( kevin is a worrier and doesn't want to know what stage he's at if he knew he's have no finger nails left and his stress levels would go through the roof! I'm trying to get him to go for pulmonary rehab as advised by some of the other forum users i think it would help him, he's also just started today on Vitamins A & D3 as advised on this forum so will see how he goes I will keep you posted, also will get him to look at the Buteko breathing techinques on you tube :) in the meantime take care and very best wishes to you and your family

    Regards

    Jayne

  • Just a quick thought ,,,,has he got a nebuliser ? As when my breathing is bad and inhalers just arn't enough I have a nebuliser ,it's just ventalin but many doses stronger ,I also have an actimel drink a day and take echinasia and vitamin c, big hugs,

  • Yes he has got a nebuliser but was using colloidal silver in it (he won't uses anything else) it did seem to help for a while as it's a natural antibiotic amongst a host of other things as well, but hasn't used it for a while, he's just re started zell oxygen which is a drink with all vits/minerals and enzymes the body needs in natural form (he used to take it regularly but it's quite expensive so stopped for quite a while) he eats enough fruit to sink a ship lol I call him a fruit bat as I've never known anyone eat as much fruit as he does so his vitamin C levels should be very good. His diet is excellent better than a lot of people's to be honest but it's not helping like it was doing before, maybe he's gone onto the next stage of his disease who knows? take care and thanks for sharing your advice it's much appreciated :) x

  • Pulmonary Rehab is a great way forward as it will get the breathing techniques etc. It will be well worth it. I did it in 2008 after 32 days in ICU with lung failure. One of the wind test tools I had was 3 balls that at first I could not even get one half way up the tube by the end I got all 3.

    Be Well

  • Hello Offcut

    Thanks for the advice I agree the pulmonary rehab would help him and certainly won't do him any harm, I will just have to talk him into giving it a go! He has been practising breathing techniques on & off but needs to try to stick to them. He's always been very active and feels embarrassed by the fact that he can no longer do what he once did and he has to come to terms with accepting that, he is getting there slowly :) you too keep well

  • It is great that you eat organic and use the oregano. The more of such the better. I ve faith there.

    Though I wonder if it is so wise to refuse to use the inhalers. it is certain they bring relief and i have not seen any proof they do harm.

    All the best hopeup.

  • Hello Hopeup

    Thanks for taking the time to reply, since his exacerbation he's been using Spiriva and a blue rescuer as advised by respiritory nurse none of them so far have helped... no relief no nothing! We understand that these inhalers do take time and do help other people but have so far not done anything for Kevin, he's been on them now for 5 mths and as for doing any harm? we're not completely sure on that one either as at the end of the day all drugs are chemicals and toxins and they have potential side effects for some more than others I suppose as everybody's body reacts differently, kevin feels that his body/lungs are congested enough with the disease without overloading them more with toxic drugs, it's just a personal preference and I support him in this decision. I am trying to talk him into attending pulmonary rehab to see if this helps and he's just started taking Vitamin A and vitamin D3 as advised on this forum via another post and he does do breathing excersises when he remembers lol, all the best to you too take care

    regards

    Jayney3

  • Hi me again ,,,,I'm really trying ,,,,,no medication in this comment ,,,,,,ask your GP for a flutter devise ,,,it looks like a old fashioned pipe ,,,,the idea is ,,,there's a Ballbaring in the small cup and the idea is to make it move ,sound silly ,,,but my God it's helped me to shift the thick mucus from the bottom of my lungs ,I got mine on prescription but they are on amazon so take a look at the comments on there ,and go on you tube it shows you how to use it and the benfit,,,,no chemicals or anything just your puff, I had a bad year lays year repeated infections and the gunk was thick and sticky and used to make me choke/gag as I just couldn't shift it ,,,,but he pipe was brilliant ,,it's a simple thing that is amazing ,this was reccomended to me by the copd specialist nurse who was visiting me 2/3 times a week for most of last year,,,,again best wishes,,,,,goodnight ,

  • Hello again Nanny 1086

    That sounds really good I will have a look on amazon for that, thanks for sharing as I've never heard of it before but I think he will give it a try as it's chemical free, many thanks and night night sleep tight xx

  • I have emphysema. I am using spiriva and advair and 10mg of prednisone. I was first told I had cope in 2008. This is 2015 and I have used oxygen for the last four years. I am 82 now and use my O2 meter to keep my O2 at 98 while sitting. I can only walk about 40 feet til it drops to 90 and I feel out of breath and have to sit until I recover. I am chair bound for all purposes. I have questioned the advantage of using spiriva. I tried without it for about two weeks with no apparent change. All doctors say take it is A drug great drug. Anyone have an oppinion about it.

  • Hello Thomasjr

    My husband has stopped his spiriva just over a week ago as he feels it does absolutlely nothing for him, so far he doesn't feel any different, although it's early days yet.

  • All my doctors say it is good. I am the worst emphysema patient at the VA. I tried for several weeks skipping the spiriva with no noticeable effects. If it helps it must be very little. I am still using it in case I have missed something.

  • Hi Flibberti

    I agree that drugs do work for some people and do indeed save lives, but both kevin and myself do not believe in taking drugs that simply aren't doing anything to make him feel any better, what's the point? We've witnessd 2 close friend's close to death from cocktails of different drugs GP prescribed and we don't want to go down that pathway if we can help it. Kevin did give in after his exacerbation and started taking his inhalers as prescribed that was up until recently and didn't or doesn't feel any different at all, so why put extra toxins into one's body if they're not doing anything? He doesn't take colloidal silver now. but he as used it in the past and did get some relief but since he contracted the 2 viruses before and after christmas nothing seems to help! plus it can be exensive, he does still take oil of oregano under the tongue twice daily and is convinced it's the only thing stopping him from getting colds which develop into something more sinister! he swears by it and believes that when he got complacent and went from twice daily to once daily, then every other day until eventually he was taking it once weekly, which is when he took ill. kevin's Emphysema isn't caused by smoking (he doesnt smoke) it's caused by 21 years down the coal mines. Nobody tries harder than kevin to get on with life and he can't help the way he is with regards to being a worrier, he worries about everything it's the way he's made, he's done everything in his power to help himself but nothing is working no wonder he gets down. We choose to eat healthily and organically as much as we can as we believe in nourishing the body as much as possible to help the immune system do it's job without having to contend with overload of chemicals/pesticides/toxins. Before his exacerbations he was doing extremely well without any medical interventions, could walk the dogs for 4 or 5 miles daily, blood oxygen sats were always 95% and above, blood pressure and pulse near perfect and in less than 6 months he's gone from that to having lungs of a 90 year old man (as told by respirtory nurse) and blood sats are never above 88% and sometimes as low as 80% so what will the next 6 months have in store for him is what we're scared about.

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