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diane

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diane_76939
diane_76939

i  have  severe  copd   .. use  o2  for  walking around   because i retain oxygen     i am   64  married,    have  a Daughter  whos  special  needs   i  try  to keep on  top  for  her   sake  ..  hope  to chat to people  with the same  illness  

3 likes, 13 replies

13 Replies

  • gbhall
    gbhall diane_76939

    Posted

    Welcome Diane. I am not myself a COPD sufferer, but my late partner was, although it was a form called IPF (Idiopathic Pulmonary Fibrosis), meaning lung fibrosis of unknown origin.

    Typically IPF has about 5 years expectation, which in her case was quite accurate. In her last 12 months she was on O2, using a portable oxygen concentrator, although for the first 3 months of O2 provision, it was cylinders for ambulatory use only. These she found too heavy to carry, so I organised a trolley so she could pull them around. She worsened fairly rapidly (over 12 months as I said), and a concentrator was better because she soon needed 15 hours per day or so, which cylinders can never give you.

    When you say you want to chat, I assume you want to find someone of similar condition as yourself, so you can exchange notes, I can tell you immediately that COPD does not, as a rule degenerate anywhere near as rapidly as IPF does, so don't panic !!  However, the treatments are probably identical.

    You will need to provide much more detail of your current condition to get any helpful feedback, starting from basics such as where in the world are you, do you have to pay for any medication, what do you know already about your lung capacity, oxygen levels at rest, sleeping and active. Do you smoke? Do you have specialist pulmonary doctor support?

    What medications are you on, have you had lung function tests, X-rays, ECG of the heart, have you any co-existing health conditions such as diabetis, obesity, allergies, food intolerances, any physical difficulties such as arthritis, osteoporosis?  I do not understand what you mean by 'because I retain oxygen' ?

    Sorry this is all looking very intrusive, but please be aware people cannot advise you without it, and advice is what you will really benefit from. No doctor especially GP's has any real understanding of the condition called COPD, and truly the medications although many brand names exist, all fall into an extremely small number of similar groups of medicines with similar aims, largely designed for asthma treatment and suppression of inflamation.

    So here is crucial tip number one. If you do not own a pulse-oximeter, buy one tomorrow. Being a mere man, I hope some of the remarkable ladies on here will take over from me now. Over and out Diane, my very best wishes to you.

    David

    • diane_76939
      diane_76939 gbhall

      Posted

      hi  David  i am from a small village  near Scunthorpe  ...i  used  to  smoke      i  stopped in 2007  once  i realised    it  was more than  ASTHMA   i  had ?   i  have  multiple  illnesses       Diverticulitis  , ibs ,   hypertension ,    ARTHIRITUS,  ( thyroid   tsh) ,   i  take      Seretide 250,  Atrovent,Salamol,  i  had an intolerence  to all   inhalers    for copd ..  alergic to  Amoxacilin,  i retain Oxygen .. i carry a  red Alert card   so  not to  be given  more  than  is good for me ??    i take Asprin, clopidogrel ,  Lansoprazole,Mebeverene, vitamin D, ramipril   i do own a pulse  oxy meter    ,  hope  this is  the kind of  information your  needing   ??   
    • gbhall
      gbhall diane_76939

      Posted

      That list is more than enough to be going on with !!! So terribly sorry you are in a condition where in my opinion, you probably need more help than you are getting. The NHS and small villages, though? That is hard. Can you appeal to your GP to get some routine nursing visits, just to keep a check on your condition?

      The reason I am saying this is obviously the responsibilities you have for your special needs daughter on top of your own conditions is more than I can imagine.

      I do hope you are clear that your red card is not for 'retention of oxygen' it is for 'retention of Carbon dioxide' (CO2). This is saying you must not have too much oxygen because you are not expelling enough CO2, probably due to shallow breathing, and this can cause some very severe consequences.

      Because you have that red card, it must mean that the local medical team must be aware, but are they doing enough to support you ? In particular, I think you ought to have specific training in how to breath in a way that clears CO2 as well as possible, and that you should be taught to quickly recognise the symptoms of CO2 intoxication so you can act, call for help or whatever.

      On the other medications, I would question why you have both aspirin and clopidogrel. Both thin the blood, and if you ever get a bleed, especially internal such as your bowel, it can be very hard to stop. All the other meds, I can see why they are prescribed, but a good GP would probably review them all quite often, try to ensure they do not conflict with each other, and try to simplify your life in whatever way is possible.

       

    • diane_76939
      diane_76939 gbhall

      Posted

      I was in Hospital last year was touch and go thyroid again .. made me have irregular heart beat ... I had a scan at the nuclear unit Grimsby. . I stop the clopidogral this month .. I also take mucodine.. it's a year today sick I came out of Hospital after 11 days .. thanks for your comments
    • diane_76939
      diane_76939 gbhall

      Posted

       i have  an  emergancy   pack of    Antibiotics +steroids     my  hubby   has a  chest infection   i started  coughing  last night a tight chest  ... but dont know if to  start my  pack  only just had   AN antibiotic    2 weeks  ago  ...  but feel if this is the start of an infection    better catch it early  ??   
    • gbhall
      gbhall diane_76939

      Posted

      I could not possibly advise on whether or not you should start your emergency antibiotics for what may just be a typical COPD problem without any infectious basis. I have actually spent a lot of time this morning trying to discover the standard treatment regimes and it is just a complete confusion with very little reliable research. Some indications are that only a blood test for CRP (infection indication blood marker) can be reliable. I dare not offer any advice.

      Steroids as well, eh?  There I can be be less cautious. If not on long-term prednisolone, then don't take steroids without Doctors insistance, except for very short periods. It's a treadmill that is almost impossible to get off, and if I may illustrate what I mean, my partner was on 10mg per day for over a year. She looked very, very well on it, smooth skin with lovely colour. To all intents and purposes she looked in blooming health....if you ignore the swollen feet and ankles, the loss of appetite, insomnia, irritability, high heart rate, big blood splodges under the skin of arms and legs coming from nowhere... etc.

      When a nurse had attended to her pressure sores and announced there would be no further attendance, I was so upset because I knew the truth. The nurse's parting comment is memorable. "I don't think she is anywhere near as bad as she thinks she is, you know". She died less than three weeks later.

      At the very least, any medical person not familiar with a person on steroids may make a judgement based on appearance and be utterly mislead, to your great harm.

    • Vee2
      Vee2 diane_76939

      Posted

      Hi Diane if you have been issued with an emergency pack you should also have been issued with instructions on when to take what.  Of course you could ring your GP surgery and request a telephone appointment today as you suspect a lung infection and are unsure about when to take your emergency pack.

      The emergency pack is not a cold but specifically for a lung infection.

      more difficult breathing, feeling unwell, mucus colour change etc.

      You may want to read more about chest infections listed toward the end of the post Tips and know the difference, just scroll down toward the end of the post link here:  https://patient.info/forums/discuss/tips-know-the-difference-478568

       https://patient.info/forums/discuss/tips-know-the-difference-478568

       

  • Vee2
    Vee2 diane_76939

    Posted

    Hi Diane, Welcome

    I have COPD, specifically emphysema,  Diagnosed 12+ years ago but I am not on oxygen, in fact my lung functioning has improved since initial diagnosis, I put that down to giving up smoking and continued regular exercise.  Pulmonary Rehabilitation to kick start the exercise is a big help for anyone recently diagnosed or anyone who has deconditioned.

    Good to have you here.

    • diane_76939
      diane_76939 Vee2

      Posted

      Hi vee2 my lung condition is Severe 39% on my last lung function test .. not good ... I was going to ask if it's possible to get the percentage up with exercise ... I know we can't reverse the damage ... but would be good to keep trying to enhance the percentage of lung function .. thanks for yourcomments much appreciated
    • Vee2
      Vee2 diane_76939

      Posted

      Yes do try for pulmonary rehabilitation if you have deconditioned, keeping the exercise going after PR is another key factor which helps tremendously.  

      If its any help diane I have known people with lung function around 24% and less who still exercise even when on oxygen, it is possible but as I said earlier if you have deconditioned ask your GP for a referral to a pulmonary rehabilitation course and if need be referral to consultant for a reassessment of a more mobile option for oxygen when you are out and about, that is if you don't already have that organised.

      All good wishes to you and keep fingers crossed you can access a PR course fairly quickly.  In the mean time you could start walking regularlary if only inside say for 5-7 mintes 3 x daily.

      V

  • david1942
    david1942 diane_76939

    Posted

    Hullo diane -- gbhall's suggestion of an oximeter to assess variable results throughout your day is possibly the most sensible starting point at this stage. None of us are professionals in the field; trial and error by the individual -- supported by medical advice -- can produce some solutions

    In addition to an oximeter, I would (for safety precautions) include purchase of an efficient BP wrist monitor. Brand names canot be put up on a discussion thread, but you can find one cheaply @ £10 approx. It will also include pulse rate when you are taking a blood pressure reading. By following sensible steps you should be able to avoid most risks associated with your condition.

    With improved breathing performance you may eventually find that oxygen intake can be reduced. And I am assuming your cylinder(s) are calibrated to 2% O2.

    One definite result for me has been never to ease up on daily output and physical activity. It can of course be slightly difficult during the winter. Another discovery, and an obvious one for many, is to reduce mixing with people to an absolute minimum. In other words your chances of chest infections are accordingly reduced.   

  • david1942
    david1942 diane_76939

    Posted

    diane -- I was going to put forward a suggestion, but it was before reading your breakdown of complications with other health conditions. Except for the subject of diverticulitis, I am familiar with the handicaps you have listed. All of them occur in the general population. Osteoarthritis is very debilitating especially if sited in the neck vertebrae.

    Unfortunately, in terms of present medical science, drug regimens are the only way forward. Most of them would appear to have side-effects. They, however, generally do a satisfactory repair job.

    I still feel that monitoring your blood pressure, heart rate and use of oximeter could be useful. Hopefully, any hypertension is in the "mild" category. Better still if your pulse is <72/minute. if your oximeter is showing 90-95%, whilst on oxygen, i would have thought it practical to steadily increase light exercise activity, i.e. walking on level ground.  

    for the record (out of choice) i have ceased all medication other than warfarin. i have to continue taking it for the remainder of my days owing to bilateral emboli (clots on the lungs). in another year i should be able to determine if the steps taken can act as a guideline for others. admittedly, it is experimental. at 74 i do not notice much decline. most of the day entails heavy work. currently resting bp is 133/68, pulse rate 43-48/minute. my weight has returned to 75 kg after falling to 66 kg pre-hospitalisation in oct 2015. i normally do one 10-miler each week. other than two setbacks -- oct 2015 and jan 2010 -- i have persisted with a strong exercise routine.

    i believe it can be accomplished although i wish the smoking habit had not started 50+ years ago . . . no problem giving it up though.   inute.="" if="" your="" oximeter="" is="" showing="" 90-95%,="" whilst="" on="" oxygen,="" i="" would="" have="" thought="" it="" practical="" to="" steadily="" increase="" light="" exercise="" activity,="" i.e.="" walking="" on="" level="" ground.  ="" for="" the="" record="" (out="" of="" choice)="" i="" have="" ceased="" all="" medication="" other="" than="" warfarin.="" i="" have="" to="" continue="" taking="" it="" for="" the="" remainder="" of="" my="" days="" owing="" to="" bilateral="" emboli="" (clots="" on="" the="" lungs).="" in="" another="" year="" i="" should="" be="" able="" to="" determine="" if="" the="" steps="" taken="" can="" act="" as="" a="" guideline="" for="" others.="" admittedly,="" it="" is="" experimental.="" at="" 74="" i="" do="" not="" notice="" much="" decline.="" most="" of="" the="" day="" entails="" heavy="" work.="" currently="" resting="" bp="" is="" 133/68,="" pulse="" rate="" 43-48/minute.="" my="" weight="" has="" returned="" to="" 75="" kg="" after="" falling="" to="" 66="" kg="" pre-hospitalisation="" in="" oct="" 2015.="" i="" normally="" do="" one="" 10-miler="" each="" week.="" other="" than="" two="" setbacks="" --="" oct="" 2015="" and="" jan="" 2010="" --="" i="" have="" persisted="" with="" a="" strong="" exercise="" routine.="" i="" believe="" it="" can="" be="" accomplished="" although="" i="" wish="" the="" smoking="" habit="" had="" not="" started="" 50+="" years="" ago="" .="" .="" .="" no="" problem="" giving="" it="" up="">

    for the record (out of choice) i have ceased all medication other than warfarin. i have to continue taking it for the remainder of my days owing to bilateral emboli (clots on the lungs). in another year i should be able to determine if the steps taken can act as a guideline for others. admittedly, it is experimental. at 74 i do not notice much decline. most of the day entails heavy work. currently resting bp is 133/68, pulse rate 43-48/minute. my weight has returned to 75 kg after falling to 66 kg pre-hospitalisation in oct 2015. i normally do one 10-miler each week. other than two setbacks -- oct 2015 and jan 2010 -- i have persisted with a strong exercise routine.

    i believe it can be accomplished although i wish the smoking habit had not started 50+ years ago . . . no problem giving it up though.  >

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