My Sarcardosis with coughing and breathing distress. Any suggestions. I have fibrotic sarcardosis

I was diagnosed over 20 years ago with sarcoidosis however in the past 6 months I have gone downhill really quickly. I am now on home oxygen and morphine for the cough. My question is I am now going through 6 small tanks and 2 large in 10 days, I am hardly able to walk from my lounge to the kitchen and back without being in breathing distress. I asked for another appointment to access my breathing and was given a blood oxygen test, the blood was taken from my ear, and was told I was 3 point above what they would consider giving me treatment, which would mean I would be on oxygen 15 hours per day, not what I would want. I am however really concerned about the distress I get in after very little exercise. I have to wait until 9/12 to see my consultant and although it might not seem to far away to others it seems like a life time when I am struggling so much to breath

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  • Hi Cheryl. My Husband has Idiopathic Pulmonary Fibrosis which is obviously caused by something different to what you have. It does by the looks of things cause Fibrosis which is as far as I know scarring of the lungs. He is like you and cannot walk around without his oxygen. If I were you I would ring The BLF and have a chat about what is happening. I'm sure they will be able to tell you a lot more than I can. It must be very worrying especially if you don't know what is going on. I think maybe if you click on about us on the heading above you may find their number. Please get back to me if you can't find it. Good luck. Hope you get some more information.

  • Cheryl I was diagnosed nearly 43 years ago with sarcoid and like you it developed into fibrosis. Then some years ago I was diagnosed with bronchiectasis and the about ten years ago aspergillus. I am on oxygen at least 15 hours sometimes 24 hours a day. I have had a horrendous cough for more years than I can remember but was never offered morphine. Since july this year I have been on a new medication for my aspergillus and my cough is much subsided. I just hope it continues. I would have thought you would have been given an oxygen concentrator, mines is fab. Hope the BLF can help you. M xx

  • I can only suggest you ring the BLF helpline today and hope they can help. Take good care, TAD xxx

  • Pete has had sarcoidosis for 22 years now and has scarring on both lungs and also has copd. He has a terrible cough but uses his nebuliser and the drugs that go with it twice a day which does help. He seems to have mucus in the throat a lot of the time which causes irritation and coughing. At this present time, he has not been prescribed oxygen and only has then when hospitalised due to infection. The only time he had morphine was when he had his heart attack and when he first had his sciatica about 3 years ago.

    You have had good advice from the others who have replied so I hope that brings some results for you. Let us know how things go. Thinking of you and wishing you well. xxxx

  • Hi Cheryl. I feel very sorry for you in this predicament and hope you can get help soon. The wheels of the NHS grind exceedingly slow when one is struggling.

    I don't know anything about your lung condition so am not sure why your drs are taking the line they are. I too have gone downhill rapidly in the last 6 months and was put on oxygen in September.

    Like Mocarey I did wonder why you have not been given an oxygen concentrator.

    The only thing I can think of is this :- when they did your blood test, sitting at rest, your readings showed that your sats were normal but when they tested you for walking about your sats went down. This would suggest you need oxygen only for 'ambulatory' reasons and not for general need. ' 3 points above' sounds to me like your general oxygen needs are fine. Some people have oxygen only for 'out and about', some only at night and some for both.

    The other thing to know, as my gp explained to me, is that oxygen therapy is given to increase the oxygen levels in the blood where this is seen to be needed. This is to protect the vital organs. However oxygen 'will not neccessarily help with breathlessness' and will not be given purely for breathlessness.

    I would speak to your oxygen nurse and tell her what is happening. She will be able to explain why you have been given what you have.

  • Hi Cheryl

    I have hadSarcoidosis for about 14 years and now have pulmonary hypertension as well I know being on oxygen is a pain but unfortunately it comes as part of the territory. I am on oxygen 24hours on at least 8 litres per minute. I have concentrators in my flat plus I get through a lot of bottles to boost supply when I do anything active or go out. I get out of breath walking about 5 yards or just standing. I get about on a mobility scooter. The morphine sulphate has proved great in stopping me becoming distressed when I get breathless and I dont cough anything like I used to. Take the oramorph as much as you like it's too weak to be addictive.

    On a positive note since I had to give up work I have been studying and just need to finish my final year dissertation to recieve a degree in Politics and International Relations. Was a struggle at times. I am 54.

    Sarcoidosis is something you wouldn't wish on your worst enemy but it's not the end of the world. Get an appointment for oxygen assessment. And think happy thoughts. :))

  • Thanks for all of the replies so kind of all of you. I am a member of the LF and have an appointment for my walking in early Jan together with a lung function test and then I have an appointment at Brompton Hospital to discover if the have funding for new treatment they want. To give me. I will keep you in touch fad to the outcome. I sent my post in the night when I was feeling pretty down so sorry for bending all of your ears

    Regards

    Cheryl

  • Try swimming it helps me no end.

    There are private pools available for rent some places to give you more dignity. Or your local pool will often do a special opening for you if you need peace and quiet. Maybe ask them if you can do half an hour first thing in a morning just before they open. The moisture (humidity) of the pool will help the breathing as well.

    Good Luck

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