Carer for someone with Sarcoidosis and COPD

I am caring for my husband Peter who has Sarcoidosis (21 years) and COPD (2 years) and just wanted to chat to anyone who is in a similar position. I can also help answer questions as lung disease has been part of Peter's life for a long time now. On the whole things are not too bad but when Pete gets a chest infection he can and has ended up in hospital. It is good to see a site like this where people can get good information and hear from others too. I sometimes feel a bit isolated but have a great family around me and we have just become grandparents for the first time.

13 Replies

  • Thanks for your comments and yes, I am learning more about COPD. Pete has the bronchitis form and it was caused by the sarcoid causing scarring on the lungs and in the airways. It is a battle especially in the winter time but we just get on with it one day at a time.

  • Hi

    I have chronic sarcoidosis which has resulted in pulmonary fibrosis. I was diagnosed in 1999 but doctors said I could have had it for years before. Only really became symptomatic about 6/7 years ago and kept thinking it was just me being unfit and lazy (still think this sometimes) . Its good to hear from you, I am on O2 24/7 and really gets me down being unable to live a normal life. Jill

  • I do feel for you and please keep in touch. So many are touched by chronic illness so never feel you are alone. Pete is not on oxygen but maybe one day he will be. Sarcoid is a horrible disease and I hope you have good family and friends around to help support you as well as doctors. Good to hear from you.

  • I also am a carer for my husband who has ipf and emphysema. He took early retirement from work when he was 48 as he had a stroke, then a carotid endartorectomy and the drs said if he hadnt had that he wouldnt have seen 50, since then we have been of the opinion that a longer life being poor is better than a short life spent working for luxuries that we really don't need to survive. So life is slow, but life is good.

  • I agree with you and we all have to take one day at a time. I am happy when Pete is doing well and so far, so good. I hope that your husband continues to stay as well as possible and you too of course. I make the most of the summer as winter is our enemy. We have the flu jab but Pete still manages to get a chest infection and was in hospital in January. We have a lot to be grateful for, especially with our new grandson and another grandchild on the way next January.

  • grandchildren are a joy, we have number 9 due in sept and one great gransdon ages 2, you shoud have seen the nurses face last time he was in hosp in april, we had to sit in the day room and go in in dribs and drabs, but they all wanted to see him.

  • How lovely to have so many grandchildren and a great grandchild too. It must be great at Christmas! I think visiting times at the hospital would have been very lively but nice to think they all wanted to see your hubby. Take care and stay well.

  • I too am a carer for my husband who has COPD for 6 years which is now severe! When he is well life is OK - we just got a lot slower than anybody else! And I always find myself making sure we are not visiting anywhere with stairs, or hills, or anyone with a cold is banned from October onwards til March!! (Well nearly!) It is very frightening when he gets a chest infection and we have a young daughter who finds it really hard when he is ill. I hope your husband stays well and you can continue to enjoy life! Good luck! TAD xx

  • Thanks for your support and I do know what you mean about anyone with a cold! We have a new grandson and he can pass on or catch things very easily so we will have to be careful in the future. It must be very hard for your little girl to see her dad so ill. I do wish you the very best for the future and hope your husband can stay well too. Enjoy all the good days as the bad are rubbish! xxxxxxxxxx

  • You are so right - the bad days are rubbish - thank god for the good days! I have found this blog such a help, COPD is such an isolating illness and unless you suffer or care for someone with COPD you just don't understand. Not even friends or family. Will be getting the anti bacterial hand "gel" again this winter - all those who enter have to use it!!!! Take good care and hope your husband stays well! TAD xx

  • COPD is very isolating and scary at times and good for you with the hand gel. We also have several bottles of the stuff around the house. I also like the Dettol spray that kills off viruses etc. It is hard to get through to people how serious this awful disease is but our family are pretty good on the whole and I am happy to remind everyone! You take care too and hope all goes well for your husband. This weather is not very summery but what can we do about it?! xxxxxxxxxxxxxxxx

  • Hi, I have had sarcoidosis since the early 1990's, and at the moment am experiencing a consistent cough wich doesn't let up.

  • Hi, it may be a good idea to get the cough checked out by your GP to see if there is any underlying cause. Do you bring up any mucous at all? Pete was also diagnosed in the early 90's and is under the Royal Brompton but only goes yearly now so they can keep an eye on him. The cough does seem to be part of sarcoidosis for some but it is always worth getting checked out. Let us know how you get on and good luck to you. Take care xxx

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