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jonah23
jonah23

I have read all your posts where some have mentioned Symbicort, Prednisone etc (hope spellings are right). Am wondering if anyone knows or uses the medication my husband is on. He was diagnosed in 2009 (swine flu period, anyone remember) while on holiday in the UK with 

COPD. When we returned home his medications were changed to Foradil ( Atimos), Atrovent, Beclamatezone, and Ventolin when needed. He has done one rehab course, but not invited for more. During his last spyrometry test he had a terrifying blackout whist in the cubicle and that was the second time it happened. So he cannot have any more of them. He last time he had an  eight monthly appointment in hospital he was told no further appointments  but to contact GP if he got ill and he would refer him to the specialist. Is this norm? I was very cross with this as it was a peace of mind to have someone there in case of problems. Also people keep talking of readings, I presume readings you do at home? What are these? Do you mean you have some machine to do readings at home? Would be very happy if anyone could enlighten me. Thank you.

1 like, 6 replies

6 Replies

  • martin63346
    martin63346 jonah23

    Posted

    Not sure what happened to my last reply - but to continue - in addition to the finger oximeter, others also have a blood pressure monitor. You do not mention if your husband is receiving home oxygen - which many of us do, if our oxygen saturation is continually low......less than 92 percent when resting, but preferably in the high 90s, and when walking or exercising it should be more than 88 per cent otherwise damage can be caused to vital organs which rely on oxygen and a good blood supply. If your husband was me I would seek a pulmonary specialist to give me a thorough going over, as blackouts when undergoing a full spirometry is not normal, indeed it is very abnormal. For the record, I take Symbicort (18/400), and Spiriva. Prednisolone is only when I have an exacerbation (worsening of symptoms). I also take a multivitamin, Vitamin D (at least 1000 units) and calcium (to guard against osteoporosis - Prednisolone apparently depletes calcium).
  • c86791
    c86791 jonah23

    Posted

    Hi, what a dreadful time you have both been having. My sympathy. All I can contribute is that I only get prednisone during an exacerbation (a common virus that has a bad effect on my lungs) and that I stopped sing Symbicort because it made me feel so dreadfully tired. One more thing I would suggest: if your husband has never smoked, think about relocating to somewhere with less dense traffic. All the best,
  • hypercat
    hypercat jonah23

    Posted

    Hi I am not sure where you live but in the UK he would be getting at least an annual review by a respspiratory nurse.  Hasn't he been offered anything like that?  x
  • ladyjack51
    ladyjack51 jonah23

    Posted

    Hi jonah23,

    I think your husband's meds are probably ok but are a bit outdated. Those are some older medicines and they have some great fast acting ones out now that most of us use. I think your husband needs to see a specialist unless this IS the specialist you are talking about. I hope not. The best test at home that we all refer to is a pulse oximeter...the little deal that the put on his finger and it reads out the percentage of oxygen he is getting in his blood circulating to all his organs so that is a very important tool to have bc you can tell quickly if he is in trouble or needing some oxygen for sure. It also tells you his pulse rate- how fast his heart rate is having to pump which if elevated is a flag too. They are pretty cheap on Amazon or most stores. I'm surprised if he has already been to pulmonary rehab that yall don't already know you need this. Anyway...I hope this helps and keep us posted please!!

    Ladyjack51

  • jonah23
    jonah23

    Posted

    Thank you all for all your encouraging and enlightening help. I feel disgusted that they have actually literally knocked him off their list when his lung function is just 36%. Luckily we live in a warm country where the sun shines for 3/4 of the year. Dread to think where he would be now if we still lived in the UK, especially come winter. We often go to the UK when weather Is fine and since he is English and an English pensioner (we both are) I wonder if he could see a lung specialist

    there. If anyone is knowledgeable about this, please inform us. Thank you.

    • hypercat
      hypercat jonah23

      Posted

      Hi I know in the UK that they don't generally consider a lung transplant unless he is very severe ie under 30% lung function.  Maybe that is why?  Also here because there is a big waiting list and not enough donars then age is also a criteria they use.  x
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