New To The Group

Hey jendog,I haven"t been on here since last week so this is the first time i saw ur post.  27% is still considered severe,and i like you functioned well when I was there although it's been so many years its hard to remember. You'll find the strength to throw those smokes away,just do it now before it's to late. I have been going to Pulmonary Rehab for almost 16yrs and this has been mentally and physically a god send as it motivated me. I've seen a lot of good people with 30 40 and some higher FEVs and not be able to hardly function, as thhey were not strong enough to cope with what this illness hands you. I know quite a few folks who've had the transplant some have done real well and some haven't,also know quite a few whomhave been waiting years for the transplant as its never a guarantee you'll ever get one. I'm in south east mi, and we ride often up in the thumb,so if your ever in the area give me a shout. Take care and only 41 more days till spring. Mike

Hello Sonsy

I believe the conversion would be as such;

.7 = 70% for example.

Hi sonsy, without your hard copy results it would be guesswork.  Perhaps you could ask your husbands doctor for a hard copy of his recent results, with that you could then check the patient uk spirometry calculator https://patient.info/doctor/spirometry-calculator

Oxygen is prescribed for each patient as may be their individual needs, what may be the required oxygen literage for one patient, won't be the same for the next so its always best to check with your Consultant or the oxygen supplier what your prescribed safe levels are and what would be safe if you turned your husbands up.  Oxygen can be dangerous if not used correctly as prescribed.

If your husband is not doing so well you can access the OT team through your GP they or your GP will be able to advise if your husband could benefit from a pulmonary rehabilitation course, referral can be for those newly diagnosed and again for those who have deconditioned because of ill health, persistent lung infections etc often cause lung patients to decondition as does pneumonia.

Best wishes V

Thank you for replying, unfortunately it is not that as FEC is 1.? . I have used the website given below. Thank you again.

hi Vee2,

Thank you for your reply,I have used the website you posted and have found out the percentage. I was interested in the fact that Mike was able to be so active(ie clearing snow) given his low percentage and was trying to equate to our own situation. My husband has been to PR twice and found it very useful but unfortunately after being hospitalised abroad with severe pneumonia his spirometry results are much lower. We are receiving excellent care from all involved but sometimes only people that are living with this condition can explain clearly the feelings and energy that go with it. Thank you again for your reply and also the details of the website, very helpful .

You are welcomed Sonsy.

Glad you have gained some information that has helped you via the website.

Good luck with everything.

Lill

Hey sonsy, not sure but if you can post those numbers on here I'm sure I could find out. The best I can do is tell you to inspire your husband to stay physically active as thats the key to maintaining any quality of life. It's interesting to speak with folks in the UK and see the different types of care that the countries offer. Here in the US it's difficult with the prices of these pulmonary medicines. I ave to get mine from the UK because there so costly over here. Are there stem cell procedures going on near you? There in the research stage here but not doing anything and probably won't for another decade,as thats my only hope for any type of release from this disease.