Wife trying to understand husbands diagnosis
My husband is 62, works in a lumber mill. Never smoked. 7 years ago he was diagnosed with PMR. 2 years ago COPD, Asthma. He was in hospital almost every month in 2021 for up to 6 days at time. 2022 started ok but in March he got COVID. Almost died to much carbon dioxide . He then spent 4 days in hospital in July, 5 days end August , sent home for 1 day with oxygen tank on 3. He had never been on oxygen. It was 24 hours a day. Gave him major depression. Next day I couldn’t get his pulse ox over 84 even on 3 on tank. He spent 8 more days in hospital after that. In October had another stay in hospital.
He tried Nucala did not help. Now he’s on Dupixent every 2 weeks. Even though he just started it’s made a major difference.
When he’s in hospital he has so many Drs coming in he doesn’t retain what they say. I feel in dark all the time. All I want to do is make him better.
Yesterday he returned from his lung Dr so happy. He gained 17% lung capacity. He’s at 37% now. I had no idea it was that bad. He said he had never been told but I don’t know.
Can someone explain to me lung capacity? I mean obviously 100% is ideal but what has it meant that he’s been walking around at 20%?
Thanks for joining the forum, nice to see that partners (spouses) are interested in learning more to help the other! Great questions. I must say before I respond that I am not a doctor or medical professional of any kind, this is just my thoughts and being a COPD patient also. First of all, to get COPD you do not have to be a smoker, former smoker or even exposed to 2nd hand smoke, that is what the experts say is the #1 cause of most cases. There is many causes, by what you wrote, your husband has asthma, thus could be the start of it all. May I suggest you do a google search or search webmd or mayoclinic they can explain it better then I can. Then with your husbands employment that could have been a source of contributing factors of the COPD. The dirt / dust flying around in the sawmill, breathing in the dirty air his lungs just got tried of fighting it or to weak to continue to fight it off, snuck up on him slowly and made it hard for him to realize, not to mention if outside working around those big machines and their exhaust along with the dirt/dust. These items would have irritated the asthma, causing inflammation in the lungs, thus causing damage eventually. As for the percentage or capacity, your figuring is correct, this is done by several test that they would have done on your husband more then likely at the Doctors office, the testing is called Pulmonary Function Test. I had one many moons ago with hardly any loss. This last one a year ago showed me at 29%. I am on oxygen at 2 liters at night only, but available if needed during the day. Depression, that is common in people that have chronic diseases, hopefully your hubby is getting help for that, usually meds and sometimes talk therapy. Keep in mind he is going through a grieving process for he has lost part of himself and so many chances to what he could do compared to what he can do now. Please also keep in mind that you to can suffer from the same as you see him change, if you notice you are getting a little overwhelmed and feeling depressed, please chat with your doctor about it too! Something I strongly suggest is go with him to his next appointment and go in the room with him if he will let you, ask his medical care team questions and care tips, even make a list to keep you on track, take notes etc.. It would be helpful for both of you. There even could be dietary changes that you can discuss or search on the internet for to help with what might trigger another attack. I so hope you will keep us posted and seek us out if you are even just needing to talk or vent. Best to you, Doris This is amazing feedback. I couldn't have said it better myself! Thank you for taking the time to share your wisdom and tips, it's what makes this community great. 😀 -Melissa, copd.net team
Thank you I will try and laugh everyday!
Hi
! I know this can be scary for you as well but know that you are not alone. We have many spouses and caregivers on this site with lots of great tips and experience. It looks like you got some great answers above, so I won't address all but will ask if they have tested your husband for Alpha 1. This is a genetic liver disorder that can lead to lung and/or liver disease. This is what I have. If so, he could get other treatments. It's good to hear that his lung function has improved. Please message me if you have questions. Here is an article that talks more about Alpha 1 if you are interested. https://copd.net/living/tested. Best, Jackie (Moderator)
