Still confused about COPD

Hey everyone. I am still perplexed about my weird lung symptoms. I recently failed another lung function test with an FEV1 of barely 50 percent. It was a bad day. I was sick from one of my other illnesses and puking, so I don't know how that played into the whole test. The lung doc said I need to start Stioloto again and I disagree as I am not out of breath. It's more of feeling oxygen starvation for me than it is huffing and puffing. I have one doc who claims my lungs are good because I blew one FEV1 of 73 a few months ago, and this particular doc has me in bad shape. I had purchased a home FEV1 tester and I was able to blow FEV1's all over the map one day; but never above a 70 percent, and most were FEV1's of 2.80, just like I blow during all of my lung function tests. I did a 6 minute walk test and my oxygen dipped down to 91 for 10 seconds half way through the test, then we stopped and it went back up to 96. I don't know what this means, but they said it was fine. My heart rate can go up to 150 BPM at times from walking, depending on how fast I walk. If I could have walked faster, they would have seen more. I can't walk fast as my right leg is damaged from chronic blood clots. Just walking for 6 minutes made my leg swell and I was in pain for three days after that. So, pushing it even more would have made me have to double up on my daily allotment of pain meds. I'm seriously considering getting a third opinion just to be sure. I was a smoker for 15 years and grew up for 20 years in a smoke filled house. My grandmother died of COPD and my aunt died very young of COPD, but she smoked 3 packs a day. I'm barely 40. I just don't know what to believe because my HRCT scan was completely normal, and my chest X-Ray was completely normal. I don't see how you can have moderate/severe COPD with normal looking lungs. I can tell you that before I stopped smoking, I did have a lot of coughing spells and lung infections. Some of them lasting for up to 8 weeks at a time. Any how, I wish I knew what was going on. I still have some Stiolto left over. I don't feel the need to take it though. But the nurse said I need to use it even when I feel good, because it will help preserve what lung function I have left. Does this make any sense? Thanks for any advice you can offer me. I hope you are all having a good weekend.

J

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  • Please forgive my bad typing skills. I'm not going to go back and correct it this time. I also suffered massive blood clots in my lungs 5 years ago that some how contributes to all of this. My lungs are free of clots now as per the HRCT and a CTPA. I asked the doc if it could be micro-clots that are not seen on tests and they said my lungs would hurt if that was the case. My lungs never hurt with the first set of blood clots, so who knows. I just thought COPD shows up on the lungs. I did have some scarring on my lungs 3 years ago, but the last HRCT did not note them. I think they only scanned a very small part of my lungs though at the base last time. It was a low dose CT scan, so maybe they missed something? I can tell you one thing, I'm all done with CT scans for a long time, as I have already had three of them in the last five years and one VQ scan. The VQ scan showed normal lungs, when if I would have had severe COPD, there should have been ventilation defects seen. I also have a really low DLCO at 49. That has been checked twice. I know you can't fake a low DLCO. They just say it is COPD. I'm still confused though.

  • Is your doctor a pulmonoligist? Sounds like you do have COOD issues that need to be addressed! Good luck!!

  • Papatony, I actually live 3 miles from the beach at my moms house. Maybe that has a lot to do with me feeling better sometimes. I rarely go out due to having chronic pain, but the beach is nice. If I didn't have a bum leg, I would go out more and maybe go to the beach as it can be quite therapeutic. I hope you and your hubby feel better. Balance problems are no fun.

  • Yes, see another Doctor to get another test your 96 sounds great.

  • i have copd what helps me is being near the sea and riding my motor bike in rural areas with an open face helmet ! years ago they sent you on a long sea voyage to clean your lungs out, diet and exercise even at a slow pace, loosing weight is a good idea my lungs have improved i was originally moderate to severe now sitting exactly on mild to moderate 80% lung capacity avoid toxic people and situations when possible !

  • The ocean is my serenity! Wonder if Medicare would pay for a cottage on beach😘😜😝. I have stage 3 COPD plus lung cancer. We live about 30-45 minutes from st Augustine beach fl but I can't drive right now and my husbands balance keeps him pretty immobile. We do pretty good but miss being more active!!

  • Hi Blizzard2014;

    It's very important that you take your Stiolto and and any other inhalers you are on. the nurse is right it will preserve what lung function you do have. Don't worry about the numbers go by how you feel and make the most of every day, If you aren't already seeing pulmonary doctor then see one. I'm trusting you are on a blood thinner, have you seen a doctor in vascular for the leg? If not I think you should.

    Trying doing pursed lips breathing when you are feeling out of oxygen, you could be retaining co2 and this will help get rid of it. Your numbers don't look that bad to me,compared to what others I have spoke with have.

    When I did my first 6 minute walk test I went below 88 right off so the cut the test short, recently when I did the 6 minute walk test my oxygen was at 94 but my A Fib was out of control and my heart was not good either, so this test isn't used just for lungs. I was told because of the A fib and heart I have to be on liquid oxygen all the time. I was also told that because my oxygen was at 94 it means that I have oxygen in the lungs but I can't get it out. So I guess one is as bad as the other.

    Hang in there, Don't give up make the of every day.

  • this is not a test you pass or fail. this gives your doc the results of your condition. i would give anything to have a 96 % I am very severe at 26 %. go to pulmonary rehab and educate your self...it's a life time project.

  • 96 was my oxygen level. My actual lung function is 50 percent. My DLCO is 49 percent. My oxygen just bounced back from 91 to 96 at the end of the 6 minute walking test. I just get frustrated because one doc tells me I'm fine and another has me dying. I only wonder because my lungs look good under HRCT scan. The only thing I have had with lungs is a 3 months long chest infection in 2009 back when I smoked and massive blood clots in 2012. That is it. I still blow between a 46 and 73 FEV1 on most tests and my FVC was 43 percent. My DLCO remains 49 percent. It's just weird to have all of these bad numbers with normal looking lungs unless the HRCT scan missed something.

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