COPD/ Emphysema

Posted by redsox @redsox, May 29, 2018

Confused by PFT so much to absorb ! What are the treatments for Mild, Moderate and Severe .

@bb729 – If these symptoms have come on suddenly than I would call the doctor and see if he has gotten the radiologist's report yet. Have you told your doctor about this sudden change? I've been having CT scans for 22 years and still can't figure everything out. If possible we don't usually post personal information because we are not professional medical people and can not help with reading labs and tests or give you a prognosis. What medicines have you been on?

Liked by bb729

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Thanks for the reply. I know folks on here are not docs but thought maybe someone else may have had the same type(s) of things noted. The post I provided was the report from a few days ago and they compared it to Oct 2015. The doctor hasn't called back so I figured I'd reach out the members for their take. I was taking Tudorza and Symbicort which I went back to recently. My pulmonologist had me try Trelegy which looking back is when things started going down hill. I have taken Spiriva and Advair in the past but when I fall in the gap I need to switch to Tudorza and Symbicort (both AZ medications) because I meet their income guidelines for PAP and with GSK I don't. Medications for COPD are out of control and I've been on them for over 10 years. One thing that was in my retirement plan. Add to that uncontrolled diabetes for 7 years, a heart attack and UC what more could a guy ask for ?? 🙂

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I must make a correction "One thing that was in my retirement plan " Should read was NOT in my retirement plan.

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@bb729

Thanks for the reply. I know folks on here are not docs but thought maybe someone else may have had the same type(s) of things noted. The post I provided was the report from a few days ago and they compared it to Oct 2015. The doctor hasn't called back so I figured I'd reach out the members for their take. I was taking Tudorza and Symbicort which I went back to recently. My pulmonologist had me try Trelegy which looking back is when things started going down hill. I have taken Spiriva and Advair in the past but when I fall in the gap I need to switch to Tudorza and Symbicort (both AZ medications) because I meet their income guidelines for PAP and with GSK I don't. Medications for COPD are out of control and I've been on them for over 10 years. One thing that was in my retirement plan. Add to that uncontrolled diabetes for 7 years, a heart attack and UC what more could a guy ask for ?? 🙂

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@bb729– I'm so sorry that you are dealing with all of this. It can certainly be discouraging and frightening. My pulmonologist has recently put me on Trelegy and I love it and it has made a very big difference. I'm dealing with lung cancer, emphysema and COPD. I hope that you scan doesn't have any surprises and that going back on Tudorza is helping once again. I'm not sure what you mean by medications for COPD are out of control. Would you mind explaining? If you answer me, or others would you mind putting @ before their sign in name so that I can keep track of who is talking to whom? Thanks

Liked by jo54

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@bb729

Thanks for the reply. I know folks on here are not docs but thought maybe someone else may have had the same type(s) of things noted. The post I provided was the report from a few days ago and they compared it to Oct 2015. The doctor hasn't called back so I figured I'd reach out the members for their take. I was taking Tudorza and Symbicort which I went back to recently. My pulmonologist had me try Trelegy which looking back is when things started going down hill. I have taken Spiriva and Advair in the past but when I fall in the gap I need to switch to Tudorza and Symbicort (both AZ medications) because I meet their income guidelines for PAP and with GSK I don't. Medications for COPD are out of control and I've been on them for over 10 years. One thing that was in my retirement plan. Add to that uncontrolled diabetes for 7 years, a heart attack and UC what more could a guy ask for ?? 🙂

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bb729 For 10 years I have gotten my drugs from http://www.alldaychemist.com at about 30% of USA cost.

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@jgpolachek

bb729 For 10 years I have gotten my drugs from http://www.alldaychemist.com at about 30% of USA cost.

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@jgpolachek– Good morning. I would just like to remind you that Mayo Connect is a public forum and things that you buy for personal use maybe would be better put in a private message to someone. Thank you for your information.

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@blueheeler309

Hello Colleen, I am not sure I am posting correctly, I asked a question and no one seemed to notice it, or maybe it takes quite a while on here I am not yet familiar. I had a diagnosis of COPD emphysema the entire story is too long to insert here. Last week at a routine visit to my pulmonary Dr. my spiro went to 29 which I am told is critical. I was given the walk test and dropped to 88 rather rapidly. He gave me the order of oxygen 24/7 which I had only been using it at night. With a chest wall surgery in the past that left my lung herniated and then herniation repair surgery I am wondering if my surgical mesh could be causing issues since I went from okay for some length of time to critical,the last time I saw pulmonary in Mayo they about partially paralyzed diaphragm but I balked at the ENG test being performed on my diaphragm. I am now ready to submit to that test to see if that could be part of my problem. I plan to call mayo or send a message via portal to my pulmonary Dr. on Monday. Anyone have words of advice, I feel pretty at sea to be put on oxygen 24/7 I am not yet 60 and never smoked. Any advice would be appreciated.

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Hi , girlbybay here, I think all the chest wall surgery positively affects how you perform on a pulmonary test…..

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@girlbybay thank you for responding to @blueheeler309’s inquiry about chest wall surgery.

I would like to take this time to check in on you both as well as some other members who have taken part in this conversation on COPD and emphysema.

@girlbybay, how are your COPD symptoms? Have you been able to manage them well?

@blueheeler309, did you end up having the surgery? How have you been feeling?

@bb729, have you been able to make the switch to tudorza and Symbicort? If so, have you had any side effects?

@waterboy, how are you treatments, the three nebulizers, 2L of O2 and an antibiotic affecting you? Are you experiencing side effects at all?

@gypsyinthehood, how is your husband? Have you been able to find a medication that your husband isn’t sensitive to?

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@ethanmcconkey I haven't been receiving any post lately wondering if they sight is down or just not much going on? I usually would receive multiple emails a day

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@bb729

@ethanmcconkey I haven't been receiving any post lately wondering if they sight is down or just not much going on? I usually would receive multiple emails a day

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Hi @bb729, I checked your settings and you are still subscribed to receive email notifications when a new post is made. I wonder if your Connect-related emails are being sent to your junk mail or spam folder. Have you checked your spam folder?

I also recommend adding Connect's sender address "@n1.hubapplication.com" to your safe senders list in your email. You can google how to do this for Gmail, Hotmail, Outlook, etc. Let me know if you have any questions.

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Just had a PFT and Oxygen Titration test on the 18th floor Gonda desk G yesterday, 8/21/19. PFT I watch Fv1 more than anything else, then ask questions to my pulmonologist and have him explain the rest. I also watch the change after medication, this will give you a good idea if medication of your symptoms will help. The OT is done on a treadmill and I stayed above 88%

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@ethanmcconkey

Hi @bb729, I checked your settings and you are still subscribed to receive email notifications when a new post is made. I wonder if your Connect-related emails are being sent to your junk mail or spam folder. Have you checked your spam folder?

I also recommend adding Connect's sender address "@n1.hubapplication.com" to your safe senders list in your email. You can google how to do this for Gmail, Hotmail, Outlook, etc. Let me know if you have any questions.

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@ethanmcconkey Thank you. I do have a question for the group. Has anyone tried a salt inhaler with Himalayan Pink Salt? If so how did it go? Still using it?

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do you need a script for a salt inhaler?

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@joelars

do you need a script for a salt inhaler?

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@joelars I don't think you need a prescription for a salt inhaler since you can easily purchase them on Amazon but you still might want to run it by your doctor to see if their might be any other problems with any treatments or prescriptions you are currently using. Here's some information that may be helpful.

Lung Institute – Salt Therapy and COPD
https://lunginstitute.com/blog/salt-therapy-and-copd/

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@joelars– I know that you are frustrated but I agree with @johnbishop that you should check with your doctor to see if you should even try a salt inhaler. There might be other things going on that would be irritating, and you don't need that at all. Have you decided anything about this as yet?

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