New to COPD

By DiDi2

1 min read

I was diagnosed about 6 months ago. I didn't have a lot of problems at first. Then I started getting a fever and headaches. This went on for about 10 days and I went to the Emergency room. They admitted me. Diagnosis 1. Acute respiratory failure with hypoxia 2. COPD exacerbation. They kept me for 5 days. I have been home one week. Seems like I am not getting well very quickly.

How do you cope?

I am doing all the breathing treatments and exercises. I can't sleep at night more than a few hours. I am still on the steroids and weaning off. I am not on oxygen and do pretty well. 88 most of the time. Drops in the AM to 70's, but I can bring it up with exercises. My doctor is not much help. I get depressed because I watched my Dad die from this. And I could not do much. It seems like we are on our own. I just would like to know how others deal with this.

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Leon Lebowitz, RRT Member
Hi <inline-mention username="DiDi2" user-id="6689693"/>, and thanks for your post. I hear you! While I am hopeful others in the community will see your inquiry and chime in by sharing their own personal anecdotal experiences, I have something to contribute as well. You may be aware you were admitted with two significant diagnoses. Either diagnosis by itself would be formidable but, together - well that is challenging! Try to be kind with yourself and, somewhat patient. It can take a considerable period of time to 'bounce back' from treatment of both acute respiratory failure and a COPD exacerbation. The fact that you are expected to carry out continued treatment at home is good evidence of that. I am glad to hear that you are being compliant with all your therapy and medication regimen in the house - that is good! However, if you are somewhat concerned about your recovery process, you may want to keep in closer contact with your private physician. This is not something that should be treated lightly. You are the best judge of how you're feeling and you know your body best. By any standards, a regular oxygen saturation level of 88% with sporadic drops to the 70% range, may be cause for concern. It's disheartening (for me), to hear that your doctor is not much help. This is the time that the doctor should be monitoring you more closely, having recently been discharged from the hospital to the home setting. This may be the time to be your own best self advocate. Do you have a support system at home of family and/or friends? If so, perhaps they can be of assistance to you. If not, and you are not satisfied with your physician, you may want to see out another, more compassionate and understanding doctor. Please stay acutely aware of your condition and improvement at home. If, for any reason, you feel you are not doing well, it would be a good time to reach out for some help. What do you think? Leon (site moderator <a href='http://COPD.net' target='_blank'>COPD.net</a>)
Jackie English Moderator & Contributor
Hello, <inline-mention username="DiDi2" user-id="6689693"/> ! It sounds like you have a lot going on. First of all, is the 88 at rest all of the time or only after this exasperation? Second, is the 70s in the am just since exasperation also? This is probably the reason for your headaches, and not getting enough oxygen. You qualify for oxygen at 88 and need a six-minute walk test to see if you qualify for oxygen. You are doing damage to your body and brain if it's not getting an adequate amount (above 88- some Drs say 90). Some doctors see you in the office after you have sat there for a few minutes and have recovered so they think your oxygen is fine. You must advocate for yourself to get this done. If your doctor won't do it you need to find a new one. Also if you are at 70 in the AM you need an overnight sleep study to determine if you need oxygen and/or CPAP to sleep. I needed oxygen at sleep before I needed it during the day. I have been on oxygen now for 12 years and I know I wouldn't be here today if it wasn't for the oxygen. Here is a great article that explains when oxygen is needed. I think you will find this helpful. <a href='https://copd.net/living/oxygen-levels-supplemental' target='_blank'>https://copd.net/living/oxygen-levels-supplemental</a>. I'm also curious if you or your dad have been tested for Alpha 1. If you have never heard of it, it is a genetic disorder that can cause COPD. This is the reason why I have COPD. Feel free to message me for more information or you can go to The Alpha 1 Foundation website for more information. I will post one of my articles below on Alpha 1. I hope you will contact your doctor immediately to get this walk test done. Please keep us updated. Best, Jackie (Moderator)
1. Jackie English Moderator & Contributor
 Hello again, <inline-mention username="DiDi2" user-id="6689693"/> If you are interested, here is an article that talks about Alpha 1-https://copd.net/living/alpha-1-awareness-month.
DiDi2 Member
Since I wrote this original post. I went to my doctor and she did a 1 minute test and my number was 88 and she said I did not qualify for oxygen. 5 days later I was in the ER again because my levels went into the 70's at night. They put me on oxygen, I have been on it for well over a week now and I get better every day. But when I take the oxygen off it drops to 60-70's. I don see a specialist on the 12th of Jan. Pray that he helps me.
1. Leon Lebowitz, RRT Member
 <inline-mention username="DiDi2" user-id="6689693"/> Hi again, DiDi, and thanks for providing us with the update. I am glad to hear you were tested but, it is not clear why or how a doctor would dismiss the oxygen saturation level of 88% as not qualifying for oxygen. I find that to be somewhat concerning, especially since the test was done of only one minute. We actually have an excellent reference here which focuses on 'qualifying of oxygen therapy'. If you have an opportunity, you may want to read it and, if necessary, share it with your medical team. Here is a link to that article: https://copd.net/living/qualifying-home-oxygen. I will wish you 'good luck!' at your upcoming visit with the pulmonologist on January 12 in the new year. I am hopeful, the specialist will be able to clarify this and order the therapy that you appear to be in need of. Please do check back and keep us apprised of your progress going forward. All the best, Leon (site moderator <a href='http://COPD.net' target='_blank'>COPD.net</a>)
2. SueGodbey Member
 <inline-mention username="DiDi2" user-id="6689693"/> 🙏🙏you are off to a good start
heuchera Member
 The first thing you need is a new pulmonologist. Your oxygen levels are quite low and indicate you should be on oxygen.
1. DiDi2 Member
 <inline-mention username="heuchera" user-id="2456956"/> I now am on oxygen 24/7. Originally it was to be at night only, but I can't go without it.
SueGodbey Member
I felt the same way, I finally took a stand, they treated me for an exasperation for almost year with steroids and antibiotics when I kept telling them it was not an exasperation, finally i ended up in the hospital and found out it was from allergies and a cold. meanwhile i gained 60 pounds from the steroids only to find out its very hard to lose while they are telling me to. I am active, i have stage 3, no oxygen, I workout most of the time and this year I was just straight up with my doctor and refused to leave the office until i got an answer or referred to new doctor. please try to find a new doctor there are good ones out there. I hope that everything works out for you.
1. DiDi2 Member
 <inline-mention username="SueGodbey" user-id="4556249"/> I have my appointment friday Jan 13th with the specialist. I have made a list of ongoing problems. I hope he will listen and help me. I am afraid that he won't. So far the only place they listened was in ER. My regular doctor did not. Where we live we have very limited choice of doctors. And I only have medicare/Humana. I feel like the medical system has let me down. My list of problems is long and i need answers. Wish me luck! I need it! Thank you!
2. SueGodbey Member
 <inline-mention username="DiDi2" user-id="6689693"/> Im praying you will get your answers, just make sure you do not leave the office without the answers to your questions that is what the doctors get paid to do, make them work for their money and your health. Good Luck and please keep us posted. oh please make sure they put you on oxygen, 88 is way to low, should be in the 90's but some doctors say 88-96 range.
gadget Member
DiDi2. I will be praying for you!
njbrandt Member
When I was first diagnosed I felt the same way, so I asked my doctor for a referral to a pulmonologist. My family doctor knew nothing and couldn’t explain anything to me. With the referral I ended up with a fabulous Nurse Practitioner that rocks! She gave me detailed information about my test results, showed me my lungs so I could see my disease, and seems to know how to put me at ease. I hope you can find the same.
1. Melissa.Arnold Community Admin
 <inline-mention username="njbrandt" user-id="2457222"/> What a gift! Nurse practitioners and physician assistants (PAs) can be really wonderful parts of a healthcare team! They are so committed to helping you understand your health needs. So glad you have a great provider, thanks for sharing. -Melissa, <a href='http://copd.net' target='_blank'>copd.net</a> team

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