Mayo Clinic Connect
I had two hospital stays in 6 weeks. This was my first time. Sent home with O2 only at night. Seems like it is taking a while to get my energy. How long do the exasperation take before the inflammation is down and you feel better?
Liked by Merry, Volunteer Mentor
Hi @marley1 and welcome. Did you have 2 exacerbations in 6 weeks, each requiring you to be admitted to hospital? According to the American Thoracic Society, it can take a month or longer to recover completely. See more here:
Do you know what caused the exacerbation?
Liked by Merry, Volunteer Mentor, alamogal635
It can take time. Everyone heals differently. Did you finish your antibiotics? Are you on a steroid? Each day it will get a little better. Remember to keep moving. Your energy will come back- just be patient. Eat healthy fruits/veggies and drink water. 😊
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Hi Colleen, yes it was two times in 6 weeks. It was my first experience. They said they thought it was caused by anxiety and I had a panic attack. First time with panic attack and I thought I was having a heart attack. Thanks so much for the quick reply. I am getting better every day!
Liked by Colleen Young, Connect Director, Merry, Volunteer Mentor, alamogal635
@marley1– I would also like to welcome you to Mayo Connect. What an excellent question. The exacerbation can take a toll on your lungs (it's inflammation) and it can take a while to heal. It looks like you are seeing this yourself.
What symptoms did you have that put you in the hospital? Have you had COPD for a while?
Liked by Colleen Young, Connect Director, alamogal635
Yikes! Twice in 6 weeks. Same happened to me. They sent me home from rehab after couple days in ICU and a few in regular hospital care. Then on to rehab for 4 days and then home. I was home for a couple of days with oxygen and then second exacerbation. Back to ICU for couple of days (along with last rights) and then from one level of care to another in hospital. Back to rehab. I spent a total of 3 1/2 months between rehab and hospital. I was in rehab had issues and ended up back in hospital. This happened several times. It seems I had flu and pneumonia.
How long was each hospital visit for you?
Are you on oxygen at home? – They sent me home with it and doubting if I would ever not need it 24/7. After a few weeks I tried it with no o2 and found my levels to be constantly at 93 to 98. However, I am, by no means, a doctor or even a member of the medical community, other than a patient. So I would certainly consult with Doctor before discontinuing Oxygen.
Have you been prescribed Prednisone? I learned the hard way that it should be taken with food. The folks at the hospital and rehab did not give me Prednisone with food. The result was a GI bleed. Black stool and all. This was at rehab, so back to the hospital we went. After four units of blood they took me to surgery and welded everything shut. Couple days in hospital, back to rehab.
I find myself babbling now. So I will shut up.
However, I do wish you the best. As you see, things do get better.
Liked by Colleen Young, Connect Director, Merry, Volunteer Mentor, migizii
@mrbill– I'm sad that you have had such a rough time. COPD flare-ups (exacerbations) are usually caused by a trigger such as air pollution or allergens, or a chest infection from a virus (cold or flu) or bacteria. And one flare-up often leads to another as both you and @marley1 have discovered. They are dangerous because they inflame the lungs and calming them down can take a long time.
Prednisone without food is a no-no. You bring up a wonderful point. We really need to be vigilant in protecting ourselves even in the hospital. I had the same reaction as you, being given medication without food and wound up vomiting all night after I was released. We need to ask questions about the medicines that are given to us no matter where you are.
One time I was with my sister at the hospital and the person who came in to administer her an inhaler didn't know what she was doing. I had to correct her. We can't be afraid to do this.
How are you doing now? Do you have to be on O2 all the time now?
You absolutely have to be your own advocate when it comes to health care. Ask questions, check medication, etc. I am also taking Zytiga for Cancer treatment. It seems you cannot bring your own meds to hospital. Had a difficult time convincing staff that I absolutely needed this drug. It was between me and further metastasis. Finally at hospital they let me bring it in and was administered by hospital pharmacist. After it took me some time to convince duty nurse I had to take one hour before food.
Even though I was scheduled for nebulizer four times daily, it was hit and miss till I said something.
No I am no longer on o2. Respiratory nurse said I should stay with treatment until I do 6 minute walk. Which I will not do within current environment. Since I left hospital care I do not use nebulizer either. If I felt some type of episode coming on I would use either nebulizer or rescue inhaler. But that has not happened. o2 levels stay between 93 – 98. The did give me an Airlife lung exercise device which I do use twice a day to improve lung capacity. Once again I am only a patient, and because I may do something against doctor's recommendation, it doesn't make it right.
Past experience has taught us a valuable lesson. When in doubt – question. You have to be your own advocate.
@mrbill– Oh, so true about being a self-advocate. The last time I was in the hospital I packed a couple of medications that I might have needed. The Hospitalist was a dingbat and took so long in getting 2 Tylenol for me. I finally told her that I had some and if she didn't order them I'd take them myself. I finally had to take them myself. She was looking to see if it would so something to my blood. I take responsibility for anything that I do regarding y health and this should not be an example of hospital behavior.
It's good to hear that you are off O2 and are monitoring yourself. I use a new inhaler, Trelegy Ellipta. It's made a big difference in my breathing.
It's always good to speak with you. I'm guessing that anything above 90 is safe, even if not optimal for O2 levels?
Yes Merry, I am also taking Trelegy. I just have to be careful that I don't puff out when taking a breath in. I have blown the med out the wrong way a couple of times. 90 seems to be the magical number; even if not the best. I have taken several deep breaths after a low reading and lo and behold it rises a few points.
Marley, there are so many factors regarding how many exacerbations, and how long it takes to heal. As I have stated in other posts I have sever CCPD AND AM ALPHA 1 (MZ), i was just hospitalized for 3 days last month, and was also hospitalized in July. My pulmonologist has me on three nebulizers, one a sterriod, a rescue inhaler, and an antibiotic to try to reduce the number of exacerbations. I go to the ER 4 to 6 times a year. I have been told this is a statistical reality for a MZ, but they aren't as severe or damaging. The one thing you have to remember health care is a team effort….. your care team, you, and your home support makes a huge difference.
Liked by Colleen Young, Connect Director, Merry, Volunteer Mentor
@mrbill– lol, I know what you mean, especially taking it first thing in the morning! I take it on a full stomach. I found that it made me shake. Food helps cut that down, as advised by my pulmonologist.
You have it right on how to raise your O2 level. Relax, sit back, and take several inhales. I've raised mine up quite a bit after exercising by do thing this.
Have you experienced shaking from this or an increase in shaking that you already had?
No problem with shaking. Dr. has me on 5 mg Prednisone . That was prescribed by medical oncologist and goes with Zytiga. Respiratory Doctor at clinic said she would not object to 10 mg. Tried that and had a hard time sleeping. In hospital they had me taking 30 mg. Of course they had these nice little pills that helped you sleep. Only time I was shaking then was when nurse, who ran needles over sandpaper before giving injection, came in.
I started on 15mg for wheezing and congestion (also very winded). It worked great-completely cleared up the wheezing. Now I’m on 10mg- ehhh I have a little congestion and wheezing again, but tolerable. I’m suppose to go to 5mg in a week. I’m scared this will not be strong enough yet I also don’t want to be on prednisone forever. What is this wheezing and congestion about?? Maybe this is gonna never go away. I haven’t been able to go to the hospital for follow up ct scan (I can’t wear a mask) soooo I don’t know. My pulmonologist said maybe it’s allergies- which I would love this to be true but…. unlikely. Nebulizer doesn’t do much for me. I also have this weird thing when I’m about to fall asleep I start to cough. I’m not laying flat.. it’s almost like a gasp. Once I have a “cough attack” I can fall asleep normally. Is it a change in breathing pattern, idk. Anyone else have this?
@mrbill– Hospitals, double-edged swords, eh? I hate needles. A lot of times they hurt and then the nurse won't re-position it thinking that she did a great job. I once had a nurse out a needle in a vein near my tricep because she couldn't find a good vein anywhere else. I had another nurse take it out and put it where it should have gone. I have great veins. lol
So how are you doing in general? What are you doing during the day?
Wow, you really have had a lot in a short time. They sent me home with O2 only at night. They claim that it was caused by a panic attack. Have never had one before so I thought it was my heart. Going to Rehab next week for the first time. Hope you get stronger every day.
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