Last week I felt like my lungs were a little extra soupy but wasnt too overly concerned as this is common and I didnt feel like antibiotics or anything were necessary as it didnt seem out of the norm. I had PFT's on Monday which were decreased to 44% but it was just a nurse visit for the tests so I didnt voice any concern. I am always pretty worn out after PFT's but was really extra beat after this weeks. I am already on 24/7 supplemental oxygen and maintain well on 4 liters but couldnt get my stats above 90 that night which has continued as well as not being able to keep my heart rate below120-130. My breathing is rough...cant seem to move the air past the junk in my lungs and cant get a satisfying breath. Ive been extremely light headed and feverish with chills that have lasted a couple days where I begin to feel as if im going to pass out and have to sit down for a while. I had another hemoptysis episode 2 nights ago and have lost another 5 pounds within the last week and have decreased appetite with low energy. And when I get a some what normal meal down it comes back out just as fast. I am new to most of this, not the infection part by any means but more so the digestive aspect and severity of my symptoms. I do go back to clinic on Tuesday for a scheduled bronchoscope with BAL so am not sure if I should call the office pior with my concerns or just mention them on Tuesday?? The weight loss isnt new and I do naturally have a slightly increased heart rate due to a right to left shunt in my heart but can normaly manage it. I just feel totally beat and normally I notice some symptoms meaning I have an infection and typically need antibiotics but this isnt as typical and im so worn out. Any suggestions would be greatly appreciated. Thanks so much for taking the time to read.
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Symptoms-concerned
- Thread starter muchlove
- Start date
Last week I felt like my lungs were a little extra soupy but wasnt too overly concerned as this is common and I didnt feel like antibiotics or anything were necessary as it didnt seem out of the norm. I had PFT's on Monday which were decreased to 44% but it was just a nurse visit for the tests so I didnt voice any concern. I am always pretty worn out after PFT's but was really extra beat after this weeks. I am already on 24/7 supplemental oxygen and maintain well on 4 liters but couldnt get my stats above 90 that night which has continued as well as not being able to keep my heart rate below120-130. My breathing is rough...cant seem to move the air past the junk in my lungs and cant get a satisfying breath. Ive been extremely light headed and feverish with chills that have lasted a couple days where I begin to feel as if im going to pass out and have to sit down for a while. I had another hemoptysis episode 2 nights ago and have lost another 5 pounds within the last week and have decreased appetite with low energy. And when I get a some what normal meal down it comes back out just as fast. I am new to most of this, not the infection part by any means but more so the digestive aspect and severity of my symptoms. I do go back to clinic on Tuesday for a scheduled bronchoscope with BAL so am not sure if I should call the office pior with my concerns or just mention them on Tuesday?? The weight loss isnt new and I do naturally have a slightly increased heart rate due to a right to left shunt in my heart but can normaly manage it. I just feel totally beat and normally I notice some symptoms meaning I have an infection and typically need antibiotics but this isnt as typical and im so worn out. Any suggestions would be greatly appreciated. Thanks so much for taking the time to read.
TreasureGoddess
Member
Muchlove, can you call into your cf center with your concerns? I'd say don't wait until Tuesday to be seen. If things don't feel right, your body is telling you something is different. It may be that you just need to start on antibiotics right away, but waiting another 5 days probably won't help anything. Good luck!
Christine
Christine
TreasureGoddess
Member
Muchlove, can you call into your cf center with your concerns? I'd say don't wait until Tuesday to be seen. If things don't feel right, your body is telling you something is different. It may be that you just need to start on antibiotics right away, but waiting another 5 days probably won't help anything. Good luck!
Christine
Christine
Mallymookcf
New member
Oh I sooo feel for you! Us "cf-ers" know that misery! I just wanted to say that I am praying for you, and I do agree the sooner you let the docs know the sooner a treatment plan can be done.. Hugs!! Feel better!!
Mallymookcf
New member
Oh I sooo feel for you! Us "cf-ers" know that misery! I just wanted to say that I am praying for you, and I do agree the sooner you let the docs know the sooner a treatment plan can be done.. Hugs!! Feel better!!
Have you grown anything new on your sputum cultures? Before I found out that I had MRSA, I was having infections that didn't feel "normal" to me. In other words, they didn't present the way my PA infections did.
Finding out that I had MRSA was almost a relief in the sense that I had a name for feeling differently, but it sucks now because every time I have a PA infection, the MRSA flares up. The MRSA also kicks the PA into action, too, often coming first (validated by symptoms and sputum cultures). I know that some people only culture MRSA and don't get sick from it, but it seems to have picked out a plot of land in my lungs and settled in.
Finding out that I had MRSA was almost a relief in the sense that I had a name for feeling differently, but it sucks now because every time I have a PA infection, the MRSA flares up. The MRSA also kicks the PA into action, too, often coming first (validated by symptoms and sputum cultures). I know that some people only culture MRSA and don't get sick from it, but it seems to have picked out a plot of land in my lungs and settled in.
Have you grown anything new on your sputum cultures? Before I found out that I had MRSA, I was having infections that didn't feel "normal" to me. In other words, they didn't present the way my PA infections did.
Finding out that I had MRSA was almost a relief in the sense that I had a name for feeling differently, but it sucks now because every time I have a PA infection, the MRSA flares up. The MRSA also kicks the PA into action, too, often coming first (validated by symptoms and sputum cultures). I know that some people only culture MRSA and don't get sick from it, but it seems to have picked out a plot of land in my lungs and settled in.
Finding out that I had MRSA was almost a relief in the sense that I had a name for feeling differently, but it sucks now because every time I have a PA infection, the MRSA flares up. The MRSA also kicks the PA into action, too, often coming first (validated by symptoms and sputum cultures). I know that some people only culture MRSA and don't get sick from it, but it seems to have picked out a plot of land in my lungs and settled in.
They did a culture with my bronchoscopy but I havent heard anything back yet. I follow up mid June. They did put me on Levaquin for an infection though. While I was in the hospital I coded 3 times for my heart which they said was contributing some to my lung symptoms as well. Ive been on supplemental oxygen for a while and they said that has to do with the heart and lungs. My body is having trouble compensating and keeping up with whatever is going on. I went home on a lot more meds than I went in on. Hopefully with all my follow ups we'll get something figured out to get me back "healthy" again. My FEV1 is down to 37%. Im getting a bit scared which doesnt typically happen. But I really appreciate the input. Ill be sure to ask about the culture.
They did a culture with my bronchoscopy but I havent heard anything back yet. I follow up mid June. They did put me on Levaquin for an infection though. While I was in the hospital I coded 3 times for my heart which they said was contributing some to my lung symptoms as well. Ive been on supplemental oxygen for a while and they said that has to do with the heart and lungs. My body is having trouble compensating and keeping up with whatever is going on. I went home on a lot more meds than I went in on. Hopefully with all my follow ups we'll get something figured out to get me back "healthy" again. My FEV1 is down to 37%. Im getting a bit scared which doesnt typically happen. But I really appreciate the input. Ill be sure to ask about the culture.