I'm not very impressed, to start off.
Last year in April I got very sick. I was told I had pneumonia. I was first put on oral antibiotics, then home IV treatment, then hospitalized since the other two didn't work.
I was 'ok' for a little while. I was not 100%, that's for sure. I ended up having to quit my job (I worked in a call center) because daily tasks where taking a huge toll on me. I continued on, and then again, around April this year, I got very very sick again. They told me it was pneumonia again, and the same cyle started over again. First Oral antibiotics for some time, and they didn't work. So they used a PICC line and placed me on home IV again. After the IV course, I seemed 'better'. Again, not close to 100%. The PICC line was taken out and I was sent on my way. About a month later, I got sick again. I went into my appointment but my regular CF doctor wasn't around so they brought in an infectious disease doctor whom I've never met with before to take a look at my xrays. He looked at them for awhile and came back and said it looks like pneumonia still. I then asked him where the pneumonia was (since I never get to see my xrays anymore) informed him that area he was looking at was a deflated lobe, which should be in my file, since they found that out years ago.
He looked surprised but seemed to blow off what I told him. He then said that the area around the lobe is "puffy" and that the pneumonia was around the lobe. He put me on an oral antibiotic I had never been on before and, sent me on my way.
A week later they called me and told me my sputum test came back and I have pseudomonas. Not going to lie, I was never 100% positive what that even was, just that I had been taking TOBI for years to prevent me from getting it.
I tried asking what that meant (is it contagious, can I get rid of it) and I didn't get any answers. They just told me to take the antibiotics for an extra week, and if I get worse, call.
Well, again, after the antibiotic I got ok. I had issues catching my breath after walking a few feet, I had a new cough I never had before that never went away, and I had a hard time sleeping at night because I'd wake up gasping for air.
But I assumed it was just because I was out of shape, and that I needed to exercise more to try and get my lung function up correctly (that's what I was told). So I started walking, and trying small forms of exercise. My masks and flutter valve where upped to three times a day. I seemed ok, minus the above mentioned problems. So I finally got another job.
I've been working there for about 3 weeks. A cold was going around the place, and I caught it within days of people getting sick. I then got worse and worse. Unable to get a hold of my clinic (because getting a hold of anybody is like finding a needle in a haystack) I went to the ER about 3 days ago. They then cried 'pneumonia' and low and behold, I'm back on the same oral antibiotics. I've tried calling my clinic but I can't get a hold of anyone. I leave messages, and never get calls back. Or when i do get a hold of someone, I get told my doctor won't be in for a few months and if I'm really bad I should go to the ER...
I've been taking this antibiotic for a few days and I've gotten worse. When I cough, I honestly sound like a snarling dog, and I run out of breath just by standing up. Something is seriously wrong here. Either I have some type of pneumonia that can't be cured, I somehow keep catching it over and over again, or I'm being misdiagnosed.
I'm debating asking for a referral to another clinic. I'm even willing to drive 6hours to Toronto if it means I can figure out what is going on.
Before last april, I hadn't been hospitalized or sick since I was 14. I'm 21 now.
It feels like I'm just being told pneumonia over and over because that's what they see I had.
I'm sorry if this seems to go on and on, I'm just angry. I'm sick, I'm not getting better, and I'm not getting answers.
As far as I can tell, all my stats are fine. But then again, that's what I've been told. I don't actually get to see any of my test results, or any of my xrays. So I haven't seen anything.
So apparently I'm fine...but I'm sick. I am very confused.
Last year in April I got very sick. I was told I had pneumonia. I was first put on oral antibiotics, then home IV treatment, then hospitalized since the other two didn't work.
I was 'ok' for a little while. I was not 100%, that's for sure. I ended up having to quit my job (I worked in a call center) because daily tasks where taking a huge toll on me. I continued on, and then again, around April this year, I got very very sick again. They told me it was pneumonia again, and the same cyle started over again. First Oral antibiotics for some time, and they didn't work. So they used a PICC line and placed me on home IV again. After the IV course, I seemed 'better'. Again, not close to 100%. The PICC line was taken out and I was sent on my way. About a month later, I got sick again. I went into my appointment but my regular CF doctor wasn't around so they brought in an infectious disease doctor whom I've never met with before to take a look at my xrays. He looked at them for awhile and came back and said it looks like pneumonia still. I then asked him where the pneumonia was (since I never get to see my xrays anymore) informed him that area he was looking at was a deflated lobe, which should be in my file, since they found that out years ago.
He looked surprised but seemed to blow off what I told him. He then said that the area around the lobe is "puffy" and that the pneumonia was around the lobe. He put me on an oral antibiotic I had never been on before and, sent me on my way.
A week later they called me and told me my sputum test came back and I have pseudomonas. Not going to lie, I was never 100% positive what that even was, just that I had been taking TOBI for years to prevent me from getting it.
I tried asking what that meant (is it contagious, can I get rid of it) and I didn't get any answers. They just told me to take the antibiotics for an extra week, and if I get worse, call.
Well, again, after the antibiotic I got ok. I had issues catching my breath after walking a few feet, I had a new cough I never had before that never went away, and I had a hard time sleeping at night because I'd wake up gasping for air.
But I assumed it was just because I was out of shape, and that I needed to exercise more to try and get my lung function up correctly (that's what I was told). So I started walking, and trying small forms of exercise. My masks and flutter valve where upped to three times a day. I seemed ok, minus the above mentioned problems. So I finally got another job.
I've been working there for about 3 weeks. A cold was going around the place, and I caught it within days of people getting sick. I then got worse and worse. Unable to get a hold of my clinic (because getting a hold of anybody is like finding a needle in a haystack) I went to the ER about 3 days ago. They then cried 'pneumonia' and low and behold, I'm back on the same oral antibiotics. I've tried calling my clinic but I can't get a hold of anyone. I leave messages, and never get calls back. Or when i do get a hold of someone, I get told my doctor won't be in for a few months and if I'm really bad I should go to the ER...
I've been taking this antibiotic for a few days and I've gotten worse. When I cough, I honestly sound like a snarling dog, and I run out of breath just by standing up. Something is seriously wrong here. Either I have some type of pneumonia that can't be cured, I somehow keep catching it over and over again, or I'm being misdiagnosed.
I'm debating asking for a referral to another clinic. I'm even willing to drive 6hours to Toronto if it means I can figure out what is going on.
Before last april, I hadn't been hospitalized or sick since I was 14. I'm 21 now.
It feels like I'm just being told pneumonia over and over because that's what they see I had.
I'm sorry if this seems to go on and on, I'm just angry. I'm sick, I'm not getting better, and I'm not getting answers.
As far as I can tell, all my stats are fine. But then again, that's what I've been told. I don't actually get to see any of my test results, or any of my xrays. So I haven't seen anything.
So apparently I'm fine...but I'm sick. I am very confused.