Need to vent

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anonymous

New member
I have aspergillus too and while it has never given me much trouble a nurse once told me that if it acts up it can be very serious so I should try to stay tuned to my body as possible. We know our bodies best so if you think something is wrong it probably is.

That just sucks your Dr. is a donkey. Since, it's not like you can just move I don't know what to say except I hear your frustration and am sending stomach flu vibes towards your Dr. and his little nurse too.
 
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anonymous

New member
I have aspergillus too and while it has never given me much trouble a nurse once told me that if it acts up it can be very serious so I should try to stay tuned to my body as possible. We know our bodies best so if you think something is wrong it probably is.

That just sucks your Dr. is a donkey. Since, it's not like you can just move I don't know what to say except I hear your frustration and am sending stomach flu vibes towards your Dr. and his little nurse too.
 
A

anonymous

New member
<a target=new class=ftalternatingbarlinklarge href="http://www.aspergillus.man.ac.uk/patients/articles/whatisaspergillus.shtml
">http://www.aspergillus.man.ac.uk/patients/articles/whatisaspergillus.shtml
</a>
Just googled aspergillus - -talks about brownish mucus plugs, treating with anti-fungals....
 
A

anonymous

New member
<a target=new class=ftalternatingbarlinklarge href="http://www.aspergillus.man.ac.uk/patients/articles/whatisaspergillus.shtml
">http://www.aspergillus.man.ac.uk/patients/articles/whatisaspergillus.shtml
</a>
Just googled aspergillus - -talks about brownish mucus plugs, treating with anti-fungals....
 
T

thelizardqueen

New member
Karen - I don't take anything for my anxiety, because I have left it undiagnosed for about 9 years now. I can control it to some extent, but I find it more difficult to do. I know when I'm having an anxiety attack, so I know that my symptoms I'm experiencing now are not anxiety.

Debbie - you're right - my doc can be a donkey sometimes. I'm seeing him on the 23rd, which isn't soon enough for me, so I will tell him that I want the blood test. He can't turn me down I don't think, even if it is for peace of mind.
 
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thelizardqueen

New member
Karen - I don't take anything for my anxiety, because I have left it undiagnosed for about 9 years now. I can control it to some extent, but I find it more difficult to do. I know when I'm having an anxiety attack, so I know that my symptoms I'm experiencing now are not anxiety.

Debbie - you're right - my doc can be a donkey sometimes. I'm seeing him on the 23rd, which isn't soon enough for me, so I will tell him that I want the blood test. He can't turn me down I don't think, even if it is for peace of mind.
 
B

Bozo

New member
I know how you feel .. My doctor has said the same thing to me many of times. I did get strong with him a few times on this problem. Back when I was married I had my wife go with me to explain how I was feeling. So you have two people telling the doctor what is going on. Do you take any thing for anxiety or depression? Another thing that has helped me was taking pain pills for my joint pain but it all so helps pick me up and get me thur the day because I work 50 hours a week..I have about 6 bugs growing in me at this time M.S.R.A ,aspergillus and others I can not spell. So see if you can get a family member to go with you or have that member call the nurse for you.
 
B

Bozo

New member
I know how you feel .. My doctor has said the same thing to me many of times. I did get strong with him a few times on this problem. Back when I was married I had my wife go with me to explain how I was feeling. So you have two people telling the doctor what is going on. Do you take any thing for anxiety or depression? Another thing that has helped me was taking pain pills for my joint pain but it all so helps pick me up and get me thur the day because I work 50 hours a week..I have about 6 bugs growing in me at this time M.S.R.A ,aspergillus and others I can not spell. So see if you can get a family member to go with you or have that member call the nurse for you.
 
A

anonymous

New member
Hi Liz

I remember back when my CF lungs use to get congested, I would do extra chest therapies until the infection cleared up. I did this before an IV clean out and in the early days I was able to avoid IV therapy because I got my lungs cleaned up on their own. If you have a fungal infection this can leave you feeling tired and run down. You feel like a malaise feeling. I know what candida is like and when i have or had too many sugary products I would feel this way.

I hope you can do this on your own the natural way. If you do have a fungal infection you might need medication for this. Could you see an independent pulmonolgist for your CF who is not a CF specialist?

You could also call your CF doctor and tell them if you cannot get to speak to him you might be going for a second opinion.

Just some thoughts
Risa
 
A

anonymous

New member
Hi Liz

I remember back when my CF lungs use to get congested, I would do extra chest therapies until the infection cleared up. I did this before an IV clean out and in the early days I was able to avoid IV therapy because I got my lungs cleaned up on their own. If you have a fungal infection this can leave you feeling tired and run down. You feel like a malaise feeling. I know what candida is like and when i have or had too many sugary products I would feel this way.

I hope you can do this on your own the natural way. If you do have a fungal infection you might need medication for this. Could you see an independent pulmonolgist for your CF who is not a CF specialist?

You could also call your CF doctor and tell them if you cannot get to speak to him you might be going for a second opinion.

Just some thoughts
Risa
 
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thelizardqueen

New member
I've thought about it, and even though I do have an appt with my CF specialist on the 23rd of March, I'm going to see my family doctor, and see if he can test me for Aspergillus. I'm just waiting to hear back from my family doc's nurse with an appt date. I'm not going to take this sitting down, waiting for whatever is wrong with me to get worse, or listen to the doc about how its nothing. Thanks for all the advice and thoughts guys. I knew I could count on you.
 
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thelizardqueen

New member
I've thought about it, and even though I do have an appt with my CF specialist on the 23rd of March, I'm going to see my family doctor, and see if he can test me for Aspergillus. I'm just waiting to hear back from my family doc's nurse with an appt date. I'm not going to take this sitting down, waiting for whatever is wrong with me to get worse, or listen to the doc about how its nothing. Thanks for all the advice and thoughts guys. I knew I could count on you.
 
A

anonymous

New member
Good luck! Just seems rather odd that you're having symptoms that are common in people with problems with aspergillus, but your doctor doesn't seem to have a problem with it. I can understand not wanting to make waves and ending up like Kramer on Seinfeld -- having to resort to seeing a veterinarian 'cuz of being labeled a "difficult patient", but as DH points out to me quite often when I complain about medical care or lack thereof "you're the customer, call them back and tell them your concerns". I was once told I was depressed after complaining about waves of dizziness and horrible headaches -- felt as if I had someone elses hangover -- turns out I had an inner ear infection.

Anyway, you've got an appoint for the 23rd, meanwhile maybe you can get into see your regular doctor and have him do the test or refer you to a pulmonologist. There must be other people -- asthmatics, people with COPD, etc. who have problems with aspergillus etc. in your city that go to pulmonologists....

We live in the states, but we take DS to a peds infectious disease doctor, who specializes in CF. We don't go to a CF Clinic. Didn't like the way the accreditted one was run -- common waiting room, cattle calls to Xray and Lab. All patients were on the same meds, didn't treat their patients as individuals, but CF as a hole.
 
A

anonymous

New member
Good luck! Just seems rather odd that you're having symptoms that are common in people with problems with aspergillus, but your doctor doesn't seem to have a problem with it. I can understand not wanting to make waves and ending up like Kramer on Seinfeld -- having to resort to seeing a veterinarian 'cuz of being labeled a "difficult patient", but as DH points out to me quite often when I complain about medical care or lack thereof "you're the customer, call them back and tell them your concerns". I was once told I was depressed after complaining about waves of dizziness and horrible headaches -- felt as if I had someone elses hangover -- turns out I had an inner ear infection.

Anyway, you've got an appoint for the 23rd, meanwhile maybe you can get into see your regular doctor and have him do the test or refer you to a pulmonologist. There must be other people -- asthmatics, people with COPD, etc. who have problems with aspergillus etc. in your city that go to pulmonologists....

We live in the states, but we take DS to a peds infectious disease doctor, who specializes in CF. We don't go to a CF Clinic. Didn't like the way the accreditted one was run -- common waiting room, cattle calls to Xray and Lab. All patients were on the same meds, didn't treat their patients as individuals, but CF as a hole.
 
J

Jennifer1981

New member
Hi Liz,

I'm sorry to hear about you not feeling well. Be pushy with your doctor. No one knows your body better than you. I want to share with you a story that happened to me. This is another reason I don't trust doctors.

In 1994, I got really sick. Constant vomiting, weight loss of 20 pounds, and fever of 104 F. I was on the verge of passing out. I was coughing up mucus plugs and very dehydrated. I went to my doctor to find out what was wrong. He said that it was a viral infection and to take Cipro for the next two weeks. I did that. I only got worse. I could not even keep water down. I went back 4 days later. He said continue the Cipro, but we may have to hospitalize you for dehydration. He said "You'll feel better." After another 4 days, my fever went up to 107 F. I was faint, lifeless. I was rushed to the hospital. A STAT x-ray was ordered. I remember throwing up on the table. Then, I remembered hearing "Jen, did you have your appendix removed???" I was rushed immediately down to OR.

It had burst 1.5 weeks ago. The only explanation that could be offered was this. The CF saved your life. All the mucus throughout your body contained the majority of the poisonous toxins. Some seeped out causing you to be ill. You would have died in a few more days. If you would have been normal, you would not be here today.

DOCTORS ARE FOOLISH MANY TIMES. TRUST YOUR OWN INSTINCTS. YOU'LL BE FINE. I REALLY DON'T MEAN TO SCARE YOU. I ONLY SHARED THIS WITH YOU BECAUSE DOCTORS LOVE TO SAY THAT IT IS ALL IN YOUR HEAD WHEN THEY HAVE NO ANSWER. AND THEY WILL USE YOUR ANXIETY ATTACK HISTORY TO THE FULLEST EXTENT.
 
J

Jennifer1981

New member
Hi Liz,

I'm sorry to hear about you not feeling well. Be pushy with your doctor. No one knows your body better than you. I want to share with you a story that happened to me. This is another reason I don't trust doctors.

In 1994, I got really sick. Constant vomiting, weight loss of 20 pounds, and fever of 104 F. I was on the verge of passing out. I was coughing up mucus plugs and very dehydrated. I went to my doctor to find out what was wrong. He said that it was a viral infection and to take Cipro for the next two weeks. I did that. I only got worse. I could not even keep water down. I went back 4 days later. He said continue the Cipro, but we may have to hospitalize you for dehydration. He said "You'll feel better." After another 4 days, my fever went up to 107 F. I was faint, lifeless. I was rushed to the hospital. A STAT x-ray was ordered. I remember throwing up on the table. Then, I remembered hearing "Jen, did you have your appendix removed???" I was rushed immediately down to OR.

It had burst 1.5 weeks ago. The only explanation that could be offered was this. The CF saved your life. All the mucus throughout your body contained the majority of the poisonous toxins. Some seeped out causing you to be ill. You would have died in a few more days. If you would have been normal, you would not be here today.

DOCTORS ARE FOOLISH MANY TIMES. TRUST YOUR OWN INSTINCTS. YOU'LL BE FINE. I REALLY DON'T MEAN TO SCARE YOU. I ONLY SHARED THIS WITH YOU BECAUSE DOCTORS LOVE TO SAY THAT IT IS ALL IN YOUR HEAD WHEN THEY HAVE NO ANSWER. AND THEY WILL USE YOUR ANXIETY ATTACK HISTORY TO THE FULLEST EXTENT.
 
J

Jane

Digital opinion leader
Liz,
I am so furious for you in your situation. We've had problems having our doctors hear us too. Many times they come into the appointment with a preconceived plan and don't even hear your news or concerns at all. Who has more right to be anxious than you? My older son gets so upset and anxious during appointments that he can't do pfts. We now have our doctor do the check up and call us at home to discuss the results.

Aspergillus can have the same symptoms as worsening CF (increased cough etc) but is easily treated with prednisone or sporinox (it IS treatable!) What a jerk your doctor is. He may not be concerned because your numbers were in the "normal" range. My son had numbers in the high normal range but recently his doctor wanted to start treating it. I'm sorry I can't remember his IgE numbers to tell you.
Demand your doctor hears your concerns!

Hugs to you!

Jane
 
J

Jane

Digital opinion leader
Liz,
I am so furious for you in your situation. We've had problems having our doctors hear us too. Many times they come into the appointment with a preconceived plan and don't even hear your news or concerns at all. Who has more right to be anxious than you? My older son gets so upset and anxious during appointments that he can't do pfts. We now have our doctor do the check up and call us at home to discuss the results.

Aspergillus can have the same symptoms as worsening CF (increased cough etc) but is easily treated with prednisone or sporinox (it IS treatable!) What a jerk your doctor is. He may not be concerned because your numbers were in the "normal" range. My son had numbers in the high normal range but recently his doctor wanted to start treating it. I'm sorry I can't remember his IgE numbers to tell you.
Demand your doctor hears your concerns!

Hugs to you!

Jane
 
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