PLEASE READ - I really need help

A

Asexyblond23

New member
Ok guys long story short we just moved to WA. The seattle clinic can not get me in untill April 3rd. Since we have moved I have had a big exaserbation. One to where my numbers have dropped to the lowest point they have ever been in my life. I can not get into the CF doctor so the pulmonary doctors at teh army hospital have been treating me. My sputum results came back showing that I am restiant to EVERY THING. My sputum in TN on Dec 1, 2011 showed me resistant to 3 drugs. How in the heck did in 2 months become resistant to EVERYTHING?? I also cultred MRSA for the first time ever. So the doctors are giving me vancomycin ever 12 hours ( not every 8 like the cf docs) and they refuse to do any IV's for my psoudmonus. They will give me inhaled colistion for 14 days, hello thats insane! Colistion is more a maintance drug not a hard hitting drug for an infection. The cf doctors said give me one of the ones that is a big hitters like meropemem or tobra and let it do some work on the other strains I have but they refuse. They will only give me IV colistion which they gave me in the hosptial ( when I admitted myself to get IV's because they would only give me oral) and I had a bad reaction to it. I need to know if anyone has taken IV colistion and if you had a reaction. I am stuck because the Cheif of internal medicine the one who allows the doctors to give meds will not approve anything but colistion for me even after talking to 4 doctors telling him I should and want more. Then the doc seeing me is telling me that since I am resistant to everything I may be at a point where I just cant get my numbers back up anymore. I REFUSE to believe that. Am I insane? I am fighting for meds but cant get them. She basically told me that the 12 point drop in my points is permament ( which is up by 4 points when I started all this 3 weeks ago). Could someone help with advice. I have a bad reaction to the colsitoin IV but it is all they will give me and I believe that I have to take it so I dont damage my lungs anymore.
 
A

Asexyblond23

New member
Ok guys long story short we just moved to WA. The seattle clinic can not get me in untill April 3rd. Since we have moved I have had a big exaserbation. One to where my numbers have dropped to the lowest point they have ever been in my life. I can not get into the CF doctor so the pulmonary doctors at teh army hospital have been treating me. My sputum results came back showing that I am restiant to EVERY THING. My sputum in TN on Dec 1, 2011 showed me resistant to 3 drugs. How in the heck did in 2 months become resistant to EVERYTHING?? I also cultred MRSA for the first time ever. So the doctors are giving me vancomycin ever 12 hours ( not every 8 like the cf docs) and they refuse to do any IV's for my psoudmonus. They will give me inhaled colistion for 14 days, hello thats insane! Colistion is more a maintance drug not a hard hitting drug for an infection. The cf doctors said give me one of the ones that is a big hitters like meropemem or tobra and let it do some work on the other strains I have but they refuse. They will only give me IV colistion which they gave me in the hosptial ( when I admitted myself to get IV's because they would only give me oral) and I had a bad reaction to it. I need to know if anyone has taken IV colistion and if you had a reaction. I am stuck because the Cheif of internal medicine the one who allows the doctors to give meds will not approve anything but colistion for me even after talking to 4 doctors telling him I should and want more. Then the doc seeing me is telling me that since I am resistant to everything I may be at a point where I just cant get my numbers back up anymore. I REFUSE to believe that. Am I insane? I am fighting for meds but cant get them. She basically told me that the 12 point drop in my points is permament ( which is up by 4 points when I started all this 3 weeks ago). Could someone help with advice. I have a bad reaction to the colsitoin IV but it is all they will give me and I believe that I have to take it so I dont damage my lungs anymore.
 
J

JustDucky

New member
Wow....how frustrating! Do you have a GP yet? If you do, he or she may be able to pull a few strings and get you into the CF center earlier because you are ill. I am amazed that the CF center wont take you earlier now that you have a significant exacerbation, clearly the present docs have NO CLUE what they are doing! I cannot believe that they aren't treating you more aggressively and that they are saying that your PFT changes are permanent. I would love to know how they came to that conclusion especially since they aren't really treating you. They must have a crystal ball that you aren't aware of......
Here's another thought, can you get to an ID doctor who is familiar with CF? I think you would have a better chance with an ID doc considering you are growing some pretty resistant bugs.
I have never had Colistin as an IV, but I am on it daily nebulized to keep my PA at bay. I would think that they would try the oral Colistin first because it can be so toxic to the body.....
Also, are there more than one CF centers you could use? If you can't get into Seattle's clinic, then try another one if it is possible.
Stay on their cases, don't let them have the final word. You know your body!
Good luck and hugs
Jenn 40 w/CF
 
J

JustDucky

New member
Wow....how frustrating! Do you have a GP yet? If you do, he or she may be able to pull a few strings and get you into the CF center earlier because you are ill. I am amazed that the CF center wont take you earlier now that you have a significant exacerbation, clearly the present docs have NO CLUE what they are doing! I cannot believe that they aren't treating you more aggressively and that they are saying that your PFT changes are permanent. I would love to know how they came to that conclusion especially since they aren't really treating you. They must have a crystal ball that you aren't aware of......
Here's another thought, can you get to an ID doctor who is familiar with CF? I think you would have a better chance with an ID doc considering you are growing some pretty resistant bugs.
I have never had Colistin as an IV, but I am on it daily nebulized to keep my PA at bay. I would think that they would try the oral Colistin first because it can be so toxic to the body.....
Also, are there more than one CF centers you could use? If you can't get into Seattle's clinic, then try another one if it is possible.
Stay on their cases, don't let them have the final word. You know your body!
Good luck and hugs
Jenn 40 w/CF
 
R

rubyroselee

New member
I would call the CF center and tell them how sick you are and see if they can fit you in somehow. Or maybe you can find another CF center that is also closeby that will see you quickly? And just like Jenn said, maybe get in to see a GP too. The other option is to go to the ER and see if they'll admit you that way. I'm so sorry you're in this bind.
 
R

rubyroselee

New member
I would call the CF center and tell them how sick you are and see if they can fit you in somehow. Or maybe you can find another CF center that is also closeby that will see you quickly? And just like Jenn said, maybe get in to see a GP too. The other option is to go to the ER and see if they'll admit you that way. I'm so sorry you're in this bind.
 
B

beleache

New member
Hi Alisha,
I seem to remember another member that used to come to cf.com lived in that area, i think she dealt w/ the army post & she was always having probs w/ them..
I would do whatever you have to do to be seen by a cf clinic, including going to a different area.. CF centers/drs are different than other health facilities/drs, they think outside the box, they do things differently. Can you move back to your old center ?
I hope all works out for you. Keep us posted <3 joni
 
B

beleache

New member
Hi Alisha,
I seem to remember another member that used to come to cf.com lived in that area, i think she dealt w/ the army post & she was always having probs w/ them..
I would do whatever you have to do to be seen by a cf clinic, including going to a different area.. CF centers/drs are different than other health facilities/drs, they think outside the box, they do things differently. Can you move back to your old center ?
I hope all works out for you. Keep us posted <3 joni
 
P

Printer

Active member
Alisha:

Leah nailed it. Beg, borrow or steal your way into a CF Clinic. I might even go to the CF Clinic at 8 am and stay there until some Doctor decides to see me.

Bill
 
P

Printer

Active member
Alisha:

Leah nailed it. Beg, borrow or steal your way into a CF Clinic. I might even go to the CF Clinic at 8 am and stay there until some Doctor decides to see me.

Bill
 
M

musclemania70

New member
YOU need to call your local CF clinic NOW and tell them you are very SICK!! Make it sound worse if you have to and that your health is in SERIOUS danger. Tell them YOU CANNOT WAIT UNTIL YOUR SCHEDULED APPT to see get help.
INSIST that they admit you and get you started on IV's.

YOU are responsible for your own health.
CALL THEM NOW!
 
M

musclemania70

New member
YOU need to call your local CF clinic NOW and tell them you are very SICK!! Make it sound worse if you have to and that your health is in SERIOUS danger. Tell them YOU CANNOT WAIT UNTIL YOUR SCHEDULED APPT to see get help.
INSIST that they admit you and get you started on IV's.

YOU are responsible for your own health.
CALL THEM NOW!
 
H

Havoc

New member
Could you not demand that they consult with your former CF team? The new CF center probably will not cooperate since they do not know your history, but your former clinic would be happy to. I'm shocked that a doc would not consult with a CF doc when presented with a CF patient. Some docs are so bloody arrogant. Demand that they consult with a CF specialist, or you will report the incident to the Joint Commission and the state licensing board.
 
H

Havoc

New member
Could you not demand that they consult with your former CF team? The new CF center probably will not cooperate since they do not know your history, but your former clinic would be happy to. I'm shocked that a doc would not consult with a CF doc when presented with a CF patient. Some docs are so bloody arrogant. Demand that they consult with a CF specialist, or you will report the incident to the Joint Commission and the state licensing board.
 
S

semperfiohana

Guest
ok here's a question. can the cf clinic not get you in until the 3rd because they are booked? or because your referral doesn't kick in? or because your insurance hasn't switched until then? if it's because they are booked go in via er then they have to take care of you. and i know technically since it's military you are supposed to go to their er (i don't trust them with a ten foot pole for er services-been there done that with navy) call tricare and explain the situation that you are not getting the care you need. that you are being refused the medication to help you and that you need to go to the er at the hospital with cf care so that you can receive proper treatment.

three years ago (round abouts) i was on ivs and my arm was swollen. my home health care told me to go to the er. i had three to choose from the naval hospital, the local hospital, and my cf clinic 3 hours away. i went to the naval hospital like i was supposed to and they looked at my arm drew blood and told me i was fine and sent me home. i went i think another 5 days with ivs and a swollen arm. when i went to my cf clinic for my check up turns out i had a blood clot in my arm. now i'm not finger pointing but they could have killed me cause they didn't do an ultrasound on my and said because my arm didn't have a fever i was fine. since moving where we are now i'm assigned to the clinic here on base as my primary. i got sick went in and was told it was allergies. couple weeks later i wound up on iv's through my cf clinic. needless to say i don't trust military docs. may be wrong of me, but i've had bad experiences with them.

anyways now that i've given a long story, call tricare if you need to and go to the er of the cf clinic. i know you have a son, but with a 12 point drop you want to be on top of trying to get those 12 points back before permanent damage is done.
 
S

semperfiohana

Guest
ok here's a question. can the cf clinic not get you in until the 3rd because they are booked? or because your referral doesn't kick in? or because your insurance hasn't switched until then? if it's because they are booked go in via er then they have to take care of you. and i know technically since it's military you are supposed to go to their er (i don't trust them with a ten foot pole for er services-been there done that with navy) call tricare and explain the situation that you are not getting the care you need. that you are being refused the medication to help you and that you need to go to the er at the hospital with cf care so that you can receive proper treatment.

three years ago (round abouts) i was on ivs and my arm was swollen. my home health care told me to go to the er. i had three to choose from the naval hospital, the local hospital, and my cf clinic 3 hours away. i went to the naval hospital like i was supposed to and they looked at my arm drew blood and told me i was fine and sent me home. i went i think another 5 days with ivs and a swollen arm. when i went to my cf clinic for my check up turns out i had a blood clot in my arm. now i'm not finger pointing but they could have killed me cause they didn't do an ultrasound on my and said because my arm didn't have a fever i was fine. since moving where we are now i'm assigned to the clinic here on base as my primary. i got sick went in and was told it was allergies. couple weeks later i wound up on iv's through my cf clinic. needless to say i don't trust military docs. may be wrong of me, but i've had bad experiences with them.

anyways now that i've given a long story, call tricare if you need to and go to the er of the cf clinic. i know you have a son, but with a 12 point drop you want to be on top of trying to get those 12 points back before permanent damage is done.
 
M

mackenziesmom

New member
Hopefully, the hospital where the CF center is located has an emergency room. Go there. They have to treat you and if you're sick enough (sounds like you are) they should admit you. I'm sure the ER drs would bring in the CF team at that point.
I wouldn't wait.
 
M

mackenziesmom

New member
Hopefully, the hospital where the CF center is located has an emergency room. Go there. They have to treat you and if you're sick enough (sounds like you are) they should admit you. I'm sure the ER drs would bring in the CF team at that point.
I wouldn't wait.
 
I

Incomudrox

New member
Just pick a center and show up at the ER - Meet new docs. 3 years ago I moved to Pittsburgh and then moved back to Philadelphia. Before I moved I went to the childrens hospital. When I moved back I knew I couldn't go back to the peds hospital and I needed an admission but wasn't even setup at the adult center so I just crashed the ER and that was that. I also had no insurance at this time fwiw.
 
I

Incomudrox

New member
Just pick a center and show up at the ER - Meet new docs. 3 years ago I moved to Pittsburgh and then moved back to Philadelphia. Before I moved I went to the childrens hospital. When I moved back I knew I couldn't go back to the peds hospital and I needed an admission but wasn't even setup at the adult center so I just crashed the ER and that was that. I also had no insurance at this time fwiw.
 
You must log in or register to reply here.
Top