Hey guys and gals, some of you know i've been sick. last two years my pfts have from 90 to 60 percent, i know thats a good size drop, and i've been sick since halloween. I went tonight and they said that my DIOS happened so i'm on go lightly. And I have a Resp Infection and in the beginning stages of Pneumonia...i'm having a lot of breathing problems and a lot of pain but they still sent me home after hearing my concerns, this goes along with the other times i needed help and they refused to do anything.<br>1.) No room left in my arms for ivs and running out of picc areas, REFUSES to do a port but rather poke me to death with countless IV attempts after they KNOW my ivs are no good after a few hours.<br>2.) Called me ahypochondriacbecause i was having severe pain and i couldn't breath, told me to stay off line because i suggestedpleurisy, they finally did a CT scan after me arguing with them about it, and in fact i did havePleurisy.<br>3.) tried sending me home after fighting w them there was something wrong, had to FIGHT with these drs, turns out i had C DIFF.<br>and the kicker 4.) tried putting in a G tube without trying to find out why i was having thediarrheaand loosing all my weight? They wanted to put in a g tube and check in on the procedure instead of admitting me and trying out different enzymes to see if my body out grew my old enzymes which was what happened i gained 9 lbs in a week.<br>I dont know what to do <img src="i/expressions/face-icon-small-sad.gif" border="0">
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Need help, at a loss
- Thread starter Vampy
- Start date
Hey guys and gals, some of you know i've been sick. last two years my pfts have from 90 to 60 percent, i know thats a good size drop, and i've been sick since halloween. I went tonight and they said that my DIOS happened so i'm on go lightly. And I have a Resp Infection and in the beginning stages of Pneumonia...i'm having a lot of breathing problems and a lot of pain but they still sent me home after hearing my concerns, this goes along with the other times i needed help and they refused to do anything.<br>1.) No room left in my arms for ivs and running out of picc areas, REFUSES to do a port but rather poke me to death with countless IV attempts after they KNOW my ivs are no good after a few hours.<br>2.) Called me ahypochondriacbecause i was having severe pain and i couldn't breath, told me to stay off line because i suggestedpleurisy, they finally did a CT scan after me arguing with them about it, and in fact i did havePleurisy.<br>3.) tried sending me home after fighting w them there was something wrong, had to FIGHT with these drs, turns out i had C DIFF.<br>and the kicker 4.) tried putting in a G tube without trying to find out why i was having thediarrheaand loosing all my weight? They wanted to put in a g tube and check in on the procedure instead of admitting me and trying out different enzymes to see if my body out grew my old enzymes which was what happened i gained 9 lbs in a week.<br>I dont know what to do <img src="i/expressions/face-icon-small-sad.gif" border="0">
Hey Vampy. I would seriously consider looking into a new doctor and/or center. Maybe if you said what city you are in others could make some recommendations. You keep doing what you know is best for your body. After years of living with this diseases and it's related symptoms no one nows your body as well as you. Find a doctor that listens and respects you. Big hugs as I know how painful bowel obstructions can be.
Peace,
Steph
Peace,
Steph
Hey Vampy. I would seriously consider looking into a new doctor and/or center. Maybe if you said what city you are in others could make some recommendations. You keep doing what you know is best for your body. After years of living with this diseases and it's related symptoms no one nows your body as well as you. Find a doctor that listens and respects you. Big hugs as I know how painful bowel obstructions can be.
Peace,
Steph
Peace,
Steph
I hear you. I recently had to fight with my doc too and even went as far as having him removed from my case, because I didn't feel he had my best interest in mind. Keep fighting, even though it's complete BS that you have to. I would also strongly recommend that you look for another clinic or another doc
I hear you. I recently had to fight with my doc too and even went as far as having him removed from my case, because I didn't feel he had my best interest in mind. Keep fighting, even though it's complete BS that you have to. I would also strongly recommend that you look for another clinic or another doc
I recently changed CF Centers because of differing views as to how I needed to be treated. I'm in Mass and very lucky in that there are 4 CF Centers within an hours drive from my home. I don't know how easy you can change Centers but it is obvious that you must change. Too often Doctors just don't listen.
Good luck,
Bill
Good luck,
Bill
I recently changed CF Centers because of differing views as to how I needed to be treated. I'm in Mass and very lucky in that there are 4 CF Centers within an hours drive from my home. I don't know how easy you can change Centers but it is obvious that you must change. Too often Doctors just don't listen.
Good luck,
Bill
Good luck,
Bill
Find another doctor....it just seems like they aren't taking care of you the way they should. A good doctor will trust you if you say something is wrong and will do something to fix it without question.. Doctors should understand that you have lived with this your whole life and you know your body best. I have had my share of doctors who wanted to do things their way and not listen to me, ignore me or like you, call me a hypochondriac. Any doctor who did that, was no longer on my case. It took awhile, but I now have a team who is amazing. I can literally call up, say that it is time to be admitted and he will start the ball rolling even before he sees me, he trusts me that much.
I hope you get the team that you deserve, please don't give up and keep looking until you find the right doctor.
Keeping you in my thoughts and prayers for sure..if I were your doctor, I would be worried about your PFT's and try to figure out why they dropped so significantly. There are many reasons why this would happen and they should be investigating them!
Hugs,
Jenn 40 w/CF
I hope you get the team that you deserve, please don't give up and keep looking until you find the right doctor.
Keeping you in my thoughts and prayers for sure..if I were your doctor, I would be worried about your PFT's and try to figure out why they dropped so significantly. There are many reasons why this would happen and they should be investigating them!
Hugs,
Jenn 40 w/CF
Find another doctor....it just seems like they aren't taking care of you the way they should. A good doctor will trust you if you say something is wrong and will do something to fix it without question.. Doctors should understand that you have lived with this your whole life and you know your body best. I have had my share of doctors who wanted to do things their way and not listen to me, ignore me or like you, call me a hypochondriac. Any doctor who did that, was no longer on my case. It took awhile, but I now have a team who is amazing. I can literally call up, say that it is time to be admitted and he will start the ball rolling even before he sees me, he trusts me that much.
I hope you get the team that you deserve, please don't give up and keep looking until you find the right doctor.
Keeping you in my thoughts and prayers for sure..if I were your doctor, I would be worried about your PFT's and try to figure out why they dropped so significantly. There are many reasons why this would happen and they should be investigating them!
Hugs,
Jenn 40 w/CF
I hope you get the team that you deserve, please don't give up and keep looking until you find the right doctor.
Keeping you in my thoughts and prayers for sure..if I were your doctor, I would be worried about your PFT's and try to figure out why they dropped so significantly. There are many reasons why this would happen and they should be investigating them!
Hugs,
Jenn 40 w/CF
lilmac1177
New member
<font size="2">i'd absolutely find a new doctor and/or CF center! i cannot imagine having a doctor who doesn't listen to me and, what's more, call me a hypochondriac ... that's <span style="font-weight: bold; font-style: italic; text-decoration: underline;">INSANE!!! <br></font>
lilmac1177
New member
<font size="2">i'd absolutely find a new doctor and/or CF center! i cannot imagine having a doctor who doesn't listen to me and, what's more, call me a hypochondriac ... that's <span style="font-weight: bold; font-style: italic; text-decoration: underline;">INSANE!!! <br></font>
you dont list where you are located but i would find another care center immediately! the cff.org site lists all the accredited and satellite centers in the whole country. you know your body better than anyone and need to fight to keep yourself as healthy as you can. i hope you have a support system of friends and/or family that can keep you going. i had to go "clinic shopping" when i changed insurance. it's hard enough to do when you are well. we all go through the frustration of different doctors on service when inpatient, but you should not have to deal with a clinic doctor that has "head up the butt" syndrome. good look and keep fighting!<br>
you dont list where you are located but i would find another care center immediately! the cff.org site lists all the accredited and satellite centers in the whole country. you know your body better than anyone and need to fight to keep yourself as healthy as you can. i hope you have a support system of friends and/or family that can keep you going. i had to go "clinic shopping" when i changed insurance. it's hard enough to do when you are well. we all go through the frustration of different doctors on service when inpatient, but you should not have to deal with a clinic doctor that has "head up the butt" syndrome. good look and keep fighting!<br>
JennifersHope
New member
I agree find a new doctor.. As hard as it was and still is for me to realize, not all CF centers are created equal. I adored the center I was going at and blindly trusted them, which lead me to never being sicker in my life.
I always believe the best about people, and in my case I believe my doctor meant well but he was hung up on some things that turned out to be a total non issue anyway, meanwhile, my lungs have MAC, I complained to him for a year about night sweats, fever, and feeling like I got hit but a truck, not once did he do a culture or check my oxygen sats.... I was walking around with sats in the 80's and culturing MAC.
Now that I am being treated minus my last Thanksgiving to Christmas intubation disaster. I am starting to get better... I hate saying that because I think CF doctors and teams work so hard for their patients, but they are human beings and sometimes you have to move on. I would have stayed where I was forever because I really liked him, though I was seeing him on a non CF day....since last Thanksgiving. mean while my lungs and health nose dived...
Move on but I also think you have to be reasonable too, it is hard to find a balance, it is even harder if you are on Medicaid, the care is just not the same.
I always believe the best about people, and in my case I believe my doctor meant well but he was hung up on some things that turned out to be a total non issue anyway, meanwhile, my lungs have MAC, I complained to him for a year about night sweats, fever, and feeling like I got hit but a truck, not once did he do a culture or check my oxygen sats.... I was walking around with sats in the 80's and culturing MAC.
Now that I am being treated minus my last Thanksgiving to Christmas intubation disaster. I am starting to get better... I hate saying that because I think CF doctors and teams work so hard for their patients, but they are human beings and sometimes you have to move on. I would have stayed where I was forever because I really liked him, though I was seeing him on a non CF day....since last Thanksgiving. mean while my lungs and health nose dived...
Move on but I also think you have to be reasonable too, it is hard to find a balance, it is even harder if you are on Medicaid, the care is just not the same.
JennifersHope
New member
I agree find a new doctor.. As hard as it was and still is for me to realize, not all CF centers are created equal. I adored the center I was going at and blindly trusted them, which lead me to never being sicker in my life.
I always believe the best about people, and in my case I believe my doctor meant well but he was hung up on some things that turned out to be a total non issue anyway, meanwhile, my lungs have MAC, I complained to him for a year about night sweats, fever, and feeling like I got hit but a truck, not once did he do a culture or check my oxygen sats.... I was walking around with sats in the 80's and culturing MAC.
Now that I am being treated minus my last Thanksgiving to Christmas intubation disaster. I am starting to get better... I hate saying that because I think CF doctors and teams work so hard for their patients, but they are human beings and sometimes you have to move on. I would have stayed where I was forever because I really liked him, though I was seeing him on a non CF day....since last Thanksgiving. mean while my lungs and health nose dived...
Move on but I also think you have to be reasonable too, it is hard to find a balance, it is even harder if you are on Medicaid, the care is just not the same.
I always believe the best about people, and in my case I believe my doctor meant well but he was hung up on some things that turned out to be a total non issue anyway, meanwhile, my lungs have MAC, I complained to him for a year about night sweats, fever, and feeling like I got hit but a truck, not once did he do a culture or check my oxygen sats.... I was walking around with sats in the 80's and culturing MAC.
Now that I am being treated minus my last Thanksgiving to Christmas intubation disaster. I am starting to get better... I hate saying that because I think CF doctors and teams work so hard for their patients, but they are human beings and sometimes you have to move on. I would have stayed where I was forever because I really liked him, though I was seeing him on a non CF day....since last Thanksgiving. mean while my lungs and health nose dived...
Move on but I also think you have to be reasonable too, it is hard to find a balance, it is even harder if you are on Medicaid, the care is just not the same.