Tired of fighting.

mysticrose · Jan 10, 2010

Due to my husbands job we have moved around quiet a bit. Our longest time spent with one clinic was 5 years. During that time we managed to get a great repore with the doctor and nurses. If I called and said XYZ was going on they'd either call in meds or have us bring who ever it was in for a sputum culture. We'd go in for a clinic visit and walk out with our appt schedualed for the next in 3 months. We got so used to doing things a certain way. How we flushed the port, the formula for feeding tubes, being able to do IV's at home instead of in the hospital for 2 weeks. It just made life easier. Then we moved and were dealing with a small "clinic" and an arrogant dr. Of course everyone else who used him loved him. He would critisize us and how we did things. Tell us we were basically killing our kids because we didn't follow HIS ways. It got to the point I'd have anxiety attacks when going to the clinic. So we moved yet again. Now we are dealing with a whole different set of people. My anxiety has gotten better but we still have to fight to get things accomplished. Why can't the doctor just listen to us? I just know that in a year or so (with luck) we will move yet again. I just feel like not only with the CF but with the doctors we are fighting an even deeper up hill battle. At times it feels like we are ice skating up hill with no toe picks. I feel like we have missed information on CF and bugs in these times. I had left the CF community for several years because of depression and the basic feeling of worthlessness.

Sorry just needed to vent and get this off my chest with people who have an understanding of what we go through.

Jen.

mysticrose · Jan 10, 2010

Due to my husbands job we have moved around quiet a bit. Our longest time spent with one clinic was 5 years. During that time we managed to get a great repore with the doctor and nurses. If I called and said XYZ was going on they'd either call in meds or have us bring who ever it was in for a sputum culture. We'd go in for a clinic visit and walk out with our appt schedualed for the next in 3 months. We got so used to doing things a certain way. How we flushed the port, the formula for feeding tubes, being able to do IV's at home instead of in the hospital for 2 weeks. It just made life easier. Then we moved and were dealing with a small "clinic" and an arrogant dr. Of course everyone else who used him loved him. He would critisize us and how we did things. Tell us we were basically killing our kids because we didn't follow HIS ways. It got to the point I'd have anxiety attacks when going to the clinic. So we moved yet again. Now we are dealing with a whole different set of people. My anxiety has gotten better but we still have to fight to get things accomplished. Why can't the doctor just listen to us? I just know that in a year or so (with luck) we will move yet again. I just feel like not only with the CF but with the doctors we are fighting an even deeper up hill battle. At times it feels like we are ice skating up hill with no toe picks. I feel like we have missed information on CF and bugs in these times. I had left the CF community for several years because of depression and the basic feeling of worthlessness.

Sorry just needed to vent and get this off my chest with people who have an understanding of what we go through.

Jen.

mysticrose · Jan 10, 2010

Due to my husbands job we have moved around quiet a bit. Our longest time spent with one clinic was 5 years. During that time we managed to get a great repore with the doctor and nurses. If I called and said XYZ was going on they'd either call in meds or have us bring who ever it was in for a sputum culture. We'd go in for a clinic visit and walk out with our appt schedualed for the next in 3 months. We got so used to doing things a certain way. How we flushed the port, the formula for feeding tubes, being able to do IV's at home instead of in the hospital for 2 weeks. It just made life easier. Then we moved and were dealing with a small "clinic" and an arrogant dr. Of course everyone else who used him loved him. He would critisize us and how we did things. Tell us we were basically killing our kids because we didn't follow HIS ways. It got to the point I'd have anxiety attacks when going to the clinic. So we moved yet again. Now we are dealing with a whole different set of people. My anxiety has gotten better but we still have to fight to get things accomplished. Why can't the doctor just listen to us? I just know that in a year or so (with luck) we will move yet again. I just feel like not only with the CF but with the doctors we are fighting an even deeper up hill battle. At times it feels like we are ice skating up hill with no toe picks. I feel like we have missed information on CF and bugs in these times. I had left the CF community for several years because of depression and the basic feeling of worthlessness.

Sorry just needed to vent and get this off my chest with people who have an understanding of what we go through.

Jen.

mysticrose · Jan 10, 2010

Due to my husbands job we have moved around quiet a bit. Our longest time spent with one clinic was 5 years. During that time we managed to get a great repore with the doctor and nurses. If I called and said XYZ was going on they'd either call in meds or have us bring who ever it was in for a sputum culture. We'd go in for a clinic visit and walk out with our appt schedualed for the next in 3 months. We got so used to doing things a certain way. How we flushed the port, the formula for feeding tubes, being able to do IV's at home instead of in the hospital for 2 weeks. It just made life easier. Then we moved and were dealing with a small "clinic" and an arrogant dr. Of course everyone else who used him loved him. He would critisize us and how we did things. Tell us we were basically killing our kids because we didn't follow HIS ways. It got to the point I'd have anxiety attacks when going to the clinic. So we moved yet again. Now we are dealing with a whole different set of people. My anxiety has gotten better but we still have to fight to get things accomplished. Why can't the doctor just listen to us? I just know that in a year or so (with luck) we will move yet again. I just feel like not only with the CF but with the doctors we are fighting an even deeper up hill battle. At times it feels like we are ice skating up hill with no toe picks. I feel like we have missed information on CF and bugs in these times. I had left the CF community for several years because of depression and the basic feeling of worthlessness.

Sorry just needed to vent and get this off my chest with people who have an understanding of what we go through.

Jen.

mysticrose · Jan 10, 2010

Due to my husbands job we have moved around quiet a bit. Our longest time spent with one clinic was 5 years. During that time we managed to get a great repore with the doctor and nurses. If I called and said XYZ was going on they'd either call in meds or have us bring who ever it was in for a sputum culture. We'd go in for a clinic visit and walk out with our appt schedualed for the next in 3 months. We got so used to doing things a certain way. How we flushed the port, the formula for feeding tubes, being able to do IV's at home instead of in the hospital for 2 weeks. It just made life easier. Then we moved and were dealing with a small "clinic" and an arrogant dr. Of course everyone else who used him loved him. He would critisize us and how we did things. Tell us we were basically killing our kids because we didn't follow HIS ways. It got to the point I'd have anxiety attacks when going to the clinic. So we moved yet again. Now we are dealing with a whole different set of people. My anxiety has gotten better but we still have to fight to get things accomplished. Why can't the doctor just listen to us? I just know that in a year or so (with luck) we will move yet again. I just feel like not only with the CF but with the doctors we are fighting an even deeper up hill battle. At times it feels like we are ice skating up hill with no toe picks. I feel like we have missed information on CF and bugs in these times. I had left the CF community for several years because of depression and the basic feeling of worthlessness.
 
 Sorry just needed to vent and get this off my chest with people who have an understanding of what we go through.
 
 Jen.

mariahsmommy · Jan 10, 2010

I understand your dilemma except I don't move homes, just clinics. I have already switched Docs for my daughter once and I am contemplating doing it again. Bottom line is most of them that I have met don't really and truely listen to your concerns or questions. I have no clue why. They don't understand that things are individualized and that there is no one way to do things. Hopefully things will get better for you! CF sucks and we have to deal with stupid people telling us what to do with our children when all I have wanted to do since she was born was just hide from the world and nurture her myself. But unfortunately we can't do that. Without medicine our children would not be here. One day though we won't have to worry about any of this.

mariahsmommy · Jan 10, 2010

I understand your dilemma except I don't move homes, just clinics. I have already switched Docs for my daughter once and I am contemplating doing it again. Bottom line is most of them that I have met don't really and truely listen to your concerns or questions. I have no clue why. They don't understand that things are individualized and that there is no one way to do things. Hopefully things will get better for you! CF sucks and we have to deal with stupid people telling us what to do with our children when all I have wanted to do since she was born was just hide from the world and nurture her myself. But unfortunately we can't do that. Without medicine our children would not be here. One day though we won't have to worry about any of this.

mariahsmommy · Jan 10, 2010

I understand your dilemma except I don't move homes, just clinics. I have already switched Docs for my daughter once and I am contemplating doing it again. Bottom line is most of them that I have met don't really and truely listen to your concerns or questions. I have no clue why. They don't understand that things are individualized and that there is no one way to do things. Hopefully things will get better for you! CF sucks and we have to deal with stupid people telling us what to do with our children when all I have wanted to do since she was born was just hide from the world and nurture her myself. But unfortunately we can't do that. Without medicine our children would not be here. One day though we won't have to worry about any of this.

mariahsmommy · Jan 10, 2010

I understand your dilemma except I don't move homes, just clinics. I have already switched Docs for my daughter once and I am contemplating doing it again. Bottom line is most of them that I have met don't really and truely listen to your concerns or questions. I have no clue why. They don't understand that things are individualized and that there is no one way to do things. Hopefully things will get better for you! CF sucks and we have to deal with stupid people telling us what to do with our children when all I have wanted to do since she was born was just hide from the world and nurture her myself. But unfortunately we can't do that. Without medicine our children would not be here. One day though we won't have to worry about any of this.

mariahsmommy · Jan 10, 2010

I understand your dilemma except I don't move homes, just clinics. I have already switched Docs for my daughter once and I am contemplating doing it again. Bottom line is most of them that I have met don't really and truely listen to your concerns or questions. I have no clue why. They don't understand that things are individualized and that there is no one way to do things. Hopefully things will get better for you! CF sucks and we have to deal with stupid people telling us what to do with our children when all I have wanted to do since she was born was just hide from the world and nurture her myself. But unfortunately we can't do that. Without medicine our children would not be here. One day though we won't have to worry about any of this.

Ratatosk · Jan 10, 2010

We had similar issues with our local clinic to the extent that we stoppped going. DS goes to one of the pediatricians who heads the CF clinic, but we won't go to the local clinic. Seemed like the 4 hours we spent there it was spent cooling our heels or being chastised for just about everything. We go to a smaller clinic in the city about 3 1\2 hours drive away.

I too got stressed mainly because of the tiny crowded waiting room and knowing what we'd be dealing with

Ratatosk · Jan 10, 2010

We had similar issues with our local clinic to the extent that we stoppped going. DS goes to one of the pediatricians who heads the CF clinic, but we won't go to the local clinic. Seemed like the 4 hours we spent there it was spent cooling our heels or being chastised for just about everything. We go to a smaller clinic in the city about 3 1\2 hours drive away.

I too got stressed mainly because of the tiny crowded waiting room and knowing what we'd be dealing with

Ratatosk · Jan 10, 2010

We had similar issues with our local clinic to the extent that we stoppped going. DS goes to one of the pediatricians who heads the CF clinic, but we won't go to the local clinic. Seemed like the 4 hours we spent there it was spent cooling our heels or being chastised for just about everything. We go to a smaller clinic in the city about 3 1\2 hours drive away.

I too got stressed mainly because of the tiny crowded waiting room and knowing what we'd be dealing with

Ratatosk · Jan 10, 2010

We had similar issues with our local clinic to the extent that we stoppped going. DS goes to one of the pediatricians who heads the CF clinic, but we won't go to the local clinic. Seemed like the 4 hours we spent there it was spent cooling our heels or being chastised for just about everything. We go to a smaller clinic in the city about 3 1\2 hours drive away.

I too got stressed mainly because of the tiny crowded waiting room and knowing what we'd be dealing with

Ratatosk · Jan 10, 2010

We had similar issues with our local clinic to the extent that we stoppped going. DS goes to one of the pediatricians who heads the CF clinic, but we won't go to the local clinic. Seemed like the 4 hours we spent there it was spent cooling our heels or being chastised for just about everything. We go to a smaller clinic in the city about 3 1\2 hours drive away.
 
 I too got stressed mainly because of the tiny crowded waiting room and knowing what we'd be dealing with

JennifersHope · Jan 13, 2010

Gosh I am so sorry you are going through that.. I feel like you absoultly have to be on the same page as the team caring for your child. It is without a doubt key.

I have only gone to two clinics and I only switched because I moved way out of state.. Both clinics are great and both totally get me, helped me and understood exactly where I was coming from.

It is less then ideal to be moving around and changing clinics so much but if you have to make sure you have excellent records of all bugs cultured, pfts, antibiotics used etc....

I don't think it is a good idea to ride it out for a year.. Try to do something to come to an agreement with the team you are with.. Sit down, talk to them, tell them how you feel etc...

Honestly, being a CF team is a lot of hard work and very emotionally draining for them..they don't just pick a job usually.. they do this because they are commited to the cause..

If there are really being insistant on things being done a certain way, try to figure out why it is that they really want it that way, see what you can do to compromise..etc.. Try to hve a decent relationship with them so that the communication is clear...

I may just be a bit naive because I have been to regular doctors who were impossible but never a CF center that I didn't think was totally amazing and dedicated

JennifersHope · Jan 13, 2010

Gosh I am so sorry you are going through that.. I feel like you absoultly have to be on the same page as the team caring for your child. It is without a doubt key.

I have only gone to two clinics and I only switched because I moved way out of state.. Both clinics are great and both totally get me, helped me and understood exactly where I was coming from.

It is less then ideal to be moving around and changing clinics so much but if you have to make sure you have excellent records of all bugs cultured, pfts, antibiotics used etc....

I don't think it is a good idea to ride it out for a year.. Try to do something to come to an agreement with the team you are with.. Sit down, talk to them, tell them how you feel etc...

Honestly, being a CF team is a lot of hard work and very emotionally draining for them..they don't just pick a job usually.. they do this because they are commited to the cause..

If there are really being insistant on things being done a certain way, try to figure out why it is that they really want it that way, see what you can do to compromise..etc.. Try to hve a decent relationship with them so that the communication is clear...

I may just be a bit naive because I have been to regular doctors who were impossible but never a CF center that I didn't think was totally amazing and dedicated

JennifersHope · Jan 13, 2010

Gosh I am so sorry you are going through that.. I feel like you absoultly have to be on the same page as the team caring for your child. It is without a doubt key.

I have only gone to two clinics and I only switched because I moved way out of state.. Both clinics are great and both totally get me, helped me and understood exactly where I was coming from.

It is less then ideal to be moving around and changing clinics so much but if you have to make sure you have excellent records of all bugs cultured, pfts, antibiotics used etc....

I don't think it is a good idea to ride it out for a year.. Try to do something to come to an agreement with the team you are with.. Sit down, talk to them, tell them how you feel etc...

Honestly, being a CF team is a lot of hard work and very emotionally draining for them..they don't just pick a job usually.. they do this because they are commited to the cause..

If there are really being insistant on things being done a certain way, try to figure out why it is that they really want it that way, see what you can do to compromise..etc.. Try to hve a decent relationship with them so that the communication is clear...

I may just be a bit naive because I have been to regular doctors who were impossible but never a CF center that I didn't think was totally amazing and dedicated

JennifersHope · Jan 13, 2010

Gosh I am so sorry you are going through that.. I feel like you absoultly have to be on the same page as the team caring for your child. It is without a doubt key.

I have only gone to two clinics and I only switched because I moved way out of state.. Both clinics are great and both totally get me, helped me and understood exactly where I was coming from.

It is less then ideal to be moving around and changing clinics so much but if you have to make sure you have excellent records of all bugs cultured, pfts, antibiotics used etc....

I don't think it is a good idea to ride it out for a year.. Try to do something to come to an agreement with the team you are with.. Sit down, talk to them, tell them how you feel etc...

Honestly, being a CF team is a lot of hard work and very emotionally draining for them..they don't just pick a job usually.. they do this because they are commited to the cause..

If there are really being insistant on things being done a certain way, try to figure out why it is that they really want it that way, see what you can do to compromise..etc.. Try to hve a decent relationship with them so that the communication is clear...

I may just be a bit naive because I have been to regular doctors who were impossible but never a CF center that I didn't think was totally amazing and dedicated

JennifersHope · Jan 13, 2010

Gosh I am so sorry you are going through that.. I feel like you absoultly have to be on the same page as the team caring for your child. It is without a doubt key.
 
 I have only gone to two clinics and I only switched because I moved way out of state.. Both clinics are great and both totally get me, helped me and understood exactly where I was coming from.
 
 It is less then ideal to be moving around and changing clinics so much but if you have to make sure you have excellent records of all bugs cultured, pfts, antibiotics used etc....
 
 I don't think it is a good idea to ride it out for a year.. Try to do something to come to an agreement with the team you are with.. Sit down, talk to them, tell them how you feel etc...
 
 Honestly, being a CF team is a lot of hard work and very emotionally draining for them..they don't just pick a job usually.. they do this because they are commited to the cause..
 
 If there are really being insistant on things being done a certain way, try to figure out why it is that they really want it that way, see what you can do to compromise..etc.. Try to hve a decent relationship with them so that the communication is clear...
 
 I may just be a bit naive because I have been to regular doctors who were impossible but never a CF center that I didn't think was totally amazing and dedicated

Tired of fighting.

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