How to get a second opinion?

TonyaH · Feb 9, 2011

I have a question about how to obtain a second opinion. I love Andrew's clinic. He has been treated for mycobacterium abcessus since this past summer and stopped ivs right before Christmas. His follow up AFB smears have been negative, however the day his picc was pulled his lung function had dropped 8 points from the day it was placed, and yesterday we were at clinic and he has dropped another four points.

Our doctor does not feel the need for amikacin nebs, and has not changed any of his meds. We go back again in ten weeks.

I trust that our doctor is making a conscious decision to not treat the FEV1 decline. I don't think she is just overlooking anything.

But I think I may want to talk to National Jewish in Denver, just to find out if there is every a case when they consider mycobacterium eradicated after 6 weeks of iv meds. In order to do this, would I have to get all of Andrew's records from the hospital? Would our clinic have to know we are consulting with another hospital? I feel very awkward about this. It's one thing to read research studies, etc. from other hospitals, but now that I'm to the point of contacting them, I'm worried about burning bridges with our current team that we love so much. I would not dream of leaving them,,,just gaining more information that will help me ask the right questions and provide more treatment options for Andrew.

Any thoughts?
Thanks!

TonyaH · Feb 9, 2011

I have a question about how to obtain a second opinion. I love Andrew's clinic. He has been treated for mycobacterium abcessus since this past summer and stopped ivs right before Christmas. His follow up AFB smears have been negative, however the day his picc was pulled his lung function had dropped 8 points from the day it was placed, and yesterday we were at clinic and he has dropped another four points.

Our doctor does not feel the need for amikacin nebs, and has not changed any of his meds. We go back again in ten weeks.

I trust that our doctor is making a conscious decision to not treat the FEV1 decline. I don't think she is just overlooking anything.

But I think I may want to talk to National Jewish in Denver, just to find out if there is every a case when they consider mycobacterium eradicated after 6 weeks of iv meds. In order to do this, would I have to get all of Andrew's records from the hospital? Would our clinic have to know we are consulting with another hospital? I feel very awkward about this. It's one thing to read research studies, etc. from other hospitals, but now that I'm to the point of contacting them, I'm worried about burning bridges with our current team that we love so much. I would not dream of leaving them,,,just gaining more information that will help me ask the right questions and provide more treatment options for Andrew.

Any thoughts?
Thanks!

TonyaH · Feb 9, 2011

I have a question about how to obtain a second opinion. I love Andrew's clinic. He has been treated for mycobacterium abcessus since this past summer and stopped ivs right before Christmas. His follow up AFB smears have been negative, however the day his picc was pulled his lung function had dropped 8 points from the day it was placed, and yesterday we were at clinic and he has dropped another four points.
 
 Our doctor does not feel the need for amikacin nebs, and has not changed any of his meds. We go back again in ten weeks.
 
 I trust that our doctor is making a conscious decision to not treat the FEV1 decline. I don't think she is just overlooking anything.
 
 But I think I may want to talk to National Jewish in Denver, just to find out if there is every a case when they consider mycobacterium eradicated after 6 weeks of iv meds. In order to do this, would I have to get all of Andrew's records from the hospital? Would our clinic have to know we are consulting with another hospital? I feel very awkward about this. It's one thing to read research studies, etc. from other hospitals, but now that I'm to the point of contacting them, I'm worried about burning bridges with our current team that we love so much. I would not dream of leaving them,,,just gaining more information that will help me ask the right questions and provide more treatment options for Andrew.
 
 Any thoughts?
 Thanks!

theLostMiler · Feb 9, 2011

I wonder if Amy (save ferris) has some good tips since she has been to a couple different centers.

Otherwise, I can totally understand wanting to do this, and frankly, it sucks that your doctor hasnt already mentioned it. I found about National Jewish, through my doctors, and my Infectious Disease doctor (on my team) actually was the one who called the doctors there, to get advice on how to treat me (just a simple question as to whether continue ivs for one month or two).

He even said I was welcome to go for a consultation there if I felt the need, I didnt b/c I felt confident with his communication and their relationships together.

Is there any way you could just suggest since they are the experts on this thing, that you are thinking for just that aspect of his CF, you could get some advice or a consultation (I wouldnt say "second opinion"). I guess, what seems important is the wording.

Also, what if you just flat out explained what you did here, you trust his team, and all, but just want more on how to deal with the M.A. since it can be a serious bug. I mean, how can they feel offended when you are just trying to do whats best for Andrew? (I understand the world does not work as ideal as I would like either haha).

I hope someone else has some better advice (It actually is a great question). Also, if/when you do go to National Jewish I would love to converse with you on what they say about their knowledge about the M.A.

(also sometimes even with a bit of decline in FEV1, though not as drastic as Andrews, my docs take a break on treating the M.A. just b/c of resistance issues, did your docs mention anything to you about that as to why they pulled the picc even with lower decline?)

Gosh, I really hate to read about the drop with such a young guy not that its alarming, just sucks b/c I know he has the ABPA (which I dont) and just so many factors contributing to crappy lungs is depressing! Sometime I really hate CF.

theLostMiler · Feb 9, 2011

I wonder if Amy (save ferris) has some good tips since she has been to a couple different centers.

Otherwise, I can totally understand wanting to do this, and frankly, it sucks that your doctor hasnt already mentioned it. I found about National Jewish, through my doctors, and my Infectious Disease doctor (on my team) actually was the one who called the doctors there, to get advice on how to treat me (just a simple question as to whether continue ivs for one month or two).

He even said I was welcome to go for a consultation there if I felt the need, I didnt b/c I felt confident with his communication and their relationships together.

Is there any way you could just suggest since they are the experts on this thing, that you are thinking for just that aspect of his CF, you could get some advice or a consultation (I wouldnt say "second opinion"). I guess, what seems important is the wording.

Also, what if you just flat out explained what you did here, you trust his team, and all, but just want more on how to deal with the M.A. since it can be a serious bug. I mean, how can they feel offended when you are just trying to do whats best for Andrew? (I understand the world does not work as ideal as I would like either haha).

I hope someone else has some better advice (It actually is a great question). Also, if/when you do go to National Jewish I would love to converse with you on what they say about their knowledge about the M.A.

(also sometimes even with a bit of decline in FEV1, though not as drastic as Andrews, my docs take a break on treating the M.A. just b/c of resistance issues, did your docs mention anything to you about that as to why they pulled the picc even with lower decline?)

Gosh, I really hate to read about the drop with such a young guy not that its alarming, just sucks b/c I know he has the ABPA (which I dont) and just so many factors contributing to crappy lungs is depressing! Sometime I really hate CF.

theLostMiler · Feb 9, 2011

I wonder if Amy (save ferris) has some good tips since she has been to a couple different centers.
 
 Otherwise, I can totally understand wanting to do this, and frankly, it sucks that your doctor hasnt already mentioned it. I found about National Jewish, through my doctors, and my Infectious Disease doctor (on my team) actually was the one who called the doctors there, to get advice on how to treat me (just a simple question as to whether continue ivs for one month or two).
 
 He even said I was welcome to go for a consultation there if I felt the need, I didnt b/c I felt confident with his communication and their relationships together.
 
 Is there any way you could just suggest since they are the experts on this thing, that you are thinking for just that aspect of his CF, you could get some advice or a consultation (I wouldnt say "second opinion"). I guess, what seems important is the wording.
 
 Also, what if you just flat out explained what you did here, you trust his team, and all, but just want more on how to deal with the M.A. since it can be a serious bug. I mean, how can they feel offended when you are just trying to do whats best for Andrew? (I understand the world does not work as ideal as I would like either haha).
 
 I hope someone else has some better advice (It actually is a great question). Also, if/when you do go to National Jewish I would love to converse with you on what they say about their knowledge about the M.A.
 
 (also sometimes even with a bit of decline in FEV1, though not as drastic as Andrews, my docs take a break on treating the M.A. just b/c of resistance issues, did your docs mention anything to you about that as to why they pulled the picc even with lower decline?)
 
 Gosh, I really hate to read about the drop with such a young guy not that its alarming, just sucks b/c I know he has the ABPA (which I dont) and just so many factors contributing to crappy lungs is depressing! Sometime I really hate CF.

tesorotiffa · Feb 9, 2011

In 2009 I pretty much couldn't stay off of ivs. My lung function dropped about 20% and my doctor couldn't figure out why. We switched up ivs, did a bronch (I wasn't culturing anything new), did 2 sinus surgeries. We were all at wits end. We told her we were scheduling a visit to National Jewish, and we were a little concerned that she wouldn't react well... but she was all for it. She said she just had no clue as to what was going on, and she volunteered to make us a binder with all of my PFTs and information.

Eventually we talked my doc into putting me on Prednisone, she agreed hesitantly, but guess what... we never had to go to National Jewish. I haven't been back in the hospital in over a year.

I guess what I'm saying is that it's your son's health. You have to be his number 1 advocate, and you have every right to want/get a second opinion. You just never know what National Jewish will have to say about his condition. Hopefully his doctor will be supportive in your decision, and I bet you will find that he will.

. Good luck!

tesorotiffa · Feb 9, 2011

In 2009 I pretty much couldn't stay off of ivs. My lung function dropped about 20% and my doctor couldn't figure out why. We switched up ivs, did a bronch (I wasn't culturing anything new), did 2 sinus surgeries. We were all at wits end. We told her we were scheduling a visit to National Jewish, and we were a little concerned that she wouldn't react well... but she was all for it. She said she just had no clue as to what was going on, and she volunteered to make us a binder with all of my PFTs and information.

Eventually we talked my doc into putting me on Prednisone, she agreed hesitantly, but guess what... we never had to go to National Jewish. I haven't been back in the hospital in over a year.

I guess what I'm saying is that it's your son's health. You have to be his number 1 advocate, and you have every right to want/get a second opinion. You just never know what National Jewish will have to say about his condition. Hopefully his doctor will be supportive in your decision, and I bet you will find that he will.

. Good luck!

tesorotiffa · Feb 9, 2011

In 2009 I pretty much couldn't stay off of ivs. My lung function dropped about 20% and my doctor couldn't figure out why. We switched up ivs, did a bronch (I wasn't culturing anything new), did 2 sinus surgeries. We were all at wits end. We told her we were scheduling a visit to National Jewish, and we were a little concerned that she wouldn't react well... but she was all for it. She said she just had no clue as to what was going on, and she volunteered to make us a binder with all of my PFTs and information.
 
 Eventually we talked my doc into putting me on Prednisone, she agreed hesitantly, but guess what... we never had to go to National Jewish. I haven't been back in the hospital in over a year.
 
 I guess what I'm saying is that it's your son's health. You have to be his number 1 advocate, and you have every right to want/get a second opinion. You just never know what National Jewish will have to say about his condition. Hopefully his doctor will be supportive in your decision, and I bet you will find that he will.

. Good luck!

PatrickM · Feb 9, 2011

I agree you shouldn't hesitate to get a second opinion and I really do not believe your doctor will be offended.

Two years ago my son was having a hard time and nothing we did consistently helped him. We told our doctor who had treated my sons since his diagnosis 12 years prior that we needed to get a second opinion to be sure we were doing everything for our son. He totally understood. I had a doctor in mind that I wanted to see but I bet you could even ask your doctor who he/she would recommend for a second opinion, you'd be surprised it is a small CF medical community and your doc may say well you should go see this MD who has experience with mycobacterium. We actually ended up going back to the doctor who we consulted with again after another 10 months and then we switched doctors and clinics at the same time our doctor was being hired by the clinic and doctor we switched to! Talk about awkward, but they see this stuff all the time. I know you feel uncomfortable and we did too. We needed a lot of encouragement from family and friends to get up the guts to tell our doctor we weren't happy with him, because we really did like him, we just weren't making any progress health wise. Now that I have been through it I wouldn't hesitate in the future to get another opinion. This is your child and you can always say that, everyone understands a parent who is only trying to do the best for their child.

As for medical records I did bring the past years worth of records. I would think cultures etc would be important. The consult doctor didn't look over the records, I verbally filled him in on most stuff.

I hope this helped.

Tara

PatrickM · Feb 9, 2011

I agree you shouldn't hesitate to get a second opinion and I really do not believe your doctor will be offended.

Two years ago my son was having a hard time and nothing we did consistently helped him. We told our doctor who had treated my sons since his diagnosis 12 years prior that we needed to get a second opinion to be sure we were doing everything for our son. He totally understood. I had a doctor in mind that I wanted to see but I bet you could even ask your doctor who he/she would recommend for a second opinion, you'd be surprised it is a small CF medical community and your doc may say well you should go see this MD who has experience with mycobacterium. We actually ended up going back to the doctor who we consulted with again after another 10 months and then we switched doctors and clinics at the same time our doctor was being hired by the clinic and doctor we switched to! Talk about awkward, but they see this stuff all the time. I know you feel uncomfortable and we did too. We needed a lot of encouragement from family and friends to get up the guts to tell our doctor we weren't happy with him, because we really did like him, we just weren't making any progress health wise. Now that I have been through it I wouldn't hesitate in the future to get another opinion. This is your child and you can always say that, everyone understands a parent who is only trying to do the best for their child.

As for medical records I did bring the past years worth of records. I would think cultures etc would be important. The consult doctor didn't look over the records, I verbally filled him in on most stuff.

I hope this helped.

Tara

PatrickM · Feb 9, 2011

I agree you shouldn't hesitate to get a second opinion and I really do not believe your doctor will be offended.
 
 Two years ago my son was having a hard time and nothing we did consistently helped him. We told our doctor who had treated my sons since his diagnosis 12 years prior that we needed to get a second opinion to be sure we were doing everything for our son. He totally understood. I had a doctor in mind that I wanted to see but I bet you could even ask your doctor who he/she would recommend for a second opinion, you'd be surprised it is a small CF medical community and your doc may say well you should go see this MD who has experience with mycobacterium. We actually ended up going back to the doctor who we consulted with again after another 10 months and then we switched doctors and clinics at the same time our doctor was being hired by the clinic and doctor we switched to! Talk about awkward, but they see this stuff all the time. I know you feel uncomfortable and we did too. We needed a lot of encouragement from family and friends to get up the guts to tell our doctor we weren't happy with him, because we really did like him, we just weren't making any progress health wise. Now that I have been through it I wouldn't hesitate in the future to get another opinion. This is your child and you can always say that, everyone understands a parent who is only trying to do the best for their child.
 
 As for medical records I did bring the past years worth of records. I would think cultures etc would be important. The consult doctor didn't look over the records, I verbally filled him in on most stuff.
 
 I hope this helped.
 
 Tara

edan · Feb 9, 2011

Hi Tonya.

I think that you are doing a great thing by getting a second opinion for your son. It is your "mother's instinct". My daughter was diagnosed in May at age 3. Totally symptomless. Does not culture anything (except occassionally H. FLU). Yet I flew across the country to another clinic just to get a second opinion on her "daily treatment" protocol. The doctor who met with me had recently transferred from Jewish<img src="i/expressions/face-icon-small-smile.gif" border="0">

When I told her existing CF team of my plans, the doctor (who is an excellent, highly regarded CF pulmonologist) encouraged me to go, and gave a few more clinic names to me that he thought were well respected.

The "second opinion" clinic requested (actually insisted) that I have my daughter's entire file faxed/mailed to them prior to seeing me. I also had a copy sent to myself. It was only 20 dollars, but didn't included the actual xray images (not sure if they need those or not).

Good luck!

Edan

edan · Feb 9, 2011

Hi Tonya.

I think that you are doing a great thing by getting a second opinion for your son. It is your "mother's instinct". My daughter was diagnosed in May at age 3. Totally symptomless. Does not culture anything (except occassionally H. FLU). Yet I flew across the country to another clinic just to get a second opinion on her "daily treatment" protocol. The doctor who met with me had recently transferred from Jewish<img src="i/expressions/face-icon-small-smile.gif" border="0">

When I told her existing CF team of my plans, the doctor (who is an excellent, highly regarded CF pulmonologist) encouraged me to go, and gave a few more clinic names to me that he thought were well respected.

The "second opinion" clinic requested (actually insisted) that I have my daughter's entire file faxed/mailed to them prior to seeing me. I also had a copy sent to myself. It was only 20 dollars, but didn't included the actual xray images (not sure if they need those or not).

Good luck!

Edan

edan · Feb 9, 2011

Hi Tonya.
 
 I think that you are doing a great thing by getting a second opinion for your son. It is your "mother's instinct". My daughter was diagnosed in May at age 3. Totally symptomless. Does not culture anything (except occassionally H. FLU). Yet I flew across the country to another clinic just to get a second opinion on her "daily treatment" protocol. The doctor who met with me had recently transferred from Jewish<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
 When I told her existing CF team of my plans, the doctor (who is an excellent, highly regarded CF pulmonologist) encouraged me to go, and gave a few more clinic names to me that he thought were well respected.
 
 The "second opinion" clinic requested (actually insisted) that I have my daughter's entire file faxed/mailed to them prior to seeing me. I also had a copy sent to myself. It was only 20 dollars, but didn't included the actual xray images (not sure if they need those or not).
 
 Good luck!
 
 Edan

How to get a second opinion?

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