Initial tx consult/evaluation

[NYCLawGirl]

So I have my initial evaluation scheduled for May 9th. I am trying to get on the inactive list (my lung function is still around 38% on average), but I'm still nervous about the testing. Anyone have any advice on what sorts of questions to ask, what to be on the lookout for in a good tx center, etc? I want to go into this as informed as possible.

I am going to NYC's Columbia Presbyterian if anyone has any specific experience there. ANY help is appreciated!

Thanks!

 

[NYCLawGirl]

So I have my initial evaluation scheduled for May 9th. I am trying to get on the inactive list (my lung function is still around 38% on average), but I'm still nervous about the testing. Anyone have any advice on what sorts of questions to ask, what to be on the lookout for in a good tx center, etc? I want to go into this as informed as possible.

I am going to NYC's Columbia Presbyterian if anyone has any specific experience there. ANY help is appreciated!

Thanks!

 

[NYCLawGirl]

So I have my initial evaluation scheduled for May 9th. I am trying to get on the inactive list (my lung function is still around 38% on average), but I'm still nervous about the testing. Anyone have any advice on what sorts of questions to ask, what to be on the lookout for in a good tx center, etc? I want to go into this as informed as possible.

I am going to NYC's Columbia Presbyterian if anyone has any specific experience there. ANY help is appreciated!

Thanks!

 

[NYCLawGirl]

So I have my initial evaluation scheduled for May 9th. I am trying to get on the inactive list (my lung function is still around 38% on average), but I'm still nervous about the testing. Anyone have any advice on what sorts of questions to ask, what to be on the lookout for in a good tx center, etc? I want to go into this as informed as possible.

I am going to NYC's Columbia Presbyterian if anyone has any specific experience there. ANY help is appreciated!

Thanks!

 

[NYCLawGirl]

So I have my initial evaluation scheduled for May 9th. I am trying to get on the inactive list (my lung function is still around 38% on average), but I'm still nervous about the testing. Anyone have any advice on what sorts of questions to ask, what to be on the lookout for in a good tx center, etc? I want to go into this as informed as possible.
<br />
<br />I am going to NYC's Columbia Presbyterian if anyone has any specific experience there. ANY help is appreciated!
<br />
<br />Thanks!

 

[coltsfan715]

Ask any and every question you think of - SERIOUSLY. Then in my opinion if they are giving you a hard time about your asking questions - then seriously ask yourself why they are being inpatient and how they may be in regards to your long term care.

My first appointment I asked everything from what is rejection to can I dye my hair afterwards?

As for the testing - I am not going to lie it wasn't the most pleasant thing I have ever experienced. The tests range there are about 5 major tests - like a heart catheterization that to me was the worst and most involved, a V/Q perfusion scan, a bone density scan, echocardiograhm, electrocardiogram, labwork, PFTs (the works - in the box and so on), xrays, tons of docs appts. (infectious disease, transplant docs, surgeon, social worker, psychologist, financial counselor and so on) and maybe some immunizations.

I know that is most of what I went through when I was evaluated at my center. It may be different elsewhere.

I say just start keeping a list of questions you think of - keep a journal with you and as you think of things just write them down. I did that for about a month before my appointments. I also asked my family and fiance if there was anything THEY were curious about and wanted me to ask. They may think of different things than you or have different concerns. Then about a day or so before my evaluation and appt with the transplant doc I typed up all my questions - 4 pages worth when I was done - and printed them out with space to write answers. I asked EVERY question at that appt. I met with a nurse for about 1 hour and the doc for another hr.

I would also ask them how patients in your age range do with similar circumstances to you - meaning disease state and sex and stuff like that - if you have diabetes then diabetics and so on. I personally was freaked out because my centers numbers are lower than the norm. I asked about it and then realized that Mayo does a LOT of patients that no other center will take or they took them and then booted them because they got "TOO" sick or some other something. Then the fact that the transplant doc was confident enough to tell me to go to other centers and check them out helped me feel confident with where I had chosen to go the first time around.

but YES ASK EVERYTHING that YOU think is important - regardless of how silly it may sound. If it is important to you then it is worth asking.

Best of Luck with the Evaluation I hope you get the results you are looking for.

Love Lindsey

 

[coltsfan715]

Ask any and every question you think of - SERIOUSLY. Then in my opinion if they are giving you a hard time about your asking questions - then seriously ask yourself why they are being inpatient and how they may be in regards to your long term care.

My first appointment I asked everything from what is rejection to can I dye my hair afterwards?

As for the testing - I am not going to lie it wasn't the most pleasant thing I have ever experienced. The tests range there are about 5 major tests - like a heart catheterization that to me was the worst and most involved, a V/Q perfusion scan, a bone density scan, echocardiograhm, electrocardiogram, labwork, PFTs (the works - in the box and so on), xrays, tons of docs appts. (infectious disease, transplant docs, surgeon, social worker, psychologist, financial counselor and so on) and maybe some immunizations.

I know that is most of what I went through when I was evaluated at my center. It may be different elsewhere.

I say just start keeping a list of questions you think of - keep a journal with you and as you think of things just write them down. I did that for about a month before my appointments. I also asked my family and fiance if there was anything THEY were curious about and wanted me to ask. They may think of different things than you or have different concerns. Then about a day or so before my evaluation and appt with the transplant doc I typed up all my questions - 4 pages worth when I was done - and printed them out with space to write answers. I asked EVERY question at that appt. I met with a nurse for about 1 hour and the doc for another hr.

I would also ask them how patients in your age range do with similar circumstances to you - meaning disease state and sex and stuff like that - if you have diabetes then diabetics and so on. I personally was freaked out because my centers numbers are lower than the norm. I asked about it and then realized that Mayo does a LOT of patients that no other center will take or they took them and then booted them because they got "TOO" sick or some other something. Then the fact that the transplant doc was confident enough to tell me to go to other centers and check them out helped me feel confident with where I had chosen to go the first time around.

but YES ASK EVERYTHING that YOU think is important - regardless of how silly it may sound. If it is important to you then it is worth asking.

Best of Luck with the Evaluation I hope you get the results you are looking for.

Love Lindsey

 

[coltsfan715]

Ask any and every question you think of - SERIOUSLY. Then in my opinion if they are giving you a hard time about your asking questions - then seriously ask yourself why they are being inpatient and how they may be in regards to your long term care.

My first appointment I asked everything from what is rejection to can I dye my hair afterwards?

As for the testing - I am not going to lie it wasn't the most pleasant thing I have ever experienced. The tests range there are about 5 major tests - like a heart catheterization that to me was the worst and most involved, a V/Q perfusion scan, a bone density scan, echocardiograhm, electrocardiogram, labwork, PFTs (the works - in the box and so on), xrays, tons of docs appts. (infectious disease, transplant docs, surgeon, social worker, psychologist, financial counselor and so on) and maybe some immunizations.

I know that is most of what I went through when I was evaluated at my center. It may be different elsewhere.

I say just start keeping a list of questions you think of - keep a journal with you and as you think of things just write them down. I did that for about a month before my appointments. I also asked my family and fiance if there was anything THEY were curious about and wanted me to ask. They may think of different things than you or have different concerns. Then about a day or so before my evaluation and appt with the transplant doc I typed up all my questions - 4 pages worth when I was done - and printed them out with space to write answers. I asked EVERY question at that appt. I met with a nurse for about 1 hour and the doc for another hr.

I would also ask them how patients in your age range do with similar circumstances to you - meaning disease state and sex and stuff like that - if you have diabetes then diabetics and so on. I personally was freaked out because my centers numbers are lower than the norm. I asked about it and then realized that Mayo does a LOT of patients that no other center will take or they took them and then booted them because they got "TOO" sick or some other something. Then the fact that the transplant doc was confident enough to tell me to go to other centers and check them out helped me feel confident with where I had chosen to go the first time around.

but YES ASK EVERYTHING that YOU think is important - regardless of how silly it may sound. If it is important to you then it is worth asking.

Best of Luck with the Evaluation I hope you get the results you are looking for.

Love Lindsey

 

[coltsfan715]

Ask any and every question you think of - SERIOUSLY. Then in my opinion if they are giving you a hard time about your asking questions - then seriously ask yourself why they are being inpatient and how they may be in regards to your long term care.

My first appointment I asked everything from what is rejection to can I dye my hair afterwards?

As for the testing - I am not going to lie it wasn't the most pleasant thing I have ever experienced. The tests range there are about 5 major tests - like a heart catheterization that to me was the worst and most involved, a V/Q perfusion scan, a bone density scan, echocardiograhm, electrocardiogram, labwork, PFTs (the works - in the box and so on), xrays, tons of docs appts. (infectious disease, transplant docs, surgeon, social worker, psychologist, financial counselor and so on) and maybe some immunizations.

I know that is most of what I went through when I was evaluated at my center. It may be different elsewhere.

I say just start keeping a list of questions you think of - keep a journal with you and as you think of things just write them down. I did that for about a month before my appointments. I also asked my family and fiance if there was anything THEY were curious about and wanted me to ask. They may think of different things than you or have different concerns. Then about a day or so before my evaluation and appt with the transplant doc I typed up all my questions - 4 pages worth when I was done - and printed them out with space to write answers. I asked EVERY question at that appt. I met with a nurse for about 1 hour and the doc for another hr.

I would also ask them how patients in your age range do with similar circumstances to you - meaning disease state and sex and stuff like that - if you have diabetes then diabetics and so on. I personally was freaked out because my centers numbers are lower than the norm. I asked about it and then realized that Mayo does a LOT of patients that no other center will take or they took them and then booted them because they got "TOO" sick or some other something. Then the fact that the transplant doc was confident enough to tell me to go to other centers and check them out helped me feel confident with where I had chosen to go the first time around.

but YES ASK EVERYTHING that YOU think is important - regardless of how silly it may sound. If it is important to you then it is worth asking.

Best of Luck with the Evaluation I hope you get the results you are looking for.

Love Lindsey

 

[coltsfan715]

Ask any and every question you think of - SERIOUSLY. Then in my opinion if they are giving you a hard time about your asking questions - then seriously ask yourself why they are being inpatient and how they may be in regards to your long term care.
<br />
<br />My first appointment I asked everything from what is rejection to can I dye my hair afterwards?
<br />
<br />As for the testing - I am not going to lie it wasn't the most pleasant thing I have ever experienced. The tests range there are about 5 major tests - like a heart catheterization that to me was the worst and most involved, a V/Q perfusion scan, a bone density scan, echocardiograhm, electrocardiogram, labwork, PFTs (the works - in the box and so on), xrays, tons of docs appts. (infectious disease, transplant docs, surgeon, social worker, psychologist, financial counselor and so on) and maybe some immunizations.
<br />
<br />I know that is most of what I went through when I was evaluated at my center. It may be different elsewhere.
<br />
<br />I say just start keeping a list of questions you think of - keep a journal with you and as you think of things just write them down. I did that for about a month before my appointments. I also asked my family and fiance if there was anything THEY were curious about and wanted me to ask. They may think of different things than you or have different concerns. Then about a day or so before my evaluation and appt with the transplant doc I typed up all my questions - 4 pages worth when I was done - and printed them out with space to write answers. I asked EVERY question at that appt. I met with a nurse for about 1 hour and the doc for another hr.
<br />
<br />I would also ask them how patients in your age range do with similar circumstances to you - meaning disease state and sex and stuff like that - if you have diabetes then diabetics and so on. I personally was freaked out because my centers numbers are lower than the norm. I asked about it and then realized that Mayo does a LOT of patients that no other center will take or they took them and then booted them because they got "TOO" sick or some other something. Then the fact that the transplant doc was confident enough to tell me to go to other centers and check them out helped me feel confident with where I had chosen to go the first time around.
<br />
<br />but YES ASK EVERYTHING that YOU think is important - regardless of how silly it may sound. If it is important to you then it is worth asking.
<br />
<br />Best of Luck with the Evaluation I hope you get the results you are looking for.
<br />
<br />Love Lindsey

 

[Breezy]

I second lindsey! i wrote down about 2 pages of questions and asked everyone and they were very happy that i was engaged in the process. Plus, the more you ask, shows them that you're serious about this and you also know they can't pull the wool over your eyes and try to give u back answers. It shows them that you're willing to educate yourself.

I asked about diabetes, the incision...just anything i had come to mind i wrote down immediately. You'll think of stuff!<img src="i/expressions/face-icon-small-smile.gif" border="0"> Good luck!

 

[Breezy]

I second lindsey! i wrote down about 2 pages of questions and asked everyone and they were very happy that i was engaged in the process. Plus, the more you ask, shows them that you're serious about this and you also know they can't pull the wool over your eyes and try to give u back answers. It shows them that you're willing to educate yourself.

I asked about diabetes, the incision...just anything i had come to mind i wrote down immediately. You'll think of stuff!<img src="i/expressions/face-icon-small-smile.gif" border="0"> Good luck!

 

[Breezy]

I second lindsey! i wrote down about 2 pages of questions and asked everyone and they were very happy that i was engaged in the process. Plus, the more you ask, shows them that you're serious about this and you also know they can't pull the wool over your eyes and try to give u back answers. It shows them that you're willing to educate yourself.

I asked about diabetes, the incision...just anything i had come to mind i wrote down immediately. You'll think of stuff!<img src="i/expressions/face-icon-small-smile.gif" border="0"> Good luck!

 

[Breezy]

I second lindsey! i wrote down about 2 pages of questions and asked everyone and they were very happy that i was engaged in the process. Plus, the more you ask, shows them that you're serious about this and you also know they can't pull the wool over your eyes and try to give u back answers. It shows them that you're willing to educate yourself.

I asked about diabetes, the incision...just anything i had come to mind i wrote down immediately. You'll think of stuff!<img src="i/expressions/face-icon-small-smile.gif" border="0"> Good luck!

 

[Breezy]

I second lindsey! i wrote down about 2 pages of questions and asked everyone and they were very happy that i was engaged in the process. Plus, the more you ask, shows them that you're serious about this and you also know they can't pull the wool over your eyes and try to give u back answers. It shows them that you're willing to educate yourself.
<br />
<br />I asked about diabetes, the incision...just anything i had come to mind i wrote down immediately. You'll think of stuff!<img src="i/expressions/face-icon-small-smile.gif" border="0"> Good luck!

 

[Skye]

Piper, I love your writing!! Good for you for being pro-active. You are in control. That is great. Advice that has not been given....I did a word document that had a list of all of my medications and amounts, list of all doctors names and contact information, and a self-bio. That was very helpful because all the visits you have you don't have to repeat all of that stuff. The self-bio put a face on the record. They love an organized candidate<img src="i/expressions/face-icon-small-smile.gif" border="0">

You will probably do a 6 minute walk so wear comfortable shoes. Bring as many of your own medical records as you have.

After you get through this whole process, set a goal for yourself to stay off of the active list! I have a goal of 7-10 years<img src="i/expressions/face-icon-small-smile.gif" border="0"> I know it may sound silly; but, goals are powerful and you would be surprised at how motivated you become. If you don't reach the goal, it is still not a bad one to shoot for. As a lawyer, I am sure you understand the power in setting goals. I think they will make some phenomal breakthroughs in the next five years and I don't want to miss out on those.

If you have any specific quesitons about testing, PM me or ask in chat. I would be happy to help.

 

[Skye]

Piper, I love your writing!! Good for you for being pro-active. You are in control. That is great. Advice that has not been given....I did a word document that had a list of all of my medications and amounts, list of all doctors names and contact information, and a self-bio. That was very helpful because all the visits you have you don't have to repeat all of that stuff. The self-bio put a face on the record. They love an organized candidate<img src="i/expressions/face-icon-small-smile.gif" border="0">

You will probably do a 6 minute walk so wear comfortable shoes. Bring as many of your own medical records as you have.

After you get through this whole process, set a goal for yourself to stay off of the active list! I have a goal of 7-10 years<img src="i/expressions/face-icon-small-smile.gif" border="0"> I know it may sound silly; but, goals are powerful and you would be surprised at how motivated you become. If you don't reach the goal, it is still not a bad one to shoot for. As a lawyer, I am sure you understand the power in setting goals. I think they will make some phenomal breakthroughs in the next five years and I don't want to miss out on those.

If you have any specific quesitons about testing, PM me or ask in chat. I would be happy to help.

 

[Skye]

Piper, I love your writing!! Good for you for being pro-active. You are in control. That is great. Advice that has not been given....I did a word document that had a list of all of my medications and amounts, list of all doctors names and contact information, and a self-bio. That was very helpful because all the visits you have you don't have to repeat all of that stuff. The self-bio put a face on the record. They love an organized candidate<img src="i/expressions/face-icon-small-smile.gif" border="0">

You will probably do a 6 minute walk so wear comfortable shoes. Bring as many of your own medical records as you have.

After you get through this whole process, set a goal for yourself to stay off of the active list! I have a goal of 7-10 years<img src="i/expressions/face-icon-small-smile.gif" border="0"> I know it may sound silly; but, goals are powerful and you would be surprised at how motivated you become. If you don't reach the goal, it is still not a bad one to shoot for. As a lawyer, I am sure you understand the power in setting goals. I think they will make some phenomal breakthroughs in the next five years and I don't want to miss out on those.

If you have any specific quesitons about testing, PM me or ask in chat. I would be happy to help.

 

[Skye]

Piper, I love your writing!! Good for you for being pro-active. You are in control. That is great. Advice that has not been given....I did a word document that had a list of all of my medications and amounts, list of all doctors names and contact information, and a self-bio. That was very helpful because all the visits you have you don't have to repeat all of that stuff. The self-bio put a face on the record. They love an organized candidate<img src="i/expressions/face-icon-small-smile.gif" border="0">

You will probably do a 6 minute walk so wear comfortable shoes. Bring as many of your own medical records as you have.

After you get through this whole process, set a goal for yourself to stay off of the active list! I have a goal of 7-10 years<img src="i/expressions/face-icon-small-smile.gif" border="0"> I know it may sound silly; but, goals are powerful and you would be surprised at how motivated you become. If you don't reach the goal, it is still not a bad one to shoot for. As a lawyer, I am sure you understand the power in setting goals. I think they will make some phenomal breakthroughs in the next five years and I don't want to miss out on those.

If you have any specific quesitons about testing, PM me or ask in chat. I would be happy to help.

 

[Skye]

Piper, I love your writing!! Good for you for being pro-active. You are in control. That is great. Advice that has not been given....I did a word document that had a list of all of my medications and amounts, list of all doctors names and contact information, and a self-bio. That was very helpful because all the visits you have you don't have to repeat all of that stuff. The self-bio put a face on the record. They love an organized candidate<img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />You will probably do a 6 minute walk so wear comfortable shoes. Bring as many of your own medical records as you have.
<br />
<br />After you get through this whole process, set a goal for yourself to stay off of the active list! I have a goal of 7-10 years<img src="i/expressions/face-icon-small-smile.gif" border="0"> I know it may sound silly; but, goals are powerful and you would be surprised at how motivated you become. If you don't reach the goal, it is still not a bad one to shoot for. As a lawyer, I am sure you understand the power in setting goals. I think they will make some phenomal breakthroughs in the next five years and I don't want to miss out on those.
<br />
<br />If you have any specific quesitons about testing, PM me or ask in chat. I would be happy to help.