Evaluation dates set

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dewgirl

New member
It's alot of appointments but it really helps clarify what you want to ask and get you moving in the right frame of mind.

I was worried about the social worker appointment because my husband is the only family I have for a support system. I guess when you've been married as long as we have, 16 years as well, they don't worry to much with a chance of a break up right when you need your caretaker.


Good luck!

Oh, a word of advice. When they do your left and right heart cath tests, make sure they give you some meds for relaxation. Most places do give meds to people. And some places don't test both the left and right sides of your heart. Mayo gave me meds for the groin cath but not when they went in my neck. Which was extremely creepy and I should have been given some. That's about the only pre-test advice I can think of.
 
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dewgirl

New member
It's alot of appointments but it really helps clarify what you want to ask and get you moving in the right frame of mind.

I was worried about the social worker appointment because my husband is the only family I have for a support system. I guess when you've been married as long as we have, 16 years as well, they don't worry to much with a chance of a break up right when you need your caretaker.


Good luck!

Oh, a word of advice. When they do your left and right heart cath tests, make sure they give you some meds for relaxation. Most places do give meds to people. And some places don't test both the left and right sides of your heart. Mayo gave me meds for the groin cath but not when they went in my neck. Which was extremely creepy and I should have been given some. That's about the only pre-test advice I can think of.
 
D

dewgirl

New member
It's alot of appointments but it really helps clarify what you want to ask and get you moving in the right frame of mind.

I was worried about the social worker appointment because my husband is the only family I have for a support system. I guess when you've been married as long as we have, 16 years as well, they don't worry to much with a chance of a break up right when you need your caretaker.


Good luck!

Oh, a word of advice. When they do your left and right heart cath tests, make sure they give you some meds for relaxation. Most places do give meds to people. And some places don't test both the left and right sides of your heart. Mayo gave me meds for the groin cath but not when they went in my neck. Which was extremely creepy and I should have been given some. That's about the only pre-test advice I can think of.
 
D

dewgirl

New member
It's alot of appointments but it really helps clarify what you want to ask and get you moving in the right frame of mind.

I was worried about the social worker appointment because my husband is the only family I have for a support system. I guess when you've been married as long as we have, 16 years as well, they don't worry to much with a chance of a break up right when you need your caretaker.


Good luck!

Oh, a word of advice. When they do your left and right heart cath tests, make sure they give you some meds for relaxation. Most places do give meds to people. And some places don't test both the left and right sides of your heart. Mayo gave me meds for the groin cath but not when they went in my neck. Which was extremely creepy and I should have been given some. That's about the only pre-test advice I can think of.
 
D

dewgirl

New member
It's alot of appointments but it really helps clarify what you want to ask and get you moving in the right frame of mind.
<br />
<br />I was worried about the social worker appointment because my husband is the only family I have for a support system. I guess when you've been married as long as we have, 16 years as well, they don't worry to much with a chance of a break up right when you need your caretaker.
<br />
<br />
<br />Good luck!
<br />
<br />Oh, a word of advice. When they do your left and right heart cath tests, make sure they give you some meds for relaxation. Most places do give meds to people. And some places don't test both the left and right sides of your heart. Mayo gave me meds for the groin cath but not when they went in my neck. Which was extremely creepy and I should have been given some. That's about the only pre-test advice I can think of.
 
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NYCLawGirl

New member
Agree with Dewgirl -- I only had the right heart cath through my neck but they didn't give me anything b/c they said CFers are tough. True, and I've never had a problem with medical tests before, including some scary/uncomfortable ones. But I needed something to relax during the heart cath. There was a minor technical issue that caused a pretty scary moment and even a tiny bit of ativan or whatever would have gone a long way.

As for your wife needing to be there every day, it depends. Heart cath day she needs to be there (or someone does to drive you home). Any day that you will be going through more than a few hours of testing you should probably arrange for someone to help you get home if it's a long drive -- you will be tired and it might be a little overwhelming. It may be that your center can schedule the heart cath and social worker/psychiatrist visits on the same day, which could mean that your wife would be off the hook for the other days. I know at my center it was important to have your support team (at least the primary member) present at: the social worker visit, the psychiatrist, and the initial visit with the tx pulmonologist. The other days it was pretty much fine for someone just to pick me up (or I could have had someone else besides my main support come along).

My center also wants you to have someone present at all transplant check-ups, but it's okay to switch around who comes. I've had my mom (primary support), my sister, my boyfriend, and even once my aunt who was in visiting. Just another pair of ears to listen and be there to support me.
 
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NYCLawGirl

New member
Agree with Dewgirl -- I only had the right heart cath through my neck but they didn't give me anything b/c they said CFers are tough. True, and I've never had a problem with medical tests before, including some scary/uncomfortable ones. But I needed something to relax during the heart cath. There was a minor technical issue that caused a pretty scary moment and even a tiny bit of ativan or whatever would have gone a long way.

As for your wife needing to be there every day, it depends. Heart cath day she needs to be there (or someone does to drive you home). Any day that you will be going through more than a few hours of testing you should probably arrange for someone to help you get home if it's a long drive -- you will be tired and it might be a little overwhelming. It may be that your center can schedule the heart cath and social worker/psychiatrist visits on the same day, which could mean that your wife would be off the hook for the other days. I know at my center it was important to have your support team (at least the primary member) present at: the social worker visit, the psychiatrist, and the initial visit with the tx pulmonologist. The other days it was pretty much fine for someone just to pick me up (or I could have had someone else besides my main support come along).

My center also wants you to have someone present at all transplant check-ups, but it's okay to switch around who comes. I've had my mom (primary support), my sister, my boyfriend, and even once my aunt who was in visiting. Just another pair of ears to listen and be there to support me.
 
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NYCLawGirl

New member
Agree with Dewgirl -- I only had the right heart cath through my neck but they didn't give me anything b/c they said CFers are tough. True, and I've never had a problem with medical tests before, including some scary/uncomfortable ones. But I needed something to relax during the heart cath. There was a minor technical issue that caused a pretty scary moment and even a tiny bit of ativan or whatever would have gone a long way.

As for your wife needing to be there every day, it depends. Heart cath day she needs to be there (or someone does to drive you home). Any day that you will be going through more than a few hours of testing you should probably arrange for someone to help you get home if it's a long drive -- you will be tired and it might be a little overwhelming. It may be that your center can schedule the heart cath and social worker/psychiatrist visits on the same day, which could mean that your wife would be off the hook for the other days. I know at my center it was important to have your support team (at least the primary member) present at: the social worker visit, the psychiatrist, and the initial visit with the tx pulmonologist. The other days it was pretty much fine for someone just to pick me up (or I could have had someone else besides my main support come along).

My center also wants you to have someone present at all transplant check-ups, but it's okay to switch around who comes. I've had my mom (primary support), my sister, my boyfriend, and even once my aunt who was in visiting. Just another pair of ears to listen and be there to support me.
 
N

NYCLawGirl

New member
Agree with Dewgirl -- I only had the right heart cath through my neck but they didn't give me anything b/c they said CFers are tough. True, and I've never had a problem with medical tests before, including some scary/uncomfortable ones. But I needed something to relax during the heart cath. There was a minor technical issue that caused a pretty scary moment and even a tiny bit of ativan or whatever would have gone a long way.

As for your wife needing to be there every day, it depends. Heart cath day she needs to be there (or someone does to drive you home). Any day that you will be going through more than a few hours of testing you should probably arrange for someone to help you get home if it's a long drive -- you will be tired and it might be a little overwhelming. It may be that your center can schedule the heart cath and social worker/psychiatrist visits on the same day, which could mean that your wife would be off the hook for the other days. I know at my center it was important to have your support team (at least the primary member) present at: the social worker visit, the psychiatrist, and the initial visit with the tx pulmonologist. The other days it was pretty much fine for someone just to pick me up (or I could have had someone else besides my main support come along).

My center also wants you to have someone present at all transplant check-ups, but it's okay to switch around who comes. I've had my mom (primary support), my sister, my boyfriend, and even once my aunt who was in visiting. Just another pair of ears to listen and be there to support me.
 
N

NYCLawGirl

New member
Agree with Dewgirl -- I only had the right heart cath through my neck but they didn't give me anything b/c they said CFers are tough. True, and I've never had a problem with medical tests before, including some scary/uncomfortable ones. But I needed something to relax during the heart cath. There was a minor technical issue that caused a pretty scary moment and even a tiny bit of ativan or whatever would have gone a long way.
<br />
<br />As for your wife needing to be there every day, it depends. Heart cath day she needs to be there (or someone does to drive you home). Any day that you will be going through more than a few hours of testing you should probably arrange for someone to help you get home if it's a long drive -- you will be tired and it might be a little overwhelming. It may be that your center can schedule the heart cath and social worker/psychiatrist visits on the same day, which could mean that your wife would be off the hook for the other days. I know at my center it was important to have your support team (at least the primary member) present at: the social worker visit, the psychiatrist, and the initial visit with the tx pulmonologist. The other days it was pretty much fine for someone just to pick me up (or I could have had someone else besides my main support come along).
<br />
<br />My center also wants you to have someone present at all transplant check-ups, but it's okay to switch around who comes. I've had my mom (primary support), my sister, my boyfriend, and even once my aunt who was in visiting. Just another pair of ears to listen and be there to support me.
 
F

fahrjr

New member
Thank you everyone for the advice, I will definitely need something to relax. I wonder if they usually have something there or if I need to prompt them before I get there.

I know Denise (wife, primary support person) wants to be there for the three days, but we were trying to be cognizant of all the time she may be missing from work soon.
 
F

fahrjr

New member
Thank you everyone for the advice, I will definitely need something to relax. I wonder if they usually have something there or if I need to prompt them before I get there.

I know Denise (wife, primary support person) wants to be there for the three days, but we were trying to be cognizant of all the time she may be missing from work soon.
 
F

fahrjr

New member
Thank you everyone for the advice, I will definitely need something to relax. I wonder if they usually have something there or if I need to prompt them before I get there.

I know Denise (wife, primary support person) wants to be there for the three days, but we were trying to be cognizant of all the time she may be missing from work soon.
 
F

fahrjr

New member
Thank you everyone for the advice, I will definitely need something to relax. I wonder if they usually have something there or if I need to prompt them before I get there.

I know Denise (wife, primary support person) wants to be there for the three days, but we were trying to be cognizant of all the time she may be missing from work soon.
 
F

fahrjr

New member
Thank you everyone for the advice, I will definitely need something to relax. I wonder if they usually have something there or if I need to prompt them before I get there.
<br />
<br />I know Denise (wife, primary support person) wants to be there for the three days, but we were trying to be cognizant of all the time she may be missing from work soon.
 
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wifeoffahrjr

New member
@ dewgirl
<br />I'm fahrjr's wife (Denise). Does your husband ever post on this forum? I would love to chat with a spouse/caregiver!
 
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