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Pod Cast with Jerry Cahill
- Thread starter JennifersHope
- Start date
JennifersHope
New member
Thanks Lauren and everyone for input, since the interview is last minute.. we had to pick a topic yesterday. This is the topic.. Now I need questions for him to ask me.. Lauren I would like to tie in those questions you asked me as well, how do you think I could tie it in.. with the below topic.
How NOT to live your life or make decisions based on a disease you have. Go for the gusto in Life no matter what they say.
When I was diagnosed with CF I was 29 years old. In spite of always wanting to have children, I did not want to bring a child into the world, a world I assumed I would be leaving pretty quickly. I chose not to get married because I did not want to bring anyone into my situation and I also decided that I needed a career where I can work less and still support myself, so I decided to leave teaching and become a Registered Nurse. I was told by many doctors that if I was to go to nursing school it would make me so sick I would die. I did not listen to them. I was sick in school, on IVs more frequently and my cultures were more nasty but I graduated top of my class with nearly a 4.0. I was Class President and in three Honor Societies. I went on to become an Emergency Room Nurse, got certified in critical care, as well as adult and pediatric trauma. While I can not work to that capacity now, and I am on disability, I am on a program called the working disabled and I still work one day a week in a heart hospital.
We could briefly discuss me being dx at 29, The horrendous time I had accepting that I had this disease. Dealing with the treatments, the nebs and the dreaded Mr Thumper. AKA the vest. I did allow the diagnoses to dictate a lot of things in my life that I wish it didn't however, I am very glad that I went with my heart and still pursued my dreams. I am very happy and very fulfilled. I know a lot of CFers do not believe that there is going to be a cure, or that the new clinical trials are going to work. I never believed I would be undiagnosed with CF. I think we need to keep trudging along and live our lives in spite of the insurmountable obstacles that come our way.
(Basically any questions you can come up with within the realm of this topic would be super douper cool... I have to have it done tonight and I am brain dead and have a fever.....SMB.. save my butt.. please.. and help me come up with questions..
How NOT to live your life or make decisions based on a disease you have. Go for the gusto in Life no matter what they say.
When I was diagnosed with CF I was 29 years old. In spite of always wanting to have children, I did not want to bring a child into the world, a world I assumed I would be leaving pretty quickly. I chose not to get married because I did not want to bring anyone into my situation and I also decided that I needed a career where I can work less and still support myself, so I decided to leave teaching and become a Registered Nurse. I was told by many doctors that if I was to go to nursing school it would make me so sick I would die. I did not listen to them. I was sick in school, on IVs more frequently and my cultures were more nasty but I graduated top of my class with nearly a 4.0. I was Class President and in three Honor Societies. I went on to become an Emergency Room Nurse, got certified in critical care, as well as adult and pediatric trauma. While I can not work to that capacity now, and I am on disability, I am on a program called the working disabled and I still work one day a week in a heart hospital.
We could briefly discuss me being dx at 29, The horrendous time I had accepting that I had this disease. Dealing with the treatments, the nebs and the dreaded Mr Thumper. AKA the vest. I did allow the diagnoses to dictate a lot of things in my life that I wish it didn't however, I am very glad that I went with my heart and still pursued my dreams. I am very happy and very fulfilled. I know a lot of CFers do not believe that there is going to be a cure, or that the new clinical trials are going to work. I never believed I would be undiagnosed with CF. I think we need to keep trudging along and live our lives in spite of the insurmountable obstacles that come our way.
(Basically any questions you can come up with within the realm of this topic would be super douper cool... I have to have it done tonight and I am brain dead and have a fever.....SMB.. save my butt.. please.. and help me come up with questions..
JennifersHope
New member
Thanks Lauren and everyone for input, since the interview is last minute.. we had to pick a topic yesterday. This is the topic.. Now I need questions for him to ask me.. Lauren I would like to tie in those questions you asked me as well, how do you think I could tie it in.. with the below topic.
How NOT to live your life or make decisions based on a disease you have. Go for the gusto in Life no matter what they say.
When I was diagnosed with CF I was 29 years old. In spite of always wanting to have children, I did not want to bring a child into the world, a world I assumed I would be leaving pretty quickly. I chose not to get married because I did not want to bring anyone into my situation and I also decided that I needed a career where I can work less and still support myself, so I decided to leave teaching and become a Registered Nurse. I was told by many doctors that if I was to go to nursing school it would make me so sick I would die. I did not listen to them. I was sick in school, on IVs more frequently and my cultures were more nasty but I graduated top of my class with nearly a 4.0. I was Class President and in three Honor Societies. I went on to become an Emergency Room Nurse, got certified in critical care, as well as adult and pediatric trauma. While I can not work to that capacity now, and I am on disability, I am on a program called the working disabled and I still work one day a week in a heart hospital.
We could briefly discuss me being dx at 29, The horrendous time I had accepting that I had this disease. Dealing with the treatments, the nebs and the dreaded Mr Thumper. AKA the vest. I did allow the diagnoses to dictate a lot of things in my life that I wish it didn't however, I am very glad that I went with my heart and still pursued my dreams. I am very happy and very fulfilled. I know a lot of CFers do not believe that there is going to be a cure, or that the new clinical trials are going to work. I never believed I would be undiagnosed with CF. I think we need to keep trudging along and live our lives in spite of the insurmountable obstacles that come our way.
(Basically any questions you can come up with within the realm of this topic would be super douper cool... I have to have it done tonight and I am brain dead and have a fever.....SMB.. save my butt.. please.. and help me come up with questions..
How NOT to live your life or make decisions based on a disease you have. Go for the gusto in Life no matter what they say.
When I was diagnosed with CF I was 29 years old. In spite of always wanting to have children, I did not want to bring a child into the world, a world I assumed I would be leaving pretty quickly. I chose not to get married because I did not want to bring anyone into my situation and I also decided that I needed a career where I can work less and still support myself, so I decided to leave teaching and become a Registered Nurse. I was told by many doctors that if I was to go to nursing school it would make me so sick I would die. I did not listen to them. I was sick in school, on IVs more frequently and my cultures were more nasty but I graduated top of my class with nearly a 4.0. I was Class President and in three Honor Societies. I went on to become an Emergency Room Nurse, got certified in critical care, as well as adult and pediatric trauma. While I can not work to that capacity now, and I am on disability, I am on a program called the working disabled and I still work one day a week in a heart hospital.
We could briefly discuss me being dx at 29, The horrendous time I had accepting that I had this disease. Dealing with the treatments, the nebs and the dreaded Mr Thumper. AKA the vest. I did allow the diagnoses to dictate a lot of things in my life that I wish it didn't however, I am very glad that I went with my heart and still pursued my dreams. I am very happy and very fulfilled. I know a lot of CFers do not believe that there is going to be a cure, or that the new clinical trials are going to work. I never believed I would be undiagnosed with CF. I think we need to keep trudging along and live our lives in spite of the insurmountable obstacles that come our way.
(Basically any questions you can come up with within the realm of this topic would be super douper cool... I have to have it done tonight and I am brain dead and have a fever.....SMB.. save my butt.. please.. and help me come up with questions..
JennifersHope
New member
Thanks Lauren and everyone for input, since the interview is last minute.. we had to pick a topic yesterday. This is the topic.. Now I need questions for him to ask me.. Lauren I would like to tie in those questions you asked me as well, how do you think I could tie it in.. with the below topic.
<br />
<br />
<br />How NOT to live your life or make decisions based on a disease you have. Go for the gusto in Life no matter what they say.
<br />
<br />
<br />When I was diagnosed with CF I was 29 years old. In spite of always wanting to have children, I did not want to bring a child into the world, a world I assumed I would be leaving pretty quickly. I chose not to get married because I did not want to bring anyone into my situation and I also decided that I needed a career where I can work less and still support myself, so I decided to leave teaching and become a Registered Nurse. I was told by many doctors that if I was to go to nursing school it would make me so sick I would die. I did not listen to them. I was sick in school, on IVs more frequently and my cultures were more nasty but I graduated top of my class with nearly a 4.0. I was Class President and in three Honor Societies. I went on to become an Emergency Room Nurse, got certified in critical care, as well as adult and pediatric trauma. While I can not work to that capacity now, and I am on disability, I am on a program called the working disabled and I still work one day a week in a heart hospital.
<br />
<br />We could briefly discuss me being dx at 29, The horrendous time I had accepting that I had this disease. Dealing with the treatments, the nebs and the dreaded Mr Thumper. AKA the vest. I did allow the diagnoses to dictate a lot of things in my life that I wish it didn't however, I am very glad that I went with my heart and still pursued my dreams. I am very happy and very fulfilled. I know a lot of CFers do not believe that there is going to be a cure, or that the new clinical trials are going to work. I never believed I would be undiagnosed with CF. I think we need to keep trudging along and live our lives in spite of the insurmountable obstacles that come our way.
<br />
<br />
<br />
<br />(Basically any questions you can come up with within the realm of this topic would be super douper cool... I have to have it done tonight and I am brain dead and have a fever.....SMB.. save my butt.. please.. and help me come up with questions..
<br />
<br />
<br />How NOT to live your life or make decisions based on a disease you have. Go for the gusto in Life no matter what they say.
<br />
<br />
<br />When I was diagnosed with CF I was 29 years old. In spite of always wanting to have children, I did not want to bring a child into the world, a world I assumed I would be leaving pretty quickly. I chose not to get married because I did not want to bring anyone into my situation and I also decided that I needed a career where I can work less and still support myself, so I decided to leave teaching and become a Registered Nurse. I was told by many doctors that if I was to go to nursing school it would make me so sick I would die. I did not listen to them. I was sick in school, on IVs more frequently and my cultures were more nasty but I graduated top of my class with nearly a 4.0. I was Class President and in three Honor Societies. I went on to become an Emergency Room Nurse, got certified in critical care, as well as adult and pediatric trauma. While I can not work to that capacity now, and I am on disability, I am on a program called the working disabled and I still work one day a week in a heart hospital.
<br />
<br />We could briefly discuss me being dx at 29, The horrendous time I had accepting that I had this disease. Dealing with the treatments, the nebs and the dreaded Mr Thumper. AKA the vest. I did allow the diagnoses to dictate a lot of things in my life that I wish it didn't however, I am very glad that I went with my heart and still pursued my dreams. I am very happy and very fulfilled. I know a lot of CFers do not believe that there is going to be a cure, or that the new clinical trials are going to work. I never believed I would be undiagnosed with CF. I think we need to keep trudging along and live our lives in spite of the insurmountable obstacles that come our way.
<br />
<br />
<br />
<br />(Basically any questions you can come up with within the realm of this topic would be super douper cool... I have to have it done tonight and I am brain dead and have a fever.....SMB.. save my butt.. please.. and help me come up with questions..
JennifersHope
New member
I really like what you said though to Lauren..... hmmm
JennifersHope
New member
I really like what you said though to Lauren..... hmmm
JennifersHope
New member
I really like what you said though to Lauren..... hmmm
JennifersHope
New member
I am so super excited I can't stand it!!! I will let you know when the Podcast is up and running. I am going to do it this Wed night!!!!! I can't wait to tell my story....
JennifersHope
New member
I am so super excited I can't stand it!!! I will let you know when the Podcast is up and running. I am going to do it this Wed night!!!!! I can't wait to tell my story....
JennifersHope
New member
I am so super excited I can't stand it!!! I will let you know when the Podcast is up and running. I am going to do it this Wed night!!!!! I can't wait to tell my story....
Jennifershope, I also wanted to ask what was your score for the npd? My daughter was unable to finish it so they went thru with the colon tissue testing. I just wonder if they tested your colon tissue what the results would be. They test the function of the cftr gene in the colon tissue b/c the colon tissue is suppose to be similar to the tissue in your nose and lungs. I just wonder if it's more reliable than the npd and sweats.
Jennifershope, I also wanted to ask what was your score for the npd? My daughter was unable to finish it so they went thru with the colon tissue testing. I just wonder if they tested your colon tissue what the results would be. They test the function of the cftr gene in the colon tissue b/c the colon tissue is suppose to be similar to the tissue in your nose and lungs. I just wonder if it's more reliable than the npd and sweats.
Jennifershope, I also wanted to ask what was your score for the npd? My daughter was unable to finish it so they went thru with the colon tissue testing. I just wonder if they tested your colon tissue what the results would be. They test the function of the cftr gene in the colon tissue b/c the colon tissue is suppose to be similar to the tissue in your nose and lungs. I just wonder if it's more reliable than the npd and sweats.
JennifersHope
New member
The Nasal PD score is different for each person. So what my score was, ( which I don't remember at the moment) has nothing to do with what someone else may score. I Thank you for the good luck wishes. I am a little humbled to speak especially since most people on there that have spoke are CFers.
I don't know a think about colon tissue, I am however without a doubt pancreatic sufficient. Recently I have had a few people who I respect a great deal, that happen to be CFers speak to me about not sitting on the fence about not knowing what is wrong with me. It is hard for me to advocate for myself, my extreme people pleasing desire kicks in and I get the nagging feeling I don't want to be a pain
As I live right now, I am not able to or supposed to go anywhere, that my lungs or upper airway get a response to. Good luck interpreting that ... I sometimes can't even walk outside because if someone is using fabric softening in their dryer and it is blowing outside, I can't breathe.
Having a proper diagnoses is fast becoming my main goal. It was not before because it didn't seem to matter, It was I am CF free period.
I have asked UNC if they wanted to describe my gene, the q1330e, but I have not heard back, we don't even know if it is disease causing or not, since we don't know what side of the dna strand it was on. My parents are both 70 so I suggest they not wait forever.
I am currently in contact with National Jewish, I have spoke with Dr Nick there extensively, he actually spoke with my regular doctor and they are in agreement, but meanwhile, my symptoms since my last intubation have increased a lot, I have lost my ability to run, or exercise. Leaving my house it is a mystery as to what will happen, I am frustrated however, I will keep moving forward, I will keep pursuing my dreams to the best of my ability and actively pursue a proper diagnoses or at least find a way to have a slightly better quality of life.
I don't know a think about colon tissue, I am however without a doubt pancreatic sufficient. Recently I have had a few people who I respect a great deal, that happen to be CFers speak to me about not sitting on the fence about not knowing what is wrong with me. It is hard for me to advocate for myself, my extreme people pleasing desire kicks in and I get the nagging feeling I don't want to be a pain
As I live right now, I am not able to or supposed to go anywhere, that my lungs or upper airway get a response to. Good luck interpreting that ... I sometimes can't even walk outside because if someone is using fabric softening in their dryer and it is blowing outside, I can't breathe.
Having a proper diagnoses is fast becoming my main goal. It was not before because it didn't seem to matter, It was I am CF free period.
I have asked UNC if they wanted to describe my gene, the q1330e, but I have not heard back, we don't even know if it is disease causing or not, since we don't know what side of the dna strand it was on. My parents are both 70 so I suggest they not wait forever.
I am currently in contact with National Jewish, I have spoke with Dr Nick there extensively, he actually spoke with my regular doctor and they are in agreement, but meanwhile, my symptoms since my last intubation have increased a lot, I have lost my ability to run, or exercise. Leaving my house it is a mystery as to what will happen, I am frustrated however, I will keep moving forward, I will keep pursuing my dreams to the best of my ability and actively pursue a proper diagnoses or at least find a way to have a slightly better quality of life.
JennifersHope
New member
The Nasal PD score is different for each person. So what my score was, ( which I don't remember at the moment) has nothing to do with what someone else may score. I Thank you for the good luck wishes. I am a little humbled to speak especially since most people on there that have spoke are CFers.
I don't know a think about colon tissue, I am however without a doubt pancreatic sufficient. Recently I have had a few people who I respect a great deal, that happen to be CFers speak to me about not sitting on the fence about not knowing what is wrong with me. It is hard for me to advocate for myself, my extreme people pleasing desire kicks in and I get the nagging feeling I don't want to be a pain
As I live right now, I am not able to or supposed to go anywhere, that my lungs or upper airway get a response to. Good luck interpreting that ... I sometimes can't even walk outside because if someone is using fabric softening in their dryer and it is blowing outside, I can't breathe.
Having a proper diagnoses is fast becoming my main goal. It was not before because it didn't seem to matter, It was I am CF free period.
I have asked UNC if they wanted to describe my gene, the q1330e, but I have not heard back, we don't even know if it is disease causing or not, since we don't know what side of the dna strand it was on. My parents are both 70 so I suggest they not wait forever.
I am currently in contact with National Jewish, I have spoke with Dr Nick there extensively, he actually spoke with my regular doctor and they are in agreement, but meanwhile, my symptoms since my last intubation have increased a lot, I have lost my ability to run, or exercise. Leaving my house it is a mystery as to what will happen, I am frustrated however, I will keep moving forward, I will keep pursuing my dreams to the best of my ability and actively pursue a proper diagnoses or at least find a way to have a slightly better quality of life.
I don't know a think about colon tissue, I am however without a doubt pancreatic sufficient. Recently I have had a few people who I respect a great deal, that happen to be CFers speak to me about not sitting on the fence about not knowing what is wrong with me. It is hard for me to advocate for myself, my extreme people pleasing desire kicks in and I get the nagging feeling I don't want to be a pain
As I live right now, I am not able to or supposed to go anywhere, that my lungs or upper airway get a response to. Good luck interpreting that ... I sometimes can't even walk outside because if someone is using fabric softening in their dryer and it is blowing outside, I can't breathe.
Having a proper diagnoses is fast becoming my main goal. It was not before because it didn't seem to matter, It was I am CF free period.
I have asked UNC if they wanted to describe my gene, the q1330e, but I have not heard back, we don't even know if it is disease causing or not, since we don't know what side of the dna strand it was on. My parents are both 70 so I suggest they not wait forever.
I am currently in contact with National Jewish, I have spoke with Dr Nick there extensively, he actually spoke with my regular doctor and they are in agreement, but meanwhile, my symptoms since my last intubation have increased a lot, I have lost my ability to run, or exercise. Leaving my house it is a mystery as to what will happen, I am frustrated however, I will keep moving forward, I will keep pursuing my dreams to the best of my ability and actively pursue a proper diagnoses or at least find a way to have a slightly better quality of life.
JennifersHope
New member
The Nasal PD score is different for each person. So what my score was, ( which I don't remember at the moment) has nothing to do with what someone else may score. I Thank you for the good luck wishes. I am a little humbled to speak especially since most people on there that have spoke are CFers.
<br />
<br />I don't know a think about colon tissue, I am however without a doubt pancreatic sufficient. Recently I have had a few people who I respect a great deal, that happen to be CFers speak to me about not sitting on the fence about not knowing what is wrong with me. It is hard for me to advocate for myself, my extreme people pleasing desire kicks in and I get the nagging feeling I don't want to be a pain
<br />
<br />As I live right now, I am not able to or supposed to go anywhere, that my lungs or upper airway get a response to. Good luck interpreting that ... I sometimes can't even walk outside because if someone is using fabric softening in their dryer and it is blowing outside, I can't breathe.
<br />
<br />Having a proper diagnoses is fast becoming my main goal. It was not before because it didn't seem to matter, It was I am CF free period.
<br />
<br />I have asked UNC if they wanted to describe my gene, the q1330e, but I have not heard back, we don't even know if it is disease causing or not, since we don't know what side of the dna strand it was on. My parents are both 70 so I suggest they not wait forever.
<br />
<br />I am currently in contact with National Jewish, I have spoke with Dr Nick there extensively, he actually spoke with my regular doctor and they are in agreement, but meanwhile, my symptoms since my last intubation have increased a lot, I have lost my ability to run, or exercise. Leaving my house it is a mystery as to what will happen, I am frustrated however, I will keep moving forward, I will keep pursuing my dreams to the best of my ability and actively pursue a proper diagnoses or at least find a way to have a slightly better quality of life.
<br />
<br />I don't know a think about colon tissue, I am however without a doubt pancreatic sufficient. Recently I have had a few people who I respect a great deal, that happen to be CFers speak to me about not sitting on the fence about not knowing what is wrong with me. It is hard for me to advocate for myself, my extreme people pleasing desire kicks in and I get the nagging feeling I don't want to be a pain
<br />
<br />As I live right now, I am not able to or supposed to go anywhere, that my lungs or upper airway get a response to. Good luck interpreting that ... I sometimes can't even walk outside because if someone is using fabric softening in their dryer and it is blowing outside, I can't breathe.
<br />
<br />Having a proper diagnoses is fast becoming my main goal. It was not before because it didn't seem to matter, It was I am CF free period.
<br />
<br />I have asked UNC if they wanted to describe my gene, the q1330e, but I have not heard back, we don't even know if it is disease causing or not, since we don't know what side of the dna strand it was on. My parents are both 70 so I suggest they not wait forever.
<br />
<br />I am currently in contact with National Jewish, I have spoke with Dr Nick there extensively, he actually spoke with my regular doctor and they are in agreement, but meanwhile, my symptoms since my last intubation have increased a lot, I have lost my ability to run, or exercise. Leaving my house it is a mystery as to what will happen, I am frustrated however, I will keep moving forward, I will keep pursuing my dreams to the best of my ability and actively pursue a proper diagnoses or at least find a way to have a slightly better quality of life.
Wow! I didn't know the npd was scored based on each individual. I completely misunderstood everything i read about it then. I thought there were set scores ranges that are indicative of cf.
My Mom struggled for most of her life with health problems ranging from sever GI to chronic pnuemonia and pulmonary fibrosis, but she went most of her life undiagnosed and pushed around by doctors. I was constantly fighting for her the last two years of her life. It's very hard when your loved one is so sick and yet no one can tell you why. When the battle started with my daughter I started spending hrs online to try to help her and get some answers. I too am a people pleaser and I had to fight through that and stop trying not to upset my Mom's doctors and in the end I through a nurse out of her room and told a doctor off!!
I hope you get some answers soon! You are a very strong women b/c of all you've had to go through in your life. I'm sure you will do great on the podcast.
My Mom struggled for most of her life with health problems ranging from sever GI to chronic pnuemonia and pulmonary fibrosis, but she went most of her life undiagnosed and pushed around by doctors. I was constantly fighting for her the last two years of her life. It's very hard when your loved one is so sick and yet no one can tell you why. When the battle started with my daughter I started spending hrs online to try to help her and get some answers. I too am a people pleaser and I had to fight through that and stop trying not to upset my Mom's doctors and in the end I through a nurse out of her room and told a doctor off!!
I hope you get some answers soon! You are a very strong women b/c of all you've had to go through in your life. I'm sure you will do great on the podcast.