Jewish National in Dever?

JennifersHope · Mar 30, 2011

I have been at an in-pass with my health since November, actually three days after I was undiagnosed with CF via Nasal PD, I ended up intubated and sick. I have not recovered and it has been a nightmare to say the least, The doctor I saw today at my regular hospital wants me to go to Jewish National Hospital in Denver, We don't know what is wrong with me but I clearly have some serious issues, some doctors still debating, in spite of my totally negative Nasal PD that I still have CF, some saying it is upper airway, some saying it is environmental, work place asthma. No one agrees what so ever.

Today, while seeing ENT, I was told to that they think it is totally pulmonary and that I need to go to the best lung hospital in the US which is supposedly Jewish National, now of course, since my family heard that, and the doctor is sending a referral, I am going to go.

I do want answers, this is insane, I have zero quality of life. Anyway, does anyone have any experience there? We are going to be traveling really far by car to get there. I don't even think they will take me because all I have is Medicaid but this doctor thinks that they will because, where I am going can't fix me.

I just want some sort of quality of life back, I was told by this doctor today that they will start from scratch, and take me off all meds, run all their own tests, bronch me, which is something I have never had.

I don't know for sure if they will see me, I still have my doubts but the doctor today told me she is sending the referral and I should expect to hear from them.

Anyone have any experience?

JennifersHope · Mar 30, 2011

I have been at an in-pass with my health since November, actually three days after I was undiagnosed with CF via Nasal PD, I ended up intubated and sick. I have not recovered and it has been a nightmare to say the least, The doctor I saw today at my regular hospital wants me to go to Jewish National Hospital in Denver, We don't know what is wrong with me but I clearly have some serious issues, some doctors still debating, in spite of my totally negative Nasal PD that I still have CF, some saying it is upper airway, some saying it is environmental, work place asthma. No one agrees what so ever.

Today, while seeing ENT, I was told to that they think it is totally pulmonary and that I need to go to the best lung hospital in the US which is supposedly Jewish National, now of course, since my family heard that, and the doctor is sending a referral, I am going to go.

I do want answers, this is insane, I have zero quality of life. Anyway, does anyone have any experience there? We are going to be traveling really far by car to get there. I don't even think they will take me because all I have is Medicaid but this doctor thinks that they will because, where I am going can't fix me.

I just want some sort of quality of life back, I was told by this doctor today that they will start from scratch, and take me off all meds, run all their own tests, bronch me, which is something I have never had.

I don't know for sure if they will see me, I still have my doubts but the doctor today told me she is sending the referral and I should expect to hear from them.

Anyone have any experience?

JennifersHope · Mar 30, 2011

I have been at an in-pass with my health since November, actually three days after I was undiagnosed with CF via Nasal PD, I ended up intubated and sick. I have not recovered and it has been a nightmare to say the least, The doctor I saw today at my regular hospital wants me to go to Jewish National Hospital in Denver, We don't know what is wrong with me but I clearly have some serious issues, some doctors still debating, in spite of my totally negative Nasal PD that I still have CF, some saying it is upper airway, some saying it is environmental, work place asthma. No one agrees what so ever.
 
 Today, while seeing ENT, I was told to that they think it is totally pulmonary and that I need to go to the best lung hospital in the US which is supposedly Jewish National, now of course, since my family heard that, and the doctor is sending a referral, I am going to go.
 
 I do want answers, this is insane, I have zero quality of life. Anyway, does anyone have any experience there? We are going to be traveling really far by car to get there. I don't even think they will take me because all I have is Medicaid but this doctor thinks that they will because, where I am going can't fix me.
 
 I just want some sort of quality of life back, I was told by this doctor today that they will start from scratch, and take me off all meds, run all their own tests, bronch me, which is something I have never had.
 
 I don't know for sure if they will see me, I still have my doubts but the doctor today told me she is sending the referral and I should expect to hear from them.
 
 Anyone have any experience?

AimeeSue82 · Mar 30, 2011

I have been to National Jewish. I was a pt there for about 2 years after transitioning from Denver Children's hosp. They have been voted one of the 10 best pulmonary hospitals in the country for the last 5-10 straight years. When I went there the 2 primary CF docs were Dr. Nick and Dr. Saavedra. Dr Nick is kinda strange, a little hard to get used to as far as bedside manner. He's pretty blunt with a strange sense of humor. Dr. Saavedra is great! She's very involved with her pts and is super sweet and smart. I believe since I left they've added a couple more primaries. They have a very well established adult clinic and are also a research hospital so they get clinical trials. The actual inpatient unit is at University of CO hospital, not far from National Jewish so the docs come by every day when you're inpatient. Also, they are a public hosp so they will take Medicare. I have a friend who is currently a pt with them and knows the docs better than me. If you'd like, I can have her contact you. PM me with your email addy...she's not a member of this site. Good luck!
~Aimee, 28 w/ CF (PA & MRSA)

AimeeSue82 · Mar 30, 2011

I have been to National Jewish. I was a pt there for about 2 years after transitioning from Denver Children's hosp. They have been voted one of the 10 best pulmonary hospitals in the country for the last 5-10 straight years. When I went there the 2 primary CF docs were Dr. Nick and Dr. Saavedra. Dr Nick is kinda strange, a little hard to get used to as far as bedside manner. He's pretty blunt with a strange sense of humor. Dr. Saavedra is great! She's very involved with her pts and is super sweet and smart. I believe since I left they've added a couple more primaries. They have a very well established adult clinic and are also a research hospital so they get clinical trials. The actual inpatient unit is at University of CO hospital, not far from National Jewish so the docs come by every day when you're inpatient. Also, they are a public hosp so they will take Medicare. I have a friend who is currently a pt with them and knows the docs better than me. If you'd like, I can have her contact you. PM me with your email addy...she's not a member of this site. Good luck!
~Aimee, 28 w/ CF (PA & MRSA)

AimeeSue82 · Mar 30, 2011

I have been to National Jewish. I was a pt there for about 2 years after transitioning from Denver Children's hosp. They have been voted one of the 10 best pulmonary hospitals in the country for the last 5-10 straight years. When I went there the 2 primary CF docs were Dr. Nick and Dr. Saavedra. Dr Nick is kinda strange, a little hard to get used to as far as bedside manner. He's pretty blunt with a strange sense of humor. Dr. Saavedra is great! She's very involved with her pts and is super sweet and smart. I believe since I left they've added a couple more primaries. They have a very well established adult clinic and are also a research hospital so they get clinical trials. The actual inpatient unit is at University of CO hospital, not far from National Jewish so the docs come by every day when you're inpatient. Also, they are a public hosp so they will take Medicare. I have a friend who is currently a pt with them and knows the docs better than me. If you'd like, I can have her contact you. PM me with your email addy...she's not a member of this site. Good luck!
 ~Aimee, 28 w/ CF (PA & MRSA)

rubyroselee · Mar 30, 2011

Hi,

I don't have any experience with the Denver clinic, but I'm extremely interested in your diagnosis issues.

Since you have 2 mutations for CF, why wouldn't you still be considered to have CF? Does the nasal PD trump a genetics test? What is a nasal PD anyway? Wow, that just baffles me since you have 2 mutations.

rubyroselee · Mar 30, 2011

Hi,

I don't have any experience with the Denver clinic, but I'm extremely interested in your diagnosis issues.

Since you have 2 mutations for CF, why wouldn't you still be considered to have CF? Does the nasal PD trump a genetics test? What is a nasal PD anyway? Wow, that just baffles me since you have 2 mutations.

rubyroselee · Mar 30, 2011

Hi,
 
 I don't have any experience with the Denver clinic, but I'm extremely interested in your diagnosis issues.
 
 Since you have 2 mutations for CF, why wouldn't you still be considered to have CF? Does the nasal PD trump a genetics test? What is a nasal PD anyway? Wow, that just baffles me since you have 2 mutations.

Mommafirst · Mar 30, 2011

Hi Jennifer -- I don't know anything about National Jewish, but I was just reading yesterday about the top five pulmonary programs, and they are definitely in there (I don't think they were number one though, but that is a variable type thing).

I've been following all your ordeal and how hard all of this has been for you...physically and emotionally. The thing that strikes me is how well you did when you were on all your CF meds, treatments etc. Do you think the "un"diagnosis and the pulling of airway clearance and meds like pulmozyme have caused you to go backwards in your health??

I'm so sorry that this is back on the table. It seems to me that having 2 CF mutations will mean you can never completely take CF off the table. I'm sorry that you have to live in the land of limbo.

Mommafirst · Mar 30, 2011

Hi Jennifer -- I don't know anything about National Jewish, but I was just reading yesterday about the top five pulmonary programs, and they are definitely in there (I don't think they were number one though, but that is a variable type thing).

I've been following all your ordeal and how hard all of this has been for you...physically and emotionally. The thing that strikes me is how well you did when you were on all your CF meds, treatments etc. Do you think the "un"diagnosis and the pulling of airway clearance and meds like pulmozyme have caused you to go backwards in your health??

I'm so sorry that this is back on the table. It seems to me that having 2 CF mutations will mean you can never completely take CF off the table. I'm sorry that you have to live in the land of limbo.

Mommafirst · Mar 30, 2011

Hi Jennifer -- I don't know anything about National Jewish, but I was just reading yesterday about the top five pulmonary programs, and they are definitely in there (I don't think they were number one though, but that is a variable type thing).
 
 I've been following all your ordeal and how hard all of this has been for you...physically and emotionally. The thing that strikes me is how well you did when you were on all your CF meds, treatments etc. Do you think the "un"diagnosis and the pulling of airway clearance and meds like pulmozyme have caused you to go backwards in your health??
 
 I'm so sorry that this is back on the table. It seems to me that having 2 CF mutations will mean you can never completely take CF off the table. I'm sorry that you have to live in the land of limbo.

mamerth · Mar 30, 2011

I got to National Jewish and I love the care. Dr. Nick and Dr. Taylor are who I see. Like someone said above Dr. Nick is a bit gruff and has a dry sense of humor. I really like him. Dr. Taylor is very sweet and listens great. I enjoy my visits with either of them. Dr. Taylor is a bit more aggressive than Dr. Nick in some area of treatment (is my impression).

The nurses are the best. When I need something they jump to it and get me what I need. I highly recommend giving them a try.

University is a teaching hospital but stays there are nice-- I stay the full 2 weeks. The food isn't the best but the nurses are top notch.

PM me if you have any questions.

mamerth · Mar 30, 2011

I got to National Jewish and I love the care. Dr. Nick and Dr. Taylor are who I see. Like someone said above Dr. Nick is a bit gruff and has a dry sense of humor. I really like him. Dr. Taylor is very sweet and listens great. I enjoy my visits with either of them. Dr. Taylor is a bit more aggressive than Dr. Nick in some area of treatment (is my impression).

The nurses are the best. When I need something they jump to it and get me what I need. I highly recommend giving them a try.

University is a teaching hospital but stays there are nice-- I stay the full 2 weeks. The food isn't the best but the nurses are top notch.

PM me if you have any questions.

mamerth · Mar 30, 2011

I got to National Jewish and I love the care. Dr. Nick and Dr. Taylor are who I see. Like someone said above Dr. Nick is a bit gruff and has a dry sense of humor. I really like him. Dr. Taylor is very sweet and listens great. I enjoy my visits with either of them. Dr. Taylor is a bit more aggressive than Dr. Nick in some area of treatment (is my impression).
 
 The nurses are the best. When I need something they jump to it and get me what I need. I highly recommend giving them a try.
 
 University is a teaching hospital but stays there are nice-- I stay the full 2 weeks. The food isn't the best but the nurses are top notch.
 
 PM me if you have any questions.

JennifersHope · Mar 30, 2011

I have no idea if I will be seen by a CF team or not. I do have two genes as you have heard me say a million times looking for information DF508 and Q1330E, The thing is they don't know enough about that gene to decide if it is disease causing or not, so since my clinic was at a stand still I went to UNC, in NC who invented this test caused the Nasal Potential Differential test. It actually is supposed to measure the way the cf gene transports the sodium or the chloride I can't remember right now across the membrane. It was done in a clinic trial building. Mine was perfect. So because I don't fit the normal CF protocol, is there is such a thing, and because I have Addison's disease that can make you have false positive sweat tests. My doctor decided to undiagnose me with CF.

Apparently the Nasal PD is a trust worthly test. I don't know. All I know is I was doing really well, running 5 ks' several times a week, I got sick and intubated on Thanksgiving and now I can't walk across the room without gasping for air. Pulmonary says it is an upper airway issue, and I am allergic to something in the environment work force that makes me sick. ENT who scoped me said it is not upper it is lower. Beats me.

My family is beside themselves since I have pretty much been useless since Thanksgiving, not able to do very much of anything and they are frustrated.

I am being bounced around like a ping pong ball, pulmonary turfs me off to ENT and Vice Versa. Both have very good intentions, both are top doctors and I like both of them very much. The ENT decided yesterday that she could not do anything for me since it is my lungs so she wants me to go to the best lung place she knows which is supposedly this hospital.

This comes at a great cost to my family as we have to buy plane tickets, hotel fees, car rental and what am I going to do with my dog??? I feel so guilty putting my family though such expensive things. They are all for it, in fact, they are the ones making me go.

I don't in my heart believe I have CF, I never did from day one. I can't explain though why I am going to the bathroom six to eight times a day being off enzymes when my fecal test was 500.

I can't explain anything. So that is why she thought I should go there, apparently they do not take any medical records and they start from scratch, they don't listen to other doctors and they totally do their own thing.

If I told you how many different diagnoses I have been given through the past year you would pass out, including a real possible one yesterday. Thing is no one knows.

I believe UNC where I had the Nasal PD done did the test correctly. I do not believe I have CF, but I have something wrong with me and I want to know what it is.

JennifersHope · Mar 30, 2011

I have no idea if I will be seen by a CF team or not. I do have two genes as you have heard me say a million times looking for information DF508 and Q1330E, The thing is they don't know enough about that gene to decide if it is disease causing or not, so since my clinic was at a stand still I went to UNC, in NC who invented this test caused the Nasal Potential Differential test. It actually is supposed to measure the way the cf gene transports the sodium or the chloride I can't remember right now across the membrane. It was done in a clinic trial building. Mine was perfect. So because I don't fit the normal CF protocol, is there is such a thing, and because I have Addison's disease that can make you have false positive sweat tests. My doctor decided to undiagnose me with CF.

Apparently the Nasal PD is a trust worthly test. I don't know. All I know is I was doing really well, running 5 ks' several times a week, I got sick and intubated on Thanksgiving and now I can't walk across the room without gasping for air. Pulmonary says it is an upper airway issue, and I am allergic to something in the environment work force that makes me sick. ENT who scoped me said it is not upper it is lower. Beats me.

My family is beside themselves since I have pretty much been useless since Thanksgiving, not able to do very much of anything and they are frustrated.

I am being bounced around like a ping pong ball, pulmonary turfs me off to ENT and Vice Versa. Both have very good intentions, both are top doctors and I like both of them very much. The ENT decided yesterday that she could not do anything for me since it is my lungs so she wants me to go to the best lung place she knows which is supposedly this hospital.

This comes at a great cost to my family as we have to buy plane tickets, hotel fees, car rental and what am I going to do with my dog??? I feel so guilty putting my family though such expensive things. They are all for it, in fact, they are the ones making me go.

I don't in my heart believe I have CF, I never did from day one. I can't explain though why I am going to the bathroom six to eight times a day being off enzymes when my fecal test was 500.

I can't explain anything. So that is why she thought I should go there, apparently they do not take any medical records and they start from scratch, they don't listen to other doctors and they totally do their own thing.

If I told you how many different diagnoses I have been given through the past year you would pass out, including a real possible one yesterday. Thing is no one knows.

I believe UNC where I had the Nasal PD done did the test correctly. I do not believe I have CF, but I have something wrong with me and I want to know what it is.

JennifersHope · Mar 30, 2011

I have no idea if I will be seen by a CF team or not. I do have two genes as you have heard me say a million times looking for information DF508 and Q1330E, The thing is they don't know enough about that gene to decide if it is disease causing or not, so since my clinic was at a stand still I went to UNC, in NC who invented this test caused the Nasal Potential Differential test. It actually is supposed to measure the way the cf gene transports the sodium or the chloride I can't remember right now across the membrane. It was done in a clinic trial building. Mine was perfect. So because I don't fit the normal CF protocol, is there is such a thing, and because I have Addison's disease that can make you have false positive sweat tests. My doctor decided to undiagnose me with CF.
 
 Apparently the Nasal PD is a trust worthly test. I don't know. All I know is I was doing really well, running 5 ks' several times a week, I got sick and intubated on Thanksgiving and now I can't walk across the room without gasping for air. Pulmonary says it is an upper airway issue, and I am allergic to something in the environment work force that makes me sick. ENT who scoped me said it is not upper it is lower. Beats me.
 
 My family is beside themselves since I have pretty much been useless since Thanksgiving, not able to do very much of anything and they are frustrated.
 
 I am being bounced around like a ping pong ball, pulmonary turfs me off to ENT and Vice Versa. Both have very good intentions, both are top doctors and I like both of them very much. The ENT decided yesterday that she could not do anything for me since it is my lungs so she wants me to go to the best lung place she knows which is supposedly this hospital.
 
 This comes at a great cost to my family as we have to buy plane tickets, hotel fees, car rental and what am I going to do with my dog??? I feel so guilty putting my family though such expensive things. They are all for it, in fact, they are the ones making me go.
 
 I don't in my heart believe I have CF, I never did from day one. I can't explain though why I am going to the bathroom six to eight times a day being off enzymes when my fecal test was 500.
 
 I can't explain anything. So that is why she thought I should go there, apparently they do not take any medical records and they start from scratch, they don't listen to other doctors and they totally do their own thing.
 
 If I told you how many different diagnoses I have been given through the past year you would pass out, including a real possible one yesterday. Thing is no one knows.
 
 I believe UNC where I had the Nasal PD done did the test correctly. I do not believe I have CF, but I have something wrong with me and I want to know what it is.

Ratatosk · Mar 30, 2011

I've heard good things about it from relatives who live in Denver. In fact during a visit when DS was a baby, it was suggested that someday we take him there as "they're the best" according to one cousin who's a medical malpractice attorney.

DH's uncle from ND went there a couple years ago due to issues with his COPD -- didn't get the answers he wanted -- a cure, ability to play golf without being on 02; however, he did get some answers to issues and got some meds changed around to help with his quality of life.

Being that you haven't gotten any definitive answer where you're at -- maybe it's time for a new set of eyes despite costs involved.

Ratatosk · Mar 30, 2011

I've heard good things about it from relatives who live in Denver. In fact during a visit when DS was a baby, it was suggested that someday we take him there as "they're the best" according to one cousin who's a medical malpractice attorney.

DH's uncle from ND went there a couple years ago due to issues with his COPD -- didn't get the answers he wanted -- a cure, ability to play golf without being on 02; however, he did get some answers to issues and got some meds changed around to help with his quality of life.

Being that you haven't gotten any definitive answer where you're at -- maybe it's time for a new set of eyes despite costs involved.

Jewish National in Dever?

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