I wish that they tested for more than the 30 genes during pregnancy! I would have found out about my 5 year old if they had. It is very hard to get insurance to cover testing. I also have sever asthma & sinus issues that are similiar but not anywhere near as severe as my daughters CF but haven't been tested for CF but have never even thought of being tested. My sister is pregnant & her ob told her there was no need to get any further testing if the baby didn't show any signs because her prenatal blood work came bag negative & she has a family hx of CF & that just makes my blood boil. I want to slap my sister silly every time I talk to her because she has seen the tough times I go through with Holly but believes her doctor has the babies best interest at heart & said to me "if the baby needed to be tested they would tell me, what do they have to loose by not getting the baby tested" I almost fell over when she told me that.
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What level of genetic testing have your parents had?
- Thread starter LouLou
- Start date
I wish that they tested for more than the 30 genes during pregnancy! I would have found out about my 5 year old if they had. It is very hard to get insurance to cover testing. I also have sever asthma & sinus issues that are similiar but not anywhere near as severe as my daughters CF but haven't been tested for CF but have never even thought of being tested. My sister is pregnant & her ob told her there was no need to get any further testing if the baby didn't show any signs because her prenatal blood work came bag negative & she has a family hx of CF & that just makes my blood boil. I want to slap my sister silly every time I talk to her because she has seen the tough times I go through with Holly but believes her doctor has the babies best interest at heart & said to me "if the baby needed to be tested they would tell me, what do they have to loose by not getting the baby tested" I almost fell over when she told me that.
I wish that they tested for more than the 30 genes during pregnancy! I would have found out about my 5 year old if they had. It is very hard to get insurance to cover testing. I also have sever asthma & sinus issues that are similiar but not anywhere near as severe as my daughters CF but haven't been tested for CF but have never even thought of being tested. My sister is pregnant & her ob told her there was no need to get any further testing if the baby didn't show any signs because her prenatal blood work came bag negative & she has a family hx of CF & that just makes my blood boil. I want to slap my sister silly every time I talk to her because she has seen the tough times I go through with Holly but believes her doctor has the babies best interest at heart & said to me "if the baby needed to be tested they would tell me, what do they have to loose by not getting the baby tested" I almost fell over when she told me that.
I wish that they tested for more than the 30 genes during pregnancy! I would have found out about my 5 year old if they had. It is very hard to get insurance to cover testing. I also have sever asthma & sinus issues that are similiar but not anywhere near as severe as my daughters CF but haven't been tested for CF but have never even thought of being tested. My sister is pregnant & her ob told her there was no need to get any further testing if the baby didn't show any signs because her prenatal blood work came bag negative & she has a family hx of CF & that just makes my blood boil. I want to slap my sister silly every time I talk to her because she has seen the tough times I go through with Holly but believes her doctor has the babies best interest at heart & said to me "if the baby needed to be tested they would tell me, what do they have to loose by not getting the baby tested" I almost fell over when she told me that.
I wish that they tested for more than the 30 genes during pregnancy! I would have found out about my 5 year old if they had. It is very hard to get insurance to cover testing. I also have sever asthma & sinus issues that are similiar but not anywhere near as severe as my daughters CF but haven't been tested for CF but have never even thought of being tested. My sister is pregnant & her ob told her there was no need to get any further testing if the baby didn't show any signs because her prenatal blood work came bag negative & she has a family hx of CF & that just makes my blood boil. I want to slap my sister silly every time I talk to her because she has seen the tough times I go through with Holly but believes her doctor has the babies best interest at heart & said to me "if the baby needed to be tested they would tell me, what do they have to loose by not getting the baby tested" I almost fell over when she told me that.
LouLou:
<div class="FTQUOTE"><begin quote><div class="FTQUOTE"><begin quote>Text</end quote></div>But will it revert to a profession more like pre HMO days? I wouldn't be opposed. By "pre HMO days" I'm talking about how before managed care was suggested (was it Nixon I'm drawing a blank). </end quote></div><div class="FTQUOTE"><begin quote>Text</end quote></div>
Yes, it was Nixon, and it's probably exactly why we're in the shape we are in today. He liked the idea of insurance companies earning more for doing less. From: <a target=_blank class=ftalternatingbarlinklarge href="http://businesspractices.kaiserpapers.info/nixononkaiser.html
">http://businesspractices.kaise...ononkaiser.html
</a>
<div class="FTQUOTE"><begin quote>Ehrlichman: - the less care they give them, the more money they make. </end quote></div>
I was stunned when I read your "Knowledge is power" quote because within the last half hour, I used the exact same quote when posting on another board.
My case is a little different, though, but also involves insurance issues and arrogant physicians.
After almost two years of recurrent pancreatitis and a half dozen hospitalizations for same, diagnostic DNA testing for CF was performed during one of my hospitalizations without my knowledge or consent.
After relocating to my present location, when I first presented to a GI "specialist" almost a year ago, I still had health insurance, although it was very, very expensive ($622 per month; I earn a little less than $20,000 per year). I requested my appointment be with the female "specialist" because I thought I might feel more comfortable with a female.
Everything was going fine throughout the exam. She asked me to point to the location of my pain. I pointed to my upper abdominal area, just a little right of midline, and explained how it went into my back, etc. She then asked me how I control my pain, and I told her I had been prescribed hydrocodone by my PCP. At that very moment, the look on her face changed, she informed me she did NOT think my pain was due to pancreatitis but that if it was, she would first refer me to a pain specialist to get me "off of narcotics" and then refer me to the University of Colorado. She basically wiped her hands of me and dismissed me.
About a month later, my "employer-provided" insurance premiums rose to $711 per month, and I simply could not afford this any longer, as I was working less and earning less because of my chronic pancreatitis. Before canceling my insurance, however, I called around to see what a private policy would cost. A representative from Blue Cross told me that I wouldn't find ANYONE to insure me in my state due to my pancreatitis, because I live in a state that is allowed to "discriminate."
Three months after my character and condition were misdiagnosed by the female GI "specialist," I was again hospitalized for pancreatitis (this time being UNINSURED). The CT scan showed a 6.6-cm "phlegmon" on the head of my pancreas (the exact area that I pointed out as the location of my pain). The size of this phlegmon was approximately half the size of my entire pancreas.
A GI doc from the same practice (they have a monopoly in my town) strolled into my room, and I promptly kicked him out, stating I refused to pay him for impugning my character and misdiagnosing me. (I was promptly yelled at by the nurses and docs for doing this.)
A month later, I was again hospitalized, with the same phlegmon that had grown slightly in size, and I now had wall thickening of my duodenum and a few other little goodies.
Again, another GI doc strolled into my room, and this time I permitted him/them to treat me. This time, it seemed as if they were taking my case seriously. They finally requested that I sign a release for records from my first hospitalization in another state, which I gladly did. I again mentioned my concern over my mother's death due to colon cancer, and they actually performed Hemoccult testing. They even gave me pancreatic enzymes (which they had never previously done). During this hospitalization, my breathing was the best it had ever been, and I had little need for oxygen. (I had had pneumonia during my prior hospitalization and atelectasis during other hospitalizations). However, I developed a bad "cold" that produced the thickest secretions I had ever seen in my life, almost choking me. I told the nurse about this, and she said it was probably just a bad "cold," and in all honesty, I figured she was probably right. My pulse ox was remarkably good throughout this hospitalization. I, my "bad cold" and very thick secretions were discharged on September 6, 2007. When I went to my followup appointment with my new assigned indigent-care PCP two weeks later, I still had this bad "cold" and complained about it to her. She said that though it was probably viral, she agreed to give me antibiotics (which didn't do a thing to help). All in all, this bad "cold" lasted for three weeks and finally resolved.
On October 2, 2007, during an otherwise "normal" day, I received an undated, three-sentence letter from my "assigned" PCP indicating that the DNA testing I "had done" while in the hospital confirmed that I have a "mild form" of cystic fibrosis. To say I was in shock doesn't even begin to describe it. NOBODY uttered the words "cystic fibrosis" to me nor did I have knowledge of or sign a consent permitting DNA testing to be performed on me.
I was uninsured at the time (but didn't have to be if the female "professional" I had seen had done her job properly because I was still insured at that time), and I've discovered since that the CFF stresses the importance of maintaining health insurance and can even provide financial help if patients cannot afford premiums).
Additionally, when they secretly performed this DNA testing, I was uninsured, and they knew it. If I had had the knowledge that they suspected CF and were planning to test for it, I could have asked the multitude of questions I would have had concerning this disease, and I very well may have DENIED consent to have DNA testing performed until I had had the opportunity to explore insurance laws in neighboring states and perhaps try to find a "friendlier" one where I could relocate that would agree to insure me BEFORE the "official" diagnosis of CF was made.
I did have an appointment with the nearest CF center to me (about 80 miles away) in the beginning of November; however, I was hospitalized once again for pancreatitis and could not keep that appointment. My car was then repossessed since I could no longer afford the payments due to my increasingly-worse illness, so I have no transportation to the center now.
I'm trying to find out as much as I can about CF, as it now seems to be affecting my lungs more. As I write this, I again have the same kind of bad "cold" that I had while in the hospital, my secretions are getting worse, and I'm plain exhausted. I don't have the money or the transportation to see a specialist in this regard, and I no longer hold any trust or respect for the "professionals" in my town.
I can't apply for disability because I earn about $210 to $220 per week now, and that's too much money to earn to be eligible for SSDI, yet it's an amount that is very difficult to exist on. I don't want to give up my job because it's the only source of pride I have left in my life.
I can understand and empathize with your concern about your father being tested. Both of my parents are deceased, but I've constantly been telling my daughter to have herself and my grandkids tested, but she isn't paying attention, and now I'm a "nag."
I now have no primary care doc, but I DO want to know what is going on with my body and whether any new "weird" things can be attributed to my CF.
I think the problems with the current system run the gamut from NOT testing to the situation I just outlined, and I couldn't agree with you more regarding funding for research with the MORE people having this disease, the MORE funding would be available.
Physicians need to learn to respect patients -- whether it's in a situation such as yours or one such as mine. I feel I have been completely disrepected in the last two years. I found the laboratory's website and printed out their very own INFORMED CONSENT form -- a form I never saw or signed -- outlining that I had consented to DNA testing voluntarily, was given the opportunity to ask questions about the disease, a copy of the consent made available to me, etc. -- all the things I'm complaining never happened in my case. I was required to have a PICC line be inserted during this very same hospitalization. I still have a copy of the consent I signed, revealing that every tiny detail of the procedure was explained to me (which it was), and my signature is on that form.
Two days ago, I filed a HIPAA complaint against the GI practice, the pulmonologist who ordered this DNA report (whom I've never met) and the laboratory that performed the testing. (This pulmonologist received this report on September 6 but didn't bother to send it to my PCP until September 25. I can see these dates on the copy of the report in my possession.) I have not received a reply as of yet.
America should be ashamed of itself in how it treats its citizens with respect to healthcare.
<div class="FTQUOTE"><begin quote><div class="FTQUOTE"><begin quote>Text</end quote></div>But will it revert to a profession more like pre HMO days? I wouldn't be opposed. By "pre HMO days" I'm talking about how before managed care was suggested (was it Nixon I'm drawing a blank). </end quote></div><div class="FTQUOTE"><begin quote>Text</end quote></div>
Yes, it was Nixon, and it's probably exactly why we're in the shape we are in today. He liked the idea of insurance companies earning more for doing less. From: <a target=_blank class=ftalternatingbarlinklarge href="http://businesspractices.kaiserpapers.info/nixononkaiser.html
">http://businesspractices.kaise...ononkaiser.html
</a>
<div class="FTQUOTE"><begin quote>Ehrlichman: - the less care they give them, the more money they make. </end quote></div>
I was stunned when I read your "Knowledge is power" quote because within the last half hour, I used the exact same quote when posting on another board.
My case is a little different, though, but also involves insurance issues and arrogant physicians.
After almost two years of recurrent pancreatitis and a half dozen hospitalizations for same, diagnostic DNA testing for CF was performed during one of my hospitalizations without my knowledge or consent.
After relocating to my present location, when I first presented to a GI "specialist" almost a year ago, I still had health insurance, although it was very, very expensive ($622 per month; I earn a little less than $20,000 per year). I requested my appointment be with the female "specialist" because I thought I might feel more comfortable with a female.
Everything was going fine throughout the exam. She asked me to point to the location of my pain. I pointed to my upper abdominal area, just a little right of midline, and explained how it went into my back, etc. She then asked me how I control my pain, and I told her I had been prescribed hydrocodone by my PCP. At that very moment, the look on her face changed, she informed me she did NOT think my pain was due to pancreatitis but that if it was, she would first refer me to a pain specialist to get me "off of narcotics" and then refer me to the University of Colorado. She basically wiped her hands of me and dismissed me.
About a month later, my "employer-provided" insurance premiums rose to $711 per month, and I simply could not afford this any longer, as I was working less and earning less because of my chronic pancreatitis. Before canceling my insurance, however, I called around to see what a private policy would cost. A representative from Blue Cross told me that I wouldn't find ANYONE to insure me in my state due to my pancreatitis, because I live in a state that is allowed to "discriminate."
Three months after my character and condition were misdiagnosed by the female GI "specialist," I was again hospitalized for pancreatitis (this time being UNINSURED). The CT scan showed a 6.6-cm "phlegmon" on the head of my pancreas (the exact area that I pointed out as the location of my pain). The size of this phlegmon was approximately half the size of my entire pancreas.
A GI doc from the same practice (they have a monopoly in my town) strolled into my room, and I promptly kicked him out, stating I refused to pay him for impugning my character and misdiagnosing me. (I was promptly yelled at by the nurses and docs for doing this.)
A month later, I was again hospitalized, with the same phlegmon that had grown slightly in size, and I now had wall thickening of my duodenum and a few other little goodies.
Again, another GI doc strolled into my room, and this time I permitted him/them to treat me. This time, it seemed as if they were taking my case seriously. They finally requested that I sign a release for records from my first hospitalization in another state, which I gladly did. I again mentioned my concern over my mother's death due to colon cancer, and they actually performed Hemoccult testing. They even gave me pancreatic enzymes (which they had never previously done). During this hospitalization, my breathing was the best it had ever been, and I had little need for oxygen. (I had had pneumonia during my prior hospitalization and atelectasis during other hospitalizations). However, I developed a bad "cold" that produced the thickest secretions I had ever seen in my life, almost choking me. I told the nurse about this, and she said it was probably just a bad "cold," and in all honesty, I figured she was probably right. My pulse ox was remarkably good throughout this hospitalization. I, my "bad cold" and very thick secretions were discharged on September 6, 2007. When I went to my followup appointment with my new assigned indigent-care PCP two weeks later, I still had this bad "cold" and complained about it to her. She said that though it was probably viral, she agreed to give me antibiotics (which didn't do a thing to help). All in all, this bad "cold" lasted for three weeks and finally resolved.
On October 2, 2007, during an otherwise "normal" day, I received an undated, three-sentence letter from my "assigned" PCP indicating that the DNA testing I "had done" while in the hospital confirmed that I have a "mild form" of cystic fibrosis. To say I was in shock doesn't even begin to describe it. NOBODY uttered the words "cystic fibrosis" to me nor did I have knowledge of or sign a consent permitting DNA testing to be performed on me.
I was uninsured at the time (but didn't have to be if the female "professional" I had seen had done her job properly because I was still insured at that time), and I've discovered since that the CFF stresses the importance of maintaining health insurance and can even provide financial help if patients cannot afford premiums).
Additionally, when they secretly performed this DNA testing, I was uninsured, and they knew it. If I had had the knowledge that they suspected CF and were planning to test for it, I could have asked the multitude of questions I would have had concerning this disease, and I very well may have DENIED consent to have DNA testing performed until I had had the opportunity to explore insurance laws in neighboring states and perhaps try to find a "friendlier" one where I could relocate that would agree to insure me BEFORE the "official" diagnosis of CF was made.
I did have an appointment with the nearest CF center to me (about 80 miles away) in the beginning of November; however, I was hospitalized once again for pancreatitis and could not keep that appointment. My car was then repossessed since I could no longer afford the payments due to my increasingly-worse illness, so I have no transportation to the center now.
I'm trying to find out as much as I can about CF, as it now seems to be affecting my lungs more. As I write this, I again have the same kind of bad "cold" that I had while in the hospital, my secretions are getting worse, and I'm plain exhausted. I don't have the money or the transportation to see a specialist in this regard, and I no longer hold any trust or respect for the "professionals" in my town.
I can't apply for disability because I earn about $210 to $220 per week now, and that's too much money to earn to be eligible for SSDI, yet it's an amount that is very difficult to exist on. I don't want to give up my job because it's the only source of pride I have left in my life.
I can understand and empathize with your concern about your father being tested. Both of my parents are deceased, but I've constantly been telling my daughter to have herself and my grandkids tested, but she isn't paying attention, and now I'm a "nag."
I now have no primary care doc, but I DO want to know what is going on with my body and whether any new "weird" things can be attributed to my CF.
I think the problems with the current system run the gamut from NOT testing to the situation I just outlined, and I couldn't agree with you more regarding funding for research with the MORE people having this disease, the MORE funding would be available.
Physicians need to learn to respect patients -- whether it's in a situation such as yours or one such as mine. I feel I have been completely disrepected in the last two years. I found the laboratory's website and printed out their very own INFORMED CONSENT form -- a form I never saw or signed -- outlining that I had consented to DNA testing voluntarily, was given the opportunity to ask questions about the disease, a copy of the consent made available to me, etc. -- all the things I'm complaining never happened in my case. I was required to have a PICC line be inserted during this very same hospitalization. I still have a copy of the consent I signed, revealing that every tiny detail of the procedure was explained to me (which it was), and my signature is on that form.
Two days ago, I filed a HIPAA complaint against the GI practice, the pulmonologist who ordered this DNA report (whom I've never met) and the laboratory that performed the testing. (This pulmonologist received this report on September 6 but didn't bother to send it to my PCP until September 25. I can see these dates on the copy of the report in my possession.) I have not received a reply as of yet.
America should be ashamed of itself in how it treats its citizens with respect to healthcare.
LouLou:
<div class="FTQUOTE"><begin quote><div class="FTQUOTE"><begin quote>Text</end quote></div>But will it revert to a profession more like pre HMO days? I wouldn't be opposed. By "pre HMO days" I'm talking about how before managed care was suggested (was it Nixon I'm drawing a blank). </end quote></div><div class="FTQUOTE"><begin quote>Text</end quote></div>
Yes, it was Nixon, and it's probably exactly why we're in the shape we are in today. He liked the idea of insurance companies earning more for doing less. From: <a target=_blank class=ftalternatingbarlinklarge href="http://businesspractices.kaiserpapers.info/nixononkaiser.html
">http://businesspractices.kaise...ononkaiser.html
</a>
<div class="FTQUOTE"><begin quote>Ehrlichman: - the less care they give them, the more money they make. </end quote></div>
I was stunned when I read your "Knowledge is power" quote because within the last half hour, I used the exact same quote when posting on another board.
My case is a little different, though, but also involves insurance issues and arrogant physicians.
After almost two years of recurrent pancreatitis and a half dozen hospitalizations for same, diagnostic DNA testing for CF was performed during one of my hospitalizations without my knowledge or consent.
After relocating to my present location, when I first presented to a GI "specialist" almost a year ago, I still had health insurance, although it was very, very expensive ($622 per month; I earn a little less than $20,000 per year). I requested my appointment be with the female "specialist" because I thought I might feel more comfortable with a female.
Everything was going fine throughout the exam. She asked me to point to the location of my pain. I pointed to my upper abdominal area, just a little right of midline, and explained how it went into my back, etc. She then asked me how I control my pain, and I told her I had been prescribed hydrocodone by my PCP. At that very moment, the look on her face changed, she informed me she did NOT think my pain was due to pancreatitis but that if it was, she would first refer me to a pain specialist to get me "off of narcotics" and then refer me to the University of Colorado. She basically wiped her hands of me and dismissed me.
About a month later, my "employer-provided" insurance premiums rose to $711 per month, and I simply could not afford this any longer, as I was working less and earning less because of my chronic pancreatitis. Before canceling my insurance, however, I called around to see what a private policy would cost. A representative from Blue Cross told me that I wouldn't find ANYONE to insure me in my state due to my pancreatitis, because I live in a state that is allowed to "discriminate."
Three months after my character and condition were misdiagnosed by the female GI "specialist," I was again hospitalized for pancreatitis (this time being UNINSURED). The CT scan showed a 6.6-cm "phlegmon" on the head of my pancreas (the exact area that I pointed out as the location of my pain). The size of this phlegmon was approximately half the size of my entire pancreas.
A GI doc from the same practice (they have a monopoly in my town) strolled into my room, and I promptly kicked him out, stating I refused to pay him for impugning my character and misdiagnosing me. (I was promptly yelled at by the nurses and docs for doing this.)
A month later, I was again hospitalized, with the same phlegmon that had grown slightly in size, and I now had wall thickening of my duodenum and a few other little goodies.
Again, another GI doc strolled into my room, and this time I permitted him/them to treat me. This time, it seemed as if they were taking my case seriously. They finally requested that I sign a release for records from my first hospitalization in another state, which I gladly did. I again mentioned my concern over my mother's death due to colon cancer, and they actually performed Hemoccult testing. They even gave me pancreatic enzymes (which they had never previously done). During this hospitalization, my breathing was the best it had ever been, and I had little need for oxygen. (I had had pneumonia during my prior hospitalization and atelectasis during other hospitalizations). However, I developed a bad "cold" that produced the thickest secretions I had ever seen in my life, almost choking me. I told the nurse about this, and she said it was probably just a bad "cold," and in all honesty, I figured she was probably right. My pulse ox was remarkably good throughout this hospitalization. I, my "bad cold" and very thick secretions were discharged on September 6, 2007. When I went to my followup appointment with my new assigned indigent-care PCP two weeks later, I still had this bad "cold" and complained about it to her. She said that though it was probably viral, she agreed to give me antibiotics (which didn't do a thing to help). All in all, this bad "cold" lasted for three weeks and finally resolved.
On October 2, 2007, during an otherwise "normal" day, I received an undated, three-sentence letter from my "assigned" PCP indicating that the DNA testing I "had done" while in the hospital confirmed that I have a "mild form" of cystic fibrosis. To say I was in shock doesn't even begin to describe it. NOBODY uttered the words "cystic fibrosis" to me nor did I have knowledge of or sign a consent permitting DNA testing to be performed on me.
I was uninsured at the time (but didn't have to be if the female "professional" I had seen had done her job properly because I was still insured at that time), and I've discovered since that the CFF stresses the importance of maintaining health insurance and can even provide financial help if patients cannot afford premiums).
Additionally, when they secretly performed this DNA testing, I was uninsured, and they knew it. If I had had the knowledge that they suspected CF and were planning to test for it, I could have asked the multitude of questions I would have had concerning this disease, and I very well may have DENIED consent to have DNA testing performed until I had had the opportunity to explore insurance laws in neighboring states and perhaps try to find a "friendlier" one where I could relocate that would agree to insure me BEFORE the "official" diagnosis of CF was made.
I did have an appointment with the nearest CF center to me (about 80 miles away) in the beginning of November; however, I was hospitalized once again for pancreatitis and could not keep that appointment. My car was then repossessed since I could no longer afford the payments due to my increasingly-worse illness, so I have no transportation to the center now.
I'm trying to find out as much as I can about CF, as it now seems to be affecting my lungs more. As I write this, I again have the same kind of bad "cold" that I had while in the hospital, my secretions are getting worse, and I'm plain exhausted. I don't have the money or the transportation to see a specialist in this regard, and I no longer hold any trust or respect for the "professionals" in my town.
I can't apply for disability because I earn about $210 to $220 per week now, and that's too much money to earn to be eligible for SSDI, yet it's an amount that is very difficult to exist on. I don't want to give up my job because it's the only source of pride I have left in my life.
I can understand and empathize with your concern about your father being tested. Both of my parents are deceased, but I've constantly been telling my daughter to have herself and my grandkids tested, but she isn't paying attention, and now I'm a "nag."
I now have no primary care doc, but I DO want to know what is going on with my body and whether any new "weird" things can be attributed to my CF.
I think the problems with the current system run the gamut from NOT testing to the situation I just outlined, and I couldn't agree with you more regarding funding for research with the MORE people having this disease, the MORE funding would be available.
Physicians need to learn to respect patients -- whether it's in a situation such as yours or one such as mine. I feel I have been completely disrepected in the last two years. I found the laboratory's website and printed out their very own INFORMED CONSENT form -- a form I never saw or signed -- outlining that I had consented to DNA testing voluntarily, was given the opportunity to ask questions about the disease, a copy of the consent made available to me, etc. -- all the things I'm complaining never happened in my case. I was required to have a PICC line be inserted during this very same hospitalization. I still have a copy of the consent I signed, revealing that every tiny detail of the procedure was explained to me (which it was), and my signature is on that form.
Two days ago, I filed a HIPAA complaint against the GI practice, the pulmonologist who ordered this DNA report (whom I've never met) and the laboratory that performed the testing. (This pulmonologist received this report on September 6 but didn't bother to send it to my PCP until September 25. I can see these dates on the copy of the report in my possession.) I have not received a reply as of yet.
America should be ashamed of itself in how it treats its citizens with respect to healthcare.
<div class="FTQUOTE"><begin quote><div class="FTQUOTE"><begin quote>Text</end quote></div>But will it revert to a profession more like pre HMO days? I wouldn't be opposed. By "pre HMO days" I'm talking about how before managed care was suggested (was it Nixon I'm drawing a blank). </end quote></div><div class="FTQUOTE"><begin quote>Text</end quote></div>
Yes, it was Nixon, and it's probably exactly why we're in the shape we are in today. He liked the idea of insurance companies earning more for doing less. From: <a target=_blank class=ftalternatingbarlinklarge href="http://businesspractices.kaiserpapers.info/nixononkaiser.html
">http://businesspractices.kaise...ononkaiser.html
</a>
<div class="FTQUOTE"><begin quote>Ehrlichman: - the less care they give them, the more money they make. </end quote></div>
I was stunned when I read your "Knowledge is power" quote because within the last half hour, I used the exact same quote when posting on another board.
My case is a little different, though, but also involves insurance issues and arrogant physicians.
After almost two years of recurrent pancreatitis and a half dozen hospitalizations for same, diagnostic DNA testing for CF was performed during one of my hospitalizations without my knowledge or consent.
After relocating to my present location, when I first presented to a GI "specialist" almost a year ago, I still had health insurance, although it was very, very expensive ($622 per month; I earn a little less than $20,000 per year). I requested my appointment be with the female "specialist" because I thought I might feel more comfortable with a female.
Everything was going fine throughout the exam. She asked me to point to the location of my pain. I pointed to my upper abdominal area, just a little right of midline, and explained how it went into my back, etc. She then asked me how I control my pain, and I told her I had been prescribed hydrocodone by my PCP. At that very moment, the look on her face changed, she informed me she did NOT think my pain was due to pancreatitis but that if it was, she would first refer me to a pain specialist to get me "off of narcotics" and then refer me to the University of Colorado. She basically wiped her hands of me and dismissed me.
About a month later, my "employer-provided" insurance premiums rose to $711 per month, and I simply could not afford this any longer, as I was working less and earning less because of my chronic pancreatitis. Before canceling my insurance, however, I called around to see what a private policy would cost. A representative from Blue Cross told me that I wouldn't find ANYONE to insure me in my state due to my pancreatitis, because I live in a state that is allowed to "discriminate."
Three months after my character and condition were misdiagnosed by the female GI "specialist," I was again hospitalized for pancreatitis (this time being UNINSURED). The CT scan showed a 6.6-cm "phlegmon" on the head of my pancreas (the exact area that I pointed out as the location of my pain). The size of this phlegmon was approximately half the size of my entire pancreas.
A GI doc from the same practice (they have a monopoly in my town) strolled into my room, and I promptly kicked him out, stating I refused to pay him for impugning my character and misdiagnosing me. (I was promptly yelled at by the nurses and docs for doing this.)
A month later, I was again hospitalized, with the same phlegmon that had grown slightly in size, and I now had wall thickening of my duodenum and a few other little goodies.
Again, another GI doc strolled into my room, and this time I permitted him/them to treat me. This time, it seemed as if they were taking my case seriously. They finally requested that I sign a release for records from my first hospitalization in another state, which I gladly did. I again mentioned my concern over my mother's death due to colon cancer, and they actually performed Hemoccult testing. They even gave me pancreatic enzymes (which they had never previously done). During this hospitalization, my breathing was the best it had ever been, and I had little need for oxygen. (I had had pneumonia during my prior hospitalization and atelectasis during other hospitalizations). However, I developed a bad "cold" that produced the thickest secretions I had ever seen in my life, almost choking me. I told the nurse about this, and she said it was probably just a bad "cold," and in all honesty, I figured she was probably right. My pulse ox was remarkably good throughout this hospitalization. I, my "bad cold" and very thick secretions were discharged on September 6, 2007. When I went to my followup appointment with my new assigned indigent-care PCP two weeks later, I still had this bad "cold" and complained about it to her. She said that though it was probably viral, she agreed to give me antibiotics (which didn't do a thing to help). All in all, this bad "cold" lasted for three weeks and finally resolved.
On October 2, 2007, during an otherwise "normal" day, I received an undated, three-sentence letter from my "assigned" PCP indicating that the DNA testing I "had done" while in the hospital confirmed that I have a "mild form" of cystic fibrosis. To say I was in shock doesn't even begin to describe it. NOBODY uttered the words "cystic fibrosis" to me nor did I have knowledge of or sign a consent permitting DNA testing to be performed on me.
I was uninsured at the time (but didn't have to be if the female "professional" I had seen had done her job properly because I was still insured at that time), and I've discovered since that the CFF stresses the importance of maintaining health insurance and can even provide financial help if patients cannot afford premiums).
Additionally, when they secretly performed this DNA testing, I was uninsured, and they knew it. If I had had the knowledge that they suspected CF and were planning to test for it, I could have asked the multitude of questions I would have had concerning this disease, and I very well may have DENIED consent to have DNA testing performed until I had had the opportunity to explore insurance laws in neighboring states and perhaps try to find a "friendlier" one where I could relocate that would agree to insure me BEFORE the "official" diagnosis of CF was made.
I did have an appointment with the nearest CF center to me (about 80 miles away) in the beginning of November; however, I was hospitalized once again for pancreatitis and could not keep that appointment. My car was then repossessed since I could no longer afford the payments due to my increasingly-worse illness, so I have no transportation to the center now.
I'm trying to find out as much as I can about CF, as it now seems to be affecting my lungs more. As I write this, I again have the same kind of bad "cold" that I had while in the hospital, my secretions are getting worse, and I'm plain exhausted. I don't have the money or the transportation to see a specialist in this regard, and I no longer hold any trust or respect for the "professionals" in my town.
I can't apply for disability because I earn about $210 to $220 per week now, and that's too much money to earn to be eligible for SSDI, yet it's an amount that is very difficult to exist on. I don't want to give up my job because it's the only source of pride I have left in my life.
I can understand and empathize with your concern about your father being tested. Both of my parents are deceased, but I've constantly been telling my daughter to have herself and my grandkids tested, but she isn't paying attention, and now I'm a "nag."
I now have no primary care doc, but I DO want to know what is going on with my body and whether any new "weird" things can be attributed to my CF.
I think the problems with the current system run the gamut from NOT testing to the situation I just outlined, and I couldn't agree with you more regarding funding for research with the MORE people having this disease, the MORE funding would be available.
Physicians need to learn to respect patients -- whether it's in a situation such as yours or one such as mine. I feel I have been completely disrepected in the last two years. I found the laboratory's website and printed out their very own INFORMED CONSENT form -- a form I never saw or signed -- outlining that I had consented to DNA testing voluntarily, was given the opportunity to ask questions about the disease, a copy of the consent made available to me, etc. -- all the things I'm complaining never happened in my case. I was required to have a PICC line be inserted during this very same hospitalization. I still have a copy of the consent I signed, revealing that every tiny detail of the procedure was explained to me (which it was), and my signature is on that form.
Two days ago, I filed a HIPAA complaint against the GI practice, the pulmonologist who ordered this DNA report (whom I've never met) and the laboratory that performed the testing. (This pulmonologist received this report on September 6 but didn't bother to send it to my PCP until September 25. I can see these dates on the copy of the report in my possession.) I have not received a reply as of yet.
America should be ashamed of itself in how it treats its citizens with respect to healthcare.
LouLou:
<div class="FTQUOTE"><begin quote><div class="FTQUOTE"><begin quote>Text</end quote></div>But will it revert to a profession more like pre HMO days? I wouldn't be opposed. By "pre HMO days" I'm talking about how before managed care was suggested (was it Nixon I'm drawing a blank). </end quote></div><div class="FTQUOTE"><begin quote>Text</end quote></div>
Yes, it was Nixon, and it's probably exactly why we're in the shape we are in today. He liked the idea of insurance companies earning more for doing less. From: <a target=_blank class=ftalternatingbarlinklarge href="http://businesspractices.kaiserpapers.info/nixononkaiser.html
">http://businesspractices.kaise...ononkaiser.html
</a>
<div class="FTQUOTE"><begin quote>Ehrlichman: - the less care they give them, the more money they make. </end quote></div>
I was stunned when I read your "Knowledge is power" quote because within the last half hour, I used the exact same quote when posting on another board.
My case is a little different, though, but also involves insurance issues and arrogant physicians.
After almost two years of recurrent pancreatitis and a half dozen hospitalizations for same, diagnostic DNA testing for CF was performed during one of my hospitalizations without my knowledge or consent.
After relocating to my present location, when I first presented to a GI "specialist" almost a year ago, I still had health insurance, although it was very, very expensive ($622 per month; I earn a little less than $20,000 per year). I requested my appointment be with the female "specialist" because I thought I might feel more comfortable with a female.
Everything was going fine throughout the exam. She asked me to point to the location of my pain. I pointed to my upper abdominal area, just a little right of midline, and explained how it went into my back, etc. She then asked me how I control my pain, and I told her I had been prescribed hydrocodone by my PCP. At that very moment, the look on her face changed, she informed me she did NOT think my pain was due to pancreatitis but that if it was, she would first refer me to a pain specialist to get me "off of narcotics" and then refer me to the University of Colorado. She basically wiped her hands of me and dismissed me.
About a month later, my "employer-provided" insurance premiums rose to $711 per month, and I simply could not afford this any longer, as I was working less and earning less because of my chronic pancreatitis. Before canceling my insurance, however, I called around to see what a private policy would cost. A representative from Blue Cross told me that I wouldn't find ANYONE to insure me in my state due to my pancreatitis, because I live in a state that is allowed to "discriminate."
Three months after my character and condition were misdiagnosed by the female GI "specialist," I was again hospitalized for pancreatitis (this time being UNINSURED). The CT scan showed a 6.6-cm "phlegmon" on the head of my pancreas (the exact area that I pointed out as the location of my pain). The size of this phlegmon was approximately half the size of my entire pancreas.
A GI doc from the same practice (they have a monopoly in my town) strolled into my room, and I promptly kicked him out, stating I refused to pay him for impugning my character and misdiagnosing me. (I was promptly yelled at by the nurses and docs for doing this.)
A month later, I was again hospitalized, with the same phlegmon that had grown slightly in size, and I now had wall thickening of my duodenum and a few other little goodies.
Again, another GI doc strolled into my room, and this time I permitted him/them to treat me. This time, it seemed as if they were taking my case seriously. They finally requested that I sign a release for records from my first hospitalization in another state, which I gladly did. I again mentioned my concern over my mother's death due to colon cancer, and they actually performed Hemoccult testing. They even gave me pancreatic enzymes (which they had never previously done). During this hospitalization, my breathing was the best it had ever been, and I had little need for oxygen. (I had had pneumonia during my prior hospitalization and atelectasis during other hospitalizations). However, I developed a bad "cold" that produced the thickest secretions I had ever seen in my life, almost choking me. I told the nurse about this, and she said it was probably just a bad "cold," and in all honesty, I figured she was probably right. My pulse ox was remarkably good throughout this hospitalization. I, my "bad cold" and very thick secretions were discharged on September 6, 2007. When I went to my followup appointment with my new assigned indigent-care PCP two weeks later, I still had this bad "cold" and complained about it to her. She said that though it was probably viral, she agreed to give me antibiotics (which didn't do a thing to help). All in all, this bad "cold" lasted for three weeks and finally resolved.
On October 2, 2007, during an otherwise "normal" day, I received an undated, three-sentence letter from my "assigned" PCP indicating that the DNA testing I "had done" while in the hospital confirmed that I have a "mild form" of cystic fibrosis. To say I was in shock doesn't even begin to describe it. NOBODY uttered the words "cystic fibrosis" to me nor did I have knowledge of or sign a consent permitting DNA testing to be performed on me.
I was uninsured at the time (but didn't have to be if the female "professional" I had seen had done her job properly because I was still insured at that time), and I've discovered since that the CFF stresses the importance of maintaining health insurance and can even provide financial help if patients cannot afford premiums).
Additionally, when they secretly performed this DNA testing, I was uninsured, and they knew it. If I had had the knowledge that they suspected CF and were planning to test for it, I could have asked the multitude of questions I would have had concerning this disease, and I very well may have DENIED consent to have DNA testing performed until I had had the opportunity to explore insurance laws in neighboring states and perhaps try to find a "friendlier" one where I could relocate that would agree to insure me BEFORE the "official" diagnosis of CF was made.
I did have an appointment with the nearest CF center to me (about 80 miles away) in the beginning of November; however, I was hospitalized once again for pancreatitis and could not keep that appointment. My car was then repossessed since I could no longer afford the payments due to my increasingly-worse illness, so I have no transportation to the center now.
I'm trying to find out as much as I can about CF, as it now seems to be affecting my lungs more. As I write this, I again have the same kind of bad "cold" that I had while in the hospital, my secretions are getting worse, and I'm plain exhausted. I don't have the money or the transportation to see a specialist in this regard, and I no longer hold any trust or respect for the "professionals" in my town.
I can't apply for disability because I earn about $210 to $220 per week now, and that's too much money to earn to be eligible for SSDI, yet it's an amount that is very difficult to exist on. I don't want to give up my job because it's the only source of pride I have left in my life.
I can understand and empathize with your concern about your father being tested. Both of my parents are deceased, but I've constantly been telling my daughter to have herself and my grandkids tested, but she isn't paying attention, and now I'm a "nag."
I now have no primary care doc, but I DO want to know what is going on with my body and whether any new "weird" things can be attributed to my CF.
I think the problems with the current system run the gamut from NOT testing to the situation I just outlined, and I couldn't agree with you more regarding funding for research with the MORE people having this disease, the MORE funding would be available.
Physicians need to learn to respect patients -- whether it's in a situation such as yours or one such as mine. I feel I have been completely disrepected in the last two years. I found the laboratory's website and printed out their very own INFORMED CONSENT form -- a form I never saw or signed -- outlining that I had consented to DNA testing voluntarily, was given the opportunity to ask questions about the disease, a copy of the consent made available to me, etc. -- all the things I'm complaining never happened in my case. I was required to have a PICC line be inserted during this very same hospitalization. I still have a copy of the consent I signed, revealing that every tiny detail of the procedure was explained to me (which it was), and my signature is on that form.
Two days ago, I filed a HIPAA complaint against the GI practice, the pulmonologist who ordered this DNA report (whom I've never met) and the laboratory that performed the testing. (This pulmonologist received this report on September 6 but didn't bother to send it to my PCP until September 25. I can see these dates on the copy of the report in my possession.) I have not received a reply as of yet.
America should be ashamed of itself in how it treats its citizens with respect to healthcare.
<div class="FTQUOTE"><begin quote><div class="FTQUOTE"><begin quote>Text</end quote></div>But will it revert to a profession more like pre HMO days? I wouldn't be opposed. By "pre HMO days" I'm talking about how before managed care was suggested (was it Nixon I'm drawing a blank). </end quote></div><div class="FTQUOTE"><begin quote>Text</end quote></div>
Yes, it was Nixon, and it's probably exactly why we're in the shape we are in today. He liked the idea of insurance companies earning more for doing less. From: <a target=_blank class=ftalternatingbarlinklarge href="http://businesspractices.kaiserpapers.info/nixononkaiser.html
">http://businesspractices.kaise...ononkaiser.html
</a>
<div class="FTQUOTE"><begin quote>Ehrlichman: - the less care they give them, the more money they make. </end quote></div>
I was stunned when I read your "Knowledge is power" quote because within the last half hour, I used the exact same quote when posting on another board.
My case is a little different, though, but also involves insurance issues and arrogant physicians.
After almost two years of recurrent pancreatitis and a half dozen hospitalizations for same, diagnostic DNA testing for CF was performed during one of my hospitalizations without my knowledge or consent.
After relocating to my present location, when I first presented to a GI "specialist" almost a year ago, I still had health insurance, although it was very, very expensive ($622 per month; I earn a little less than $20,000 per year). I requested my appointment be with the female "specialist" because I thought I might feel more comfortable with a female.
Everything was going fine throughout the exam. She asked me to point to the location of my pain. I pointed to my upper abdominal area, just a little right of midline, and explained how it went into my back, etc. She then asked me how I control my pain, and I told her I had been prescribed hydrocodone by my PCP. At that very moment, the look on her face changed, she informed me she did NOT think my pain was due to pancreatitis but that if it was, she would first refer me to a pain specialist to get me "off of narcotics" and then refer me to the University of Colorado. She basically wiped her hands of me and dismissed me.
About a month later, my "employer-provided" insurance premiums rose to $711 per month, and I simply could not afford this any longer, as I was working less and earning less because of my chronic pancreatitis. Before canceling my insurance, however, I called around to see what a private policy would cost. A representative from Blue Cross told me that I wouldn't find ANYONE to insure me in my state due to my pancreatitis, because I live in a state that is allowed to "discriminate."
Three months after my character and condition were misdiagnosed by the female GI "specialist," I was again hospitalized for pancreatitis (this time being UNINSURED). The CT scan showed a 6.6-cm "phlegmon" on the head of my pancreas (the exact area that I pointed out as the location of my pain). The size of this phlegmon was approximately half the size of my entire pancreas.
A GI doc from the same practice (they have a monopoly in my town) strolled into my room, and I promptly kicked him out, stating I refused to pay him for impugning my character and misdiagnosing me. (I was promptly yelled at by the nurses and docs for doing this.)
A month later, I was again hospitalized, with the same phlegmon that had grown slightly in size, and I now had wall thickening of my duodenum and a few other little goodies.
Again, another GI doc strolled into my room, and this time I permitted him/them to treat me. This time, it seemed as if they were taking my case seriously. They finally requested that I sign a release for records from my first hospitalization in another state, which I gladly did. I again mentioned my concern over my mother's death due to colon cancer, and they actually performed Hemoccult testing. They even gave me pancreatic enzymes (which they had never previously done). During this hospitalization, my breathing was the best it had ever been, and I had little need for oxygen. (I had had pneumonia during my prior hospitalization and atelectasis during other hospitalizations). However, I developed a bad "cold" that produced the thickest secretions I had ever seen in my life, almost choking me. I told the nurse about this, and she said it was probably just a bad "cold," and in all honesty, I figured she was probably right. My pulse ox was remarkably good throughout this hospitalization. I, my "bad cold" and very thick secretions were discharged on September 6, 2007. When I went to my followup appointment with my new assigned indigent-care PCP two weeks later, I still had this bad "cold" and complained about it to her. She said that though it was probably viral, she agreed to give me antibiotics (which didn't do a thing to help). All in all, this bad "cold" lasted for three weeks and finally resolved.
On October 2, 2007, during an otherwise "normal" day, I received an undated, three-sentence letter from my "assigned" PCP indicating that the DNA testing I "had done" while in the hospital confirmed that I have a "mild form" of cystic fibrosis. To say I was in shock doesn't even begin to describe it. NOBODY uttered the words "cystic fibrosis" to me nor did I have knowledge of or sign a consent permitting DNA testing to be performed on me.
I was uninsured at the time (but didn't have to be if the female "professional" I had seen had done her job properly because I was still insured at that time), and I've discovered since that the CFF stresses the importance of maintaining health insurance and can even provide financial help if patients cannot afford premiums).
Additionally, when they secretly performed this DNA testing, I was uninsured, and they knew it. If I had had the knowledge that they suspected CF and were planning to test for it, I could have asked the multitude of questions I would have had concerning this disease, and I very well may have DENIED consent to have DNA testing performed until I had had the opportunity to explore insurance laws in neighboring states and perhaps try to find a "friendlier" one where I could relocate that would agree to insure me BEFORE the "official" diagnosis of CF was made.
I did have an appointment with the nearest CF center to me (about 80 miles away) in the beginning of November; however, I was hospitalized once again for pancreatitis and could not keep that appointment. My car was then repossessed since I could no longer afford the payments due to my increasingly-worse illness, so I have no transportation to the center now.
I'm trying to find out as much as I can about CF, as it now seems to be affecting my lungs more. As I write this, I again have the same kind of bad "cold" that I had while in the hospital, my secretions are getting worse, and I'm plain exhausted. I don't have the money or the transportation to see a specialist in this regard, and I no longer hold any trust or respect for the "professionals" in my town.
I can't apply for disability because I earn about $210 to $220 per week now, and that's too much money to earn to be eligible for SSDI, yet it's an amount that is very difficult to exist on. I don't want to give up my job because it's the only source of pride I have left in my life.
I can understand and empathize with your concern about your father being tested. Both of my parents are deceased, but I've constantly been telling my daughter to have herself and my grandkids tested, but she isn't paying attention, and now I'm a "nag."
I now have no primary care doc, but I DO want to know what is going on with my body and whether any new "weird" things can be attributed to my CF.
I think the problems with the current system run the gamut from NOT testing to the situation I just outlined, and I couldn't agree with you more regarding funding for research with the MORE people having this disease, the MORE funding would be available.
Physicians need to learn to respect patients -- whether it's in a situation such as yours or one such as mine. I feel I have been completely disrepected in the last two years. I found the laboratory's website and printed out their very own INFORMED CONSENT form -- a form I never saw or signed -- outlining that I had consented to DNA testing voluntarily, was given the opportunity to ask questions about the disease, a copy of the consent made available to me, etc. -- all the things I'm complaining never happened in my case. I was required to have a PICC line be inserted during this very same hospitalization. I still have a copy of the consent I signed, revealing that every tiny detail of the procedure was explained to me (which it was), and my signature is on that form.
Two days ago, I filed a HIPAA complaint against the GI practice, the pulmonologist who ordered this DNA report (whom I've never met) and the laboratory that performed the testing. (This pulmonologist received this report on September 6 but didn't bother to send it to my PCP until September 25. I can see these dates on the copy of the report in my possession.) I have not received a reply as of yet.
America should be ashamed of itself in how it treats its citizens with respect to healthcare.
LouLou:
<div class="FTQUOTE"><begin quote><div class="FTQUOTE"><begin quote>Text</end quote>But will it revert to a profession more like pre HMO days? I wouldn't be opposed. By "pre HMO days" I'm talking about how before managed care was suggested (was it Nixon I'm drawing a blank). </end quote><div class="FTQUOTE"><begin quote>Text</end quote>
Yes, it was Nixon, and it's probably exactly why we're in the shape we are in today. He liked the idea of insurance companies earning more for doing less. From: <a target=_blank class=ftalternatingbarlinklarge href="http://businesspractices.kaiserpapers.info/nixononkaiser.html
">http://businesspractices.kaise...ononkaiser.html
</a>
<div class="FTQUOTE"><begin quote>Ehrlichman: - the less care they give them, the more money they make. </end quote>
I was stunned when I read your "Knowledge is power" quote because within the last half hour, I used the exact same quote when posting on another board.
My case is a little different, though, but also involves insurance issues and arrogant physicians.
After almost two years of recurrent pancreatitis and a half dozen hospitalizations for same, diagnostic DNA testing for CF was performed during one of my hospitalizations without my knowledge or consent.
After relocating to my present location, when I first presented to a GI "specialist" almost a year ago, I still had health insurance, although it was very, very expensive ($622 per month; I earn a little less than $20,000 per year). I requested my appointment be with the female "specialist" because I thought I might feel more comfortable with a female.
Everything was going fine throughout the exam. She asked me to point to the location of my pain. I pointed to my upper abdominal area, just a little right of midline, and explained how it went into my back, etc. She then asked me how I control my pain, and I told her I had been prescribed hydrocodone by my PCP. At that very moment, the look on her face changed, she informed me she did NOT think my pain was due to pancreatitis but that if it was, she would first refer me to a pain specialist to get me "off of narcotics" and then refer me to the University of Colorado. She basically wiped her hands of me and dismissed me.
About a month later, my "employer-provided" insurance premiums rose to $711 per month, and I simply could not afford this any longer, as I was working less and earning less because of my chronic pancreatitis. Before canceling my insurance, however, I called around to see what a private policy would cost. A representative from Blue Cross told me that I wouldn't find ANYONE to insure me in my state due to my pancreatitis, because I live in a state that is allowed to "discriminate."
Three months after my character and condition were misdiagnosed by the female GI "specialist," I was again hospitalized for pancreatitis (this time being UNINSURED). The CT scan showed a 6.6-cm "phlegmon" on the head of my pancreas (the exact area that I pointed out as the location of my pain). The size of this phlegmon was approximately half the size of my entire pancreas.
A GI doc from the same practice (they have a monopoly in my town) strolled into my room, and I promptly kicked him out, stating I refused to pay him for impugning my character and misdiagnosing me. (I was promptly yelled at by the nurses and docs for doing this.)
A month later, I was again hospitalized, with the same phlegmon that had grown slightly in size, and I now had wall thickening of my duodenum and a few other little goodies.
Again, another GI doc strolled into my room, and this time I permitted him/them to treat me. This time, it seemed as if they were taking my case seriously. They finally requested that I sign a release for records from my first hospitalization in another state, which I gladly did. I again mentioned my concern over my mother's death due to colon cancer, and they actually performed Hemoccult testing. They even gave me pancreatic enzymes (which they had never previously done). During this hospitalization, my breathing was the best it had ever been, and I had little need for oxygen. (I had had pneumonia during my prior hospitalization and atelectasis during other hospitalizations). However, I developed a bad "cold" that produced the thickest secretions I had ever seen in my life, almost choking me. I told the nurse about this, and she said it was probably just a bad "cold," and in all honesty, I figured she was probably right. My pulse ox was remarkably good throughout this hospitalization. I, my "bad cold" and very thick secretions were discharged on September 6, 2007. When I went to my followup appointment with my new assigned indigent-care PCP two weeks later, I still had this bad "cold" and complained about it to her. She said that though it was probably viral, she agreed to give me antibiotics (which didn't do a thing to help). All in all, this bad "cold" lasted for three weeks and finally resolved.
On October 2, 2007, during an otherwise "normal" day, I received an undated, three-sentence letter from my "assigned" PCP indicating that the DNA testing I "had done" while in the hospital confirmed that I have a "mild form" of cystic fibrosis. To say I was in shock doesn't even begin to describe it. NOBODY uttered the words "cystic fibrosis" to me nor did I have knowledge of or sign a consent permitting DNA testing to be performed on me.
I was uninsured at the time (but didn't have to be if the female "professional" I had seen had done her job properly because I was still insured at that time), and I've discovered since that the CFF stresses the importance of maintaining health insurance and can even provide financial help if patients cannot afford premiums).
Additionally, when they secretly performed this DNA testing, I was uninsured, and they knew it. If I had had the knowledge that they suspected CF and were planning to test for it, I could have asked the multitude of questions I would have had concerning this disease, and I very well may have DENIED consent to have DNA testing performed until I had had the opportunity to explore insurance laws in neighboring states and perhaps try to find a "friendlier" one where I could relocate that would agree to insure me BEFORE the "official" diagnosis of CF was made.
I did have an appointment with the nearest CF center to me (about 80 miles away) in the beginning of November; however, I was hospitalized once again for pancreatitis and could not keep that appointment. My car was then repossessed since I could no longer afford the payments due to my increasingly-worse illness, so I have no transportation to the center now.
I'm trying to find out as much as I can about CF, as it now seems to be affecting my lungs more. As I write this, I again have the same kind of bad "cold" that I had while in the hospital, my secretions are getting worse, and I'm plain exhausted. I don't have the money or the transportation to see a specialist in this regard, and I no longer hold any trust or respect for the "professionals" in my town.
I can't apply for disability because I earn about $210 to $220 per week now, and that's too much money to earn to be eligible for SSDI, yet it's an amount that is very difficult to exist on. I don't want to give up my job because it's the only source of pride I have left in my life.
I can understand and empathize with your concern about your father being tested. Both of my parents are deceased, but I've constantly been telling my daughter to have herself and my grandkids tested, but she isn't paying attention, and now I'm a "nag."
I now have no primary care doc, but I DO want to know what is going on with my body and whether any new "weird" things can be attributed to my CF.
I think the problems with the current system run the gamut from NOT testing to the situation I just outlined, and I couldn't agree with you more regarding funding for research with the MORE people having this disease, the MORE funding would be available.
Physicians need to learn to respect patients -- whether it's in a situation such as yours or one such as mine. I feel I have been completely disrepected in the last two years. I found the laboratory's website and printed out their very own INFORMED CONSENT form -- a form I never saw or signed -- outlining that I had consented to DNA testing voluntarily, was given the opportunity to ask questions about the disease, a copy of the consent made available to me, etc. -- all the things I'm complaining never happened in my case. I was required to have a PICC line be inserted during this very same hospitalization. I still have a copy of the consent I signed, revealing that every tiny detail of the procedure was explained to me (which it was), and my signature is on that form.
Two days ago, I filed a HIPAA complaint against the GI practice, the pulmonologist who ordered this DNA report (whom I've never met) and the laboratory that performed the testing. (This pulmonologist received this report on September 6 but didn't bother to send it to my PCP until September 25. I can see these dates on the copy of the report in my possession.) I have not received a reply as of yet.
America should be ashamed of itself in how it treats its citizens with respect to healthcare.
<div class="FTQUOTE"><begin quote><div class="FTQUOTE"><begin quote>Text</end quote>But will it revert to a profession more like pre HMO days? I wouldn't be opposed. By "pre HMO days" I'm talking about how before managed care was suggested (was it Nixon I'm drawing a blank). </end quote><div class="FTQUOTE"><begin quote>Text</end quote>
Yes, it was Nixon, and it's probably exactly why we're in the shape we are in today. He liked the idea of insurance companies earning more for doing less. From: <a target=_blank class=ftalternatingbarlinklarge href="http://businesspractices.kaiserpapers.info/nixononkaiser.html
">http://businesspractices.kaise...ononkaiser.html
</a>
<div class="FTQUOTE"><begin quote>Ehrlichman: - the less care they give them, the more money they make. </end quote>
I was stunned when I read your "Knowledge is power" quote because within the last half hour, I used the exact same quote when posting on another board.
My case is a little different, though, but also involves insurance issues and arrogant physicians.
After almost two years of recurrent pancreatitis and a half dozen hospitalizations for same, diagnostic DNA testing for CF was performed during one of my hospitalizations without my knowledge or consent.
After relocating to my present location, when I first presented to a GI "specialist" almost a year ago, I still had health insurance, although it was very, very expensive ($622 per month; I earn a little less than $20,000 per year). I requested my appointment be with the female "specialist" because I thought I might feel more comfortable with a female.
Everything was going fine throughout the exam. She asked me to point to the location of my pain. I pointed to my upper abdominal area, just a little right of midline, and explained how it went into my back, etc. She then asked me how I control my pain, and I told her I had been prescribed hydrocodone by my PCP. At that very moment, the look on her face changed, she informed me she did NOT think my pain was due to pancreatitis but that if it was, she would first refer me to a pain specialist to get me "off of narcotics" and then refer me to the University of Colorado. She basically wiped her hands of me and dismissed me.
About a month later, my "employer-provided" insurance premiums rose to $711 per month, and I simply could not afford this any longer, as I was working less and earning less because of my chronic pancreatitis. Before canceling my insurance, however, I called around to see what a private policy would cost. A representative from Blue Cross told me that I wouldn't find ANYONE to insure me in my state due to my pancreatitis, because I live in a state that is allowed to "discriminate."
Three months after my character and condition were misdiagnosed by the female GI "specialist," I was again hospitalized for pancreatitis (this time being UNINSURED). The CT scan showed a 6.6-cm "phlegmon" on the head of my pancreas (the exact area that I pointed out as the location of my pain). The size of this phlegmon was approximately half the size of my entire pancreas.
A GI doc from the same practice (they have a monopoly in my town) strolled into my room, and I promptly kicked him out, stating I refused to pay him for impugning my character and misdiagnosing me. (I was promptly yelled at by the nurses and docs for doing this.)
A month later, I was again hospitalized, with the same phlegmon that had grown slightly in size, and I now had wall thickening of my duodenum and a few other little goodies.
Again, another GI doc strolled into my room, and this time I permitted him/them to treat me. This time, it seemed as if they were taking my case seriously. They finally requested that I sign a release for records from my first hospitalization in another state, which I gladly did. I again mentioned my concern over my mother's death due to colon cancer, and they actually performed Hemoccult testing. They even gave me pancreatic enzymes (which they had never previously done). During this hospitalization, my breathing was the best it had ever been, and I had little need for oxygen. (I had had pneumonia during my prior hospitalization and atelectasis during other hospitalizations). However, I developed a bad "cold" that produced the thickest secretions I had ever seen in my life, almost choking me. I told the nurse about this, and she said it was probably just a bad "cold," and in all honesty, I figured she was probably right. My pulse ox was remarkably good throughout this hospitalization. I, my "bad cold" and very thick secretions were discharged on September 6, 2007. When I went to my followup appointment with my new assigned indigent-care PCP two weeks later, I still had this bad "cold" and complained about it to her. She said that though it was probably viral, she agreed to give me antibiotics (which didn't do a thing to help). All in all, this bad "cold" lasted for three weeks and finally resolved.
On October 2, 2007, during an otherwise "normal" day, I received an undated, three-sentence letter from my "assigned" PCP indicating that the DNA testing I "had done" while in the hospital confirmed that I have a "mild form" of cystic fibrosis. To say I was in shock doesn't even begin to describe it. NOBODY uttered the words "cystic fibrosis" to me nor did I have knowledge of or sign a consent permitting DNA testing to be performed on me.
I was uninsured at the time (but didn't have to be if the female "professional" I had seen had done her job properly because I was still insured at that time), and I've discovered since that the CFF stresses the importance of maintaining health insurance and can even provide financial help if patients cannot afford premiums).
Additionally, when they secretly performed this DNA testing, I was uninsured, and they knew it. If I had had the knowledge that they suspected CF and were planning to test for it, I could have asked the multitude of questions I would have had concerning this disease, and I very well may have DENIED consent to have DNA testing performed until I had had the opportunity to explore insurance laws in neighboring states and perhaps try to find a "friendlier" one where I could relocate that would agree to insure me BEFORE the "official" diagnosis of CF was made.
I did have an appointment with the nearest CF center to me (about 80 miles away) in the beginning of November; however, I was hospitalized once again for pancreatitis and could not keep that appointment. My car was then repossessed since I could no longer afford the payments due to my increasingly-worse illness, so I have no transportation to the center now.
I'm trying to find out as much as I can about CF, as it now seems to be affecting my lungs more. As I write this, I again have the same kind of bad "cold" that I had while in the hospital, my secretions are getting worse, and I'm plain exhausted. I don't have the money or the transportation to see a specialist in this regard, and I no longer hold any trust or respect for the "professionals" in my town.
I can't apply for disability because I earn about $210 to $220 per week now, and that's too much money to earn to be eligible for SSDI, yet it's an amount that is very difficult to exist on. I don't want to give up my job because it's the only source of pride I have left in my life.
I can understand and empathize with your concern about your father being tested. Both of my parents are deceased, but I've constantly been telling my daughter to have herself and my grandkids tested, but she isn't paying attention, and now I'm a "nag."
I now have no primary care doc, but I DO want to know what is going on with my body and whether any new "weird" things can be attributed to my CF.
I think the problems with the current system run the gamut from NOT testing to the situation I just outlined, and I couldn't agree with you more regarding funding for research with the MORE people having this disease, the MORE funding would be available.
Physicians need to learn to respect patients -- whether it's in a situation such as yours or one such as mine. I feel I have been completely disrepected in the last two years. I found the laboratory's website and printed out their very own INFORMED CONSENT form -- a form I never saw or signed -- outlining that I had consented to DNA testing voluntarily, was given the opportunity to ask questions about the disease, a copy of the consent made available to me, etc. -- all the things I'm complaining never happened in my case. I was required to have a PICC line be inserted during this very same hospitalization. I still have a copy of the consent I signed, revealing that every tiny detail of the procedure was explained to me (which it was), and my signature is on that form.
Two days ago, I filed a HIPAA complaint against the GI practice, the pulmonologist who ordered this DNA report (whom I've never met) and the laboratory that performed the testing. (This pulmonologist received this report on September 6 but didn't bother to send it to my PCP until September 25. I can see these dates on the copy of the report in my possession.) I have not received a reply as of yet.
America should be ashamed of itself in how it treats its citizens with respect to healthcare.
LouLou:
<div class="FTQUOTE"><begin quote><div class="FTQUOTE"><begin quote>Text</end quote>But will it revert to a profession more like pre HMO days? I wouldn't be opposed. By "pre HMO days" I'm talking about how before managed care was suggested (was it Nixon I'm drawing a blank). </end quote><div class="FTQUOTE"><begin quote>Text</end quote>
Yes, it was Nixon, and it's probably exactly why we're in the shape we are in today. He liked the idea of insurance companies earning more for doing less. From: <a target=_blank class=ftalternatingbarlinklarge href="http://businesspractices.kaiserpapers.info/nixononkaiser.html
">http://businesspractices.kaise...ononkaiser.html
</a>
<div class="FTQUOTE"><begin quote>Ehrlichman: - the less care they give them, the more money they make. </end quote>
I was stunned when I read your "Knowledge is power" quote because within the last half hour, I used the exact same quote when posting on another board.
My case is a little different, though, but also involves insurance issues and arrogant physicians.
After almost two years of recurrent pancreatitis and a half dozen hospitalizations for same, diagnostic DNA testing for CF was performed during one of my hospitalizations without my knowledge or consent.
After relocating to my present location, when I first presented to a GI "specialist" almost a year ago, I still had health insurance, although it was very, very expensive ($622 per month; I earn a little less than $20,000 per year). I requested my appointment be with the female "specialist" because I thought I might feel more comfortable with a female.
Everything was going fine throughout the exam. She asked me to point to the location of my pain. I pointed to my upper abdominal area, just a little right of midline, and explained how it went into my back, etc. She then asked me how I control my pain, and I told her I had been prescribed hydrocodone by my PCP. At that very moment, the look on her face changed, she informed me she did NOT think my pain was due to pancreatitis but that if it was, she would first refer me to a pain specialist to get me "off of narcotics" and then refer me to the University of Colorado. She basically wiped her hands of me and dismissed me.
About a month later, my "employer-provided" insurance premiums rose to $711 per month, and I simply could not afford this any longer, as I was working less and earning less because of my chronic pancreatitis. Before canceling my insurance, however, I called around to see what a private policy would cost. A representative from Blue Cross told me that I wouldn't find ANYONE to insure me in my state due to my pancreatitis, because I live in a state that is allowed to "discriminate."
Three months after my character and condition were misdiagnosed by the female GI "specialist," I was again hospitalized for pancreatitis (this time being UNINSURED). The CT scan showed a 6.6-cm "phlegmon" on the head of my pancreas (the exact area that I pointed out as the location of my pain). The size of this phlegmon was approximately half the size of my entire pancreas.
A GI doc from the same practice (they have a monopoly in my town) strolled into my room, and I promptly kicked him out, stating I refused to pay him for impugning my character and misdiagnosing me. (I was promptly yelled at by the nurses and docs for doing this.)
A month later, I was again hospitalized, with the same phlegmon that had grown slightly in size, and I now had wall thickening of my duodenum and a few other little goodies.
Again, another GI doc strolled into my room, and this time I permitted him/them to treat me. This time, it seemed as if they were taking my case seriously. They finally requested that I sign a release for records from my first hospitalization in another state, which I gladly did. I again mentioned my concern over my mother's death due to colon cancer, and they actually performed Hemoccult testing. They even gave me pancreatic enzymes (which they had never previously done). During this hospitalization, my breathing was the best it had ever been, and I had little need for oxygen. (I had had pneumonia during my prior hospitalization and atelectasis during other hospitalizations). However, I developed a bad "cold" that produced the thickest secretions I had ever seen in my life, almost choking me. I told the nurse about this, and she said it was probably just a bad "cold," and in all honesty, I figured she was probably right. My pulse ox was remarkably good throughout this hospitalization. I, my "bad cold" and very thick secretions were discharged on September 6, 2007. When I went to my followup appointment with my new assigned indigent-care PCP two weeks later, I still had this bad "cold" and complained about it to her. She said that though it was probably viral, she agreed to give me antibiotics (which didn't do a thing to help). All in all, this bad "cold" lasted for three weeks and finally resolved.
On October 2, 2007, during an otherwise "normal" day, I received an undated, three-sentence letter from my "assigned" PCP indicating that the DNA testing I "had done" while in the hospital confirmed that I have a "mild form" of cystic fibrosis. To say I was in shock doesn't even begin to describe it. NOBODY uttered the words "cystic fibrosis" to me nor did I have knowledge of or sign a consent permitting DNA testing to be performed on me.
I was uninsured at the time (but didn't have to be if the female "professional" I had seen had done her job properly because I was still insured at that time), and I've discovered since that the CFF stresses the importance of maintaining health insurance and can even provide financial help if patients cannot afford premiums).
Additionally, when they secretly performed this DNA testing, I was uninsured, and they knew it. If I had had the knowledge that they suspected CF and were planning to test for it, I could have asked the multitude of questions I would have had concerning this disease, and I very well may have DENIED consent to have DNA testing performed until I had had the opportunity to explore insurance laws in neighboring states and perhaps try to find a "friendlier" one where I could relocate that would agree to insure me BEFORE the "official" diagnosis of CF was made.
I did have an appointment with the nearest CF center to me (about 80 miles away) in the beginning of November; however, I was hospitalized once again for pancreatitis and could not keep that appointment. My car was then repossessed since I could no longer afford the payments due to my increasingly-worse illness, so I have no transportation to the center now.
I'm trying to find out as much as I can about CF, as it now seems to be affecting my lungs more. As I write this, I again have the same kind of bad "cold" that I had while in the hospital, my secretions are getting worse, and I'm plain exhausted. I don't have the money or the transportation to see a specialist in this regard, and I no longer hold any trust or respect for the "professionals" in my town.
I can't apply for disability because I earn about $210 to $220 per week now, and that's too much money to earn to be eligible for SSDI, yet it's an amount that is very difficult to exist on. I don't want to give up my job because it's the only source of pride I have left in my life.
I can understand and empathize with your concern about your father being tested. Both of my parents are deceased, but I've constantly been telling my daughter to have herself and my grandkids tested, but she isn't paying attention, and now I'm a "nag."
I now have no primary care doc, but I DO want to know what is going on with my body and whether any new "weird" things can be attributed to my CF.
I think the problems with the current system run the gamut from NOT testing to the situation I just outlined, and I couldn't agree with you more regarding funding for research with the MORE people having this disease, the MORE funding would be available.
Physicians need to learn to respect patients -- whether it's in a situation such as yours or one such as mine. I feel I have been completely disrepected in the last two years. I found the laboratory's website and printed out their very own INFORMED CONSENT form -- a form I never saw or signed -- outlining that I had consented to DNA testing voluntarily, was given the opportunity to ask questions about the disease, a copy of the consent made available to me, etc. -- all the things I'm complaining never happened in my case. I was required to have a PICC line be inserted during this very same hospitalization. I still have a copy of the consent I signed, revealing that every tiny detail of the procedure was explained to me (which it was), and my signature is on that form.
Two days ago, I filed a HIPAA complaint against the GI practice, the pulmonologist who ordered this DNA report (whom I've never met) and the laboratory that performed the testing. (This pulmonologist received this report on September 6 but didn't bother to send it to my PCP until September 25. I can see these dates on the copy of the report in my possession.) I have not received a reply as of yet.
America should be ashamed of itself in how it treats its citizens with respect to healthcare.
<div class="FTQUOTE"><begin quote><div class="FTQUOTE"><begin quote>Text</end quote>But will it revert to a profession more like pre HMO days? I wouldn't be opposed. By "pre HMO days" I'm talking about how before managed care was suggested (was it Nixon I'm drawing a blank). </end quote><div class="FTQUOTE"><begin quote>Text</end quote>
Yes, it was Nixon, and it's probably exactly why we're in the shape we are in today. He liked the idea of insurance companies earning more for doing less. From: <a target=_blank class=ftalternatingbarlinklarge href="http://businesspractices.kaiserpapers.info/nixononkaiser.html
">http://businesspractices.kaise...ononkaiser.html
</a>
<div class="FTQUOTE"><begin quote>Ehrlichman: - the less care they give them, the more money they make. </end quote>
I was stunned when I read your "Knowledge is power" quote because within the last half hour, I used the exact same quote when posting on another board.
My case is a little different, though, but also involves insurance issues and arrogant physicians.
After almost two years of recurrent pancreatitis and a half dozen hospitalizations for same, diagnostic DNA testing for CF was performed during one of my hospitalizations without my knowledge or consent.
After relocating to my present location, when I first presented to a GI "specialist" almost a year ago, I still had health insurance, although it was very, very expensive ($622 per month; I earn a little less than $20,000 per year). I requested my appointment be with the female "specialist" because I thought I might feel more comfortable with a female.
Everything was going fine throughout the exam. She asked me to point to the location of my pain. I pointed to my upper abdominal area, just a little right of midline, and explained how it went into my back, etc. She then asked me how I control my pain, and I told her I had been prescribed hydrocodone by my PCP. At that very moment, the look on her face changed, she informed me she did NOT think my pain was due to pancreatitis but that if it was, she would first refer me to a pain specialist to get me "off of narcotics" and then refer me to the University of Colorado. She basically wiped her hands of me and dismissed me.
About a month later, my "employer-provided" insurance premiums rose to $711 per month, and I simply could not afford this any longer, as I was working less and earning less because of my chronic pancreatitis. Before canceling my insurance, however, I called around to see what a private policy would cost. A representative from Blue Cross told me that I wouldn't find ANYONE to insure me in my state due to my pancreatitis, because I live in a state that is allowed to "discriminate."
Three months after my character and condition were misdiagnosed by the female GI "specialist," I was again hospitalized for pancreatitis (this time being UNINSURED). The CT scan showed a 6.6-cm "phlegmon" on the head of my pancreas (the exact area that I pointed out as the location of my pain). The size of this phlegmon was approximately half the size of my entire pancreas.
A GI doc from the same practice (they have a monopoly in my town) strolled into my room, and I promptly kicked him out, stating I refused to pay him for impugning my character and misdiagnosing me. (I was promptly yelled at by the nurses and docs for doing this.)
A month later, I was again hospitalized, with the same phlegmon that had grown slightly in size, and I now had wall thickening of my duodenum and a few other little goodies.
Again, another GI doc strolled into my room, and this time I permitted him/them to treat me. This time, it seemed as if they were taking my case seriously. They finally requested that I sign a release for records from my first hospitalization in another state, which I gladly did. I again mentioned my concern over my mother's death due to colon cancer, and they actually performed Hemoccult testing. They even gave me pancreatic enzymes (which they had never previously done). During this hospitalization, my breathing was the best it had ever been, and I had little need for oxygen. (I had had pneumonia during my prior hospitalization and atelectasis during other hospitalizations). However, I developed a bad "cold" that produced the thickest secretions I had ever seen in my life, almost choking me. I told the nurse about this, and she said it was probably just a bad "cold," and in all honesty, I figured she was probably right. My pulse ox was remarkably good throughout this hospitalization. I, my "bad cold" and very thick secretions were discharged on September 6, 2007. When I went to my followup appointment with my new assigned indigent-care PCP two weeks later, I still had this bad "cold" and complained about it to her. She said that though it was probably viral, she agreed to give me antibiotics (which didn't do a thing to help). All in all, this bad "cold" lasted for three weeks and finally resolved.
On October 2, 2007, during an otherwise "normal" day, I received an undated, three-sentence letter from my "assigned" PCP indicating that the DNA testing I "had done" while in the hospital confirmed that I have a "mild form" of cystic fibrosis. To say I was in shock doesn't even begin to describe it. NOBODY uttered the words "cystic fibrosis" to me nor did I have knowledge of or sign a consent permitting DNA testing to be performed on me.
I was uninsured at the time (but didn't have to be if the female "professional" I had seen had done her job properly because I was still insured at that time), and I've discovered since that the CFF stresses the importance of maintaining health insurance and can even provide financial help if patients cannot afford premiums).
Additionally, when they secretly performed this DNA testing, I was uninsured, and they knew it. If I had had the knowledge that they suspected CF and were planning to test for it, I could have asked the multitude of questions I would have had concerning this disease, and I very well may have DENIED consent to have DNA testing performed until I had had the opportunity to explore insurance laws in neighboring states and perhaps try to find a "friendlier" one where I could relocate that would agree to insure me BEFORE the "official" diagnosis of CF was made.
I did have an appointment with the nearest CF center to me (about 80 miles away) in the beginning of November; however, I was hospitalized once again for pancreatitis and could not keep that appointment. My car was then repossessed since I could no longer afford the payments due to my increasingly-worse illness, so I have no transportation to the center now.
I'm trying to find out as much as I can about CF, as it now seems to be affecting my lungs more. As I write this, I again have the same kind of bad "cold" that I had while in the hospital, my secretions are getting worse, and I'm plain exhausted. I don't have the money or the transportation to see a specialist in this regard, and I no longer hold any trust or respect for the "professionals" in my town.
I can't apply for disability because I earn about $210 to $220 per week now, and that's too much money to earn to be eligible for SSDI, yet it's an amount that is very difficult to exist on. I don't want to give up my job because it's the only source of pride I have left in my life.
I can understand and empathize with your concern about your father being tested. Both of my parents are deceased, but I've constantly been telling my daughter to have herself and my grandkids tested, but she isn't paying attention, and now I'm a "nag."
I now have no primary care doc, but I DO want to know what is going on with my body and whether any new "weird" things can be attributed to my CF.
I think the problems with the current system run the gamut from NOT testing to the situation I just outlined, and I couldn't agree with you more regarding funding for research with the MORE people having this disease, the MORE funding would be available.
Physicians need to learn to respect patients -- whether it's in a situation such as yours or one such as mine. I feel I have been completely disrepected in the last two years. I found the laboratory's website and printed out their very own INFORMED CONSENT form -- a form I never saw or signed -- outlining that I had consented to DNA testing voluntarily, was given the opportunity to ask questions about the disease, a copy of the consent made available to me, etc. -- all the things I'm complaining never happened in my case. I was required to have a PICC line be inserted during this very same hospitalization. I still have a copy of the consent I signed, revealing that every tiny detail of the procedure was explained to me (which it was), and my signature is on that form.
Two days ago, I filed a HIPAA complaint against the GI practice, the pulmonologist who ordered this DNA report (whom I've never met) and the laboratory that performed the testing. (This pulmonologist received this report on September 6 but didn't bother to send it to my PCP until September 25. I can see these dates on the copy of the report in my possession.) I have not received a reply as of yet.
America should be ashamed of itself in how it treats its citizens with respect to healthcare.
Scarlett81
New member
also adopted and though it wasn't a closed adoption, i have no contact w my birth parents. they wouldn't be able to do the test anyhow. wish i could offer more but fyi to all interested in a general pole of who's parents have been tested or not.
sorry your dad is going through this. i think its good that you are trying to encourage him to look into this.
sorry your dad is going through this. i think its good that you are trying to encourage him to look into this.
Scarlett81
New member
also adopted and though it wasn't a closed adoption, i have no contact w my birth parents. they wouldn't be able to do the test anyhow. wish i could offer more but fyi to all interested in a general pole of who's parents have been tested or not.
sorry your dad is going through this. i think its good that you are trying to encourage him to look into this.
sorry your dad is going through this. i think its good that you are trying to encourage him to look into this.
Scarlett81
New member
also adopted and though it wasn't a closed adoption, i have no contact w my birth parents. they wouldn't be able to do the test anyhow. wish i could offer more but fyi to all interested in a general pole of who's parents have been tested or not.
sorry your dad is going through this. i think its good that you are trying to encourage him to look into this.
sorry your dad is going through this. i think its good that you are trying to encourage him to look into this.
Scarlett81
New member
also adopted and though it wasn't a closed adoption, i have no contact w my birth parents. they wouldn't be able to do the test anyhow. wish i could offer more but fyi to all interested in a general pole of who's parents have been tested or not.
sorry your dad is going through this. i think its good that you are trying to encourage him to look into this.
sorry your dad is going through this. i think its good that you are trying to encourage him to look into this.
Scarlett81
New member
also adopted and though it wasn't a closed adoption, i have no contact w my birth parents. they wouldn't be able to do the test anyhow. wish i could offer more but fyi to all interested in a general pole of who's parents have been tested or not.
sorry your dad is going through this. i think its good that you are trying to encourage him to look into this.
sorry your dad is going through this. i think its good that you are trying to encourage him to look into this.