cheerfulpuppies
Member
I just turned 28 and have been going to Albany Medical Center for my CF for the past 20 years. In Peds they were aggressive with treatment, visits every two months, throat cultures every time, antibiotics, annual blood draws, x-rays the whole nine yards.
I was with out insurance for two years from the age of 21-23 I started atthe adult clinic with all new doctors and a completely different approach. The first thing my doctor said to me was "so why is it you think you have CF?", because my lungs were still clear despite not having any treatments for two or more years, and then he said "so what is it you want me to do for you?" . I was so blown away I didn't know what to say.
I don't know where to start. To try to make a long story short, since I have been back to the adult clinic (for the past five years) I have had 3 x-rays done, the third was only two days ago, 2 throat cultures, maybe 4 blood draws, a glucose tolerance test that was over 200 both for the first and second hour, and antibiotic therapy maybe 5 times in the last 5 years. I had to practically beg to do DNASE once a day and when I wanted to do it twice a day the doctor told me NO, and do the hypertonic saline if I wanted. And his response to the high sugars "the next time you go to the endocrinologist, mention it to him". To this day I can't remember any patient teaching occuring since I have been in the adult clinic.
I only worked part time for the longest time and then I got a full time job but still couldn't afford my medications, my doctors answer get rid of all your cats and then you can affor your meds. So he told me the next time I came in that he wanted me to get rid of most of my cats (that never happened). Well five years later I still struggle with the doctors who don't seem to do much, medical bills I only can handle because my boyfriend pays for my medical copays. I am also a Nursing student, graduating in May 2008, currently a new LPN and college grad. I feel everytime I go to the doctors they don't listen to me, they don't take me seriously because I don't show "text book" symptoms, I used to be non-compliant, and they definately don't treat me medically like peds did.
I have come home in tears from frustration because I don't know what to do. The past year I have turned my self around medically and have been compliant but how do I fight this disease if my doctors sit back and do very little patient teaching and treating? EVERY time I go to the CF center my doctor seems more concerned that I don't take birth control than I may have an infection brewing. Ahhhhhhhhhhhhhh ! ! ! ! ! To add insult to injury the last time I had a BAD sinus infection where I would wake up every 30 minutes coughing from the phlem I had to call into work sick because I didn't want to get my patients in ICU sick. I called my mom crying because I didn't know what to do I usually don't get sick like this very often, she told me to call the CF doctors (on a Saturday), can you believe the doctor would not give me an anitbiotic because I was not on birth control. He wanted me to go to the ER to get a pregnancy test done first, then when I got my period a couple of hours later, he still refused to call in a Rx.
Just recently my lung function went down 5%, they told me to do TOBI for three weeks and have another PFT done. Of course I had to ask for an x-ray (again) which it seems like he still didn't want to do, and I had to ask 4 times to get my results of my last sputum which turned out to have MRSA in it but apparently that is not a concern for them because they sat on the results for the last 3 months and have no intentions of treating me now.
I am so confussed, frustrated, hurt, dumbfounded, and don't know what to do.
I just want to say sorry for the long blog, I have all these pent up frustrations and am at a total loss. Any suggestion would be GREATLY APPRECIATED!
I was with out insurance for two years from the age of 21-23 I started atthe adult clinic with all new doctors and a completely different approach. The first thing my doctor said to me was "so why is it you think you have CF?", because my lungs were still clear despite not having any treatments for two or more years, and then he said "so what is it you want me to do for you?" . I was so blown away I didn't know what to say.
I don't know where to start. To try to make a long story short, since I have been back to the adult clinic (for the past five years) I have had 3 x-rays done, the third was only two days ago, 2 throat cultures, maybe 4 blood draws, a glucose tolerance test that was over 200 both for the first and second hour, and antibiotic therapy maybe 5 times in the last 5 years. I had to practically beg to do DNASE once a day and when I wanted to do it twice a day the doctor told me NO, and do the hypertonic saline if I wanted. And his response to the high sugars "the next time you go to the endocrinologist, mention it to him". To this day I can't remember any patient teaching occuring since I have been in the adult clinic.
I only worked part time for the longest time and then I got a full time job but still couldn't afford my medications, my doctors answer get rid of all your cats and then you can affor your meds. So he told me the next time I came in that he wanted me to get rid of most of my cats (that never happened). Well five years later I still struggle with the doctors who don't seem to do much, medical bills I only can handle because my boyfriend pays for my medical copays. I am also a Nursing student, graduating in May 2008, currently a new LPN and college grad. I feel everytime I go to the doctors they don't listen to me, they don't take me seriously because I don't show "text book" symptoms, I used to be non-compliant, and they definately don't treat me medically like peds did.
I have come home in tears from frustration because I don't know what to do. The past year I have turned my self around medically and have been compliant but how do I fight this disease if my doctors sit back and do very little patient teaching and treating? EVERY time I go to the CF center my doctor seems more concerned that I don't take birth control than I may have an infection brewing. Ahhhhhhhhhhhhhh ! ! ! ! ! To add insult to injury the last time I had a BAD sinus infection where I would wake up every 30 minutes coughing from the phlem I had to call into work sick because I didn't want to get my patients in ICU sick. I called my mom crying because I didn't know what to do I usually don't get sick like this very often, she told me to call the CF doctors (on a Saturday), can you believe the doctor would not give me an anitbiotic because I was not on birth control. He wanted me to go to the ER to get a pregnancy test done first, then when I got my period a couple of hours later, he still refused to call in a Rx.
Just recently my lung function went down 5%, they told me to do TOBI for three weeks and have another PFT done. Of course I had to ask for an x-ray (again) which it seems like he still didn't want to do, and I had to ask 4 times to get my results of my last sputum which turned out to have MRSA in it but apparently that is not a concern for them because they sat on the results for the last 3 months and have no intentions of treating me now.
I am so confussed, frustrated, hurt, dumbfounded, and don't know what to do.
I just want to say sorry for the long blog, I have all these pent up frustrations and am at a total loss. Any suggestion would be GREATLY APPRECIATED!