Hello,
My name is Marci and I am new to this site and this is my first blog. I don't think this is in the right place so please forgive me. Unfortunatley I can't figure out how to move it sooo.
I have been in the hospital for the last week for a tune-up and one of the nurses suggested I get involved with the online support. I have been reading and crying and laughing all week. I can not express how thankful I am to all of you. Let me start with a great big, heartfelt "thank you".
Now, you probably want to know something about me: I turned 40 in December and have been celebrating ever since. I am married to a great guy who had no idea what he was getting into when we met in 1985 and married in 1991. We have two wonderful children Harrison, age 11, who has never been tested because "God could not be that cruel." Harrison has "issues" emotional, attentional, mood, controll -- he is exceptional, a bit too exceptional at times... We also have Elizabeth, almost 9 going on 16 (way too much attitude). To date, she is a carrier W1282X, But, I hold my breath fearing that she will one day be diagnosed like I was, latter in life.
My story: I was always sick as a kid, lots and lots of Abx. Went to college (UNC, go heels), met David, entered grad school (also UNC) to get my MSW, and started getting sick. First they called it alergies then bronchiectist. I passed a sweat test and initial gene mapping. I got my MSW and became a social worker, got married, and continued getting sick - lots of respitory infections. We moved from NC to CT. I was not as sick in CT as I was while we were in NC so... We wanted to start a family, more illness, misacriage, pneumonia, pregnancy, pneumonia, pneumonia ... you get the picture. We now live in CA, have two children and I am almost always sick. My doctor doesn't know what to do with me and suggests I go to National Jewish Hospital in Denver. Works for me but, insurance says "no". They send me to an infectious disease doc who wants to do "an open lung bioposy". We say hell no, and I go to Denver prepared to pay if I have to (thankfully the new insurance said yes). Long story short, they said "you look like a duck, you quack like a duck, you must be a duck". Sure enough, they found the other bad gene D1152H to go with W1282X that they already knew about. The cherry on the top -- I also have m.abscessus. We tried really hard to get rid of it but like the CF, I can't get rid of it. While all of this is bad, I know I am lucky since I don't have any pancreatic involvement.
Fast forward 5 years, I had to stop working, too many germs, too hard on the system. I now collect disability and have finally, (this week while in the hospital) admitted that I have a disease. The river "denile" was really nice but I now have to accept the hand I have been delt, "pull up my big girl panties and deal". Not for me but for the people who love me , especially my children. I want to see Elizabeth grow up, graduate school and college, get married etc... I need to see Harrison overcome the difficulties and become a productive member of society.
What changed you may be asking. Well, I decided December 2006 that everyone was full of crap, I was better off before I knew I had CF and I knew better. I secretly went off all the meds, stopped everything except going to the gym. I felt pretty good for about 6 months and then I stopped going to the gym regularlly and started a slow, downward spiral. I just didn't have any motivation to turn it around, I got used to the coughing and frankly it was better then the meds. I spent the year (2007) enjoying being med free, celebrating my family and friends many of which turned 40. December, January, and February I was busy celebrating me, and my birthday (actual date 12-19-67) and living. I traveled and we celebrated that I was 40 and I am darn glad to have made that milestone. I look forward to the celebration that 45 and 50 will bring.
Unfortuantley, 2008 has not been kind to me. I had 2 BIG kicks in the butt -- 1. getting the flu in January and 2. the week before my already scheduled clinic appointment (last week) I woke the entire house with yet another coughing attack -- I slept through it. My son wached me, eventually woke me up and then told my mom (who is in town visiting) that he was afraid I was dying and he didn't know what he'd do without me. UGGGHHHH - Mom said she was no longer willing to sit back and watch me "self destruct". She says it is no longer about me it has to be about the children. So, I have sucked it up, literally I think, and once again "I am pulling up my big girl panties and dealing with it".
My stay in the hospital has been a pain in the butt, literally. They are pumping me full of ABX -- IV (zosyn), oral (avalox, zythromax, ethambutal) and inhaled (amikacin). More for the MAC then the CF. Lots of breathing treatments, hypertonic. pulmyzne and our friend, the vest (let me just say "I HATE THE VEST"). Needless to say my stomach is NOT happy and unfortunatley there is no relief in sight. I am here for another 3-4 days ( I hope). Then, I can get on with the business of living with CF and MAC and being a good soldier and following orders.
On a happy note, I know everyone reading this understands and has been here/there either personally or because someone you love has been in this awful place. Tomorrow, is a new day, the sun will shine, the birds will sing and, I will "pull up my big girl panties" (my new mantra). Thanks for listening and caring. I'll see you in cyber space.
Marci
I was released as planned on Sunday, Still miserable and feeling crapy. I returned to the CF Clinic yesterday. My PFT's were great back up to the 70's, the best since 2005. When I explained that I would gladly swap lower pft's for overall feeling better / well being they actually heard me and they decided to D/C all my oral meds. I still have to do the few inhalation therapies, keep using the vest and I'll check back in 6 weeks. So I've crossed my fingers and wait.
My name is Marci and I am new to this site and this is my first blog. I don't think this is in the right place so please forgive me. Unfortunatley I can't figure out how to move it sooo.
I have been in the hospital for the last week for a tune-up and one of the nurses suggested I get involved with the online support. I have been reading and crying and laughing all week. I can not express how thankful I am to all of you. Let me start with a great big, heartfelt "thank you".
Now, you probably want to know something about me: I turned 40 in December and have been celebrating ever since. I am married to a great guy who had no idea what he was getting into when we met in 1985 and married in 1991. We have two wonderful children Harrison, age 11, who has never been tested because "God could not be that cruel." Harrison has "issues" emotional, attentional, mood, controll -- he is exceptional, a bit too exceptional at times... We also have Elizabeth, almost 9 going on 16 (way too much attitude). To date, she is a carrier W1282X, But, I hold my breath fearing that she will one day be diagnosed like I was, latter in life.
My story: I was always sick as a kid, lots and lots of Abx. Went to college (UNC, go heels), met David, entered grad school (also UNC) to get my MSW, and started getting sick. First they called it alergies then bronchiectist. I passed a sweat test and initial gene mapping. I got my MSW and became a social worker, got married, and continued getting sick - lots of respitory infections. We moved from NC to CT. I was not as sick in CT as I was while we were in NC so... We wanted to start a family, more illness, misacriage, pneumonia, pregnancy, pneumonia, pneumonia ... you get the picture. We now live in CA, have two children and I am almost always sick. My doctor doesn't know what to do with me and suggests I go to National Jewish Hospital in Denver. Works for me but, insurance says "no". They send me to an infectious disease doc who wants to do "an open lung bioposy". We say hell no, and I go to Denver prepared to pay if I have to (thankfully the new insurance said yes). Long story short, they said "you look like a duck, you quack like a duck, you must be a duck". Sure enough, they found the other bad gene D1152H to go with W1282X that they already knew about. The cherry on the top -- I also have m.abscessus. We tried really hard to get rid of it but like the CF, I can't get rid of it. While all of this is bad, I know I am lucky since I don't have any pancreatic involvement.
Fast forward 5 years, I had to stop working, too many germs, too hard on the system. I now collect disability and have finally, (this week while in the hospital) admitted that I have a disease. The river "denile" was really nice but I now have to accept the hand I have been delt, "pull up my big girl panties and deal". Not for me but for the people who love me , especially my children. I want to see Elizabeth grow up, graduate school and college, get married etc... I need to see Harrison overcome the difficulties and become a productive member of society.
What changed you may be asking. Well, I decided December 2006 that everyone was full of crap, I was better off before I knew I had CF and I knew better. I secretly went off all the meds, stopped everything except going to the gym. I felt pretty good for about 6 months and then I stopped going to the gym regularlly and started a slow, downward spiral. I just didn't have any motivation to turn it around, I got used to the coughing and frankly it was better then the meds. I spent the year (2007) enjoying being med free, celebrating my family and friends many of which turned 40. December, January, and February I was busy celebrating me, and my birthday (actual date 12-19-67) and living. I traveled and we celebrated that I was 40 and I am darn glad to have made that milestone. I look forward to the celebration that 45 and 50 will bring.
Unfortuantley, 2008 has not been kind to me. I had 2 BIG kicks in the butt -- 1. getting the flu in January and 2. the week before my already scheduled clinic appointment (last week) I woke the entire house with yet another coughing attack -- I slept through it. My son wached me, eventually woke me up and then told my mom (who is in town visiting) that he was afraid I was dying and he didn't know what he'd do without me. UGGGHHHH - Mom said she was no longer willing to sit back and watch me "self destruct". She says it is no longer about me it has to be about the children. So, I have sucked it up, literally I think, and once again "I am pulling up my big girl panties and dealing with it".
My stay in the hospital has been a pain in the butt, literally. They are pumping me full of ABX -- IV (zosyn), oral (avalox, zythromax, ethambutal) and inhaled (amikacin). More for the MAC then the CF. Lots of breathing treatments, hypertonic. pulmyzne and our friend, the vest (let me just say "I HATE THE VEST"). Needless to say my stomach is NOT happy and unfortunatley there is no relief in sight. I am here for another 3-4 days ( I hope). Then, I can get on with the business of living with CF and MAC and being a good soldier and following orders.
On a happy note, I know everyone reading this understands and has been here/there either personally or because someone you love has been in this awful place. Tomorrow, is a new day, the sun will shine, the birds will sing and, I will "pull up my big girl panties" (my new mantra). Thanks for listening and caring. I'll see you in cyber space.
Marci
I was released as planned on Sunday, Still miserable and feeling crapy. I returned to the CF Clinic yesterday. My PFT's were great back up to the 70's, the best since 2005. When I explained that I would gladly swap lower pft's for overall feeling better / well being they actually heard me and they decided to D/C all my oral meds. I still have to do the few inhalation therapies, keep using the vest and I'll check back in 6 weeks. So I've crossed my fingers and wait.