Help me help myself

K

kkilroy13

New member
Hello everyone. I need advice from people that are going through this also.
The past year or two my CF has become severely worse. Until 2008 i had only had four clean outs in my life. (i was diagnosed at age 3.)
In 2008 i started taking methadone for the pain i was starting to have and im wondering if that is one of the big reasons i have been declining-
I have had three hospitalizations since the summer of last year. The first cleanout because i got so sick that i was down to 83lbs (i am 5'4 and usually around 100-110lbs)and had pnemonia. i had a cleanout that seemed to help and then two months later my right lung collapsed and i had to have surgery to repair it. They removed 1/3 of my upper lobes because they were so damaged. After that surger my FEV1 went up to 66 from 43. In 2007 it was around 80 so that gives you an idea of my baseline before i got sick and before i started methadone.
So i just had a cleanout in july and it did NOTHING. infact i feel that it made me worse. In august my FEV was back down to 45.
I'm so depressed i dont do very much- i sleep all day, get no excersize;i've been having nightmares that im not going to live long enough to have children or even get married. Methadone is VERY hard to get off of. Im so afraid of the withdrawels that its stopping me from tapering off of it and going on something as needed like vicodin.
I had started taking pulmozyme again but it made my mucus so thin that my lungs felt like they were full of water.

Can anyone tell me there opinion and maybe there regimens? My body is so different and unusual from normal CF'ers that my CF docter seems like she doesnt know quite what to do with me.
Also i have B. Cepacia and thats also a huge problem obv.

someone helpppp!!!
 
K

kkilroy13

New member
Hello everyone. I need advice from people that are going through this also.
The past year or two my CF has become severely worse. Until 2008 i had only had four clean outs in my life. (i was diagnosed at age 3.)
In 2008 i started taking methadone for the pain i was starting to have and im wondering if that is one of the big reasons i have been declining-
I have had three hospitalizations since the summer of last year. The first cleanout because i got so sick that i was down to 83lbs (i am 5'4 and usually around 100-110lbs)and had pnemonia. i had a cleanout that seemed to help and then two months later my right lung collapsed and i had to have surgery to repair it. They removed 1/3 of my upper lobes because they were so damaged. After that surger my FEV1 went up to 66 from 43. In 2007 it was around 80 so that gives you an idea of my baseline before i got sick and before i started methadone.
So i just had a cleanout in july and it did NOTHING. infact i feel that it made me worse. In august my FEV was back down to 45.
I'm so depressed i dont do very much- i sleep all day, get no excersize;i've been having nightmares that im not going to live long enough to have children or even get married. Methadone is VERY hard to get off of. Im so afraid of the withdrawels that its stopping me from tapering off of it and going on something as needed like vicodin.
I had started taking pulmozyme again but it made my mucus so thin that my lungs felt like they were full of water.

Can anyone tell me there opinion and maybe there regimens? My body is so different and unusual from normal CF'ers that my CF docter seems like she doesnt know quite what to do with me.
Also i have B. Cepacia and thats also a huge problem obv.

someone helpppp!!!
 
K

kkilroy13

New member
Hello everyone. I need advice from people that are going through this also.
The past year or two my CF has become severely worse. Until 2008 i had only had four clean outs in my life. (i was diagnosed at age 3.)
In 2008 i started taking methadone for the pain i was starting to have and im wondering if that is one of the big reasons i have been declining-
I have had three hospitalizations since the summer of last year. The first cleanout because i got so sick that i was down to 83lbs (i am 5'4 and usually around 100-110lbs)and had pnemonia. i had a cleanout that seemed to help and then two months later my right lung collapsed and i had to have surgery to repair it. They removed 1/3 of my upper lobes because they were so damaged. After that surger my FEV1 went up to 66 from 43. In 2007 it was around 80 so that gives you an idea of my baseline before i got sick and before i started methadone.
So i just had a cleanout in july and it did NOTHING. infact i feel that it made me worse. In august my FEV was back down to 45.
I'm so depressed i dont do very much- i sleep all day, get no excersize;i've been having nightmares that im not going to live long enough to have children or even get married. Methadone is VERY hard to get off of. Im so afraid of the withdrawels that its stopping me from tapering off of it and going on something as needed like vicodin.
I had started taking pulmozyme again but it made my mucus so thin that my lungs felt like they were full of water.

Can anyone tell me there opinion and maybe there regimens? My body is so different and unusual from normal CF'ers that my CF docter seems like she doesnt know quite what to do with me.
Also i have B. Cepacia and thats also a huge problem obv.

someone helpppp!!!
 
K

kkilroy13

New member
Hello everyone. I need advice from people that are going through this also.
The past year or two my CF has become severely worse. Until 2008 i had only had four clean outs in my life. (i was diagnosed at age 3.)
In 2008 i started taking methadone for the pain i was starting to have and im wondering if that is one of the big reasons i have been declining-
I have had three hospitalizations since the summer of last year. The first cleanout because i got so sick that i was down to 83lbs (i am 5'4 and usually around 100-110lbs)and had pnemonia. i had a cleanout that seemed to help and then two months later my right lung collapsed and i had to have surgery to repair it. They removed 1/3 of my upper lobes because they were so damaged. After that surger my FEV1 went up to 66 from 43. In 2007 it was around 80 so that gives you an idea of my baseline before i got sick and before i started methadone.
So i just had a cleanout in july and it did NOTHING. infact i feel that it made me worse. In august my FEV was back down to 45.
I'm so depressed i dont do very much- i sleep all day, get no excersize;i've been having nightmares that im not going to live long enough to have children or even get married. Methadone is VERY hard to get off of. Im so afraid of the withdrawels that its stopping me from tapering off of it and going on something as needed like vicodin.
I had started taking pulmozyme again but it made my mucus so thin that my lungs felt like they were full of water.

Can anyone tell me there opinion and maybe there regimens? My body is so different and unusual from normal CF'ers that my CF docter seems like she doesnt know quite what to do with me.
Also i have B. Cepacia and thats also a huge problem obv.

someone helpppp!!!
 
K

kkilroy13

New member
Hello everyone. I need advice from people that are going through this also.
<br />The past year or two my CF has become severely worse. Until 2008 i had only had four clean outs in my life. (i was diagnosed at age 3.)
<br />In 2008 i started taking methadone for the pain i was starting to have and im wondering if that is one of the big reasons i have been declining-
<br />I have had three hospitalizations since the summer of last year. The first cleanout because i got so sick that i was down to 83lbs (i am 5'4 and usually around 100-110lbs)and had pnemonia. i had a cleanout that seemed to help and then two months later my right lung collapsed and i had to have surgery to repair it. They removed 1/3 of my upper lobes because they were so damaged. After that surger my FEV1 went up to 66 from 43. In 2007 it was around 80 so that gives you an idea of my baseline before i got sick and before i started methadone.
<br />So i just had a cleanout in july and it did NOTHING. infact i feel that it made me worse. In august my FEV was back down to 45.
<br />I'm so depressed i dont do very much- i sleep all day, get no excersize;i've been having nightmares that im not going to live long enough to have children or even get married. Methadone is VERY hard to get off of. Im so afraid of the withdrawels that its stopping me from tapering off of it and going on something as needed like vicodin.
<br />I had started taking pulmozyme again but it made my mucus so thin that my lungs felt like they were full of water.
<br />
<br />Can anyone tell me there opinion and maybe there regimens? My body is so different and unusual from normal CF'ers that my CF docter seems like she doesnt know quite what to do with me.
<br />Also i have B. Cepacia and thats also a huge problem obv.
<br />
<br />someone helpppp!!!
 
S

saveferris2009

New member
Have you considered going to in-patient rehab for the methadone?

I know opiates can cause fatigue and as you said you're probably not to excited to taper off because of withdrawl. But I think being in patient where they can monitor you and really help guide you towards tapering off the med would be wise.

I understand the depressing feeling of not getting better and deal with Cepacia which is probably a nightmare. But I have a hunch that the methadone isn't helping your energy levels, moods, or as you said helping your overall lung health.

Hopefully you can talk to your CF doc or another specialist who knows about in patient rehab and they can help get you set up with a program to taper off the methadone.

Take care
 
S

saveferris2009

New member
Have you considered going to in-patient rehab for the methadone?

I know opiates can cause fatigue and as you said you're probably not to excited to taper off because of withdrawl. But I think being in patient where they can monitor you and really help guide you towards tapering off the med would be wise.

I understand the depressing feeling of not getting better and deal with Cepacia which is probably a nightmare. But I have a hunch that the methadone isn't helping your energy levels, moods, or as you said helping your overall lung health.

Hopefully you can talk to your CF doc or another specialist who knows about in patient rehab and they can help get you set up with a program to taper off the methadone.

Take care
 
S

saveferris2009

New member
Have you considered going to in-patient rehab for the methadone?

I know opiates can cause fatigue and as you said you're probably not to excited to taper off because of withdrawl. But I think being in patient where they can monitor you and really help guide you towards tapering off the med would be wise.

I understand the depressing feeling of not getting better and deal with Cepacia which is probably a nightmare. But I have a hunch that the methadone isn't helping your energy levels, moods, or as you said helping your overall lung health.

Hopefully you can talk to your CF doc or another specialist who knows about in patient rehab and they can help get you set up with a program to taper off the methadone.

Take care
 
S

saveferris2009

New member
Have you considered going to in-patient rehab for the methadone?

I know opiates can cause fatigue and as you said you're probably not to excited to taper off because of withdrawl. But I think being in patient where they can monitor you and really help guide you towards tapering off the med would be wise.

I understand the depressing feeling of not getting better and deal with Cepacia which is probably a nightmare. But I have a hunch that the methadone isn't helping your energy levels, moods, or as you said helping your overall lung health.

Hopefully you can talk to your CF doc or another specialist who knows about in patient rehab and they can help get you set up with a program to taper off the methadone.

Take care
 
S

saveferris2009

New member
Have you considered going to in-patient rehab for the methadone?
<br />
<br />I know opiates can cause fatigue and as you said you're probably not to excited to taper off because of withdrawl. But I think being in patient where they can monitor you and really help guide you towards tapering off the med would be wise.
<br />
<br />I understand the depressing feeling of not getting better and deal with Cepacia which is probably a nightmare. But I have a hunch that the methadone isn't helping your energy levels, moods, or as you said helping your overall lung health.
<br />
<br />Hopefully you can talk to your CF doc or another specialist who knows about in patient rehab and they can help get you set up with a program to taper off the methadone.
<br />
<br />Take care
 
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