struggling with pan-resistant B. Cepacia...

[mysterygrl19]

I just came accross this site searching for more info. I have been feeling pretty blue lately, and just reading some of the posts has renewed some of my hope.
I just turned 19, and have always been reasonably healthy up until the last six months. I developed a lung abcess that refused to heal up, and as a result had to have a right upper lobectomy in April. Since then, I have been in and out of the hospital about every two weeks.
My last culture grew out pan resistant B. Cepacia, and over the last few months I have been on continuous IV antibiotic therapy. I feel better for about five days, and then get sick again. I just had a Dr. appointment yesterday and he said that the options for drug treatment are becomming limited.
Since Janurary my pulmonary functions have dropped 40%, I had to drop out of college, I no longer have the stamina to work as a vet tech. I know it sounds like I am just sitting around feeling sorry for myself, but I am finding it very hard to be positive right now.
I would really appreciate if anybody has any suggestions as to possible treatment or clinical trials.
--Heather, 19w/cf, CFRD

 

[mysterygrl19]

I just came accross this site searching for more info. I have been feeling pretty blue lately, and just reading some of the posts has renewed some of my hope.
I just turned 19, and have always been reasonably healthy up until the last six months. I developed a lung abcess that refused to heal up, and as a result had to have a right upper lobectomy in April. Since then, I have been in and out of the hospital about every two weeks.
My last culture grew out pan resistant B. Cepacia, and over the last few months I have been on continuous IV antibiotic therapy. I feel better for about five days, and then get sick again. I just had a Dr. appointment yesterday and he said that the options for drug treatment are becomming limited.
Since Janurary my pulmonary functions have dropped 40%, I had to drop out of college, I no longer have the stamina to work as a vet tech. I know it sounds like I am just sitting around feeling sorry for myself, but I am finding it very hard to be positive right now.
I would really appreciate if anybody has any suggestions as to possible treatment or clinical trials.
--Heather, 19w/cf, CFRD

 

[mysterygrl19]

I just came accross this site searching for more info. I have been feeling pretty blue lately, and just reading some of the posts has renewed some of my hope.
I just turned 19, and have always been reasonably healthy up until the last six months. I developed a lung abcess that refused to heal up, and as a result had to have a right upper lobectomy in April. Since then, I have been in and out of the hospital about every two weeks.
My last culture grew out pan resistant B. Cepacia, and over the last few months I have been on continuous IV antibiotic therapy. I feel better for about five days, and then get sick again. I just had a Dr. appointment yesterday and he said that the options for drug treatment are becomming limited.
Since Janurary my pulmonary functions have dropped 40%, I had to drop out of college, I no longer have the stamina to work as a vet tech. I know it sounds like I am just sitting around feeling sorry for myself, but I am finding it very hard to be positive right now.
I would really appreciate if anybody has any suggestions as to possible treatment or clinical trials.
--Heather, 19w/cf, CFRD

 

[mysterygrl19]

I just came accross this site searching for more info. I have been feeling pretty blue lately, and just reading some of the posts has renewed some of my hope.
I just turned 19, and have always been reasonably healthy up until the last six months. I developed a lung abcess that refused to heal up, and as a result had to have a right upper lobectomy in April. Since then, I have been in and out of the hospital about every two weeks.
My last culture grew out pan resistant B. Cepacia, and over the last few months I have been on continuous IV antibiotic therapy. I feel better for about five days, and then get sick again. I just had a Dr. appointment yesterday and he said that the options for drug treatment are becomming limited.
Since Janurary my pulmonary functions have dropped 40%, I had to drop out of college, I no longer have the stamina to work as a vet tech. I know it sounds like I am just sitting around feeling sorry for myself, but I am finding it very hard to be positive right now.
I would really appreciate if anybody has any suggestions as to possible treatment or clinical trials.
--Heather, 19w/cf, CFRD

 

[mysterygrl19]

I just came accross this site searching for more info. I have been feeling pretty blue lately, and just reading some of the posts has renewed some of my hope.
<br />I just turned 19, and have always been reasonably healthy up until the last six months. I developed a lung abcess that refused to heal up, and as a result had to have a right upper lobectomy in April. Since then, I have been in and out of the hospital about every two weeks.
<br />My last culture grew out pan resistant B. Cepacia, and over the last few months I have been on continuous IV antibiotic therapy. I feel better for about five days, and then get sick again. I just had a Dr. appointment yesterday and he said that the options for drug treatment are becomming limited.
<br />Since Janurary my pulmonary functions have dropped 40%, I had to drop out of college, I no longer have the stamina to work as a vet tech. I know it sounds like I am just sitting around feeling sorry for myself, but I am finding it very hard to be positive right now.
<br />I would really appreciate if anybody has any suggestions as to possible treatment or clinical trials.
<br />--Heather, 19w/cf, CFRD

 

[catboogie]

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[Diane]

Heather, i know what you are going thru. I've had cepacia for about 11 years now and it isnt an easy bug to deal with. I dont know of any clinical trials that include cepacia patients but if i remember correctly someone on here mentioned that there is something possibly coming up. Iv Merropenim is usually a good choice for treating cepacia. Although i dont like inhaled antibiotics my Dr. wants me on one all the time. He wants me to rotate Tobi with colistin. I dont like colistin at all to inhale but i did agree to do it iv when it is time to do it. Usually i am on 3 or 4 oral antitiobics at all times. It isnt easy for a bacteria to develop resistance to 3 or 4 different ones at the same time. PLus they work synergistically. I am resistant to just about every antitibiotic so the best way to do them is in groups. I remember when i first developed cepacia the tiredness was the hardest to shake. It took a while till i finally started to have energy again. I know it seems almost impossible but when you feel up to it a little light exercise may do you wonders. It always makes me feel better and more energetic afterwards. Try to keep your weight up , its important to help your body fight. I hope your Dr.s find the right combo that does wonders for you....

 

[Diane]

Heather, i know what you are going thru. I've had cepacia for about 11 years now and it isnt an easy bug to deal with. I dont know of any clinical trials that include cepacia patients but if i remember correctly someone on here mentioned that there is something possibly coming up. Iv Merropenim is usually a good choice for treating cepacia. Although i dont like inhaled antibiotics my Dr. wants me on one all the time. He wants me to rotate Tobi with colistin. I dont like colistin at all to inhale but i did agree to do it iv when it is time to do it. Usually i am on 3 or 4 oral antitiobics at all times. It isnt easy for a bacteria to develop resistance to 3 or 4 different ones at the same time. PLus they work synergistically. I am resistant to just about every antitibiotic so the best way to do them is in groups. I remember when i first developed cepacia the tiredness was the hardest to shake. It took a while till i finally started to have energy again. I know it seems almost impossible but when you feel up to it a little light exercise may do you wonders. It always makes me feel better and more energetic afterwards. Try to keep your weight up , its important to help your body fight. I hope your Dr.s find the right combo that does wonders for you....

 

[Diane]

Heather, i know what you are going thru. I've had cepacia for about 11 years now and it isnt an easy bug to deal with. I dont know of any clinical trials that include cepacia patients but if i remember correctly someone on here mentioned that there is something possibly coming up. Iv Merropenim is usually a good choice for treating cepacia. Although i dont like inhaled antibiotics my Dr. wants me on one all the time. He wants me to rotate Tobi with colistin. I dont like colistin at all to inhale but i did agree to do it iv when it is time to do it. Usually i am on 3 or 4 oral antitiobics at all times. It isnt easy for a bacteria to develop resistance to 3 or 4 different ones at the same time. PLus they work synergistically. I am resistant to just about every antitibiotic so the best way to do them is in groups. I remember when i first developed cepacia the tiredness was the hardest to shake. It took a while till i finally started to have energy again. I know it seems almost impossible but when you feel up to it a little light exercise may do you wonders. It always makes me feel better and more energetic afterwards. Try to keep your weight up , its important to help your body fight. I hope your Dr.s find the right combo that does wonders for you....

 

[Diane]

Heather, i know what you are going thru. I've had cepacia for about 11 years now and it isnt an easy bug to deal with. I dont know of any clinical trials that include cepacia patients but if i remember correctly someone on here mentioned that there is something possibly coming up. Iv Merropenim is usually a good choice for treating cepacia. Although i dont like inhaled antibiotics my Dr. wants me on one all the time. He wants me to rotate Tobi with colistin. I dont like colistin at all to inhale but i did agree to do it iv when it is time to do it. Usually i am on 3 or 4 oral antitiobics at all times. It isnt easy for a bacteria to develop resistance to 3 or 4 different ones at the same time. PLus they work synergistically. I am resistant to just about every antitibiotic so the best way to do them is in groups. I remember when i first developed cepacia the tiredness was the hardest to shake. It took a while till i finally started to have energy again. I know it seems almost impossible but when you feel up to it a little light exercise may do you wonders. It always makes me feel better and more energetic afterwards. Try to keep your weight up , its important to help your body fight. I hope your Dr.s find the right combo that does wonders for you....

 

[Diane]

Heather, i know what you are going thru. I've had cepacia for about 11 years now and it isnt an easy bug to deal with. I dont know of any clinical trials that include cepacia patients but if i remember correctly someone on here mentioned that there is something possibly coming up. Iv Merropenim is usually a good choice for treating cepacia. Although i dont like inhaled antibiotics my Dr. wants me on one all the time. He wants me to rotate Tobi with colistin. I dont like colistin at all to inhale but i did agree to do it iv when it is time to do it. Usually i am on 3 or 4 oral antitiobics at all times. It isnt easy for a bacteria to develop resistance to 3 or 4 different ones at the same time. PLus they work synergistically. I am resistant to just about every antitibiotic so the best way to do them is in groups. I remember when i first developed cepacia the tiredness was the hardest to shake. It took a while till i finally started to have energy again. I know it seems almost impossible but when you feel up to it a little light exercise may do you wonders. It always makes me feel better and more energetic afterwards. Try to keep your weight up , its important to help your body fight. I hope your Dr.s find the right combo that does wonders for you....
<br />

 

[jamie6girl]

Heather, are you the same person that posted that you wanted to stop treatment?? I'm sorry, but there are a lot of new users posting similar things again...

 

[jamie6girl]

Heather, are you the same person that posted that you wanted to stop treatment?? I'm sorry, but there are a lot of new users posting similar things again...

 

[jamie6girl]

Heather, are you the same person that posted that you wanted to stop treatment?? I'm sorry, but there are a lot of new users posting similar things again...

 

[jamie6girl]

Heather, are you the same person that posted that you wanted to stop treatment?? I'm sorry, but there are a lot of new users posting similar things again...

 

[jamie6girl]

Heather, are you the same person that posted that you wanted to stop treatment?? I'm sorry, but there are a lot of new users posting similar things again...