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OxGirl220
11-23-2009, 04:42 PM
Hey,

I am 22years old and I have CF. I am new here and have never known there was a web page like this for CF! wow! I was dx when I was 12. I have been in the hospital ClubMed about 3 times a year since I was 13 14. Now my CF doctors are having a hard time getting me better. I cough up allot of mucus after my treatments such as my Vest nebs, and so on. Sometimes I get 250cc's in a day. My PFT's have droped from being 96% to 30% in such a short time. My CF doctor has me on 4 Vest treatments a day and Xopenex 3 times a day and Pulozyme 2 times a day and allot of inhalers and other breathing treatments. I am also on Hypertonic Sailne 3 times a day and Pulocourt. I have had a heard time keeping my weight on. I am on 15 enzymes with every meal. I have a G tube that the GI doc that is going to be putting a J-tube in also. Due to the weight loss and GI issues.

My CF doctor now has me on 3 to 6L of oxygen all day. Due to my shortness of breath and low oxygen sats. With out my oxygen I run as low as 88 and I get very cold. So what I am upset about is that my CF doctor and CF lung doctor have sent me home on this oxygen sometimes on 6L with a mask. They tell me that there is not much they can do for me. They took a chest CT scan and I had deep mucus plugs in my left lower lung. My chest X-rays do not look as good as they did. However, there is no infection as of yet the doctors say that my lungs just full of mucus. Many doctor have told me to start thinking about getting a lung Tx.
I just don't know anymore what I should do. Walking has become an issue. Beucase I end up so washed out. I am washed out most of the time. What would you do? Think about doing a Tx? or what?

OxGirl220
11-23-2009, 04:42 PM
Hey,

I am 22years old and I have CF. I am new here and have never known there was a web page like this for CF! wow! I was dx when I was 12. I have been in the hospital ClubMed about 3 times a year since I was 13 14. Now my CF doctors are having a hard time getting me better. I cough up allot of mucus after my treatments such as my Vest nebs, and so on. Sometimes I get 250cc's in a day. My PFT's have droped from being 96% to 30% in such a short time. My CF doctor has me on 4 Vest treatments a day and Xopenex 3 times a day and Pulozyme 2 times a day and allot of inhalers and other breathing treatments. I am also on Hypertonic Sailne 3 times a day and Pulocourt. I have had a heard time keeping my weight on. I am on 15 enzymes with every meal. I have a G tube that the GI doc that is going to be putting a J-tube in also. Due to the weight loss and GI issues.

My CF doctor now has me on 3 to 6L of oxygen all day. Due to my shortness of breath and low oxygen sats. With out my oxygen I run as low as 88 and I get very cold. So what I am upset about is that my CF doctor and CF lung doctor have sent me home on this oxygen sometimes on 6L with a mask. They tell me that there is not much they can do for me. They took a chest CT scan and I had deep mucus plugs in my left lower lung. My chest X-rays do not look as good as they did. However, there is no infection as of yet the doctors say that my lungs just full of mucus. Many doctor have told me to start thinking about getting a lung Tx.
I just don't know anymore what I should do. Walking has become an issue. Beucase I end up so washed out. I am washed out most of the time. What would you do? Think about doing a Tx? or what?

OxGirl220
11-23-2009, 04:42 PM
Hey,

I am 22years old and I have CF. I am new here and have never known there was a web page like this for CF! wow! I was dx when I was 12. I have been in the hospital ClubMed about 3 times a year since I was 13 14. Now my CF doctors are having a hard time getting me better. I cough up allot of mucus after my treatments such as my Vest nebs, and so on. Sometimes I get 250cc's in a day. My PFT's have droped from being 96% to 30% in such a short time. My CF doctor has me on 4 Vest treatments a day and Xopenex 3 times a day and Pulozyme 2 times a day and allot of inhalers and other breathing treatments. I am also on Hypertonic Sailne 3 times a day and Pulocourt. I have had a heard time keeping my weight on. I am on 15 enzymes with every meal. I have a G tube that the GI doc that is going to be putting a J-tube in also. Due to the weight loss and GI issues.

My CF doctor now has me on 3 to 6L of oxygen all day. Due to my shortness of breath and low oxygen sats. With out my oxygen I run as low as 88 and I get very cold. So what I am upset about is that my CF doctor and CF lung doctor have sent me home on this oxygen sometimes on 6L with a mask. They tell me that there is not much they can do for me. They took a chest CT scan and I had deep mucus plugs in my left lower lung. My chest X-rays do not look as good as they did. However, there is no infection as of yet the doctors say that my lungs just full of mucus. Many doctor have told me to start thinking about getting a lung Tx.
I just don't know anymore what I should do. Walking has become an issue. Beucase I end up so washed out. I am washed out most of the time. What would you do? Think about doing a Tx? or what?

OxGirl220
11-23-2009, 04:42 PM
Hey,

I am 22years old and I have CF. I am new here and have never known there was a web page like this for CF! wow! I was dx when I was 12. I have been in the hospital ClubMed about 3 times a year since I was 13 14. Now my CF doctors are having a hard time getting me better. I cough up allot of mucus after my treatments such as my Vest nebs, and so on. Sometimes I get 250cc's in a day. My PFT's have droped from being 96% to 30% in such a short time. My CF doctor has me on 4 Vest treatments a day and Xopenex 3 times a day and Pulozyme 2 times a day and allot of inhalers and other breathing treatments. I am also on Hypertonic Sailne 3 times a day and Pulocourt. I have had a heard time keeping my weight on. I am on 15 enzymes with every meal. I have a G tube that the GI doc that is going to be putting a J-tube in also. Due to the weight loss and GI issues.

My CF doctor now has me on 3 to 6L of oxygen all day. Due to my shortness of breath and low oxygen sats. With out my oxygen I run as low as 88 and I get very cold. So what I am upset about is that my CF doctor and CF lung doctor have sent me home on this oxygen sometimes on 6L with a mask. They tell me that there is not much they can do for me. They took a chest CT scan and I had deep mucus plugs in my left lower lung. My chest X-rays do not look as good as they did. However, there is no infection as of yet the doctors say that my lungs just full of mucus. Many doctor have told me to start thinking about getting a lung Tx.
I just don't know anymore what I should do. Walking has become an issue. Beucase I end up so washed out. I am washed out most of the time. What would you do? Think about doing a Tx? or what?

OxGirl220
11-23-2009, 04:42 PM
Hey,
<br />
<br />I am 22years old and I have CF. I am new here and have never known there was a web page like this for CF! wow! I was dx when I was 12. I have been in the hospital ClubMed about 3 times a year since I was 13 14. Now my CF doctors are having a hard time getting me better. I cough up allot of mucus after my treatments such as my Vest nebs, and so on. Sometimes I get 250cc's in a day. My PFT's have droped from being 96% to 30% in such a short time. My CF doctor has me on 4 Vest treatments a day and Xopenex 3 times a day and Pulozyme 2 times a day and allot of inhalers and other breathing treatments. I am also on Hypertonic Sailne 3 times a day and Pulocourt. I have had a heard time keeping my weight on. I am on 15 enzymes with every meal. I have a G tube that the GI doc that is going to be putting a J-tube in also. Due to the weight loss and GI issues.
<br />
<br />My CF doctor now has me on 3 to 6L of oxygen all day. Due to my shortness of breath and low oxygen sats. With out my oxygen I run as low as 88 and I get very cold. So what I am upset about is that my CF doctor and CF lung doctor have sent me home on this oxygen sometimes on 6L with a mask. They tell me that there is not much they can do for me. They took a chest CT scan and I had deep mucus plugs in my left lower lung. My chest X-rays do not look as good as they did. However, there is no infection as of yet the doctors say that my lungs just full of mucus. Many doctor have told me to start thinking about getting a lung Tx.
<br />I just don't know anymore what I should do. Walking has become an issue. Beucase I end up so washed out. I am washed out most of the time. What would you do? Think about doing a Tx? or what?

ashmomo
11-23-2009, 05:49 PM
Sorry I have no advice. I just wanted to let you know how sorry I am you are having such problems. I hope they find a way to help your lungs improve. You are still very young. Take care of yourself!

ashmomo
11-23-2009, 05:49 PM
Sorry I have no advice. I just wanted to let you know how sorry I am you are having such problems. I hope they find a way to help your lungs improve. You are still very young. Take care of yourself!

ashmomo
11-23-2009, 05:49 PM
Sorry I have no advice. I just wanted to let you know how sorry I am you are having such problems. I hope they find a way to help your lungs improve. You are still very young. Take care of yourself!

ashmomo
11-23-2009, 05:49 PM
Sorry I have no advice. I just wanted to let you know how sorry I am you are having such problems. I hope they find a way to help your lungs improve. You are still very young. Take care of yourself!

ashmomo
11-23-2009, 05:49 PM
Sorry I have no advice. I just wanted to let you know how sorry I am you are having such problems. I hope they find a way to help your lungs improve. You are still very young. Take care of yourself!

missT
11-23-2009, 06:00 PM
Hi, wow, I cant believe your FEV1 went down so fast. How did that happen? There wasn't an infection? Why don't you go and get evaluated at a transplant clinic. It sounds to me like you would be an excellent candidate. Please dont give up and dont let your docs give up. I would def switch doctors if mine said there was nothing she could do for me. That is just unacceptable! I will pray for you.

missT
11-23-2009, 06:00 PM
Hi, wow, I cant believe your FEV1 went down so fast. How did that happen? There wasn't an infection? Why don't you go and get evaluated at a transplant clinic. It sounds to me like you would be an excellent candidate. Please dont give up and dont let your docs give up. I would def switch doctors if mine said there was nothing she could do for me. That is just unacceptable! I will pray for you.

missT
11-23-2009, 06:00 PM
Hi, wow, I cant believe your FEV1 went down so fast. How did that happen? There wasn't an infection? Why don't you go and get evaluated at a transplant clinic. It sounds to me like you would be an excellent candidate. Please dont give up and dont let your docs give up. I would def switch doctors if mine said there was nothing she could do for me. That is just unacceptable! I will pray for you.

missT
11-23-2009, 06:00 PM
Hi, wow, I cant believe your FEV1 went down so fast. How did that happen? There wasn't an infection? Why don't you go and get evaluated at a transplant clinic. It sounds to me like you would be an excellent candidate. Please dont give up and dont let your docs give up. I would def switch doctors if mine said there was nothing she could do for me. That is just unacceptable! I will pray for you.

missT
11-23-2009, 06:00 PM
Hi, wow, I cant believe your FEV1 went down so fast. How did that happen? There wasn't an infection? Why don't you go and get evaluated at a transplant clinic. It sounds to me like you would be an excellent candidate. Please dont give up and dont let your docs give up. I would def switch doctors if mine said there was nothing she could do for me. That is just unacceptable! I will pray for you.

tleigh
11-23-2009, 06:54 PM
I don't have any suggestions-just wanted to say welcome. I think you will find a very supportive community here.

tleigh
11-23-2009, 06:54 PM
I don't have any suggestions-just wanted to say welcome. I think you will find a very supportive community here.

tleigh
11-23-2009, 06:54 PM
I don't have any suggestions-just wanted to say welcome. I think you will find a very supportive community here.

tleigh
11-23-2009, 06:54 PM
I don't have any suggestions-just wanted to say welcome. I think you will find a very supportive community here.

tleigh
11-23-2009, 06:54 PM
I don't have any suggestions-just wanted to say welcome. I think you will find a very supportive community here.

nu65
11-23-2009, 09:35 PM
I think you should definitly be searching for a close transplant center so they can look at your medical history and how your quality of life is now. Just because you see them for a consult doesn't mean you need lungs right now. I have been seeing my transplant center for almost 5 years now and have only been listed for 6 months. They can help you decide if its the right time for transplant and if it is the right choice for you.

Until then, I wonder what IV drugs you're on. Are you resistant to a lot of drugs? What are you culturing? I'd ask your docs about what antibiotics you're on to take care of whatever strains of bacteria you've got. I hope things go alright for you, i know how it is to struggle with just walking, and I'm on 2 liters of O2 most of the time. Good luck to you!

nu65
11-23-2009, 09:35 PM
I think you should definitly be searching for a close transplant center so they can look at your medical history and how your quality of life is now. Just because you see them for a consult doesn't mean you need lungs right now. I have been seeing my transplant center for almost 5 years now and have only been listed for 6 months. They can help you decide if its the right time for transplant and if it is the right choice for you.

Until then, I wonder what IV drugs you're on. Are you resistant to a lot of drugs? What are you culturing? I'd ask your docs about what antibiotics you're on to take care of whatever strains of bacteria you've got. I hope things go alright for you, i know how it is to struggle with just walking, and I'm on 2 liters of O2 most of the time. Good luck to you!

nu65
11-23-2009, 09:35 PM
I think you should definitly be searching for a close transplant center so they can look at your medical history and how your quality of life is now. Just because you see them for a consult doesn't mean you need lungs right now. I have been seeing my transplant center for almost 5 years now and have only been listed for 6 months. They can help you decide if its the right time for transplant and if it is the right choice for you.

Until then, I wonder what IV drugs you're on. Are you resistant to a lot of drugs? What are you culturing? I'd ask your docs about what antibiotics you're on to take care of whatever strains of bacteria you've got. I hope things go alright for you, i know how it is to struggle with just walking, and I'm on 2 liters of O2 most of the time. Good luck to you!

nu65
11-23-2009, 09:35 PM
I think you should definitly be searching for a close transplant center so they can look at your medical history and how your quality of life is now. Just because you see them for a consult doesn't mean you need lungs right now. I have been seeing my transplant center for almost 5 years now and have only been listed for 6 months. They can help you decide if its the right time for transplant and if it is the right choice for you.

Until then, I wonder what IV drugs you're on. Are you resistant to a lot of drugs? What are you culturing? I'd ask your docs about what antibiotics you're on to take care of whatever strains of bacteria you've got. I hope things go alright for you, i know how it is to struggle with just walking, and I'm on 2 liters of O2 most of the time. Good luck to you!

nu65
11-23-2009, 09:35 PM
I think you should definitly be searching for a close transplant center so they can look at your medical history and how your quality of life is now. Just because you see them for a consult doesn't mean you need lungs right now. I have been seeing my transplant center for almost 5 years now and have only been listed for 6 months. They can help you decide if its the right time for transplant and if it is the right choice for you.
<br />
<br />Until then, I wonder what IV drugs you're on. Are you resistant to a lot of drugs? What are you culturing? I'd ask your docs about what antibiotics you're on to take care of whatever strains of bacteria you've got. I hope things go alright for you, i know how it is to struggle with just walking, and I'm on 2 liters of O2 most of the time. Good luck to you!

cfprincess09
11-23-2009, 11:41 PM
hey oxgirl220
i have been asked to do transplant twice and i said no both times and i got better twice i was asked when i was seven and i got better sick months later and they asked me at 12 and it took me 6 months to get better and it all depends on how bad your cf is !! mine is the wierdst and well your cf sounds pretty bad and i would think if it is worth them putting you on the table and cutting you open and being in pain for a few months after surgrey but it sounds your already in pain !!! so i think you should do it if you think its best for you !!! dont do it for anybody else but you !! thx for the talk

sincerly ashley

cfprincess09
11-23-2009, 11:41 PM
hey oxgirl220
i have been asked to do transplant twice and i said no both times and i got better twice i was asked when i was seven and i got better sick months later and they asked me at 12 and it took me 6 months to get better and it all depends on how bad your cf is !! mine is the wierdst and well your cf sounds pretty bad and i would think if it is worth them putting you on the table and cutting you open and being in pain for a few months after surgrey but it sounds your already in pain !!! so i think you should do it if you think its best for you !!! dont do it for anybody else but you !! thx for the talk

sincerly ashley

cfprincess09
11-23-2009, 11:41 PM
hey oxgirl220
i have been asked to do transplant twice and i said no both times and i got better twice i was asked when i was seven and i got better sick months later and they asked me at 12 and it took me 6 months to get better and it all depends on how bad your cf is !! mine is the wierdst and well your cf sounds pretty bad and i would think if it is worth them putting you on the table and cutting you open and being in pain for a few months after surgrey but it sounds your already in pain !!! so i think you should do it if you think its best for you !!! dont do it for anybody else but you !! thx for the talk

sincerly ashley

cfprincess09
11-23-2009, 11:41 PM
hey oxgirl220
i have been asked to do transplant twice and i said no both times and i got better twice i was asked when i was seven and i got better sick months later and they asked me at 12 and it took me 6 months to get better and it all depends on how bad your cf is !! mine is the wierdst and well your cf sounds pretty bad and i would think if it is worth them putting you on the table and cutting you open and being in pain for a few months after surgrey but it sounds your already in pain !!! so i think you should do it if you think its best for you !!! dont do it for anybody else but you !! thx for the talk

sincerly ashley

cfprincess09
11-23-2009, 11:41 PM
hey oxgirl220
<br />i have been asked to do transplant twice and i said no both times and i got better twice i was asked when i was seven and i got better sick months later and they asked me at 12 and it took me 6 months to get better and it all depends on how bad your cf is !! mine is the wierdst and well your cf sounds pretty bad and i would think if it is worth them putting you on the table and cutting you open and being in pain for a few months after surgrey but it sounds your already in pain !!! so i think you should do it if you think its best for you !!! dont do it for anybody else but you !! thx for the talk
<br />
<br />sincerly ashley

JustDucky
11-24-2009, 12:36 AM
I would wonder why you had such a rapid decline, did they do a bronchoscopy and get good samples that way? Have they looked for MAC too? Just some thoughts. I am sorry things have been so rough for you. I would look into centers now for tx evaluation. Maybe they will have a different opinion or even a better treatment plan. Who knows...I am thinking of you and will keep you in my prayers.
Hugs, Jenn

JustDucky
11-24-2009, 12:36 AM
I would wonder why you had such a rapid decline, did they do a bronchoscopy and get good samples that way? Have they looked for MAC too? Just some thoughts. I am sorry things have been so rough for you. I would look into centers now for tx evaluation. Maybe they will have a different opinion or even a better treatment plan. Who knows...I am thinking of you and will keep you in my prayers.
Hugs, Jenn

JustDucky
11-24-2009, 12:36 AM
I would wonder why you had such a rapid decline, did they do a bronchoscopy and get good samples that way? Have they looked for MAC too? Just some thoughts. I am sorry things have been so rough for you. I would look into centers now for tx evaluation. Maybe they will have a different opinion or even a better treatment plan. Who knows...I am thinking of you and will keep you in my prayers.
Hugs, Jenn

JustDucky
11-24-2009, 12:36 AM
I would wonder why you had such a rapid decline, did they do a bronchoscopy and get good samples that way? Have they looked for MAC too? Just some thoughts. I am sorry things have been so rough for you. I would look into centers now for tx evaluation. Maybe they will have a different opinion or even a better treatment plan. Who knows...I am thinking of you and will keep you in my prayers.
Hugs, Jenn

JustDucky
11-24-2009, 12:36 AM
I would wonder why you had such a rapid decline, did they do a bronchoscopy and get good samples that way? Have they looked for MAC too? Just some thoughts. I am sorry things have been so rough for you. I would look into centers now for tx evaluation. Maybe they will have a different opinion or even a better treatment plan. Who knows...I am thinking of you and will keep you in my prayers.
<br />Hugs, Jenn

crystalina0814
11-24-2009, 02:52 AM
I am so sorry to hear about your struggles. I will be praying for you.

I didn't see you mention anything about trying Asthma treatments. Have you been on anything for it? My lung function droppend significantly- not as much as yours, but about 20% over a months time- and a combo of prednisone boost, upping my albuterol, adding singulair, claritin and prilosec (for aspiration of gastric juices) has brought me back to base (for me). I would get a second opinion. I am sorry you were told that there is nothing they can do for you, there HAS to be a reason for such a drop so quickly.

And....welcome! This place is amazing for ideas and support.

crystalina0814
11-24-2009, 02:52 AM
I am so sorry to hear about your struggles. I will be praying for you.

I didn't see you mention anything about trying Asthma treatments. Have you been on anything for it? My lung function droppend significantly- not as much as yours, but about 20% over a months time- and a combo of prednisone boost, upping my albuterol, adding singulair, claritin and prilosec (for aspiration of gastric juices) has brought me back to base (for me). I would get a second opinion. I am sorry you were told that there is nothing they can do for you, there HAS to be a reason for such a drop so quickly.

And....welcome! This place is amazing for ideas and support.

crystalina0814
11-24-2009, 02:52 AM
I am so sorry to hear about your struggles. I will be praying for you.

I didn't see you mention anything about trying Asthma treatments. Have you been on anything for it? My lung function droppend significantly- not as much as yours, but about 20% over a months time- and a combo of prednisone boost, upping my albuterol, adding singulair, claritin and prilosec (for aspiration of gastric juices) has brought me back to base (for me). I would get a second opinion. I am sorry you were told that there is nothing they can do for you, there HAS to be a reason for such a drop so quickly.

And....welcome! This place is amazing for ideas and support.

crystalina0814
11-24-2009, 02:52 AM
I am so sorry to hear about your struggles. I will be praying for you.

I didn't see you mention anything about trying Asthma treatments. Have you been on anything for it? My lung function droppend significantly- not as much as yours, but about 20% over a months time- and a combo of prednisone boost, upping my albuterol, adding singulair, claritin and prilosec (for aspiration of gastric juices) has brought me back to base (for me). I would get a second opinion. I am sorry you were told that there is nothing they can do for you, there HAS to be a reason for such a drop so quickly.

And....welcome! This place is amazing for ideas and support.

crystalina0814
11-24-2009, 02:52 AM
I am so sorry to hear about your struggles. I will be praying for you.
<br />
<br />I didn't see you mention anything about trying Asthma treatments. Have you been on anything for it? My lung function droppend significantly- not as much as yours, but about 20% over a months time- and a combo of prednisone boost, upping my albuterol, adding singulair, claritin and prilosec (for aspiration of gastric juices) has brought me back to base (for me). I would get a second opinion. I am sorry you were told that there is nothing they can do for you, there HAS to be a reason for such a drop so quickly.
<br />
<br />And....welcome! This place is amazing for ideas and support.