Can somebody give me some answers, please!

[Keelyisbored]

I'm 15 and a half- I'm posting this in the adult section as I'm hoping you guys will have more answers for me. Someone deleted the last post I put here for no apparent reason, please don't do that again. I'm just trying to get help.When I turned 13, CF hit me-hard. Before that I was so so so well. I gradually went from 75% FEV1 to 35%. I am so breathless now all the time- I only have to put my top or shoes on for it to happen. It feels like a corset getting tighter and tighter on me. My doctor has no idea why and says I shouldn't be this breathless at 35%. He is now making out like it's all in my head and/or I'm making it up. He's sending me to an adult CF doctor to be seen, but you can tell he's just thinking I'm a nut by what he says. He wants to send me to a pycologist (spelling, sorry)soon. Seriously, it's not in my head and just because you don't know what's wrong, doesn't mean something isn't.My SpO2 is around 94-95% percent and IV's don't make the breathlessness better. Neither do steriods or ventolin.He's like 'you don't do anything anymore'. Well, I would do things if I could actually breath properly! Please, for the love of God, does anyone have any ideas? I can't keep this up. I can't go to school because I can't walk around, and I'm basically confined to my house nowadays. Please please please, if you know anything, please comment.

 

[Keelyisbored]

I'm 15 and a half- I'm posting this in the adult section as I'm hoping you guys will have more answers for me. Someone deleted the last post I put here for no apparent reason, please don't do that again. I'm just trying to get help.When I turned 13, CF hit me-hard. Before that I was so so so well. I gradually went from 75% FEV1 to 35%. I am so breathless now all the time- I only have to put my top or shoes on for it to happen. It feels like a corset getting tighter and tighter on me. My doctor has no idea why and says I shouldn't be this breathless at 35%. He is now making out like it's all in my head and/or I'm making it up. He's sending me to an adult CF doctor to be seen, but you can tell he's just thinking I'm a nut by what he says. He wants to send me to a pycologist (spelling, sorry)soon. Seriously, it's not in my head and just because you don't know what's wrong, doesn't mean something isn't.My SpO2 is around 94-95% percent and IV's don't make the breathlessness better. Neither do steriods or ventolin.He's like 'you don't do anything anymore'. Well, I would do things if I could actually breath properly! Please, for the love of God, does anyone have any ideas? I can't keep this up. I can't go to school because I can't walk around, and I'm basically confined to my house nowadays. Please please please, if you know anything, please comment.

 

[StefanDOMINATECF]

I'm really sorry to hear about this. I experienced a similar precipitous decline myself when I was around your age--had pfts in the 90s throughout my childhood w/ few symptoms, and then boom, dropped to the low 30s for a few years.Nowmy new baseline is in the 50s and it wasn't until doctors figured outI had CF related diabetesand startedgiving me propertreatment thatI was able to reallystart feel better. Every CFer is different and this may not be the underlying issue in your case,but I would saydefinitely check your blood sugars and talk to your doctor about CFRD (CF related diabetes...its very common and some doctors are more aggressive about treating it than others). In my case, my blood sugars would spike up whenever I drank gatorade (they would hit 170 - 180 and remain there 2 hours after drinking).Also, my case it isn'tclassic diabetes because my fasting blood sugar is fine, but nowI'm a medication called Prandin to keep my blood sugars in the 120-130 range post meals. There is certainly a connection between blood sugars being elevated and increase in inflammation/ shortness of breath in CF patients and more doctors and starting to pay attention to this. Anyhow,hang in there andI pray things will get better for you soon!
FYI, a quick way to get an idea if your blood sugars are out of whack and if you don't have an actual monitor (this is by no means scientific) is to look for certain typical symptoms such as frequent urination (especially if you haven't had too much to drink), waking up at night to go to the bathroom, feeling especially bloated after a meal...

 

[StefanDOMINATECF]

I'm really sorry to hear about this. I experienced a similar precipitous decline myself when I was around your age--had pfts in the 90s throughout my childhood w/ few symptoms, and then boom, dropped to the low 30s for a few years.Nowmy new baseline is in the 50s and it wasn't until doctors figured outI had CF related diabetesand startedgiving me propertreatment thatI was able to reallystart feel better. Every CFer is different and this may not be the underlying issue in your case,but I would saydefinitely check your blood sugars and talk to your doctor about CFRD (CF related diabetes...its very common and some doctors are more aggressive about treating it than others). In my case, my blood sugars would spike up whenever I drank gatorade (they would hit 170 - 180 and remain there 2 hours after drinking).Also, my case it isn'tclassic diabetes because my fasting blood sugar is fine, but nowI'm a medication called Prandin to keep my blood sugars in the 120-130 range post meals. There is certainly a connection between blood sugars being elevated and increase in inflammation/ shortness of breath in CF patients and more doctors and starting to pay attention to this. Anyhow,hang in there andI pray things will get better for you soon!
FYI, a quick way to get an idea if your blood sugars are out of whack and if you don't have an actual monitor (this is by no means scientific) is to look for certain typical symptoms such as frequent urination (especially if you haven't had too much to drink), waking up at night to go to the bathroom, feeling especially bloated after a meal...

 

[Keelyisbored]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>StefanDOMINATECF</b></i> I'm really sorry to hear about this. I experienced a similar precipitous decline myself when I was around your age--had pfts in the 90s throughout my childhood w/ few symptoms, and then boom, dropped to the low 30s for a few years.Nowmy new baseline is in the 50s and it wasn't until doctors figured outI had CF related diabetesand startedgiving me propertreatment thatI was able to reallystart feel better. Every CFer is different and this may not be the underlying issue in your case,but I would saydefinitely check your blood sugars and talk to your doctor about CFRD (CF related diabetes...its very common and some doctors are more aggressive about treating it than others). In my case, my blood sugars would spike up whenever I drank gatorade (they would hit 170 - 180 and remain there 2 hours after drinking).Also, my case it isn'tclassic diabetes because my fasting blood sugar is fine, but nowI'm a medication called Prandin to keep my blood sugars in the 120-130 range post meals. There is certainly a connection between blood sugars being elevated and increase in inflammation/ shortness of breath in CF patients and more doctors and starting to pay attention to this. Anyhow,hang in there andI pray things will get better for you soon! FYI, a quick way to get an idea if your blood sugars are out of whack and if you don't have an actual monitor (this is by no means scientific) is to look for certain typical symptoms such as frequent urination (especially if you haven't had too much to drink), waking up at night to go to the bathroom, feeling especially bloated after a meal... </end quote>Thank you so much for answering! My mum is going to arrange for the diabetes test ASAP because they are actually mean't to check it now but keep putting it off. Thanks. Even if this isn't the cause, seriously, thank you.-PS, if anyone else has any other ideas, please still tell me them as I'm trying to find out all the possible causes-

 

[Keelyisbored]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>StefanDOMINATECF</b></i> I'm really sorry to hear about this. I experienced a similar precipitous decline myself when I was around your age--had pfts in the 90s throughout my childhood w/ few symptoms, and then boom, dropped to the low 30s for a few years.Nowmy new baseline is in the 50s and it wasn't until doctors figured outI had CF related diabetesand startedgiving me propertreatment thatI was able to reallystart feel better. Every CFer is different and this may not be the underlying issue in your case,but I would saydefinitely check your blood sugars and talk to your doctor about CFRD (CF related diabetes...its very common and some doctors are more aggressive about treating it than others). In my case, my blood sugars would spike up whenever I drank gatorade (they would hit 170 - 180 and remain there 2 hours after drinking).Also, my case it isn'tclassic diabetes because my fasting blood sugar is fine, but nowI'm a medication called Prandin to keep my blood sugars in the 120-130 range post meals. There is certainly a connection between blood sugars being elevated and increase in inflammation/ shortness of breath in CF patients and more doctors and starting to pay attention to this. Anyhow,hang in there andI pray things will get better for you soon! FYI, a quick way to get an idea if your blood sugars are out of whack and if you don't have an actual monitor (this is by no means scientific) is to look for certain typical symptoms such as frequent urination (especially if you haven't had too much to drink), waking up at night to go to the bathroom, feeling especially bloated after a meal... </end quote>Thank you so much for answering! My mum is going to arrange for the diabetes test ASAP because they are actually mean't to check it now but keep putting it off. Thanks. Even if this isn't the cause, seriously, thank you.-PS, if anyone else has any other ideas, please still tell me them as I'm trying to find out all the possible causes-

 

[cf4life]

Have you or do you exercise? It sounds like you are deconditioned. I'd suggest starting to excercise if you do not already. You may need extra O2 when exercising so keep track of you O2 stats if you can. You may think about asking to do pulmonary rehab. I would highly recommend it. They will monitor your stats/BP etc and define an excerise program based on your current condition and build you back up. I believe it is a typical 8 week program. Like I said, I highly recommend it to help get you jump started. You might find when you get your conditioning back your lung function might improve some to. Good luck.

 

[cf4life]

Have you or do you exercise? It sounds like you are deconditioned. I'd suggest starting to excercise if you do not already. You may need extra O2 when exercising so keep track of you O2 stats if you can. You may think about asking to do pulmonary rehab. I would highly recommend it. They will monitor your stats/BP etc and define an excerise program based on your current condition and build you back up. I believe it is a typical 8 week program. Like I said, I highly recommend it to help get you jump started. You might find when you get your conditioning back your lung function might improve some to. Good luck.

 

[StefanDOMINATECF]

No problem. That's what these forums are for (or at least they should be for). We need to encourage eachother and exchange ideas <img src="i/expressions/face-icon-small-smile.gif" border="0">
For what its worth, whenever there's an unexpected drop in PFTs like this, my doc tells me that both he and the patient really have to start thinking outside of the box...As the patient, you have to really be attuned to any changes (think about what you are doing differently than before or what new symptoms are you having that you haven't had before) For his/her part, the doc has to think about what new things he/she can be testing for and using the process of elimination to figure out what other treatments you may need, especially since you are saying that you aren't responding to the conventional ones. Also, don't be afraid to challenge your doctor a little bit if you feel like he/she is downplaying your condition. My doctor is a cool guy and he tells me to be open and not be afraid to offend him if I think he is missing something, because it's your well-being thats truly paramount in the grand scheme of things!

 

[StefanDOMINATECF]

No problem. That's what these forums are for (or at least they should be for). We need to encourage eachother and exchange ideas <img src="i/expressions/face-icon-small-smile.gif" border="0">
For what its worth, whenever there's an unexpected drop in PFTs like this, my doc tells me that both he and the patient really have to start thinking outside of the box...As the patient, you have to really be attuned to any changes (think about what you are doing differently than before or what new symptoms are you having that you haven't had before) For his/her part, the doc has to think about what new things he/she can be testing for and using the process of elimination to figure out what other treatments you may need, especially since you are saying that you aren't responding to the conventional ones. Also, don't be afraid to challenge your doctor a little bit if you feel like he/she is downplaying your condition. My doctor is a cool guy and he tells me to be open and not be afraid to offend him if I think he is missing something, because it's your well-being thats truly paramount in the grand scheme of things!

 

[Keelyisbored]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>cf4life</b></i> Have you or do you exercise? It sounds like you are deconditioned. I'd suggest starting to excercise if you do not already. You may need extra O2 when exercising so keep track of you O2 stats if you can. You may think about asking to do pulmonary rehab. I would highly recommend it. They will monitor your stats/BP etc and define an excerise program based on your current condition and build you back up. I believe it is a typical 8 week program. Like I said, I highly recommend it to help get you jump started. You might find when you get your conditioning back your lung function might improve some to. Good luck.</end quote>Thank you very much. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Keelyisbored]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>cf4life</b></i> Have you or do you exercise? It sounds like you are deconditioned. I'd suggest starting to excercise if you do not already. You may need extra O2 when exercising so keep track of you O2 stats if you can. You may think about asking to do pulmonary rehab. I would highly recommend it. They will monitor your stats/BP etc and define an excerise program based on your current condition and build you back up. I believe it is a typical 8 week program. Like I said, I highly recommend it to help get you jump started. You might find when you get your conditioning back your lung function might improve some to. Good luck.</end quote>Thank you very much. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[JustDucky]

Have they cultured you for MAC or done a bronch to get a really good sample to make sure they aren't missing any new bugs? If not, then they should...that's a huge drop, there has got to be a reason. Also, do you grow out Aspergillus (fungus)? That can cause really bad reactive airway problems, really give you lots of shortness of breath if that isn't controlled. Another thing, have they checked out your heart? Problems with the lungs aren't the only reasons why you can get short of breath, heart issues can do this as well, especially pulmonary hypertension. Pulmonary hypertension is high blood pressure of the vessels leading to your lungs, affects the right side of your heart if I am not mistaken. A quick way to check this would be to get an echocardiogram. Mind you, the result is an approximate value, a heart cath would give the most accurate readings. But at least the doc would know if he or she should be concerned if the echo is abnormal.

Even allergies can cause excessive shortness of breath, you could have really bad asthma on top of your CF, this would definitely make you feel like you do.

I hope you figure out what is going on, this all must be so overwhelming for you and scary for both your mom and yourself.
Sending hugs and good vibes,
Jenn 40 w/CF

 

[JustDucky]

Have they cultured you for MAC or done a bronch to get a really good sample to make sure they aren't missing any new bugs? If not, then they should...that's a huge drop, there has got to be a reason. Also, do you grow out Aspergillus (fungus)? That can cause really bad reactive airway problems, really give you lots of shortness of breath if that isn't controlled. Another thing, have they checked out your heart? Problems with the lungs aren't the only reasons why you can get short of breath, heart issues can do this as well, especially pulmonary hypertension. Pulmonary hypertension is high blood pressure of the vessels leading to your lungs, affects the right side of your heart if I am not mistaken. A quick way to check this would be to get an echocardiogram. Mind you, the result is an approximate value, a heart cath would give the most accurate readings. But at least the doc would know if he or she should be concerned if the echo is abnormal.

Even allergies can cause excessive shortness of breath, you could have really bad asthma on top of your CF, this would definitely make you feel like you do.

I hope you figure out what is going on, this all must be so overwhelming for you and scary for both your mom and yourself.
Sending hugs and good vibes,
Jenn 40 w/CF

 

[Keelyisbored]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>JustDucky</b></i> Have they cultured you for MAC or done a bronch to get a really good sample to make sure they aren't missing any new bugs? If not, then they should...that's a huge drop, there has got to be a reason. Also, do you grow out Aspergillus (fungus)? That can cause really bad reactive airway problems, really give you lots of shortness of breath if that isn't controlled. Another thing, have they checked out your heart? Problems with the lungs aren't the only reasons why you can get short of breath, heart issues can do this as well, especially pulmonary hypertension. Pulmonary hypertension is high blood pressure of the vessels leading to your lungs, affects the right side of your heart if I am not mistaken. A quick way to check this would be to get an echocardiogram. Mind you, the result is an approximate value, a heart cath would give the most accurate readings. But at least the doc would know if he or she should be concerned if the echo is abnormal. Even allergies can cause excessive shortness of breath, you could have really bad asthma on top of your CF, this would definitely make you feel like you do. I hope you figure out what is going on, this all must be so overwhelming for you and scary for both your mom and yourself. Sending hugs and good vibes, Jenn 40 w/CF</end quote>I looked up that MAC thing and saw it is treated with at least a year of zitromax, which I have been on for about four years, so I'm assuming it would of got it by now, wouldn't it? Maybe I'm wrong, I don't know. Yes, Ihave cultured Aspergillus in the pastbut I haven't cultured it in a while. I will ask them to check my heart, but the chances of them doing it is minimal, as they don't want to seem to actually find out what's wrong with me. The other day I simply asked for antibotics(just a course of tablets)for a sinus infection and was told no for absolutely no reason. When I need IV's, I nearly have to tie myself to the bed and refuse to leave the hospital because they won't keep me in. I was promised a portacath because I'm in so often and my veins are so bad, then the next day he said no, again for no reason. He's incredibly difficult. Anyway, sorry for moaning on. Thank you very much for your suggestions and if he refuses to do the test I'll go to another doctor and demand they do it.

 

[Keelyisbored]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>JustDucky</b></i> Have they cultured you for MAC or done a bronch to get a really good sample to make sure they aren't missing any new bugs? If not, then they should...that's a huge drop, there has got to be a reason. Also, do you grow out Aspergillus (fungus)? That can cause really bad reactive airway problems, really give you lots of shortness of breath if that isn't controlled. Another thing, have they checked out your heart? Problems with the lungs aren't the only reasons why you can get short of breath, heart issues can do this as well, especially pulmonary hypertension. Pulmonary hypertension is high blood pressure of the vessels leading to your lungs, affects the right side of your heart if I am not mistaken. A quick way to check this would be to get an echocardiogram. Mind you, the result is an approximate value, a heart cath would give the most accurate readings. But at least the doc would know if he or she should be concerned if the echo is abnormal. Even allergies can cause excessive shortness of breath, you could have really bad asthma on top of your CF, this would definitely make you feel like you do. I hope you figure out what is going on, this all must be so overwhelming for you and scary for both your mom and yourself. Sending hugs and good vibes, Jenn 40 w/CF</end quote>I looked up that MAC thing and saw it is treated with at least a year of zitromax, which I have been on for about four years, so I'm assuming it would of got it by now, wouldn't it? Maybe I'm wrong, I don't know. Yes, Ihave cultured Aspergillus in the pastbut I haven't cultured it in a while. I will ask them to check my heart, but the chances of them doing it is minimal, as they don't want to seem to actually find out what's wrong with me. The other day I simply asked for antibotics(just a course of tablets)for a sinus infection and was told no for absolutely no reason. When I need IV's, I nearly have to tie myself to the bed and refuse to leave the hospital because they won't keep me in. I was promised a portacath because I'm in so often and my veins are so bad, then the next day he said no, again for no reason. He's incredibly difficult. Anyway, sorry for moaning on. Thank you very much for your suggestions and if he refuses to do the test I'll go to another doctor and demand they do it.

 

[jessykt]

As Justducky mentioned, what bugs are you growing? I just went to the doctor Monday with shortness of breath (pfts around 48%) and while I grow 3-4 bugs, the psuedomonas is acting up and she thinks that's the culprit. I wanted prednisone for a few days and I went back on cayston. Hypertonic has been a real life saver, I think, that it makes you cough more stuff out (I do 7%). So I think between the steroid for inflammation and an antibiotic for the bug, I've been feeling a bit better.

I know it's difficult, but push yourself a bit each day for exercise. I HATE to exercise, but take the dog on a walk everyday. Some days are more difficult, but the ones that are easier I think are doing me so much good. It's a good indicator on how you are feeling in general over all.

Good luck!

 

[jessykt]

As Justducky mentioned, what bugs are you growing? I just went to the doctor Monday with shortness of breath (pfts around 48%) and while I grow 3-4 bugs, the psuedomonas is acting up and she thinks that's the culprit. I wanted prednisone for a few days and I went back on cayston. Hypertonic has been a real life saver, I think, that it makes you cough more stuff out (I do 7%). So I think between the steroid for inflammation and an antibiotic for the bug, I've been feeling a bit better.

I know it's difficult, but push yourself a bit each day for exercise. I HATE to exercise, but take the dog on a walk everyday. Some days are more difficult, but the ones that are easier I think are doing me so much good. It's a good indicator on how you are feeling in general over all.

Good luck!

 

[beleache]

Hi Keely,
I dont have much more to add.. unfortunately we almost have to become like detectives to figure things out at times.. it can be very frustrating !! I hope you get some answers & start feeling better soon !
Keep us posted <img src="i/expressions/face-icon-small-smile.gif" border="0"> joni

 

[beleache]

Hi Keely,
I dont have much more to add.. unfortunately we almost have to become like detectives to figure things out at times.. it can be very frustrating !! I hope you get some answers & start feeling better soon !
Keep us posted <img src="i/expressions/face-icon-small-smile.gif" border="0"> joni