Can somebody give me some answers, please!

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Keelyisbored

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Tisha</b></i> Actually, now reading Jacobus's post I remembered something. I was on Colistin for a lot of years (8?) and suddenly started developing a lot of out-of-breathlessness. Due to a flight in which they lost my luggage and left me without nebs for 5 days (!!!) I came to realize that one was the culprit. It's a rare side effect, but it happens. I quit Coly in 2007 and went over to Tobi (1 month on, 1 month off) then I got worse and my doctor started giving me Tobi every month. I started to feel out of breath again in 2011 and we've changed to routine: I'm back to Tobi alternating with Coly (at present Coly doesn't give me a reaction) using Atrovent before and it's working. Thing is, I cannot be without nebs... However it feels like my current out-of-breathlessness is not due to the nebs but the recurring infections, but with the patches I can handle it.</end quote>Thank you very much for your ideas! I love this forum- everyone is so nice!
 
K

Keelyisbored

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Tisha</b></i> Actually, now reading Jacobus's post I remembered something. I was on Colistin for a lot of years (8?) and suddenly started developing a lot of out-of-breathlessness. Due to a flight in which they lost my luggage and left me without nebs for 5 days (!!!) I came to realize that one was the culprit. It's a rare side effect, but it happens. I quit Coly in 2007 and went over to Tobi (1 month on, 1 month off) then I got worse and my doctor started giving me Tobi every month. I started to feel out of breath again in 2011 and we've changed to routine: I'm back to Tobi alternating with Coly (at present Coly doesn't give me a reaction) using Atrovent before and it's working. Thing is, I cannot be without nebs... However it feels like my current out-of-breathlessness is not due to the nebs but the recurring infections, but with the patches I can handle it.</end quote>Thank you very much for your ideas! I love this forum- everyone is so nice!
 
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scanboyd

Member
Keely, sorry you are having a tough time. I use 3% HTS, one thing that I sugget strongly is to be well hydrated before you use it. It takes me about a hour in the A.M drinking plenty of fluids befor I start my neb. rx. Getting the mucous thin so it will come up and out! My fev 1 is 31%; but it has been a gradul decline over the yrs. and my body has adjusted to it. My resting sats run 97-98 they do drop when I do my tredmill exercise doing 16 min. mile grade of 4, use O2 for this, sats drop to 92-93. If I did not use O2 they would drop to 87-88.

Good luck and hope and pray that you do well!!
 
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scanboyd

Member
Keely, sorry you are having a tough time. I use 3% HTS, one thing that I sugget strongly is to be well hydrated before you use it. It takes me about a hour in the A.M drinking plenty of fluids befor I start my neb. rx. Getting the mucous thin so it will come up and out! My fev 1 is 31%; but it has been a gradul decline over the yrs. and my body has adjusted to it. My resting sats run 97-98 they do drop when I do my tredmill exercise doing 16 min. mile grade of 4, use O2 for this, sats drop to 92-93. If I did not use O2 they would drop to 87-88.

Good luck and hope and pray that you do well!!
 
K

Keelyisbored

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>scanboyd</b></i> Keely, sorry you are having a tough time. I use 3% HTS, one thing that I sugget strongly is to be well hydrated before you use it. It takes me about a hour in the A.M drinking plenty of fluids befor I start my neb. rx. Getting the mucous thin so it will come up and out! My fev 1 is 31%; but it has been a gradul decline over the yrs. and my body has adjusted to it. My resting sats run 97-98 they do drop when I do my tredmill exercise doing 16 min. mile grade of 4, use O2 for this, sats drop to 92-93. If I did not use O2 they would drop to 87-88. Good luck and hope and pray that you do well!!</end quote> Thank you very much for your reply! My sats are around 95-96% at the moment. My sats sometimes drop to 88% on mere slow walking and I'm being told oxygen is not an option! Wow, big difference of opinions from care centres anyway! Thank you again, Keely.
 
K

Keelyisbored

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>scanboyd</b></i> Keely, sorry you are having a tough time. I use 3% HTS, one thing that I sugget strongly is to be well hydrated before you use it. It takes me about a hour in the A.M drinking plenty of fluids befor I start my neb. rx. Getting the mucous thin so it will come up and out! My fev 1 is 31%; but it has been a gradul decline over the yrs. and my body has adjusted to it. My resting sats run 97-98 they do drop when I do my tredmill exercise doing 16 min. mile grade of 4, use O2 for this, sats drop to 92-93. If I did not use O2 they would drop to 87-88. Good luck and hope and pray that you do well!!</end quote> Thank you very much for your reply! My sats are around 95-96% at the moment. My sats sometimes drop to 88% on mere slow walking and I'm being told oxygen is not an option! Wow, big difference of opinions from care centres anyway! Thank you again, Keely.
 
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dbsholes

New member
Keely,

I can't imagine why oxygen would not be an option unless it's due to cost. Question that one.

Oxygen is great if you use it as a tool - a way of getting yourself back in shape. The danger is that some people feel so good on it that they get hooked. Don't do that. Not at your age!

Your sats are higher than mine (usually in the low 90s), but my PFTs are higher than yours. Go figure. I'm sitting here doing my nebs as I write this.

David Sholes
Bennington Vermont
 
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dbsholes

New member
Keely,

I can't imagine why oxygen would not be an option unless it's due to cost. Question that one.

Oxygen is great if you use it as a tool - a way of getting yourself back in shape. The danger is that some people feel so good on it that they get hooked. Don't do that. Not at your age!

Your sats are higher than mine (usually in the low 90s), but my PFTs are higher than yours. Go figure. I'm sitting here doing my nebs as I write this.

David Sholes
Bennington Vermont
 
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dbsholes

New member
"I'm so suprised that a bunch of people who don't know me seem to care more about my health that than my own doctor!"

That's because we've all been in your place and we're all rooting for you. You are a beautiful ginger-haired Irish girl and we want you to live a long, full, and happy life. We know how frustrating it is to be in your situation and many of us learned the hard way that you sometimes have to FIGHT to get the healthcare you need. Plus, by asking our advise, you help us old-timers feel useful.

David
 
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dbsholes

New member
"I'm so suprised that a bunch of people who don't know me seem to care more about my health that than my own doctor!"

That's because we've all been in your place and we're all rooting for you. You are a beautiful ginger-haired Irish girl and we want you to live a long, full, and happy life. We know how frustrating it is to be in your situation and many of us learned the hard way that you sometimes have to FIGHT to get the healthcare you need. Plus, by asking our advise, you help us old-timers feel useful.

David
 
K

Keelyisbored

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>dbsholes</b></i> "I'm so suprised that a bunch of people who don't know me seem to care more about my health that than my own doctor!" That's because we've all been in your place and we're all rooting for you. You are a beautiful ginger-haired Irish girl and we want you to live a long, full, and happy life. We know how frustrating it is to be in your situation and many of us learned the hard way that you sometimes have to FIGHT to get the healthcare you need. Plus, by asking our advise, you help us old-timers feel useful. David</end quote>Thank you very much for such kind words, David. It is frustrating but it's also nice to know I'm not alone in it! :)
 
K

Keelyisbored

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>dbsholes</b></i> "I'm so suprised that a bunch of people who don't know me seem to care more about my health that than my own doctor!" That's because we've all been in your place and we're all rooting for you. You are a beautiful ginger-haired Irish girl and we want you to live a long, full, and happy life. We know how frustrating it is to be in your situation and many of us learned the hard way that you sometimes have to FIGHT to get the healthcare you need. Plus, by asking our advise, you help us old-timers feel useful. David</end quote>Thank you very much for such kind words, David. It is frustrating but it's also nice to know I'm not alone in it! :)
 
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Swallowtail66

Guest
As a mom of CF daughters whoare doing well, but don't want to taketheir meds or do theirtherapy, I am amazed by your strength. I only wish my daughters would work half as hard as you to take care of themselves. Our docs say not to push them, but let them take control in time, so I commend your mother as well. Maybe I should take a page out of her book!

I am short of breath when my heart beats too fast (I have spraventricular tachycardia) and when my asthma isn't controlled well.

I will be thinking and praying for you to find your answers. Cat
 
S

Swallowtail66

Guest
As a mom of CF daughters whoare doing well, but don't want to taketheir meds or do theirtherapy, I am amazed by your strength. I only wish my daughters would work half as hard as you to take care of themselves. Our docs say not to push them, but let them take control in time, so I commend your mother as well. Maybe I should take a page out of her book!

I am short of breath when my heart beats too fast (I have spraventricular tachycardia) and when my asthma isn't controlled well.

I will be thinking and praying for you to find your answers. Cat
 
K

Keelyisbored

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Swallowtail66</b></i> As a mom of CF daughters whoare doing well, but don't want to taketheir meds or do theirtherapy, I am amazed by your strength. I only wish my daughters would work half as hard as you to take care of themselves. Our docs say not to push them, but let them take control in time, so I commend your mother as well. Maybe I should take a page out of her book! I am short of breath when my heart beats too fast (I have spraventricular tachycardia) and when my asthma isn't controlled well. I will be thinking and praying for you to find your answers. Cat</end quote>Thanks very much for your answer, Cat :)
 
K

Keelyisbored

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Swallowtail66</b></i> As a mom of CF daughters whoare doing well, but don't want to taketheir meds or do theirtherapy, I am amazed by your strength. I only wish my daughters would work half as hard as you to take care of themselves. Our docs say not to push them, but let them take control in time, so I commend your mother as well. Maybe I should take a page out of her book! I am short of breath when my heart beats too fast (I have spraventricular tachycardia) and when my asthma isn't controlled well. I will be thinking and praying for you to find your answers. Cat</end quote>Thanks very much for your answer, Cat :)
 
A

augiee

New member
Christ, I always loved Ireland, after reading what you have to deal with not so much. Honestly my best advice move, which is not an easything, I'm talking to a different country, what you are dealing with is flat out scary for a person with cf. Idk maybe write to the cf foundation in the states to see if there is a program to help. cf should be isolated when in hospital because of what your dealing with, you should not have to deal with that, it's a early death sentence.
 
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augiee

New member
Christ, I always loved Ireland, after reading what you have to deal with not so much. Honestly my best advice move, which is not an easything, I'm talking to a different country, what you are dealing with is flat out scary for a person with cf. Idk maybe write to the cf foundation in the states to see if there is a program to help. cf should be isolated when in hospital because of what your dealing with, you should not have to deal with that, it's a early death sentence.
 
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