Unexpected Lock Up

[ladybug]

Well, I took PFTs yesterday and they're only up 6%. I am on oxygen now almost constantly and feel terrible compared to when I came in (I HATE hospitals and have always done home health, but this clinic believes in in-patient only so whatever.) I've lost 5 lbs.

I'm just so dissapointed. I feel so much worse than when I came in 8 days ago. I didn't even feel sick then! I should have a much better 7-day PFT result, as usually after 14 days, my PFT's only raise another 2-3%.

I'm just really bummed about it all. They're talking about trying another (3rd) IV med, but would only keep me on it for another week, which I do NOT agree with. I don't think putting someone on an IV med for just 7 days is effective and is just asking for resistance. Anyone else feel this way?

Urgh. My doc has been on vacation all week and I'm being seen by a doctor who has worked with CF, but isn't part of the clinic. I would feel SOOOO much better if my doc were here. Urgh.

Anyway, if anyone has anything to add or any suggestions, thoughts, etc. please let me know. I have internet in my room now, so should be able to check daily. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Take care,

 

[ladybug]

Well, I took PFTs yesterday and they're only up 6%. I am on oxygen now almost constantly and feel terrible compared to when I came in (I HATE hospitals and have always done home health, but this clinic believes in in-patient only so whatever.) I've lost 5 lbs.

I'm just so dissapointed. I feel so much worse than when I came in 8 days ago. I didn't even feel sick then! I should have a much better 7-day PFT result, as usually after 14 days, my PFT's only raise another 2-3%.

I'm just really bummed about it all. They're talking about trying another (3rd) IV med, but would only keep me on it for another week, which I do NOT agree with. I don't think putting someone on an IV med for just 7 days is effective and is just asking for resistance. Anyone else feel this way?

Urgh. My doc has been on vacation all week and I'm being seen by a doctor who has worked with CF, but isn't part of the clinic. I would feel SOOOO much better if my doc were here. Urgh.

Anyway, if anyone has anything to add or any suggestions, thoughts, etc. please let me know. I have internet in my room now, so should be able to check daily. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Take care,

 

[ladybug]

Well, I took PFTs yesterday and they're only up 6%. I am on oxygen now almost constantly and feel terrible compared to when I came in (I HATE hospitals and have always done home health, but this clinic believes in in-patient only so whatever.) I've lost 5 lbs.

I'm just so dissapointed. I feel so much worse than when I came in 8 days ago. I didn't even feel sick then! I should have a much better 7-day PFT result, as usually after 14 days, my PFT's only raise another 2-3%.

I'm just really bummed about it all. They're talking about trying another (3rd) IV med, but would only keep me on it for another week, which I do NOT agree with. I don't think putting someone on an IV med for just 7 days is effective and is just asking for resistance. Anyone else feel this way?

Urgh. My doc has been on vacation all week and I'm being seen by a doctor who has worked with CF, but isn't part of the clinic. I would feel SOOOO much better if my doc were here. Urgh.

Anyway, if anyone has anything to add or any suggestions, thoughts, etc. please let me know. I have internet in my room now, so should be able to check daily. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Take care,

 

[ladybug]

Well, I took PFTs yesterday and they're only up 6%. I am on oxygen now almost constantly and feel terrible compared to when I came in (I HATE hospitals and have always done home health, but this clinic believes in in-patient only so whatever.) I've lost 5 lbs.

I'm just so dissapointed. I feel so much worse than when I came in 8 days ago. I didn't even feel sick then! I should have a much better 7-day PFT result, as usually after 14 days, my PFT's only raise another 2-3%.

I'm just really bummed about it all. They're talking about trying another (3rd) IV med, but would only keep me on it for another week, which I do NOT agree with. I don't think putting someone on an IV med for just 7 days is effective and is just asking for resistance. Anyone else feel this way?

Urgh. My doc has been on vacation all week and I'm being seen by a doctor who has worked with CF, but isn't part of the clinic. I would feel SOOOO much better if my doc were here. Urgh.

Anyway, if anyone has anything to add or any suggestions, thoughts, etc. please let me know. I have internet in my room now, so should be able to check daily. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Take care,

 

[ladybug]

Well, I took PFTs yesterday and they're only up 6%. I am on oxygen now almost constantly and feel terrible compared to when I came in (I HATE hospitals and have always done home health, but this clinic believes in in-patient only so whatever.) I've lost 5 lbs.

I'm just so dissapointed. I feel so much worse than when I came in 8 days ago. I didn't even feel sick then! I should have a much better 7-day PFT result, as usually after 14 days, my PFT's only raise another 2-3%.

I'm just really bummed about it all. They're talking about trying another (3rd) IV med, but would only keep me on it for another week, which I do NOT agree with. I don't think putting someone on an IV med for just 7 days is effective and is just asking for resistance. Anyone else feel this way?

Urgh. My doc has been on vacation all week and I'm being seen by a doctor who has worked with CF, but isn't part of the clinic. I would feel SOOOO much better if my doc were here. Urgh.

Anyway, if anyone has anything to add or any suggestions, thoughts, etc. please let me know. I have internet in my room now, so should be able to check daily. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Take care,

 

[mom2lillian]

Sonia-I am not sure about the 3rd med, never had it happen but I will be interested to read how they handle it. I am sorry you are not feeling well.

Is it possible for them to put a stationary bike inyour room so you can excercise? I know how much you like too and it cant hurt right? Might be a good time to monitor the oxygen too. Excercising makes me feel less anxious and would help you sleep better probably.

What about startings HTS while in to help get some good coughing going? You dont have to worry about resistance if you dont want to continue.

take care!

 

[mom2lillian]

Sonia-I am not sure about the 3rd med, never had it happen but I will be interested to read how they handle it. I am sorry you are not feeling well.

Is it possible for them to put a stationary bike inyour room so you can excercise? I know how much you like too and it cant hurt right? Might be a good time to monitor the oxygen too. Excercising makes me feel less anxious and would help you sleep better probably.

What about startings HTS while in to help get some good coughing going? You dont have to worry about resistance if you dont want to continue.

take care!

 

[mom2lillian]

Sonia-I am not sure about the 3rd med, never had it happen but I will be interested to read how they handle it. I am sorry you are not feeling well.

Is it possible for them to put a stationary bike inyour room so you can excercise? I know how much you like too and it cant hurt right? Might be a good time to monitor the oxygen too. Excercising makes me feel less anxious and would help you sleep better probably.

What about startings HTS while in to help get some good coughing going? You dont have to worry about resistance if you dont want to continue.

take care!

 

[mom2lillian]

Sonia-I am not sure about the 3rd med, never had it happen but I will be interested to read how they handle it. I am sorry you are not feeling well.

Is it possible for them to put a stationary bike inyour room so you can excercise? I know how much you like too and it cant hurt right? Might be a good time to monitor the oxygen too. Excercising makes me feel less anxious and would help you sleep better probably.

What about startings HTS while in to help get some good coughing going? You dont have to worry about resistance if you dont want to continue.

take care!

 

[mom2lillian]

Sonia-I am not sure about the 3rd med, never had it happen but I will be interested to read how they handle it. I am sorry you are not feeling well.

Is it possible for them to put a stationary bike inyour room so you can excercise? I know how much you like too and it cant hurt right? Might be a good time to monitor the oxygen too. Excercising makes me feel less anxious and would help you sleep better probably.

What about startings HTS while in to help get some good coughing going? You dont have to worry about resistance if you dont want to continue.

take care!

 

[ladybug]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mom2lillian</b></i>


Is it possible for them to put a stationary bike inyour room so you can excercise? I know how much you like too and it cant hurt right? Might be a good time to monitor the oxygen too. Excercising makes me feel less anxious and would help you sleep better probably.



What about startings HTS while in to help get some good coughing going? You dont have to worry about resistance if you dont want to continue.



take care!</end quote></div>

Hi... Well, I actually do go to pulmonary rehab once a day and walk fast and uphill (always with O2) so my 30-40 mins. a day of cardio is still sort of being met, though not the hard jogs I'm used to cause I've had such side effects from the meds and am just short of breath from not doing anything ELSE. Its just that I'm just sitting in bed the other 23.5 hours out of the day, which is not what I do. I cook, clean, play with dogs, etc. etc... So, I don't know.

I do already do HTS. I'm not getting much up with it, but never do at home either. I just don't feel/sound too congested, but just SOB.

Thanks for the suggestions though! <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[ladybug]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mom2lillian</b></i>


Is it possible for them to put a stationary bike inyour room so you can excercise? I know how much you like too and it cant hurt right? Might be a good time to monitor the oxygen too. Excercising makes me feel less anxious and would help you sleep better probably.



What about startings HTS while in to help get some good coughing going? You dont have to worry about resistance if you dont want to continue.



take care!</end quote></div>

Hi... Well, I actually do go to pulmonary rehab once a day and walk fast and uphill (always with O2) so my 30-40 mins. a day of cardio is still sort of being met, though not the hard jogs I'm used to cause I've had such side effects from the meds and am just short of breath from not doing anything ELSE. Its just that I'm just sitting in bed the other 23.5 hours out of the day, which is not what I do. I cook, clean, play with dogs, etc. etc... So, I don't know.

I do already do HTS. I'm not getting much up with it, but never do at home either. I just don't feel/sound too congested, but just SOB.

Thanks for the suggestions though! <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[ladybug]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mom2lillian</b></i>


Is it possible for them to put a stationary bike inyour room so you can excercise? I know how much you like too and it cant hurt right? Might be a good time to monitor the oxygen too. Excercising makes me feel less anxious and would help you sleep better probably.



What about startings HTS while in to help get some good coughing going? You dont have to worry about resistance if you dont want to continue.



take care!</end quote></div>

Hi... Well, I actually do go to pulmonary rehab once a day and walk fast and uphill (always with O2) so my 30-40 mins. a day of cardio is still sort of being met, though not the hard jogs I'm used to cause I've had such side effects from the meds and am just short of breath from not doing anything ELSE. Its just that I'm just sitting in bed the other 23.5 hours out of the day, which is not what I do. I cook, clean, play with dogs, etc. etc... So, I don't know.

I do already do HTS. I'm not getting much up with it, but never do at home either. I just don't feel/sound too congested, but just SOB.

Thanks for the suggestions though! <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[ladybug]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mom2lillian</b></i>


Is it possible for them to put a stationary bike inyour room so you can excercise? I know how much you like too and it cant hurt right? Might be a good time to monitor the oxygen too. Excercising makes me feel less anxious and would help you sleep better probably.



What about startings HTS while in to help get some good coughing going? You dont have to worry about resistance if you dont want to continue.



take care!</end quote>

Hi... Well, I actually do go to pulmonary rehab once a day and walk fast and uphill (always with O2) so my 30-40 mins. a day of cardio is still sort of being met, though not the hard jogs I'm used to cause I've had such side effects from the meds and am just short of breath from not doing anything ELSE. Its just that I'm just sitting in bed the other 23.5 hours out of the day, which is not what I do. I cook, clean, play with dogs, etc. etc... So, I don't know.

I do already do HTS. I'm not getting much up with it, but never do at home either. I just don't feel/sound too congested, but just SOB.

Thanks for the suggestions though! <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[ladybug]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mom2lillian</b></i>


Is it possible for them to put a stationary bike inyour room so you can excercise? I know how much you like too and it cant hurt right? Might be a good time to monitor the oxygen too. Excercising makes me feel less anxious and would help you sleep better probably.



What about startings HTS while in to help get some good coughing going? You dont have to worry about resistance if you dont want to continue.



take care!</end quote>

Hi... Well, I actually do go to pulmonary rehab once a day and walk fast and uphill (always with O2) so my 30-40 mins. a day of cardio is still sort of being met, though not the hard jogs I'm used to cause I've had such side effects from the meds and am just short of breath from not doing anything ELSE. Its just that I'm just sitting in bed the other 23.5 hours out of the day, which is not what I do. I cook, clean, play with dogs, etc. etc... So, I don't know.

I do already do HTS. I'm not getting much up with it, but never do at home either. I just don't feel/sound too congested, but just SOB.

Thanks for the suggestions though! <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[ladybug]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>ladybug</b></i>


I've also had a lot more "incidents" with the heart monitor I'm wearing, which still causes anxiety. Its going off a lot on its own when I'm just transitioning from sleep to waking, which is also kind of odd. It feels like its beating in my throat. DH has listened when its recording an incident and says it sounds like my heart is just missing a beat every 4-5 beats. odd. So, I'll keep everyone posted. This is causing me more anxiety than the CF at this point (although the lower FEV1 doesn't help... LOL).



Also, I don't actually FEEL any different than when I came in. I maybe even feel a bit worse.... My cough, etc. are all the same and with the added O2 and anxiety and heart issues, its like the hospital itself made things worse... LOL. I know this often happens to us all, but its just crappy that I felt decent coming in and now I feel exhausted and anxious, etc... Oh well. I'll get off my soap box now. <img src="i/expressions/face-icon-small-smile.gif" border="0">



Know I think of you all every day. I hope things are going well with everyone. I don't have much time to read what's been going on with everyone, but hope to get some extra time next week to catch up (or when I get out the following week).



Take care,</end quote></div>

Just an update regarding the above-mentioned things....

First, they found out why my heart was palpitating so much... The PICC was actually too far into the aorta and was causing spasms and misfirings in my heart when I'd move my neck certain ways! They pulled it back out about 4 cm last night and I haven't had an incident since. Crazy stuff. They had taken an x-ray and even had done the PICC in IR, but apparently it all looked good at the time.

SO.... This was probably leading to a lot of the anxiety and headaches (cutting off blood flow to my head when I'd "kink" my neck) and could even have lead to some nausea..

My appetite is back! They give me Megase 2X per day and I can't stop eating. My stomach is growling all the time. Its pretty cool to go from not eating to snacking constantly. I doubt they'll keep me on this long term, but I wouldn't mind going home on it so I put some of the 5+ pounds I've lost back on. <img src="i/expressions/face-icon-small-smile.gif" border="0">

My PFTs are scheduled Monday. I'm thinking either way I'll be heading home. They did a CT scan of my lungs a few nights ago and found a TON of air trapping and started me on pulmicort and severvent (instead of advair) to see if that helps me breath better. I'm also learning a ton about proper breathing techniques for when I'm anxious or SOB or exercising. Basically, you take a 2 count of breath in through your nose and "pursed lip breathing" out for a 4 count. It can be 3/6 or 4/8 counts as well, you're just supposed to double (at least) to push all the air out of your lungs. I have been doing this with exercise and though its kinda tricky at first, it does feel good to breath like that. And, last night when I was anxious, I did it and it immediately lowered my HR.

I'm still on O2 to sleep, but during the day I'm holding my own. I'm also still using it with exercise. We're in the process of getting approved for home O2 use since I DO go down with intense exercise. Actually, I didn't know this, but when insurance approves O2, even though its just for with exercise, many of them won't Rx it just for exercise (i.e. my particular plan), so I have to drop at room air just sitting as well. So, we'll see what happens with that. The exercise physiologist did tell me that if you drop to 88-89% sats during say a 20-30 minute exercise, its not detetrimental and they don't get too worried, but anything lower than that or staying at those levels at rest, one would warrant O2 use. So, that's also interesting. He does a lot with CF and has been giving me education sessions, so I do trust what he has to say. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Anyway, sorry this got so long. Just thought I'd update on all I'm learning and how I'm feeling. I'll keep in touch.

Thanks again for the thoughts and prayers. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Take care,

 

[ladybug]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>ladybug</b></i>


I've also had a lot more "incidents" with the heart monitor I'm wearing, which still causes anxiety. Its going off a lot on its own when I'm just transitioning from sleep to waking, which is also kind of odd. It feels like its beating in my throat. DH has listened when its recording an incident and says it sounds like my heart is just missing a beat every 4-5 beats. odd. So, I'll keep everyone posted. This is causing me more anxiety than the CF at this point (although the lower FEV1 doesn't help... LOL).



Also, I don't actually FEEL any different than when I came in. I maybe even feel a bit worse.... My cough, etc. are all the same and with the added O2 and anxiety and heart issues, its like the hospital itself made things worse... LOL. I know this often happens to us all, but its just crappy that I felt decent coming in and now I feel exhausted and anxious, etc... Oh well. I'll get off my soap box now. <img src="i/expressions/face-icon-small-smile.gif" border="0">



Know I think of you all every day. I hope things are going well with everyone. I don't have much time to read what's been going on with everyone, but hope to get some extra time next week to catch up (or when I get out the following week).



Take care,</end quote></div>

Just an update regarding the above-mentioned things....

First, they found out why my heart was palpitating so much... The PICC was actually too far into the aorta and was causing spasms and misfirings in my heart when I'd move my neck certain ways! They pulled it back out about 4 cm last night and I haven't had an incident since. Crazy stuff. They had taken an x-ray and even had done the PICC in IR, but apparently it all looked good at the time.

SO.... This was probably leading to a lot of the anxiety and headaches (cutting off blood flow to my head when I'd "kink" my neck) and could even have lead to some nausea..

My appetite is back! They give me Megase 2X per day and I can't stop eating. My stomach is growling all the time. Its pretty cool to go from not eating to snacking constantly. I doubt they'll keep me on this long term, but I wouldn't mind going home on it so I put some of the 5+ pounds I've lost back on. <img src="i/expressions/face-icon-small-smile.gif" border="0">

My PFTs are scheduled Monday. I'm thinking either way I'll be heading home. They did a CT scan of my lungs a few nights ago and found a TON of air trapping and started me on pulmicort and severvent (instead of advair) to see if that helps me breath better. I'm also learning a ton about proper breathing techniques for when I'm anxious or SOB or exercising. Basically, you take a 2 count of breath in through your nose and "pursed lip breathing" out for a 4 count. It can be 3/6 or 4/8 counts as well, you're just supposed to double (at least) to push all the air out of your lungs. I have been doing this with exercise and though its kinda tricky at first, it does feel good to breath like that. And, last night when I was anxious, I did it and it immediately lowered my HR.

I'm still on O2 to sleep, but during the day I'm holding my own. I'm also still using it with exercise. We're in the process of getting approved for home O2 use since I DO go down with intense exercise. Actually, I didn't know this, but when insurance approves O2, even though its just for with exercise, many of them won't Rx it just for exercise (i.e. my particular plan), so I have to drop at room air just sitting as well. So, we'll see what happens with that. The exercise physiologist did tell me that if you drop to 88-89% sats during say a 20-30 minute exercise, its not detetrimental and they don't get too worried, but anything lower than that or staying at those levels at rest, one would warrant O2 use. So, that's also interesting. He does a lot with CF and has been giving me education sessions, so I do trust what he has to say. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Anyway, sorry this got so long. Just thought I'd update on all I'm learning and how I'm feeling. I'll keep in touch.

Thanks again for the thoughts and prayers. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Take care,

 

[ladybug]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>ladybug</b></i>


I've also had a lot more "incidents" with the heart monitor I'm wearing, which still causes anxiety. Its going off a lot on its own when I'm just transitioning from sleep to waking, which is also kind of odd. It feels like its beating in my throat. DH has listened when its recording an incident and says it sounds like my heart is just missing a beat every 4-5 beats. odd. So, I'll keep everyone posted. This is causing me more anxiety than the CF at this point (although the lower FEV1 doesn't help... LOL).



Also, I don't actually FEEL any different than when I came in. I maybe even feel a bit worse.... My cough, etc. are all the same and with the added O2 and anxiety and heart issues, its like the hospital itself made things worse... LOL. I know this often happens to us all, but its just crappy that I felt decent coming in and now I feel exhausted and anxious, etc... Oh well. I'll get off my soap box now. <img src="i/expressions/face-icon-small-smile.gif" border="0">



Know I think of you all every day. I hope things are going well with everyone. I don't have much time to read what's been going on with everyone, but hope to get some extra time next week to catch up (or when I get out the following week).



Take care,</end quote></div>

Just an update regarding the above-mentioned things....

First, they found out why my heart was palpitating so much... The PICC was actually too far into the aorta and was causing spasms and misfirings in my heart when I'd move my neck certain ways! They pulled it back out about 4 cm last night and I haven't had an incident since. Crazy stuff. They had taken an x-ray and even had done the PICC in IR, but apparently it all looked good at the time.

SO.... This was probably leading to a lot of the anxiety and headaches (cutting off blood flow to my head when I'd "kink" my neck) and could even have lead to some nausea..

My appetite is back! They give me Megase 2X per day and I can't stop eating. My stomach is growling all the time. Its pretty cool to go from not eating to snacking constantly. I doubt they'll keep me on this long term, but I wouldn't mind going home on it so I put some of the 5+ pounds I've lost back on. <img src="i/expressions/face-icon-small-smile.gif" border="0">

My PFTs are scheduled Monday. I'm thinking either way I'll be heading home. They did a CT scan of my lungs a few nights ago and found a TON of air trapping and started me on pulmicort and severvent (instead of advair) to see if that helps me breath better. I'm also learning a ton about proper breathing techniques for when I'm anxious or SOB or exercising. Basically, you take a 2 count of breath in through your nose and "pursed lip breathing" out for a 4 count. It can be 3/6 or 4/8 counts as well, you're just supposed to double (at least) to push all the air out of your lungs. I have been doing this with exercise and though its kinda tricky at first, it does feel good to breath like that. And, last night when I was anxious, I did it and it immediately lowered my HR.

I'm still on O2 to sleep, but during the day I'm holding my own. I'm also still using it with exercise. We're in the process of getting approved for home O2 use since I DO go down with intense exercise. Actually, I didn't know this, but when insurance approves O2, even though its just for with exercise, many of them won't Rx it just for exercise (i.e. my particular plan), so I have to drop at room air just sitting as well. So, we'll see what happens with that. The exercise physiologist did tell me that if you drop to 88-89% sats during say a 20-30 minute exercise, its not detetrimental and they don't get too worried, but anything lower than that or staying at those levels at rest, one would warrant O2 use. So, that's also interesting. He does a lot with CF and has been giving me education sessions, so I do trust what he has to say. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Anyway, sorry this got so long. Just thought I'd update on all I'm learning and how I'm feeling. I'll keep in touch.

Thanks again for the thoughts and prayers. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Take care,

 

[ladybug]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>ladybug</b></i>


I've also had a lot more "incidents" with the heart monitor I'm wearing, which still causes anxiety. Its going off a lot on its own when I'm just transitioning from sleep to waking, which is also kind of odd. It feels like its beating in my throat. DH has listened when its recording an incident and says it sounds like my heart is just missing a beat every 4-5 beats. odd. So, I'll keep everyone posted. This is causing me more anxiety than the CF at this point (although the lower FEV1 doesn't help... LOL).



Also, I don't actually FEEL any different than when I came in. I maybe even feel a bit worse.... My cough, etc. are all the same and with the added O2 and anxiety and heart issues, its like the hospital itself made things worse... LOL. I know this often happens to us all, but its just crappy that I felt decent coming in and now I feel exhausted and anxious, etc... Oh well. I'll get off my soap box now. <img src="i/expressions/face-icon-small-smile.gif" border="0">



Know I think of you all every day. I hope things are going well with everyone. I don't have much time to read what's been going on with everyone, but hope to get some extra time next week to catch up (or when I get out the following week).



Take care,</end quote>

Just an update regarding the above-mentioned things....

First, they found out why my heart was palpitating so much... The PICC was actually too far into the aorta and was causing spasms and misfirings in my heart when I'd move my neck certain ways! They pulled it back out about 4 cm last night and I haven't had an incident since. Crazy stuff. They had taken an x-ray and even had done the PICC in IR, but apparently it all looked good at the time.

SO.... This was probably leading to a lot of the anxiety and headaches (cutting off blood flow to my head when I'd "kink" my neck) and could even have lead to some nausea..

My appetite is back! They give me Megase 2X per day and I can't stop eating. My stomach is growling all the time. Its pretty cool to go from not eating to snacking constantly. I doubt they'll keep me on this long term, but I wouldn't mind going home on it so I put some of the 5+ pounds I've lost back on. <img src="i/expressions/face-icon-small-smile.gif" border="0">

My PFTs are scheduled Monday. I'm thinking either way I'll be heading home. They did a CT scan of my lungs a few nights ago and found a TON of air trapping and started me on pulmicort and severvent (instead of advair) to see if that helps me breath better. I'm also learning a ton about proper breathing techniques for when I'm anxious or SOB or exercising. Basically, you take a 2 count of breath in through your nose and "pursed lip breathing" out for a 4 count. It can be 3/6 or 4/8 counts as well, you're just supposed to double (at least) to push all the air out of your lungs. I have been doing this with exercise and though its kinda tricky at first, it does feel good to breath like that. And, last night when I was anxious, I did it and it immediately lowered my HR.

I'm still on O2 to sleep, but during the day I'm holding my own. I'm also still using it with exercise. We're in the process of getting approved for home O2 use since I DO go down with intense exercise. Actually, I didn't know this, but when insurance approves O2, even though its just for with exercise, many of them won't Rx it just for exercise (i.e. my particular plan), so I have to drop at room air just sitting as well. So, we'll see what happens with that. The exercise physiologist did tell me that if you drop to 88-89% sats during say a 20-30 minute exercise, its not detetrimental and they don't get too worried, but anything lower than that or staying at those levels at rest, one would warrant O2 use. So, that's also interesting. He does a lot with CF and has been giving me education sessions, so I do trust what he has to say. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Anyway, sorry this got so long. Just thought I'd update on all I'm learning and how I'm feeling. I'll keep in touch.

Thanks again for the thoughts and prayers. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Take care,

 

[ladybug]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>ladybug</b></i>


I've also had a lot more "incidents" with the heart monitor I'm wearing, which still causes anxiety. Its going off a lot on its own when I'm just transitioning from sleep to waking, which is also kind of odd. It feels like its beating in my throat. DH has listened when its recording an incident and says it sounds like my heart is just missing a beat every 4-5 beats. odd. So, I'll keep everyone posted. This is causing me more anxiety than the CF at this point (although the lower FEV1 doesn't help... LOL).



Also, I don't actually FEEL any different than when I came in. I maybe even feel a bit worse.... My cough, etc. are all the same and with the added O2 and anxiety and heart issues, its like the hospital itself made things worse... LOL. I know this often happens to us all, but its just crappy that I felt decent coming in and now I feel exhausted and anxious, etc... Oh well. I'll get off my soap box now. <img src="i/expressions/face-icon-small-smile.gif" border="0">



Know I think of you all every day. I hope things are going well with everyone. I don't have much time to read what's been going on with everyone, but hope to get some extra time next week to catch up (or when I get out the following week).



Take care,</end quote>

Just an update regarding the above-mentioned things....

First, they found out why my heart was palpitating so much... The PICC was actually too far into the aorta and was causing spasms and misfirings in my heart when I'd move my neck certain ways! They pulled it back out about 4 cm last night and I haven't had an incident since. Crazy stuff. They had taken an x-ray and even had done the PICC in IR, but apparently it all looked good at the time.

SO.... This was probably leading to a lot of the anxiety and headaches (cutting off blood flow to my head when I'd "kink" my neck) and could even have lead to some nausea..

My appetite is back! They give me Megase 2X per day and I can't stop eating. My stomach is growling all the time. Its pretty cool to go from not eating to snacking constantly. I doubt they'll keep me on this long term, but I wouldn't mind going home on it so I put some of the 5+ pounds I've lost back on. <img src="i/expressions/face-icon-small-smile.gif" border="0">

My PFTs are scheduled Monday. I'm thinking either way I'll be heading home. They did a CT scan of my lungs a few nights ago and found a TON of air trapping and started me on pulmicort and severvent (instead of advair) to see if that helps me breath better. I'm also learning a ton about proper breathing techniques for when I'm anxious or SOB or exercising. Basically, you take a 2 count of breath in through your nose and "pursed lip breathing" out for a 4 count. It can be 3/6 or 4/8 counts as well, you're just supposed to double (at least) to push all the air out of your lungs. I have been doing this with exercise and though its kinda tricky at first, it does feel good to breath like that. And, last night when I was anxious, I did it and it immediately lowered my HR.

I'm still on O2 to sleep, but during the day I'm holding my own. I'm also still using it with exercise. We're in the process of getting approved for home O2 use since I DO go down with intense exercise. Actually, I didn't know this, but when insurance approves O2, even though its just for with exercise, many of them won't Rx it just for exercise (i.e. my particular plan), so I have to drop at room air just sitting as well. So, we'll see what happens with that. The exercise physiologist did tell me that if you drop to 88-89% sats during say a 20-30 minute exercise, its not detetrimental and they don't get too worried, but anything lower than that or staying at those levels at rest, one would warrant O2 use. So, that's also interesting. He does a lot with CF and has been giving me education sessions, so I do trust what he has to say. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Anyway, sorry this got so long. Just thought I'd update on all I'm learning and how I'm feeling. I'll keep in touch.

Thanks again for the thoughts and prayers. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Take care,