Not a great Dr's appt.

K

KMV77

New member
Well I went to my CF dr's appt today. I'm feeling pretty good. I was at the gym this am, hit some machines and did 33 mins on the treadmill, at 3.3 mph, had my finger pulse ox with me and I didnt de sat below 92. recovered when I was off the treadmill to 96. So I go to my appt. My fev1 is still in the .90's....great. So I go to do my 6 min walk and de sat into the 80's. wtf?!?! I'm thinking I'm getting some anxiety while I'm there and thats contributing to my de-sating. Compared 4 different pulse ox's and they were all different, but the one i used with the test was 3% lower than my normal one. So Dr says I'm dehydrated, had post nasal drip and took a sudafed this am, needed it to function. Anyway I tell him I'm having tightening in my chest, so I get 2 weeks of Cayston and prednisone, to see if I can keep myself out of the hospital. I hate this living from Dr's appt to Dr's appt. OK I'm done with that rant. Anyone had luck with Cayston?
Thanks for listening,
Kevin
 
K

KMV77

New member
Well I went to my CF dr's appt today. I'm feeling pretty good. I was at the gym this am, hit some machines and did 33 mins on the treadmill, at 3.3 mph, had my finger pulse ox with me and I didnt de sat below 92. recovered when I was off the treadmill to 96. So I go to my appt. My fev1 is still in the .90's....great. So I go to do my 6 min walk and de sat into the 80's. wtf?!?! I'm thinking I'm getting some anxiety while I'm there and thats contributing to my de-sating. Compared 4 different pulse ox's and they were all different, but the one i used with the test was 3% lower than my normal one. So Dr says I'm dehydrated, had post nasal drip and took a sudafed this am, needed it to function. Anyway I tell him I'm having tightening in my chest, so I get 2 weeks of Cayston and prednisone, to see if I can keep myself out of the hospital. I hate this living from Dr's appt to Dr's appt. OK I'm done with that rant. Anyone had luck with Cayston?
Thanks for listening,
Kevin
 
K

KMV77

New member
Well I went to my CF dr's appt today. I'm feeling pretty good. I was at the gym this am, hit some machines and did 33 mins on the treadmill, at 3.3 mph, had my finger pulse ox with me and I didnt de sat below 92. recovered when I was off the treadmill to 96. So I go to my appt. My fev1 is still in the .90's....great. So I go to do my 6 min walk and de sat into the 80's. wtf?!?! I'm thinking I'm getting some anxiety while I'm there and thats contributing to my de-sating. Compared 4 different pulse ox's and they were all different, but the one i used with the test was 3% lower than my normal one. So Dr says I'm dehydrated, had post nasal drip and took a sudafed this am, needed it to function. Anyway I tell him I'm having tightening in my chest, so I get 2 weeks of Cayston and prednisone, to see if I can keep myself out of the hospital. I hate this living from Dr's appt to Dr's appt. OK I'm done with that rant. Anyone had luck with Cayston?
<br />Thanks for listening,
<br />Kevin
 
R

rubyroselee

New member
Hi Kevin,

That is strange about the de-satting even though your PFTs are good. Hmmmm...

But my experience with Cayston has been very positive. I started it last month for an exacerbation and it worked wonders for me! I think it worked very well. The only issue I had was one side effect where it felt like a lump in the back of my throat and it made me gag a lot, especially during the treatment. And the 3x/day is a little bit of a drag too. But other than that, it worked wonders for my exacerbation.

So good luck to you and hopefully this helps!
 
R

rubyroselee

New member
Hi Kevin,

That is strange about the de-satting even though your PFTs are good. Hmmmm...

But my experience with Cayston has been very positive. I started it last month for an exacerbation and it worked wonders for me! I think it worked very well. The only issue I had was one side effect where it felt like a lump in the back of my throat and it made me gag a lot, especially during the treatment. And the 3x/day is a little bit of a drag too. But other than that, it worked wonders for my exacerbation.

So good luck to you and hopefully this helps!
 
R

rubyroselee

New member
Hi Kevin,
<br />
<br />That is strange about the de-satting even though your PFTs are good. Hmmmm...
<br />
<br />But my experience with Cayston has been very positive. I started it last month for an exacerbation and it worked wonders for me! I think it worked very well. The only issue I had was one side effect where it felt like a lump in the back of my throat and it made me gag a lot, especially during the treatment. And the 3x/day is a little bit of a drag too. But other than that, it worked wonders for my exacerbation.
<br />
<br />So good luck to you and hopefully this helps!
 
L

LouLou

New member
Is there some sort of calibration you can do on your home pulse ox to make sure it is correct? Then chart your data and present your #'s along with your stable FEV1 and I think things you'll feel much more comfortable and confident about your situation.

Personally I have to wonder why you weren't started on Cayston sooner. Many of us have been on it for 8-10 months. It could really help you as far as clinical trial data has shown. Is there something more to the story for why you weren't started on it sooner? It is a prophylactic drug for the treatment of PA after all. Are you still with Dr. H? hmm...

Anyway, I think your situation doesn't sound bad. Just curious why 2 wks on Cayston? If you are doing well you should finish out the 28 days and if not you'll be admitted? Is that the plan?

All that said, and since you asked...Cayston hasn't done much for me but I deal with bad MRSA.
 
L

LouLou

New member
Is there some sort of calibration you can do on your home pulse ox to make sure it is correct? Then chart your data and present your #'s along with your stable FEV1 and I think things you'll feel much more comfortable and confident about your situation.

Personally I have to wonder why you weren't started on Cayston sooner. Many of us have been on it for 8-10 months. It could really help you as far as clinical trial data has shown. Is there something more to the story for why you weren't started on it sooner? It is a prophylactic drug for the treatment of PA after all. Are you still with Dr. H? hmm...

Anyway, I think your situation doesn't sound bad. Just curious why 2 wks on Cayston? If you are doing well you should finish out the 28 days and if not you'll be admitted? Is that the plan?

All that said, and since you asked...Cayston hasn't done much for me but I deal with bad MRSA.
 
L

LouLou

New member
Is there some sort of calibration you can do on your home pulse ox to make sure it is correct? Then chart your data and present your #'s along with your stable FEV1 and I think things you'll feel much more comfortable and confident about your situation.
<br />
<br />Personally I have to wonder why you weren't started on Cayston sooner. Many of us have been on it for 8-10 months. It could really help you as far as clinical trial data has shown. Is there something more to the story for why you weren't started on it sooner? It is a prophylactic drug for the treatment of PA after all. Are you still with Dr. H? hmm...
<br />
<br />Anyway, I think your situation doesn't sound bad. Just curious why 2 wks on Cayston? If you are doing well you should finish out the 28 days and if not you'll be admitted? Is that the plan?
<br />
<br />All that said, and since you asked...Cayston hasn't done much for me but I deal with bad MRSA.
 
K

KMV77

New member
When I say fev is at .90 that is 23% for me which. Last year in november I was 38%. I think the results change with age too (based on what the machine says as far as predicteds go). I am still with Dr H... Not sure for how long though. I dont present as sick, no exacerbation. I'm still working and going to the gym etc. I dont know if I get anxiety attacks or what. I dont know how I can desat there into the 80's and stay stable at the gym. Another thing that I think is a factor is that I am at a totally different clinic. They moved and all the equipment is new. The scale downstairs in the pft lab was 5lbs light when I was weighted. I told the Dr since I did some w/c resident weights the night before at work, and checked my weight on 3 different scales and I was not that weight. Anyway you'd think that things would be calibrated better. I have checked my pulse ox with a few at work and they are similar, within 1% of each other. I'm going to see if I can take one of them to the gym and see if I desat on that. This is driving me nuts since I feel pretty well. No idea why I wasnt on Cayston earlier. I have infection that is still suceptible to cipro and bactrim, so I take those 2, zithro for anti inflamatory effects on the lungs, and on tobi.
Kevin
 
K

KMV77

New member
When I say fev is at .90 that is 23% for me which. Last year in november I was 38%. I think the results change with age too (based on what the machine says as far as predicteds go). I am still with Dr H... Not sure for how long though. I dont present as sick, no exacerbation. I'm still working and going to the gym etc. I dont know if I get anxiety attacks or what. I dont know how I can desat there into the 80's and stay stable at the gym. Another thing that I think is a factor is that I am at a totally different clinic. They moved and all the equipment is new. The scale downstairs in the pft lab was 5lbs light when I was weighted. I told the Dr since I did some w/c resident weights the night before at work, and checked my weight on 3 different scales and I was not that weight. Anyway you'd think that things would be calibrated better. I have checked my pulse ox with a few at work and they are similar, within 1% of each other. I'm going to see if I can take one of them to the gym and see if I desat on that. This is driving me nuts since I feel pretty well. No idea why I wasnt on Cayston earlier. I have infection that is still suceptible to cipro and bactrim, so I take those 2, zithro for anti inflamatory effects on the lungs, and on tobi.
Kevin
 
K

KMV77

New member
When I say fev is at .90 that is 23% for me which. Last year in november I was 38%. I think the results change with age too (based on what the machine says as far as predicteds go). I am still with Dr H... Not sure for how long though. I dont present as sick, no exacerbation. I'm still working and going to the gym etc. I dont know if I get anxiety attacks or what. I dont know how I can desat there into the 80's and stay stable at the gym. Another thing that I think is a factor is that I am at a totally different clinic. They moved and all the equipment is new. The scale downstairs in the pft lab was 5lbs light when I was weighted. I told the Dr since I did some w/c resident weights the night before at work, and checked my weight on 3 different scales and I was not that weight. Anyway you'd think that things would be calibrated better. I have checked my pulse ox with a few at work and they are similar, within 1% of each other. I'm going to see if I can take one of them to the gym and see if I desat on that. This is driving me nuts since I feel pretty well. No idea why I wasnt on Cayston earlier. I have infection that is still suceptible to cipro and bactrim, so I take those 2, zithro for anti inflamatory effects on the lungs, and on tobi.
<br />Kevin
 
L

Lex

New member
your FEV or FEV1 is .9 ?
<br />
<br />Is your FEV1 23% ?
<br />
<br />If so, that's a different discussion.
 
M

mag6125

New member
I have a similar fev1 at 25% and am currently being evaluated for transplant. When I did my walk test I desated to 83 after about 400ft or so. I can't exercise without O2 now and this wasn't the case a couple of months ago. It seemed for me like it changed overnight, one day I could walk on the treadmill for 30+ mins with no problems and now I have to be on 6L of oxygen to do that. Some days are better than others, maybe you were just having an off day?
 
M

mag6125

New member
I have a similar fev1 at 25% and am currently being evaluated for transplant. When I did my walk test I desated to 83 after about 400ft or so. I can't exercise without O2 now and this wasn't the case a couple of months ago. It seemed for me like it changed overnight, one day I could walk on the treadmill for 30+ mins with no problems and now I have to be on 6L of oxygen to do that. Some days are better than others, maybe you were just having an off day?
 
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