Long Day at Clinic:
I had my regular Clinic appointment and I went through screening for another clinical trial! I've done two other trials in the last year and a half. Feel free to Read about them HERE! I really enjoy doing them! So I'm going to Dr. B's (Chicago's Cystic Fibrosis Institute's) Research Seminar on Sunday. Not only is it 3 hours of lecture about al the old and new trials, but outcomes and implications for us for the future! I love that he is honest, he tells the negative with the positive. Plus, its an amazing restuarant with a beautiful buffet. Shrimp cocktail, omeletes made to order, and even an amazing 3 tier chocolate fountain. I'll probably be a little tired for it, considering I'll be getting home late the night before from a Hockey Game!
I was a little nervous about today too, because my lungs have been low the last couple visits. But I was excited to do the screening for the new trial (Inhaled Mannitol vs placebo). My appointment(s) started at 9:30 this morning. I got up at 6am to do my meds and drive to clinic. When I first got there we did my regular CF appointment tests. Which consist of regular breathing tests (measuring how many breaths I take per min) and a few lung function tests in the "box." Andrew took a picture of me doing those tests (see to right)
Then I had to wait until 12:30 (due to trial protocol) to do my screening tests, so Andrew and I decided to go to Steak N Shake for a quick, cheap lunch (with some yummy milkshakes). I'm not a big fan of milkshakes, drinking milk and the cold weather usually always ends up with me "tossing my cookies." However, we had enough time to sit and let it settle, before we ventured out of the restaurant into the cold. AND Brrrrrr I mean cold. I practically buried my face into Andrew's jacket and didn't watch where he lead me. Talk about trust. Just kidding.
TRIAL TIME: The inhaled (powder) Mannitol was a completely new thing for me. It feels so weird to me, like your inhaling powdered sugar into your lungs. The powder is thicker like flour or powdered sugar, not light like a regular inhaler (puffer). So your mind at first thinks its supposed to be swallowed due to consistency, but I didn't do that. Thankfully, my brain figured it out and got the hang of it. Still it is weird and it really did a job on my lungs. It made me cough deeper and I feel pretty positive about the outcome of this trial. I can't wait to start my trial med or placebo (depending on which I get assigned).
So the trial part went well but the clinic #s weren't what I wanted. I went down again in lung function. He also mentioned he thought he saw a nasal polyp in my nose. But it could be mucus, etc. So I will just pay attention to my sinuses more and see if I start having any issues. I know lots of CFers have sinus surgeries quite often, Laura sure did. But, hopefully this one disappears before next clinic and is nothing. My lung function was 48% but my weight went up to 102 lbs. Doc said I sound good, my weight went up, he trusts my opinion that I'm not sick and agrees that I'm just not quite up to my baseline of 55-58% - side note: a major reason might have to do with I haven't had my Cayston inhaled (nebulizer) antibiotic since the insurance has denied paying for it and replied they need to look more into the appeal Doc sent them (Nov. 6th). So unfortunately, I'm on TOBI constantly til I get a Cayston machine. I've been on Tobi for 3 months and my body gets used to it after a while, so it doesn't fight as well (hence why we switch between them every month)... He doesn't think I need a hospital stay or IVs yet. He (like me) believes I will increase as soon as I get the Cayston back!
Who knows how long that will take, so I need to work hard to stay healthy. I'm avoiding the cold, eating extra, sleeping a full 8 hours, and I'm even exercising. That's right.... lifting baby weights and doing (or attempting) to do yoga. Its sooo tough. I can't do any moves correctly. My legs are fairly strong, but my arms are so weak they can't support me. I can't even lift up into a backbend or hold myself in the push up position... I've lost all my flexibility, since I haven't taken dance or done theatre since 2013. So I need to keep working at it...
Hopefully, soon Doc will get my Cayston Machine approved and my body will have a 2nd antibiotic to fight my Psudeomonas (shakes fist at CF superbugs). Until then I just have to work a little harder not to drop anymore! I love that Doc trusts me and my opnion. I can't wait for my weekend. Hanging with a few friends (discussing my engagement), also my family is going to a Hockey game Saturday night. Then Sunday I will eat a glorious buffet and learn all about CF research!
I had my regular Clinic appointment and I went through screening for another clinical trial! I've done two other trials in the last year and a half. Feel free to Read about them HERE! I really enjoy doing them! So I'm going to Dr. B's (Chicago's Cystic Fibrosis Institute's) Research Seminar on Sunday. Not only is it 3 hours of lecture about al the old and new trials, but outcomes and implications for us for the future! I love that he is honest, he tells the negative with the positive. Plus, its an amazing restuarant with a beautiful buffet. Shrimp cocktail, omeletes made to order, and even an amazing 3 tier chocolate fountain. I'll probably be a little tired for it, considering I'll be getting home late the night before from a Hockey Game!
I was a little nervous about today too, because my lungs have been low the last couple visits. But I was excited to do the screening for the new trial (Inhaled Mannitol vs placebo). My appointment(s) started at 9:30 this morning. I got up at 6am to do my meds and drive to clinic. When I first got there we did my regular CF appointment tests. Which consist of regular breathing tests (measuring how many breaths I take per min) and a few lung function tests in the "box." Andrew took a picture of me doing those tests (see to right)Then I had to wait until 12:30 (due to trial protocol) to do my screening tests, so Andrew and I decided to go to Steak N Shake for a quick, cheap lunch (with some yummy milkshakes). I'm not a big fan of milkshakes, drinking milk and the cold weather usually always ends up with me "tossing my cookies." However, we had enough time to sit and let it settle, before we ventured out of the restaurant into the cold. AND Brrrrrr I mean cold. I practically buried my face into Andrew's jacket and didn't watch where he lead me. Talk about trust. Just kidding.
TRIAL TIME: The inhaled (powder) Mannitol was a completely new thing for me. It feels so weird to me, like your inhaling powdered sugar into your lungs. The powder is thicker like flour or powdered sugar, not light like a regular inhaler (puffer). So your mind at first thinks its supposed to be swallowed due to consistency, but I didn't do that. Thankfully, my brain figured it out and got the hang of it. Still it is weird and it really did a job on my lungs. It made me cough deeper and I feel pretty positive about the outcome of this trial. I can't wait to start my trial med or placebo (depending on which I get assigned).
So the trial part went well but the clinic #s weren't what I wanted. I went down again in lung function. He also mentioned he thought he saw a nasal polyp in my nose. But it could be mucus, etc. So I will just pay attention to my sinuses more and see if I start having any issues. I know lots of CFers have sinus surgeries quite often, Laura sure did. But, hopefully this one disappears before next clinic and is nothing. My lung function was 48% but my weight went up to 102 lbs. Doc said I sound good, my weight went up, he trusts my opinion that I'm not sick and agrees that I'm just not quite up to my baseline of 55-58% - side note: a major reason might have to do with I haven't had my Cayston inhaled (nebulizer) antibiotic since the insurance has denied paying for it and replied they need to look more into the appeal Doc sent them (Nov. 6th). So unfortunately, I'm on TOBI constantly til I get a Cayston machine. I've been on Tobi for 3 months and my body gets used to it after a while, so it doesn't fight as well (hence why we switch between them every month)... He doesn't think I need a hospital stay or IVs yet. He (like me) believes I will increase as soon as I get the Cayston back!
Who knows how long that will take, so I need to work hard to stay healthy. I'm avoiding the cold, eating extra, sleeping a full 8 hours, and I'm even exercising. That's right.... lifting baby weights and doing (or attempting) to do yoga. Its sooo tough. I can't do any moves correctly. My legs are fairly strong, but my arms are so weak they can't support me. I can't even lift up into a backbend or hold myself in the push up position... I've lost all my flexibility, since I haven't taken dance or done theatre since 2013. So I need to keep working at it...Hopefully, soon Doc will get my Cayston Machine approved and my body will have a 2nd antibiotic to fight my Psudeomonas (shakes fist at CF superbugs). Until then I just have to work a little harder not to drop anymore! I love that Doc trusts me and my opnion. I can't wait for my weekend. Hanging with a few friends (discussing my engagement), also my family is going to a Hockey game Saturday night. Then Sunday I will eat a glorious buffet and learn all about CF research!
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