Docs Appointment Today:
Yep, I had my 2 week (14 days) post (Hospital/on IVs) appointment today, It also is 5 days post switching up the IV meds from Aztreonam to Pipracillian. Make sure to read the posts below to get caught up, before reading my current update. First off, I'll explain some of the simple stuff from today's visit. My weight is only down 1 lb, so that's not too bad and Doc is pleased I'm feeling better each day. I have more energy, I'm not coughing as much and when I do its productive and not dry. Which means the 2 IV meds, 6 nebulizers, 3 Therapy Vest treatments, and 1 steriod (on top of my usual pills) were working. So that's good. And I'm keeping 100% complaint. However, 5 days on the new IVs hasn't been enough for my body to really pump my lung numbers back, so my actual FEV numbers (lung function tests) were the same from last week, so that's a bummer. BUT, since I'm starting to see a difference in how I feel that means we are on the right track. In a perfect world I'd stay on the Pipra & Tobra for another week (to get a full 14 days dose of those 2 meds...). And clearly, my body can't behave or be normal (or even normal by the "CF standard").
My body is reacting to the IV meds. I don't know if you remember the little mishap I had in Ocotober-December 2013??? Let me refresh your memory by going HERE to read the post about my lovely Anitibiotic associated symptoms & GI problems that developed after my last round of IV meds. Oh boy. Did you read it yet? Yep, okay so now you are caught up. Diarrhea, bloating, and other many nice isses that keep you from working or having a sort of normal type routine. Ha, to say the least. Well, It's happening again. I started having bad diarrhea, add on top of that the yeast infection from the anitbiotics, and my excessive hunger from the steriods;I'm a little bit of a mess. We haven't retested my liver enzymes since my hospital stay two weeks ago. They went from 92 to 75 ish in the hospital. Doc's hoping once off the IVs, steriods, etc. the liver will go back down to "normal" levels. There is no point in retesting the levels until the IVs and meds are done, clearly they cause elevated liver enzymes too...
So what are we doing, since I'm such a mess??
Well, Luckily I got a smart doc. He thinks I do need more of the IV meds, but doesn't want me to do many more incase the diarrhea & GI symptoms get worse. I agree ( I mean last time it lasted 2 MONTHS!). I couldn't work or anything. Doc said " Clearly I don't respond to oral antibiotics (they dont seem to work), and my body doesn't like IV antibiotics that much either." Well, luckily my lungs respond to IVs, but the the meds really mess up the rest of my system. So doc thinks we need to exhaust other options when I'm feeling ill from now on (as a first course of action). I'm am coninuing with the 2 IV meds wed-fri this week (in order to get a full 7 days worth), plus continuing on the higher dose of prednisone.
side note: I told Doc no prednisone near my wedding, like 2 months before. I don't want those chipmunk cheeks in my wedding pictures. Luckily, he agreed. Whew. lol- my cheeks blow up like crazy.
After my last IV on this Friday, I will start doing 3 albuterals, 2 hypertonics, 2 tobi nebs like usual, along with my vest. However, Doc thinks I will respond better to double duty. So instead of getting 2 antibiotics via IV, I'm going to do 2 antibiotics via nebulizer twice a day (Usually I do one antibiotic neb a day to keep my psuedo under control). So I'll be taking Colliston along with my Tobi. Doc says I'm to come back in two weeks (Monday the 16th). There are four antibiotics in the nebulizer form, so that may be my future course of action to take first when ill. So we'll see how that option goes.
Also good news! After the 16th I'll be given the okay to start the clinical trial I was getting ready to do! I have complete faith Doc will figure out the best course of meds for me! I think he made the right choice. I can tell I need more IVs, but too much more would be too much for my GI track and would destroy all the good bacteria. Plus, with my allergies to the antibiotics, I know I'm a bit of a challenge sometimes.
I know my body is complicated! You don't have to remind me! LOL - I made this lil picture to give you an all around look at the mess I call "my body"! I'm so glad Doc is on top of everything!
So two days of IVs, more steriods, 1 round of labs, then double duty on antibiotic nebs. And I will keep you all updated on my health. Hopefully, I will continue to keep feeling better and back to my ol' high engery self!
Also, look forward to my next blog post where I will be disucssing more about our wedding & in general CF marriage issues, I've been talking to to others online about issues they had when they decided to get married, etc. I even consulted a Lawyer that has a hotline to specifically help CFers with these types of issues. Kinda suprising everything I'm finding out. So stay tuned...
Yep, I had my 2 week (14 days) post (Hospital/on IVs) appointment today, It also is 5 days post switching up the IV meds from Aztreonam to Pipracillian. Make sure to read the posts below to get caught up, before reading my current update. First off, I'll explain some of the simple stuff from today's visit. My weight is only down 1 lb, so that's not too bad and Doc is pleased I'm feeling better each day. I have more energy, I'm not coughing as much and when I do its productive and not dry. Which means the 2 IV meds, 6 nebulizers, 3 Therapy Vest treatments, and 1 steriod (on top of my usual pills) were working. So that's good. And I'm keeping 100% complaint. However, 5 days on the new IVs hasn't been enough for my body to really pump my lung numbers back, so my actual FEV numbers (lung function tests) were the same from last week, so that's a bummer. BUT, since I'm starting to see a difference in how I feel that means we are on the right track. In a perfect world I'd stay on the Pipra & Tobra for another week (to get a full 14 days dose of those 2 meds...). And clearly, my body can't behave or be normal (or even normal by the "CF standard").
My body is reacting to the IV meds. I don't know if you remember the little mishap I had in Ocotober-December 2013??? Let me refresh your memory by going HERE to read the post about my lovely Anitibiotic associated symptoms & GI problems that developed after my last round of IV meds. Oh boy. Did you read it yet? Yep, okay so now you are caught up. Diarrhea, bloating, and other many nice isses that keep you from working or having a sort of normal type routine. Ha, to say the least. Well, It's happening again. I started having bad diarrhea, add on top of that the yeast infection from the anitbiotics, and my excessive hunger from the steriods;I'm a little bit of a mess. We haven't retested my liver enzymes since my hospital stay two weeks ago. They went from 92 to 75 ish in the hospital. Doc's hoping once off the IVs, steriods, etc. the liver will go back down to "normal" levels. There is no point in retesting the levels until the IVs and meds are done, clearly they cause elevated liver enzymes too...
So what are we doing, since I'm such a mess??
Well, Luckily I got a smart doc. He thinks I do need more of the IV meds, but doesn't want me to do many more incase the diarrhea & GI symptoms get worse. I agree ( I mean last time it lasted 2 MONTHS!). I couldn't work or anything. Doc said " Clearly I don't respond to oral antibiotics (they dont seem to work), and my body doesn't like IV antibiotics that much either." Well, luckily my lungs respond to IVs, but the the meds really mess up the rest of my system. So doc thinks we need to exhaust other options when I'm feeling ill from now on (as a first course of action). I'm am coninuing with the 2 IV meds wed-fri this week (in order to get a full 7 days worth), plus continuing on the higher dose of prednisone.
side note: I told Doc no prednisone near my wedding, like 2 months before. I don't want those chipmunk cheeks in my wedding pictures. Luckily, he agreed. Whew. lol- my cheeks blow up like crazy.
After my last IV on this Friday, I will start doing 3 albuterals, 2 hypertonics, 2 tobi nebs like usual, along with my vest. However, Doc thinks I will respond better to double duty. So instead of getting 2 antibiotics via IV, I'm going to do 2 antibiotics via nebulizer twice a day (Usually I do one antibiotic neb a day to keep my psuedo under control). So I'll be taking Colliston along with my Tobi. Doc says I'm to come back in two weeks (Monday the 16th). There are four antibiotics in the nebulizer form, so that may be my future course of action to take first when ill. So we'll see how that option goes.
Also good news! After the 16th I'll be given the okay to start the clinical trial I was getting ready to do! I have complete faith Doc will figure out the best course of meds for me! I think he made the right choice. I can tell I need more IVs, but too much more would be too much for my GI track and would destroy all the good bacteria. Plus, with my allergies to the antibiotics, I know I'm a bit of a challenge sometimes.
I know my body is complicated! You don't have to remind me! LOL - I made this lil picture to give you an all around look at the mess I call "my body"! I'm so glad Doc is on top of everything!
Also, look forward to my next blog post where I will be disucssing more about our wedding & in general CF marriage issues, I've been talking to to others online about issues they had when they decided to get married, etc. I even consulted a Lawyer that has a hotline to specifically help CFers with these types of issues. Kinda suprising everything I'm finding out. So stay tuned...
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