Friday, September 16, 2011

Our new plan... Things are looking up!

I haven't really talked much about my health since my last rant about my adult clinic doctor saying my 14% drop was my new baseline & wasn't going treat it. That was a little over a month ago and a LOT has happened since! So here is a little catching up.

My actual CF doctor put me a month of IV Merrem & decided to keep the Bactrum I was already on for another 3 weeks. In the first 10 days my lung function jumped up 12% to 45. I felt amazing! I talked about my concerns with the adult clinic doctor with him & it felt so great getting it all of my chest. He told me there isn't much he can do clinic wise. I have to see the adult doctor. She knows more when it comes to lady stuff & bone density or heart problems then he does & because here in vegas we aren't backed by the hospital we don't have the money or resources to have an actual adult CF team. He did say that if I leave clinic visits feeling something should of been done or not happy with what happened to call him right away. He told me that she is a good doctor & he has no idea why should wasn't going try anything, but we do have a close enough relationship that I can call him anytime. He told me that I know my body & my life is the most important thing. He works day and night to keep us healthy and if I ever have any concerns even with something he did to be straight forward with him. He is also the only on call doctor so if it's after hours or the weekend any message left at the office goes straight to his cell phone & he'll call me back. So even though I still have to see the doctor I don't like I know Dr. N has my back!!

About 2 weeks later we had a "family meeting" to discuss where I am in the disease and what we can do keep my numbers up and me off IV's for longer then 3 or 4 weeks. He doesn't feel like my baseline is in the low 30's because I can hit higher 40's after meds. We talked about how this up & down is common for my age and that I'm kind of paying the price of my rebellion of all medically thing from my teen years, but he's proud of all the hard work I've put in over the past few years. We decided to end tobi (yipppe! I've been on that for YEARS) and just do Cayston then try an inhaled Levaquin on the old 'Tobi months". It's more of an experiment, but both my Staph & Stenotrophomonas react to Levaquin very well so inhaling it every other month should help hopefully! We also decided to start pulmonary rehab. That was my idea, but as soon as I said it he was very excited. No only will it help work my body out & hopefully give me more energy, it will also help me strengthen my lungs without damaging any part of me. We are hoping that will help stabilize things a bit. I'm off IV's & besides random nagging pains in my lower lungs that I have my Mom do PT on every night, I'm feeling alright. A bit exhausted from school, but I can't wait for our new plan of action to get started!

I'm so grateful to have such a supportive doctor & a even more supportive family. My Mom is there for everything, & fights for me when I just can't do it anymore. Being back in school has been wonderful. I love learning. & to top it off I've seen two of my best friends in the last month! Both Rachel and Sherise came to vegas for a bit to visit. It was nice having friends to spend time with again even if it was only a couple days. Things are looking up & if I have anything to do about it they are gonna stay this way. I hope everyone is loving life & all it's many wonders out there. It's up to us if we are happy or sad & I am choosing to be happy. I've spent plenty of time feeling sorry for myself & being frustrated with life lately. With things looking up, I'm embracing the opportunity to really focus on my blessings & enjoy living. Life is so much better that way!


  1. I am glad your lung function jumped 12%. That's amazing! I was just curious if you are on the Levaquin trials or if it is available to the public. I can't use Tobi or Colistin anymore so I have been impatiently waiting for inhaled Cipro or Levaquin to become available. I hope the Levaquin does the trick for you!

  2. Hooray! I've never heard about inhaled Levaquin - I didn't realize they were doing trials on so many new antibiotics! I have a feeling that I probably can't use TOBI anymore. It's always irritated me, and the last time I did it it made things so much worse that the ultimate improvement was really not worth it. Sigh... it's always such a balancing act!

    And I completely agree with you on the choosing happiness thing. I've been thinking a LOT about that this year!

  3. My whole life I've always dropped real low then jumped back up... it's always up down, up down but now the downs are more frequent. I've always loved Tobi but my doctor said he prefers cayston so if we have to stop one he wants it to be Tobi. Actually the Levaquin isn't out yet it's still in trials. It's being test for Pseudomonas but he wants to try it out on my stuff. We'll see how it goes. I'm gonna be a little experiment.

    So have I. After I withdrew from school and had to move back to vegas I spent so much frustrated with how nothing was going the way I planned and I was so tired of being so sad all the time cause all my friends were so far away. I decided no more feeling sorry for myself. I have a lot going for me & just cause it's not what I had planned doesn't mean it's not what God had planned & I'd like to think I trust him & his plan for me. It's been a lot of work but it's been really good.

  4. Brianne - I found your blog through "Being Cindy." I am so glad to hear that your lung function made a 12% jump - that's AWESOME! Also, I'm so glad you have such a supportive family and care center. I believe that is so necessary for us CFers! I hope that you keep improving with the levaquin!!