Monday, February 23, 2015

Not the Outcome I Wanted

Doc appointment: 

This is gonna be a quick blog post. I just got home from the Doc's and I'm super tired. So here's the update. Mid January I went into the hospital and was on IVs for 2 weeks (my pft was 48%). After the hospital/ IVs it only went up to 52%. So doc added some nebulizer antibiotics. Today I had another check-up and my lung function tests were low. Like lower 40s. So Doc had me take a couple puffs of my albuteral inhaler and retry the pulmonary tests, they went slightly up (around 49%). So pretty much the hospital & IVs didn't do anything,  and neither did the Colliston nebullizer.

So what now? Well, Doc wants me to continue the Colliston & Tobi, but add a 3rd albuteral & vest per day. So that means 5 nebs, half hour vest in morning, 1 neb & half hour vest mid day, and 4 nebs & half hour vest at night.  Picture right: My night meds tonight!

Also, I'm going to be going back on prednisone (20 mgs a day) for another. Meanwhille, I'm going to try ordering that Cayston machine (I've been needing for the last 9 months, but insurance refused) tomorrow. Once I get the machine & nebs (hopefully) I will be switching off Tobi and going on Cayston 3 x a day instead.

So that's the lungs part and Doc's plan. I'll go back on March 9th to see if I've made progress, if not then we will dicuss other options. But Doc's hoping that since my body hasn't had the Cayston, maybe this is my lungs way of repsonding & thinks getting it back will help!

For the other stuff: As you know I've had lots of GI issues and abdominal cramping, bathroom issues, and more. Well, doc asked a lot of question and when he felt my abdomin, I guess the spots I said were tender might indicate to him colitis or something similar. He referred me to a GI specialist and wants me to make an appointment for this week if possible (or next week). So hopefully, the intestinal issues will get resolved soon.

Also on March 9th we are re-testing my liver numbers to see if it is still getting closer to normal.

Lungs, colon issues, and liver. I think that pretty much covers it.

So even though the news wasn't what I wanted and I am frustrated, at least I'm on track to perhaps get some answers and finally resolve some of the problems. I'll keep you updated.


  1. Sorry, I know how disappointing it is when a hospital stay feels like a waste. I had amazing results with Cayston when it first came out. Unfortunately, I do not respond to it anymore, but I hope it does the trick for you like it once did for me. The three times a day is a little bit of a drag, but it is super fast, like 3 minutes fast, so that is a huge plus.

    1. Yeah, I love how fast it is! I'm hoping I haven't gotten resistant to Tobi & Cayston. I've been on both alternating for years (since they came out). I'm hoping my drop in lung function is from the insurance not providing the Cayston for the last 9 months and my body missing it. Opposed to my body not fighting as well. I'm gonna try to kick up my exercise to help move my lungs and get them going! I do albuteral & vest 3 x a day too, so adding a Cayston isn't too bad. And if it heelps my numbers soooo worth it!
      If Cayston doesn't work for you, may I ask what you use for nebs to keep bugs at bay? Have you noticed a big difference since Cayston stopped working? That would be so upsetting. I hope Tobi or Collistin or something else is working for you!