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Showing posts from August, 2016

The end of VX 661 study

As most of you know, for the past 7 months, I have been participating in a Vertex clinical trial testing a drug called VX-661 in combination with Ivacaftor. On Monday, Vertex released a statement saying they are stopping the trial for people with one copy of deltaF508 mutation and one copy of another minimal CFTR function mutation (what they refer to as "het-min" mutation combination). Meaning my part in this study is finished. The results thus far showed that the drug was not providing meaningful benefit and therefore was not worth the time, effort, and money to continue studying. This drug combination is still being studied in other mutation combinations and is thought to be more promising.

When I heard the news on Monday, I was filled with mixed emotions. For starters, I so desperately want there to be a cure for CF, and we're so close I can almost taste it! Yet we're not there yet, and my patience is growing thin waiting. Also, I've seen so many great success…

Crazy week, crazy life

I like to make life difficult. I try my best not to, but it just always happens. Sorry friends and family who have to deal with me ;). I think it's part of the cystic fibrosis code that nothing health-related can ever be easy!

I started on IV antibiotics on August 2. By this point, I had been on oral Bactrim for 3 weeks and a course of prednisone to help my struggling lungs. My lung function was down to 49%, down from 60% in May. The plan was to start IV Ceftazadine and IV Levaquin for 3 weeks, which would finish just in time for my fall semester to start back up. At the beginning of the IVs, I felt like I was coughing up a lot of gross stuff and getting the excess mucus out of my lungs. However, I did PFTs again a week after starting the IVs, and the results were disappointing. Even though I had been doing 4 breathing treatments a day and exercising twice a day, my PFTs had gone down to 45%. My doctor checked my most recent sputum, and the sensitivities to the antibiotics had cha…

Nursing

Nursing care is not for the arrogant. You have to be willing to learn. You have to be willing to listen. You have to be willing to say "I'm sorry, let me fix that".

Nursing care is not for the insecure. You have to go into a patient's room with the expectation that you're going to do everything right. You have to come across confident and secure in your knowledge.

Nursing care is not for the unorganized. You have to know when medicines are due and bring those meds at that time. You have to manage several different patient schedules and keep track of how all your patients are doing.

Nursing care is not for people who don't like people. When someone needs a nurse,  they are sick and usually feeling pretty crummy. Patients shouldn't have to also deal with rude nurses or people who you can clearly tell don't like people.

Nursing care is not for the faint of heart. It's hard working in the hospital, seeing so many sick people per day. Some people's…