NTM Treatment Update
We are nearing the end of week 11 of Leah's NTM treatment. Here is where we stand....
Promising news - As of Friday, her sputum culture from March 14th has shown no growth of the NTM (fifteen days reporting). We are pleased to see this, as usually we see the NTM show up within 5-7 days. However, results will not be finalized for another couple of weeks. If it continues to be negative, this would count as her first negative culture. Culture conversion is defined as three consecutive negative cultures.
One of the IV medications that Leah was on is known to cause hearing loss. Every two weeks, Leah was having her hearing checked. Her hearing was super good when we started and we had been seeing a gradual decline (not in the language range, but in really high pitch sounds) each time. Doctor was hoping it would level off, but since it continued to decline significantly in those ranges, we could assume that it would trickle down into the language sounds if we continued on the medication. After being on the IV Amikacin for 9 weeks, we needed to switch her to the nebulized form of the medication. We will continue to do auditory testing regularly as it can still cause hearing loss, but it shouldn't effect the hearing to the same degree as the extremely high dose she was on with the IV.
Leah is still on the other IV medication and will finish out the full 12 weeks on it. But when we switched her to the nebulized form of the Amikacin, we added in two more oral antibiotics, which we will continue throughout the duration of the continuation phase of her treatment. In total, she is on 5 different antibiotics right now.
We had a bit of a scare as we entered Spring Break. The day after we switched her to the nebulized Amikacin and added the two heavy duty antibiotics, Leah got sick with a high fever. Doctor thought it was most likely viral, however, since it was persisting, we had to consider if it might be an infection in her central line or a drug fever from the medications she was on. Thankfully after 5 days, her fever went away, but she was completely worn out, had increased cough, congestion, and was barely eating. After a couple more days, she started to bounce back and we are being really careful not to push her too much. Doctor said it can take up to 2 weeks to completely recover from the virus that hit her.
Needless to say, spring break was not exactly fun for Leah. But we are glad that she is starting to feel better and able to do a bit more now!
Joliet Great Strides - May 6, 2017
We are also getting ready for the Joliet Great Strides walk on Saturday, May 6th! This will be our 8th year walking to support the amazing work that the Cystic Fibrosis Foundation is doing to improve and extend the lives of those living with CF.
We are thankful for the amazing breakthrough treatments that are now available, becoming available, and in the pipeline for the future! The CFF is committed to Leah, our family, and the thousands of others impacted by CF. They will not stop until a cure is found for everyone with CF! And we want to be part of this. Please consider joining us!! Your support means the world to us!
To donate or join our team, please click here.
4/3/2017 12:01:57 am
Thinking of you guys always Kathy. Much love to you and Leah and the family. 💜
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We are truly blessed. We want this to be a place we can share updates on how Leah is doing with her CF. As well as a place to share our hopes, dreams, and prayer requests. Thank you for loving and supporting Leah as she fights everyday to add more tomorrows.