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Our Story

Sara was diagnosed with Cystic Fibrosis at birth, after experiencing problems with meconium ileus. Her older brother also has CF. Cystic Fibrosis (CF) Cystic fibrosis is a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time, eventually resulting in respiratory failure, as well as affecting the pancreas and other organs. There is no cure for CF, but often times a life saving double lung transplant can help extend the time a patient has to live and provide the chance for a better quality of life. Sara has been hospitalized countless times, and has been through multiple surgeries. Multiple daily treatments such as airway clearance, inhalers, specialized inhaled medications, and upwards of 30 pills are required just to try to keep infections at bay. Even though the treatments for cf are exhausting and time consuming, Sara is always the first in line to offer a helping hand to other people in their time of need.

Due to the progr...

Featured Post

Procedure Update

"Went down for my EGD and Bravo placement. Everything went well as far as I know. Except, I bit my lip and have a sorer throat than normal which is to be expected. Staff was friendly as usual. Sedation is nice. I loved that they were listening to Linkin Park and Panic At The Disco. They gave me a €..

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Updates

 

Procedure Update

"Went down for my EGD and Bravo placement. Everything went well as far as I know. Except, I bit my lip and have a sorer throat than normal which is to be expected. Staff was friendly as usual. Sedation is nice. I loved that they were listening to Continue Reading »

Transplant Evaluation Update

"I got admitted on September 28th and started on IV Tobramycin and Zosyn. I actually coughed during treatments which was a little different and had bad headaches and some earaches especially with fevers. Viral panel negative, WBC low, CRP higher Continue Reading »

Health Update

“Turns out I’m having even more of an allergy issue with Cefepime than before.. not just itchy but starting to spread and get a rash even with all of the Benadryl, so they are taking me off of it and I’m starting Zosyn. I’m surprised though Continue Reading »

Health Update

“I had a “sick visit” pop-up appointment with my cf team today after the same ole’ fevers, coughing, shortness of breath, throwing up from coughing, body aches, incontinence has been hitting me again. I didn’t feel like the Minocycline was Continue Reading »

Health Update

"I’m dizzy every day still not sure why.. last 2 weeks started an anti-fungal per tx team request, having low bp, low bs, and lower resting heart rate (usually a good thing), my usual bleeding and clotting issues but a little more intense. Every Continue Reading »

Transplant Evaluation Decision

"The transplant team has officially decided that they want more testing done and then they'll have another meeting on when/whether to list me. They said they usually will not ask for more tests unless you will be a candidate but sometimes they find Continue Reading »

Transplant Hopes and Fears

"I can't imagine what it would be like to have energy to run and play with my child. I can't imagine breathing clear breaths or being able to laugh without having a coughing attack. It would be weird to actually be hungry and able to hold onto my Continue Reading »

Evaluation is Scheduled

I just got word a little bit ago that I will go straight to transplant evaluation which will be the week of July 22. Transplant evaluation is basically a week of intense testing to make sure my body is healthy enough for transplant, but not too Continue Reading »

Health Update

“Alright.. so the IV Levofloxacin seemed to kind of work, but then I went downhill and got worse in other ways. My fevers never disappeared and I’ve still always felt sick. Continue Reading »

Health Update

”I got to escape the hospital March 22 to go see Tori Kelly - Thank You Do It For The Love! We got to have tea with her and Alex and I got to go to our first concert together as a couple. I also got to finally meet Kamari. The next day I got to Continue Reading »

Health Update

“Left the hospital last month and about six days later I was really sick, couldn’t really do much of anything and throwing up daily from coughing. I went on an antibiotic and still had tachycardia and felt like I also needed oxygen. Continue Reading »

Health Update

“Update: On my birthday I was admitted to the hospital for lung infections that were not responding to my regular iv and oral antibiotics anymore.  Continue Reading »

Health Update

“I think I might have a virus or I just need ivs again. My body is having all sorts of problems. Rapid flu test was negative (didn’t test for other viruses). UA was once again decent but not amazing. We’re assuming I have BV from the weeks of Continue Reading »

Health Update

“Stopped the Meropenem, so I’ve been iv antibiotic free for about a week. I’m still taking oral Minocycline. I was too tired to continue iv antibiotics. Had some chills last night and felt kind of feverish and of course my body is still Continue Reading »

Health Update

“Cefepime hasn’t been working as well as it used to, and I’m not feeling great. If I stopped ivs Friday as planned I would likely be sicker on Christmas unable to get iv supplies or reach my normal doctors. Therefore, I have discontinued Continue Reading »

Health Update

“I got my liquid tobi and ended iv cefepime last week (staying on oral minocycline). Ever since I started Tobi I’ve been coughing a lot more and feeling kind of sick in general but I wasn’t sure if that’s because I stopped iv antibiotics and Continue Reading »

2018

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Health Update

Written by Sara: Continue Reading »