HOME and first infection

http://www.COTAforErika.com

https://bonfire.com/erikas-new-lungs/

We have good news and bad news.. the good news is that Erika is HOME! After a little more than 3 months of recovering in Seattle, Erika and her mom Audrey have finally made it home safe and sound! They’ve actually been home for a little over two weeks now, but have been taking it easy and trying to settle back in.

Erika will continue to monitor her lung function and vital signs daily to track signs of infection or rejection. She will also continue to visit with the UW transplant team frequently and will be making regular trips to Seattle. Soon she will also be starting to see her pulmonologist in Spokane again to keep an extra set of eyes on everything.

Now for the bad.. unfortunately after only a few days of being home, Erika contracted an infection. It came on suddenly, without warning, and was scary.

Erika started feeling very cold at about 11pm and spent all night shivering and sweating. It turns out she had a fever of 101.9. At 7am Erika’s mom contacted the UW team and they asked many questions about symptoms and vital signs. They advised taking Tylenol every 4-6 hours (which she already takes for pain) and seeing her primary care doctor in Lewiston. By the time Audrey got Erika to the doctor at 10am she could barely walk and had a headache so bad she could hardly keep her eyes open. Her blood pressure at the doctor had dropped to a dangerously low level and her heart rate was double what her normal resting heart rate is. The doctor said to go straight to the ER, for fear that this could be a very serious infection (she was highly concerned about sepsis).

Going to the Emergency Room is scary for anyone. It has always been especially difficult for Erika due to her complex medical history. In the past she’s felt like she’s treated like a science experiment there, as so many of the nurses and doctors are so enthralled to work with a Cystic Fibrosis patient but have limited knowledge of the disease. This time was scarier because we had no clue what was wrong, what was causing it, and what the steps would be to fix it. Having Erika’s CF team in Spokane used to feel so far away during times like these, and Seattle feels much further.

As a recent lung transplant recipient things are just so much more complicated. We did not feel comfortable allowing the local doctors to make any medical decisions without consulting the transplant team (beyond testing to collect more information). They ran a myriad of tests including a urine sample, chest X-ray, EKG, full blood panel, and blood culture. By this point Erika’s fever was coming down to about 99.5 and she was feeling slightly better. She declined additional pain medicine through her IV, but was given fluids and an antibiotic.

The tests results ruled out sepsis, but the X-ray was showing the possibility of pneumonia in the lower left lung. The doctor in the ER was consulting other doctors in the hospital and was debating between admitting Erika to the hospital or getting her to Spokane (via air transport or ambulance) so she could receive a higher level of care. Again, very scary stuff.

After several hours in the ER and multiple exchanges with UW, the transplant doctor on call decided that since Erikas vitals were improving, she could be sent home on an oral antibiotic, but needed to come back if her temperature rose again or her blood pressure dropped any more.

Unfortunately, most of the tests came back without a clear diagnosis. Luckily, the broad spectrum oral antibiotic seemed to do the trick. This illness took a lot out of Erika, and she was exhausted for over an entire week before starting to feel like herself again. This showed us the harsh reality of immunosupression and just how quickly and strongly an illness can come on out of no where. Erika had been wearing her mask when necessary, frequently washing her hands, and had not been around any sick people.

Now that Erika is back home in Lewiston, she will likely be doing much more. If you are around Erika please remember to thoroughly wash your hands before greeting her, and if you are not feeling well or have been in close proximity to a sick person recently please reschedule your visit with her.

Photo taken on one of our last walks in Seattle.

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