In Loving Memory of Roné Uren

February 27,2019

Roné was diagnosed with pulmonary hypertension (PH) in March 2012. She had symptoms of fatigue, shortness breath, and increased heart rate that was about 114bmp.

She was prescribed Revatio, which improved her mobility a bit, but not too much. She was also prescribed high doses of diuretics to help her liver and heart cope. Later, her body got used the drugs, so she needed higher dosages. She was going nowhere slowly.

She went into the hospital to receive a new drug called Tracleer. This was a wonder drug, but it was also very expensive, so it took some time to get it authorized through the medical insurer. Once on this Section 21 drug, she was doing really well for a year or two.

Then she started to show signs of weakness again. Her body started getting used to the medication. PH is not a disease that can be stopped or slowed down for too long. It progresses daily.

We were then faced with a lung workup and the possibility of her needing a lung transplant in the future.

We were introduced to the new Section 21 drug called Iloprost, which entailed a procedure to have a CT port put into her chest, which would be connected directly to her heart to deliver the Iloprost.

This medicine is mixed with saline and must be administered 24/7 through a cadd solis infusion pump. The dosages were worked out according to weight and need for her body.

This improved her six-minute walk test from 280m to 530m without oxygen. This was the wonder drug we had been waiting for. Yes, there were side-effects of the medication, but none were fatal. She was on the Iloprost for a little over two years, but the disease progressed quickly, and her health changed dramatically.

She was admitted to the hospital twice for right heart failure in 2017. This was when we realized that the lung transplant needed to come sooner than expected.

She got a call on her birthday. They had lungs for her, but it was not to be as the donor lungs were not good enough. We received another call on the February 18, 2018. They had new lungs, which were even better than the previous ones.

After a long day of waiting for her in the operating room, she was rolled out to her room in CT-ICU on more machines than one could imagine. She gained strength and started to recover beautifully.

But as this illness is, it claimed her life on the March 4, 2018. The lung transplant was a success, but she sadly passed away from other complications.

She will be remembered for her beautiful nature and the way she was always smiling, even in difficult times.

She is always loved, but never forgotten.

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