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“My double lung transplant journey… over the last 9 years!!”

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If you didn’t know already, we know some pretty incredible youth on Upopolis.

Just when you think you’re having a hard day, you hear about the incredible journeys these youth have been through and then you think, “If they can go through challenges like these, then I can get through my day.” The most amazing part? They have been through some really intense experiences and have come out of them stronger and smarter. They are some of the most compassionate, insightful, empathetic and brilliant youth we know.

In honour of National Tell a Story day on April 27th, we invited one youth in particular, Tahlia, to share her story with us about her double lung transplant through the COVID-19 pandemic. We featured her on our social media pages for our #UpopolisUser spotlight, a monthly showcase of the awesome youth on our website, and now, we get to hear the rest of her powerful journey. Read below!

“I was diagnosed with pulmonary hypertension (PH) and 2 ASDs/holes in my heart at the age of 6 turning 7. I was recommended to come to [a city half way across the country] by another family with a kid with PH because there are specialists there that provide better care. My health was doing really well for 9 years, which is impressive for PH as it does go undiagnosed/misdiagnosed as asthma and at that point is difficult to treat.

In 2019 my health took a turn and I was put on a subcutaneous pump 24/7 hoping it would give me some more time. Sadly it didn’t do anything for me. I was a bit disappointed because they told me I’d have more energy to do the things I loved, but it actually took it away because I was told I wasn’t allowed to do them anymore. In September 2019 my PH specialist recommended that we look into a double lung transplant and that I get assessed for transplant. In January 2020 we made a week trip back [across the country] to get assessed for a double lung transplant.

In February 2020 we found out I was eligible for transplant and was told to be ready for May 1st. Due to COVID, though, my transplant was put on hold.

Now was the waiting game for another call for transplant.

We waited until November 13, 2020 and that was the day we got the call! But transplant didn’t happen until November 16. The day I got the call for transplant I was full of mixed emotions because I wasn’t quite prepared. I had nothing packed, I was stressed because I didn’t really know what to expect but then when I found out I was still waiting. It caused more reactions because we thought it might not happen, but it did!

I was in the intensive care unit (ICU) for 2 weeks because they thought I could have possibly caught something, and I almost had to be put back on a ventilator.

After 2 weeks in ICU I was sent to the ward to do physiotherapy every day. I was trying to gain leg strength, but due to having been in the ICU for 2 weeks my legs were not as strong as they would have liked. They sent me to a rehabilitation center for 2 months to strengthen my legs. They got pretty strong really quickly!

Here we are now getting ready to go back home at the beginning of June 2021. Getting the transplant was a miracle. It changed my life forever. I was able to do the things I loved like singing and dancing again. It was a huge step forward because before transplant it was very difficult to do without running out of breath or being in pain. Now I’m able to do all that without suffering and I’m finally able to enjoy it.

On Upopolis I feel like they’re my second family! There’s kids dealing with similar challenges as me! I really enjoy making new friends on Upopolis and all the game nights. “

Editor’s note: Identifying information about where Tahlia’s healthcare took place has been removed for confidentiality/privacy reasons.

Definitions

Pulmonary hypertension: increased blood pressure in the lungs

ASD (atrial septal defect): a hole in the wall between two areas of the heart

Subcutaneous pump 24/7: a small machine that gives the body medicine all day and night to help with pulmonary hypertension and ASD

Double lung transplant: doctors remove both lungs, one at a time while the body is asleep, and puts new ones in. This usually takes between 6 – 8 hours.

Intensive care unit: an area of the hospital where patients receive healthcare from a nurse that is dedicated to them. In other areas, nurses can have 2 – 4 patients.

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