Help Rebecca's Fight Against PAH

I'm Rebecca and this is my story..

It started in December 2023, I was referred by my doctor to go to USC for other specialists I couldn't find in Vegas. Upon arrival, I was deemed unstable and immediately admitted. I was in the ICU for 5 days, with no insurance, they did what they had to do and released me. I was diagnosed with a rare heart and lung condition called Pulmonary Arterial Hypertension with a PFO (hole in my heart.)

As most of you are also aware of my intense allergies; to no surprise, I started treatment and well .. I was allergic to all medications offered. I was released with an oxygen tank, not suited for my needs, but it was something. This disease isn't curable, but is manageable with treatment.

I saw tons of herbal remedies that gave people treatment and long healthy lives! It was the way to go! But, life doesn't stop even if you need it to.. so I did my best, got insurance, made life changes, and went back to work using my O2 tank as much as it could keep up. But... Could I keep up?

On June 3rd of 2024 I went to a follow up appointment with the only specialist in Las Vegas that could even remotely understand my condition. With new symptoms, he sent me to the ER at St. Rose hospital where I stayed in the CDU for 7 days.

My specialist pushed and pushed for me to go back to USC. I fought them, hard. I didn't want to go through thr same guinea pig feeling again. I'm allergic, end of story! Unfortunately I had more about my body I needed to deal with. I was ready to be discharged and go to Washington for treatment and to live life.

The disease was progressing. FAST.

I told the doctors my plan. I wanted to be released so I could move to Washington in the next couple months.

My doctor finally snapped at me..

"I don't think you will live 2 more months. You're not going to make it there."

Oh.

What you all didn't know is that this disease is terminal comparable to cancer.

I wasn't fighting them anymore. I was dying.

Fine. I'll go to USC.

One of the best PAH specialists in the country heard about my case and took it.

June 10th of 2024 I was transferred to the cardiology and pulmonology ICU at USC. Upon arrival, I went through the same tests. But this time.. I was told I was in right heart failure. At any moment, my heart could fail or I could suffocate. I stubbornly refused treatment. If I was going to die, let me die without suffering through allergic reactions or debilitating side effects from the medications I've heard of. I was told I'd be sent back to Las Vegas, with no option of discharge due to instability. I was going to be held basically until I died in the hospital.

It's now day 20 of being in the ICU here in California. Although this has been the craziest rollercoaster I've ever been on, I suffered along the way.

BUT

I am on treatment. With NO ALLERGIC REACTIONS! She listened to me. She compounded medications to work for me. She gave me my life back. To think I might not have made it to this day originally if I didn't try.

This cannot continue in Vegas. There is no treatment there. I need to get to Washington, but I do need help.

I understand it's a hard place for everyone right now.

Thank you