FAQ’s

Here are a lot of question’s I’ve been asked lately! You have a new one? Email me at haley.ann.92@gmail.com and I’ll try to get back to you!

rebel18

1. How old are you?

I am twenty-six years old.

2. When were you diagnosed?

After showing symptoms since eleven, I was diagnosed at eighteen.

3. What medication are you on?

Adcirca, Opsumit, and IV infusion Veletri.

 

4. Where are you located?

New Mexico.

5. How many doctors do you have?

I am a patient at the Pulmonary Hypertension program at UNM in Albuquerque.

6. What is your Insurance situation?

I turned 26 this year which means I would have lost my Blue Cross Blue Shield that is through my father, but the UNM PH team helped me petition to keep that insurance indefinitely because of my condition. YOU CAN DO THIS with your doctors help! I had no idea, but they wanted to do this which is great. I also am under New Mexico Medicaid.

7. Are you able to work out?

Somewhat! Dancing is my go-to, as well as yoga, tai chi, and Pilates. I also love hiking (slowly.) I have recently been lifting weights which I have to do carefully.

8. Do you collect anything?

Black cats, Tobacco pipes from Taos, Katchinas, art, and cute notecards.

 

9. Whats the biggest thing you struggle with when it comes to PH?

I’ve struggled a lot with anger, and paranoia. I also become very emotional around people who are having children – that too is difficult.

10. How are you able to live in high altitude?

I vacationed in New Mexico years before I was ever diagnosed. My mom and Dad would acclimate us properly the first two days – and I never had an issue with it. Now that my Pulmonary Hypertension has progressed, I can really feel the 9,000 feet. Not to the point I’m uncomfortable but just little things. I can go to Albuquerque and fly up those hospital stairs versus Red River where I would get huffy just getting around. I’ve moved to a lower altitude (only about 3,000 feet lower) but hey – I’ll take it.

11. Why did you stop blogging?

Quite frankly, I just wasn’t doing a good job anymore. I suffered an intense mental breakdown and change almost directly after the PH conference of ’14. I couldn’t find strength or focus to write about PH anymore, and I was just becoming sour in general. I took a huge step and decided to relocate which was the start of fixing a lot of damage. After a year in New Mexico, I still couldn’t get a grasp on my life or change my behavior. I was becoming tough to live with – for myself and other people. I couldn’t find an escape. I saw a therapist who was also a cancer survivor, and he diagnosed me with severe PTSD explaining what disease does to our brain. This was absolutely necessary and a life changing and much needed session. I was not fixed instantly, but it started a domino effect of clearing the clouds that surrounded my brain. It helped me understand my actions towards others, my readers, friends, family and myself.

12. What is different about your blog with a disease?

My blog started out as how to live with this disease in all aspects of your life. A disease is not contained to a hospital room – it bleeds into all areas of our life and I wanted to make sure my writing covered that. My blog was also a great tool at tracking my mental health – kind of like a diary – and unfortunately a blog is public. I got to really see where my breaking points were and what was happening with my brain – and phases of chronic illness I was dealing with at the time. I’m not proud – in fact sometimes I am very ashamed of this blog. It has been a learning tool. I started this when I was 19 – I was young and learning, and I was talking about what I was merely dealing with in stages of my disease.

13. What made you decide to transition to IV therapy – and how has it been?

After a very active summer (and some struggles) in September of ’16 I had my first heart cath in years since I was a new patient at UNM, and my doctor broke the news that the results were not good. It was time to start considering new therapies in which my stubbornness put a stop to. She prescribed a “last chance” pill – Uptravi – which I started in October. I endured horrible side effects in which I could barely function. In the meantime I felt extremely worse, but I was also working on a building to open my store. I kept myself distracted, but I went home every night and had my oxygen on my seven. Something had obviously changed. The day after Christmas, I was trying to climb a snowy hill with Rocco in my arms attempting to reach my ride. It reminded me of pre-diagnosis; stopping every five seconds, couldn’t catch my breath, and when I finally did reach the car the only words I could mutter out was “call the ambulance.” I passed out for a short amount and time, came to, and then I realized I had just had my first full on episode in YEARS. At the end of January 2017 – test results confirmed scary numbers. My heart function was at it’s lowest, I could barely get day to day things done, and I KNEW in my gut that if I didn’t do something within days that I would die. I just had a gut feeling I needed to do something quickly. The morning drive to admit myself to ICU we stopped at a gas station where I went in to use the bathroom. I almost passed out from that short walk. I knew I was making the right decision. I was the only floral shop in my tiny town who had already made Valentine advertisements, and taken pre orders – but I really needed to be in the hospital. It was a minimum seven day stay which I thought I could swing with work – So I was admitted February first. I was finally discharged February eleventh and with a new pump at my side – I busted those floral arrangements out. hahaha. Veletri within three weeks raised my heart function significantly, and while the side effects are not pleasant they were not nearly as unbearable as Uptravi. It has been a full year and half of adjusting. IV therapy is a big responsibility and it has taken some time and one line change to fully grasp taking care of my line, mixing cassettes in a bigger amount, and taking back up supplies everywhere. It hasn’t been easy, but I feel much much better.

 

 

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