Our forum is blooming:Welcome new members!

[jen-cueva]

I’ll start by sharing a little about some of our newest members.

@Blue says, “Caregiver for my wife Jen.

We see one of the best docs at tufts medical center, Nicholas Hill/he’s awesome!

Looking into starting winrevair soon. I’ll post up info when I know more.

Steve”

[jen-cueva]

Welcome aboard,new member @Kinsey !
She shares, “Hello there! Yes, you can call me Patrice. After all the missed diagnoses. I was diagnosed with PAH. I made so many trips to the emergency room.l, It was written on my chart it was in my head. Right now a lot is going on in my body. Many tests are being preformed because my breathing has changed. I am on medication for PAH. I’ve been diagnosed with it 3years ago. I am always tired. But I push through. I see Dr. Amalouf, Who is apart of Karen Fagan department. I have a love for art. I draw, paint, make cards at Christmas for friends and family,occasionally Jewelry making, wooden puzzles, adult coloring books, cryptogram puzzles. I have mobility problems, but thank God for these crafts.”

[jen-cueva]

Another new member, @BreathtakingAwareness, aka Jolie, shares with us her awesome work in advocacy. 💜

Jolie shares,

“Thank your for the kind welcome. I genuinely appreciate you taking the time to see a bit about the advocacy I’ve done, and for the praise. I don’t get much feedback, but I continue on. I figure that if I can help one person then three decades of advocacy will have all been worth it.

I’ve done many things for advocacy that I have not made public. For no particular reason really. I hope to share more soon. I will tell you something very exciting! I was asked to sit at a round table at the World EMS Expo with a PH doctor & 2 PH nurses, a paramedic, someone with experience of writing medical laws, and a stenographer. We wrote EMS guidelines for PAH patients! They will hopefully be sent in and finalized by the end of the year. I haven’t said much about this, but I really should tell others. I just don’t EVER want anything to come across as “hey look at me”. That is really the only reason that I can think of why I haven’t posted things I’ve done over the years. Silly perhaps, but I want to help people and not turn them off in any way.

I received PH care at Ochsner for 10 years. I am transitioning to University Medical Center (UMC). I have a changed all of my care to UMC. There is a comprehensive PH center there. I will have a cardiologist, pulmonologist, rheumatologist, hematologist & more that work closely together. I will even have someone that can help me with a diet and exercise routine. I am more than a little excited! LOL It has been a struggle to find a rheumatologist that agrees with my PH doctors. I have a form of scleroderma that has yet to be identified. I was first told this by Dr. Leslie Saketkoo. She is World renown. She is an AMAZING doctor. I waited, we all did, for 4 hours or so past our time to get in to see her. After you meet her, no one ever complains! Sadly, she is doing grander things and is a consulting physician locally. It took a long time to find someone to treat me for it. This doctor says there is no doubt, I have scleroderma. I’ve only just admitted that to myself. 9 years after I was told. All of this, PH and comorbidities, is just so much to handle and process. I hope am confident that the doctors at UMC will treat me for it. My PH there is treating me for it at this time.

What type of doctors do you see for PH? How did you get started with moderating? Do you work at BioNews? I’ve stayed away from many PH sites due to a heartbreaking experience which I think I finally, 9 years later posted about on the blog of my website.

I hope to live up to your praise! : ) Thank you again for your kindness. If there is anything I can do for you or if you’d like to chat about anything, I’d be more than happy to talk in any fashion.

Truly,

Jolie Lizana

[Carol Volckmann]

Hello Jolie. Like you and many others, it took years to be diagnosed with PAH. I then learned I also have Scleroderma and come to find out the Scleroderma caused my PAH.

I was able to finally find the right team – Cardiologist, Pulmonologist who specializes in PH/PAH and a Rheumatologist specializing in Scleroderma and works closely with my Pulmonologist. That is so important.

My PAH has been stable on the meds: IV Trespostinol (Remodulin), Ambersentin and Tadalifil, the Scleroderma has recently in the last couple of years caused more medical problems than my PAH.

It is so crucial to have the right team backing you up.

I do not know what forum you were on that turned you off, I can tell you this forum has been unbelievably supportive, informative, non-judgmental and so caring!! I am so glad you found Jen and Colleen – they make all the difference!

[BreathtakingAwareness]

Our journeys are similar for sure. I wish you ll the best with everything. Thank you for your kindness. I look forward to talking more in the near future.

[jen-cueva]

Hi, @Carol Volckmann, you are so kind and helpful. I know that @BreathtakingAwareness is also grateful for your words of encouragement and support.

This is WHY our forums are the best!💜