Episode 30 Get Inspired with Chetan

 

I am super excited about this month’s guest. I met him when I first landed in town at an Arizona Hemophilia Association event. He is a student and has a brain that won’t quit. He is one of the wisest people I know and constantly inspires me with his insight and enthusiasm for life. He makes a positive impact on all who are lucky to meet him and I am counting myself as one of the lucky ones.

 

Rick and Morty breakdown by Wisecrack

National Youth Leadership Institute – NYLI

Arizona Hemophilia Association

Pranayama Exercises and Poses

Unnati Compassion

Unnati Farms

Jainism

 

Have a question for Chetan?

cbafna@email.arizona.edu

 

Hemos Unite Podcast Episode 29 Keep Learning

Hello everybody. First, let me just say my heart is with you Houston.  I am assuming that the foundation there will be needing some assistance so this month’s donation from HU will be going to the NHF Relief Fund.

I can’t donate a lot but I always try to donate where I can. Every dollar makes a difference. Stay strong everybody, as you know everything in life is temporary. That may not seem helpful when things are so bad, but if it helps to remember that, then it helps. 

This month I’ve also been thinking about an Instagram post from istrive2thrive. He has a picture of a bruise from a poke from a phlebotomist. The phlebotomist didn’t comply to his request for a higher gauge needle and he ended up bruised, swollen and bleeding.

This reminded me that we need to learn our lessons, share our stories and stick to our guns. It also brought back some real life education I have learned in our hemophilia journey. I wanted to share two personal stories about how I learned to push for what I want. 

These are my experiences, but if some of you are going through something similar, I thought maybe you could benefit from hearing some of our story. One of the stories is written below. Both of the stories are in the podcast.

When I was brand new and freshly inducted into the Hemo Hana, we were on an important study. After it was over, I was put on a factor.  For years everything seemed fine. But as my little boy grew, the factor didn’t seem to be working as well as it once did. His legs were covered in massive bruises, almost always. I kept being told that bruises are normal for kids, but looking around the playground, they did not seem too normal, even for a Hemo Kid.

By that time I had done my research and requested to switch medications. At first I was told to increase the dose or change the factor schedule and I did go along with that. I knew in my heart that wasn’t what I wanted to do.  Buy, logically, why wouldn’t we try that first? 

Over  six months, to a year I repeatedly asked for a specific medication and was not ever given the prescription that I wanted. With each visit or email or phone call I would request information on a new medication, or an outright switch. Each time the subject was broached, I decided not to fight for it and to just try again when I would call back in another month. 

As luck would have it, I decided to move. Landing in my new town with a new doctor I was extremely adamant on the new product that I wanted. We finally got our new product and it was incredible. I immediately  saw a difference. There were no hematomas covering my kid I could actually see his legs again. It was such a drastic difference I was shocked.

Then, I immediately kicked myself for not being more firm and getting the meds switched. Hindsight is always 20/20 but my kid have could have been bruise freer for a year earlier, had I just pushed a little bit harder.

So in relating that story the only thing that I am trying to convey is that for me personally switching or changing something in my son’s care ended up having a hugely beneficial result. I encourage you all to do your due diligence do your research and then really put your HTC team to task as a partner in the care you receive.

You along with your team your medical team are exactly that: a team. If something doesn’t jive with you then you need to push get the answers that you want and keep asking questions until you’re satisfied that you have exhausted everything.

There are a lot of choices out there and I know that insurance is being really funky lately but if your decision that you made five, six, ten years ago isn’t working, there is no harm in doing more research into something else. Whether it be a new product or a new regimen.  Things change and I think that we sometimes get a little complacent in our care.

You all know your body, or your kids body, if they’re younger.  Don’t be afraid to ask for what you want.

Make sure that you also document everything. I’ll give you what I do which is pretty basic.  When I started asking for the new Factor, every single nose bleed, every single incident at school it’s all in my yearly calendar. It is a old school 99 cent store weekly planner and it has every single thing I need. It’s where I record all of the school meetings that we’ve had and everything that pertains to my son’s health. Personally, I find it more accessible and easier to search because I am so used to my paper planner. I realize that there are tons of apps out there that will probably do the same thing and if you are an app person then please start utilizing your app to it’s fullest potential.

And there you go. For our other lesson about professionals who poke, listen to the pod 🙂

If you’re in Tucson, I would love to meet you I’ll be at the annual meeting make sure that you stop by and say hi.

Thanks you all! Have a wonderful day.

Mentioned in the Pod:

NHF Disaster Relief Fund

istrive2thrive

VWD Summit in Peoria, AZ Sat. Sept. 23, 2017

bleedingdisorders.com

Podcast Episode 28 Meet Cassandra

 

Hemos Unite is proud to host another incredible guest who is proving that you can live a rich, fulfilling life with a rare blood disorder. I feel so lucky that we have such empowering people in our community.

Meet Cassandra, an accomplished woman in Southern Arizona who is speaking about her Glanzmann Thrombasthenia  in an effort to educate more people about bleeding disorders. While GT is extremely rare (roughly 300 people according to NORD), it is a blood disorder that is related to Hemophilia, Bernard-Soulier, Storage Pool Disease, and May-Hegglin.

Cassandra has some great ideas about using her love of the arts to promote education and is willing to give her time and energy to answer questions. I hope you enjoy getting to know her and will reach out with any ideas you may have to make an impact in your community. Brainstorming with other members of the community benefits everyone.

 

David Wilcox Medical College of Wisconsin

Dr. Danielle Nance

Arizona Hemophilia Alliance

Hirudoid

Stop The Bleeding!

 

Chat with Cassandra:

Facebook

LinkedIn

email

Podcast Episode 27 Jessica From AZ

I met Jessica at an Arizona Hemophilia Association in the first month that we landed in Tucson. She worked for industry at the time and she was just so genuine, we instantly connected. She knows so many people in the community, it has been wonderful knowing I can call on her to introduce me to people or help me find a resource.

I personally like it when Hemo moms or Hemophiliacs work in industry. They get me. I am savvy enough to separate what they do for a living from who they are as a member of the community. I know there are some bad apples out there. So when you can find someone you connect with, no matter who they work for, try to work on the relationship because you never know when the people that cross your path are there for a reason.

Many of the moms that work in industry are some of my closest friends. As we are making decisions for our kids, we take in all the information from the HTC, our friends, family and other moms, but the ultimate decision is with the parent. I was always second guessing myself in the beginning. Thankfully, there is a great network for moms to rely on. Make sure you have a good group of experienced moms in your Hemo Tribe. Jess is part of my tribe.

Jessica is a great resource for you if you have questions or just want to have someone who will listen to you without any judgment. I am not on service with her and wanted you to know that I strive to bring you people and information that have helped me in my journey, no matter what they do for a living.

We talk tips and tricks, her Hemophilia journey and the lessons we have learned along the way. We both do not see Hemophilia as a negative aspect, just a fact of life. Focusing on the positive aspects of the disorder – the empowerment from being able to stand up for your kids, the friends that we would never have made, the resilience that the kids build

 

Hemophilia Logs

MicroHealth always do your due diligence and figure out what works for you

Infusion Boot Camp

 

Contact Jessica:

Facebook is preferred method

email her

 

AZ connections:

Cascade Foundation – RSVP for Back To School 7/22

Arizona Hemophilia Association – RSVP for Annual Meeting in Tucson

 

CA Connections:

Hemophilia Alliance of Orange County – RSVP for the 3rd Annual Surf Event!

Heather – RSVP for Dinner on the 19th at Ralph Brennan’s Kitchen

 

Meet Your New Swim Coach

Hello Bleeders!

We have added a new column to Hemos Unite! Introducing (again, if you follow the podcasts) one of my BFFs (thank you Hemophilia, I never would have met this amazing woman otherwise) HEATHER to the HU site.

She will be contributing to the site to inspire you to gain confidence in and out of the water. So, here is the Awesome Heather talking about how she combines two of her passions, swimming and working with bleeding disorders:

I am a swimmer.  I began swimming around the age of two as my physical therapy.  I was born with hip dysplasia and had three surgeries before the age of two to correct this.  The doctors told my parents that swimming would be the best for me.  I became a competitive swimmer during grade school.  I raced up through high school then took a 20+ year break to have my children.  I came back to competitive swimming six years ago.

I am an advocate for those with bleeding disorders.  Welcome to my world of bleeding disorders, introduction from my son, born Feb. 2003.  You can listen to my podcast about becoming part of the bleeding disorder community here.  I have found this to be the most loving and close knit community, and wouldn’t change being here for anything.

Both my son and my swimming made me a stronger person.  Stronger both mentally and physically.  Both made me a better person, more true to myself; one who follows her passions and does what is right in her heart.  The leaps and bonds I have made in the past years because of my son and swimming make me who I am today.

So here is my blog.  I want to share my love of swimming and my love of the bleeding disorders community with you.  I want to share how these have made me grow.  I want to share a wonderful way to combine the two.

As a side note to each monthly blog, I will do a little update on the happenings in the swimming and hemophilia world in Southern California.

June 2nd-4th, Family Retreat…So Cal Chapter

Oct. 8th, Long Beach Marathon…So Cal Chapter

See you in the water,

Heather

Check out the Shire CoPay Assistance Program: hematologysupport.com

Hemos Unite Podcast Episode 25 Dan The Man

Dan and I are virtual buddies. We met through Facebook a couple of years ago and have attempted a podcast before. Our first try, we ended up chatting for almost 4 hours about everything under the sun. I was just fascinated about the exciting life he has created for himself.

Dan is from the States and moved to Japan several years ago. He is a soccer correspondent, amazing photographer, mosh pitter, and soon to married (yay!) with a witty and intelligent mind.

On today’s podcast, we chatted about the difference in Japanese and American bleeding disorder cultures, new drug trial and possible outcomes of the communities with all the potential of the new drugs and treatments on the horizon.

As a mom, I listened to him, and hoped that my son would have as much confidence and independence one day. As a friend, I listened to him and was grateful that we were brought together through our experiences with Hemophilia.

You can find Dan here:

Dan on Twitter

Dan’s Soccer Twitter

Big thanks to you, Dan. You are always such a joy to speak with. One of these days we will need to meet in person and raise a glass.  Looking forward to our next update.

Thanks again to Shire for sponsoring the podcast. If you want more information about the Co-Pay Assistance Program, go to HematologySupport.com

We’re Back! Season Two Starts Off With #Hemolife L.A. Aguayo Episode 24

 

Edited Thumbnail for youtube LA Aguayo

Boom Baby! We’re back with an awesome guest. This guy has an amazing story and after you listen to this podcast, make sure you go get the full experience and subscribe to his YouTube channel.

L.A. Aguayo has Hemophilia B and has overcome some dark days to emerge as a leader, inspiration, and role model for our community.  We talk Tinder, Gary Vee, Supplements, and YouTube on Episode 24.

It was truly an honor to have him on the podcast anda great way to kick off Season Two. Remember to subscribe via the annoying pop ups or the Hello Bar at the top of this page to get notified of the next podcast and to the Hemos Unite Playlist on YouTube for general Hemo Stuff happening in our little corner of the Hemo World.

Find L.A. Here:

Personal Facebook

Athlete Facebook

YouTube

Instagram

Email

Get Hemolife swag!!!

Send me some comments, I love to hear your stories and suggestions!

Episode 23 The AMAZING Amberly

@hemosunite (2)

You are going to fall in love with this amazing lady. Her hemophilia story is one that has changed so much from finding out the diagnosis and how it is managed today, you will love the growth and it will inspire you to take control of your situation.  She is amazing, inspiring, funny, smart and I am so thankful that hemophilia allowed me to meet her. You will learn some great life tips from listening to her on this pod.

She is inspiring as a business woman as well. She is the VP of Aida Cosmetics, which I now love – do you want to know why? Beacuse they help our community by teaming up and trying to help raise awareness for our community and their stuff looks AWESOME.

My favorite thing about Amberly is her outlook on life.  She thinks  so positively and you can just tell that she is a happy, aware, confident awesome lady.  She truly makes a concious effort to conquer the obstacles that are thrown at her. I just love her…have I said that already? She urges all new moms, everyone actually, to do your research, ask questions, make sure you are always learning and taking charge of your own life.  I know you will enjoy this pod and please leave a comment below to let us know how much!!!

Remeber to let me know if you will be joining us for dinner and some Hemo education at Roys in Pasadena on August 9th.

Links mentioned in pod:

Access Health Association 

Sweet Hill Cookies

Amberly’s Instagram

AidaCosmetics.com 

Chat with Amberly:

Amberly’s Instagram

viamberly@gmail.com

 

 

 

Episode 22 Renaissance Man Josh

I met Josh last year through Facebook and are working on a nice little friendship. He is quite possibly one of the nicest people I have ever met. He is so kind and knowledgeable and willing to give of his time and energy. He and his wife are very special people in my eyes. I gotta get her on the pod, by the way – she is a firecracker. Hi E!

josh episode 22

Josh was born in 81 is a a Severe A Hemophiliac. He lives life to the fullest every day. He has many hobbies, reptiles, snakes in particular, electronics, fire dancing, cars and the list goes on. Through his experience with his hobbies, he gives back to our community.  There is a deep wisdom that someone so young is in possession of.  I love it when he talks about what fear stems from when we are talking about the educational shows he does with snakes.

Bleeding Disorder Foundation of Washington

Camp I-Vy

Contact Josh:

His Facebook

or email Joah at pythonjosh@gmail.com