Compassionate Care Conference 2017

I know my posts have been sparse on my blog for things in my life other than lessons directed at my health or health events.  This update is not directly related to my health, but about an exciting event to me.  This blog I want to explain the reason I started this blog.

I started this blog because I have a story different from most of my age peers. I never understood why I felt the need to cover up exactly how I feel or that my stories that might be too much for others to handle. I always felt that I needed to prove something to everyone else that I was “normal.” It wasn’t until the prednisone overdose that I became comfortable to lay it all out there.  During my journey, I have met many others like me.  Like them, I never in my life thought I’d be a sick adult. The biggest thing I thought was that I would only have congenital heart defect/disease. If I only had CHD, I would be ruling the world. Yes, I have a very serious heart defect and will always have issues due to it, but the combination makes CHD look like cake.

I have met hundreds with CHD, but only a handful with serious secondary diseases like mine and I finally have a place to go to be with others like me. We don’t just have one life-threatening defect or disease, but many. I can not tell you how much I used to spend crying and worrying about my CHD.  I wish I could go back to just CHD. Last year when I started to tell my story, Dr. Sine asked me if I would be interested in doing a panel at the 8th annual Palliative Care Summit, and the Coalition for Compassionate Care of California; AKA CCCC. I thought, why not? The conference and the people I met there once again changed my life. I finally belonged somewhere. Those who were at the Summit understood me and I met the sweetest little girl there that has multiple life threatening diseases. There I was given my voice back, the one I lost many years ago.

In March, the 9th Annual Summit was held in Sacramento.  I got to see my long lost twin whom I met many months ago.  He lives in Philadelphia, is a young adult, and is a survivor of brain cancer. Charlie doesn’t have multiple illnesses like Marla Jan and I, but we got to do a question and answer panel and we made a killer team.

Charlie and I have very different diseases and are at different stages of life, but we had three things in common. 1) We both attend Arizona State University; 2) We have a special power; and 3) We are young adults getting our life back.  I know I will get sick again, and possibly get a new diagnosis, and I will have to rebuild my new normal once again.  But while on the dais, telling our stories and sharing views on doctors, nurses, social workers, and parents, I was Rachael again.  I survived to tell my story, I felt like there is nothing in this world that could stop me.

Marla Jan is a beautiful vivacious women and my hero – she is the ultimate fighter. She has my heart disease, and multiple auto-immune disease.  She has also survived breast and is now doing Chemo to treat her lupus. When we met, I can’t tell you how much I felt as if I was looking in the mirror. Her strength is unparalleled and her courage would challenge Navy Seals. She gave me different perspective.  Despite all her challenges, she is also a pediatric critical care nurse and  a full-time patient like me. I talked to her about the pediatric nurses and doctors fighting us when we go inpatient because they are terrified to treat young adults with pediatric diseases.

Marla Jan, Charlie and me have gone or are going through the transition from pediatrics to the adult world all agreed that there is no way to do it without serious consequences, in each of our cases, almost fatal ones.  When first entering adult medicine, we each got lost and have had to find our way back to hybrid care. None of us think it is sustainable.

What I took away from this conference is that we do have a community for us, its small, but we have a voice from very caring people. After the panel, we sat around with a team involved with the CCCC and we talked about the right and wrong way of dealing with our issues. The truth is that we are still learning how to handle everything that comes with our diseases.

The professionals were very intrigued with my dad’s view on it as he is a senior executive at a children’s health system.  He discussed the challenges and the unfortunate economic realities of young adult and transitional care.  Now that we have this CCCC community, its easier to put our heads together and work towards solutions.  We all knowthere is no easy way to transition and that we cannot afford medical mistakes because of fragile health.

I am so blessed to have had this opportunity and so excited to continue to speak for us -1%er’s.  I wanted the audience understand that we each unique; you will never see two cases the same.  Do not treat us like just like another heart, transplant, cancer, or immune patient.. Don’t tell me you had a case like me or Marla Jan or Charlie because you haven’t.  Our surgeries, complications, medications, scar tissue and damage has made us unique. Treat us like you have never saw this disease in your life – if you listen to our stories first, you will.

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