Today we’d like to introduce you to Jaclyn Rose Pantino
Hi Jaclyn Rose, so excited to have you on the platform. So before we get into questions about your work-life, maybe you can bring our readers up to speed on your story and how you got to where you are today?
It took me a minute to accept that someone suggested me for this, to be thought of as hidden gem? How thoughtful and deep of a compliment. I was caught off guard to be thought in that light but it felt so good that someone saw my journey and felt something from it. It was a good pick me up to remind myself that I’m doing exactly what I am supposed to be doing.
I was diagnosed with endometriosis at 19 and found myself being treated as a lab rat most of my life from doctors. Staying quiet and suffering in silence most of the way. It was either they wanted to do every test possible unrelated towards my illness or they would simply tell me they couldn’t have “someone like me as a patient” meaning someone who has a complicated, lack of funding for education with no cure illness, like myself. You instantly feel like an outsider, deep inside there’s this deep dark feeling of loneliness, that you’re no longer relatable, and to know your back is going to be against the wall to fight for real help to stay alive and it’s gonna take time, knowledge, being aware and most importantly – my voice.
I came across a lot of monsters that called themselves doctors throughout my health journey but I’ll tell ya, I also came across the most amazing, life saving doctors and health care teams that put me back together. I am SO grateful for them. They gave me a chance at life. I’m in my 30’s now and it took a very long nightmare and a lot of research to find out the recipe to get better but Shoutout to Dr. Jeff Arrington, as well as The Center of Endometriosis Care in Atlanta and Cleveland Clinic in Weston, FL for helping me get there – they’re the real gems. Life savers.
It took 20 surgeries, 6 chemical treatments, 7 organs and losing myself over and over in ways I never deemed imaginable but to come out of it learning more about the other layers of me. These particular layers I never knew truly existed in me in such a way. This was a different kind of fire inside of my soul. This fire inside of me is how I am able to be here.
I wouldn’t be human if I didn’t say there was a lot of anger and sadness felt along the way but I let it essentially let it all make me better, not bitter. It kept me reading and educating myself on how do I survive? I refused the mentality of giving up, I never ever gave up. That’s what kept me here, it was my resilience. My refusal to give up. Lying on the bathroom floor green or not, I was going to win more life and that stayed my mentality.
Through the Journey I learned so much about the health care system and realized I was meant to be in the Patient Advocacy world. It means everything to me for someone to be given a real CHANCE at life when they are given options and to be able to understand to what it is they are really enduring health wise.
Patient Advocacy is someone to learn and lean on and go through it with you. The goal of the end result being finding a VOICE of their own when dealing with a chronic or terminal illness. Our voice is powerful. Our minds are powerful. We just have to give ourselves grace and a chance.
When just starting to find peace within myself, 2 months after my last surgery; My world came crashing down. My Mom was diagnosed with very late, end stage 5 kidney failure. Her Kidney right now is functioning at 9% and she’s in dire need of a Kidney Donor. It’s my mission and I’m focused to find one. I know there’s someone out there. A Hero.
I ran to get tested when we got the news, I went through all the testing while getting my mom on the transplant list within 5 months of diagnosis. I thought everything was aligned. “What was one more organ? I wasn’t scared.” In fact, it was all I wanted to do.
I know that sounds crazy after 20 surgeries but this was different, it was my choice for once. My thought process was to save my mom’s life? Absolutely, let’s go. I agreed to do an open right nephrectomy which they don’t really do too often anymore, it’s normally done laparoscopic and on the left side of the body, it was almost a yes until they realized my artery is half the size it should be, thankfully we have such an amazing transplant team to check these things out but I am now completely cancelled out to donate and now I’m on the hunt to find someone to help me save my mom’s life.
For me? I was ready to donate. Anyway, anyhow. I actually still grieve it. I mourn that I didn’t get a chance to do it. I cry about it and I’m not ashamed to admit it. I wanted it to be me and make it all go away.
Everything else wasn’t my choice through my own health journey, but this is all I wanted, to make my mom better and have more life together. My mom deserves the world, she has kept my head and heart held high through everything I’ve gone through and all I want is more time together. To keep watching the moon together. To keep making memories together, to more hugs and embraces and laughing with her til our belly hurts. I love her so much, I am hopeful a donor will come along soon.
I’m not able to donate but I am able to shout to the world my mom’s story and to get the word out to find a HERO and that’s exactly what I’ve been doing. I’m going to find my mom a Kidney Donor. A Hero.
I certified myself so my mom can have her dialysis done at home. She does 80 hours a week in 5 days to keep herself alive. I’m dedicated to making this work and keeping her head held high with hope and in between I’ve been trying to find a kidney donor, and educate those who think donation can only be done by direct donation. There’s actually so many ways to donate a kidney!
I was blown away at the different options in ways to donate! There’s direct donation, paired exchange and voucher. They say, “We were given a pair to Share.” I know I will find that hero for my mom, Dianne Pantino.
I created a Micro Site from the National Kidney Registry that within just a few clicks you can either choose to share to your social medias, learn more from direct reliable resources such as the NKR and even choose to apply to get your blood drawn to see if you could be eligible to donate, it’s really an amazing gift.
I also bought the domain: “HelpMyMomFindAKidney.com” just incase you can’t remember the micro site url, as well as creating a matching gmail and Instagram
“ @HelpMyMomFindaKidney”
I guess my story is a lot of survival mode but finding the beauty in the survival mode and recognizing what I gained from the pain. I thrived and absolutely blossomed in it. You know Tupac’s “The Rose that grew from concrete?” I feel very comfortable in my own skin from that poem. It fits my scars perfectly.
I’m sure it wasn’t obstacle-free, but would you say the journey has been fairly smooth so far?
There was a time I was losing myself so much due to not being able to get the right medical care, my illnesses had fully taken over and I was lost. It takes a toll on you. I didn’t even know who I was looking at anymore, I was deteriorating but I learned I won’t survive unless I find the beauty throughout pain. That the little strives matter.
I found in a notebook recently I had written how I was feeling in 2019:
“ My story isn’t sunshine, I have to be my own. The luminous of the moon, the strong ray of sun during the storm.”
Now anyone I meet with endometriosis, I pass on the recipe right away. The right doctors and resources. There’s a lot of misinformation out there which led me to my journey but NOW..
I am the healthiest I have ever been and I couldn’t be more grateful!! I just want to help and share this fire with anyone and everyone who needs it, including my mom.
I will always share my journey and how to get there! Gatekeeping the recipe to get better is ugly energy. Those kind of people can’t sit with me. Respectfully lol
Thanks for sharing that. So, maybe next you can tell us a bit more about your work?
During my journey, I have also been in the creative side of the world too and I have to say the portrait that was painted of me by Amar Stewart that represented our stories of health and fight is one of the most special things to look back on. It was about my soul, my fight, the relatability of not giving up and knowing what that REALLY takes. It’s a beautiful representation and full of a lot of emotion. Amar did a beautiful job. I couldn’t have envisioned anything more perfect. The best part was we donated all the proceeds to the Cancer Ward in London at Guy’s Hospital where Amar won his life back! The owner of the painting donated it to be on Display in the hospital! It was a dream come true for us! Amar and I would always discuss about how grey and depressing the walls can be, and we changed that! Now you walk by and see two survivors’ stories through ART! I hope as the different patient’s admire at the painting that they can feel more comfortable in their own skin and I hope they can recognize that the fire is also in their soul.
Are there any important lessons you’ve learned that you can share with us?
We all have a voice, we just haven’t as a society been given the chance to learn how to express it when it comes to our Healthcare, specifically. I think this is due to intimidation and fear. I believe that with Patient Advocacy being taken more seriously and becoming more effective it gives people a chance to wanna take on that thing or worry they’re afraid to say out loud, but now can move forward because they have someone who’s a professional, who has their back to help them understand the details of it all to make a decision for themselves – based on options and education.
Expression in medical settings are nerve wracking and being prepared by even taking little notes before you go, signs of symptoms, etc will help you get ahead and help you find your voice. We all deserve more life, more love, more everything and that’s my goal in my life, for myself, for you and for my mom.
I want us all to win ❤️
If you’re reading this and feel you want to know more about my mom’s story, please look at the links and share away!
And if you’re ever in need of endometriosis guidance, always feel free to contact me through DM. I’ll gladly forward you reliable resources.
@_longlashes
Thank you for seeing me as a hidden gem, I am deeply honored.
Love and Light x
Contact Info:
- Website: https://nkr.org/VLB367
- Instagram: _longlashes
- Facebook: Jaclyn Rose
- Other: https://www.HelpMyMomFindAKidney.com
Image Credits
“Lost for Words”
Painting By Amar Stewart
Waves of Healing collab with Mr. Dope Pic
