Updated: Jan 22
If you are interested in sharing, please contact Amie at SPKFDirector@yahoo.com
Welcome
This is where you can find first hand accounts of people dealing with Kidney Disease. People sharing their personal stories and their own journeys with challenges and triumphs!
These are opportunities for people to share and to see what people have accomplished and help support them in their journey.
These are PERSONAL STORIES, and the SPKF assists in sharing them without censoring content or overseeing your interactions should you choose to contact individuals independently.
The SPKF facilitates the sharing of these stories but is not accountable for any statements made. Please consult your doctors if you are experiencing ANY issues and before making any changes to your medical care.
Angel E - My Story
I am sharing a video of my Dialysis treatment and another one taken 4 months after my Transplantation to demonstrate that anything is possible with determination.
To contact Angel you can go to Instagram: Espi_El_coyote_
Hello my name is Jason and I wanted to share my journey with you, for one reason...there are other patients that are going through this same journey, that may have questions and/or concerns!
What makes me an advocate?
Well, let me share my journey and maybe I can answer some of those questions. Here goes...
In my journey I have been through...
-Esophagectomy (remove 2/3rds of my stomach and my esophagus, then stretched the remaining stomach up to make a new esophagus)
-Feeding tube for 4 mths
-Suicide attempts (7 times within 4 mths)
-Divorce (after 12 yrs of marriage and 2 months before Double Nephrectomy)
-Double Nephrectomy with Double Lung Collapse, 400 miles from home
-Dialysis (PD, In-Clinic Hemo, Home Hemo)
-Blood Pressure (Extremely high & Extremely low)
-Listed for transplant at 4 different locations in 2 states
-A kidney transplant (got my transplant on the 5th call)
-Death (3 times in 2 days - 30 sec, 53 sec, and 93 sec)
Everything but the divorce, of course, I did 100% by myself, because I felt like I was a burden and nobody really wanted to help like they said they wanted to or would. This got me thinking, while in the hospital after transplant, why am I even still here? The only thing I could come up with is, TO HELP OTHERS THROUGH THEIR JOURNEY!!! Since then working with my dialysis team, transplant team and my Nephrologist, I have become a Patient Advocate. Please feel free to reach out any time if you need to talk, vent or need some advice...I'M HERE and my services will always be free of charge and confidential, just private message me, text, or even call! What I would say at this point, to anyone going through this journey is KEEP GOING, don't give up! You have purpose too...I am never here to judge, nobody knows the struggles we go through as kidney patients. If they could see our problems and our pain, it might be different, but what we get is, "You don't look sick." or " You are looking so good." yeah, but they don't see the work we put in to "look good" while fighting our own bodies just to stay alive!
For the families and caregivers...please be patient and please help your person through this. Our bodies get very weak and very tired...VERY FAST! Don't give up on your person going through this, help them, love them, support them. I will let you in on a little secret that a lot of kidney patients go through, but never say anything, due to the risk of judgement...thoughts of suicide are a thing...our mental health is at risk going through our journey, so it's not just the kidney stuff we deal with, it's thoughts like , "maybe my family would be better off, if they didn't have to take care of me, or pick up my slack, or see me going through my struggles and not knowing how to help." Please remember, it takes a lot of work, energy, and effort to "look like we are doing good" or some days even to just get out of bed. You are your loved ones "caregiver"...so CARE!
This message goes out to anyone who needs it!
Help free of charge, ALWAYS!!
Jason Earl