Hey friends,
My name is Raquel Rosado, and I would like to share my story with you. I was born with a genetic disorder called polycystic kidney disease. I have been fighting this debilitating disease for my entire life. I am 30 years old, and the past year has been the most difficult in this uphill battle.
After learning that my first transplanted kidney was failing, I was placed on dialysis at the age of 28, after only a little over 3 years of having a functioning kidney, in which I endured 6 years of dialysis before receiving. After thorough evaluations and many hospital stays, including 3 months in the oncology unit at Massachusetts General Hospital last spring, I was placed on the liver and kidney transplant list. My kidneys had been through so much damage throughout my life due to my poor kidney function, that I was now in need of a dual liver-kidney transplant.
During July of 2020, I was shocked to receive a call that Mass General had a donor that would be a good match for me! I was given 6 hours to get from Bangor to Boston to receive my new organs. While I was on the operating table, the surgeons noticed a growth on my heart valve, and not being able to identify what it was, they pulled out of the transplant surgery, and I ended up losing my opportunity to receive this life-saving opportunity.
- After a couple of months of treatment, it was determined that the growth on my heart valve was only getting worse, and that I would need open heart surgery to remove the growth, or “vegetation” from my mitral valve. I was faced with two options; either an organic tissue replacement, which would deteriorate over time, or a mechanical valve replacement, which would put me on blood thinners, for the rest of my life and compromise the success of any future transplants, in effect just buying me a little more time to live. I made my choice, and went into surgery. When I awoke, I was told that the amazing surgeons at Mass General had repaired my heart valve, and no replacement was needed! This came as a huge surprise and gave me a new outlook on my future.
In May of 2021, I received another late night call, saying that there was a donor available and I would need to be at the hospital within 6 hours to start prepping. The surgery was expected to take 12 hours, but due to complications with bloodwork and some damage to my transplanted liver, my surgery turned into a 55-hour event, in which 3 separate surgeries took place. Due my prolonged time under heavy sedation, I developed what is known as “ICU Delirium”, a condition that puts patients in a dream-like state, where they are neither sleep or awake, but experience their worst fears and nightmares in what feels like a real-life setting. I remained in this condition for 3 weeks, living in all of my darkest thoughts as my reality. During the time where I was supposed to be healing and recovering, I was overtaken by this horrifying condition, and suffered many complications along the way, with no less than 15 procedures and therapies to try to save me.
During a fairly routine liver biopsy, a major blood vessel was pierced, and I ended up being rushed to the operating room, as I was internally bleeding and my blood pressure was unsustainable, along with the blood thinners that I was on, and a low blood count, I was in a critical state, that I ended up coming out of, but there have been a large number of setbacks, this being the single most life-threatening one.
I have been discharged twice since May 19th when I went in for surgery, and both times I have had to be sent by Life Flight back to Boston within a day of being home due to complications, where I still am at this moment.
My prognosis is looking better, but and my new organs are starting to work, which I am so grateful for. There is still a long road ahead, and I have endured so much over the past couple of years, and I am continuing to fight to be here with my loved ones.
Throughout this journey, there have been out-of-pocket expenses well over $5,000. While I realize that many people have had a tough year and a half, any amount of funds that can be contributed to relieve my financial burden would be much appreciated so much. Along with the physical challenges behind me and ahead of me, the monies that have been utilized have put me in an additional state of hardship.
If you would be willing to help relieve me of any of the costs involved with the process I have been through, I would be forever grateful for your generosity. I am regularly getting tests, scans, and procedures done, but I want you all to feel free to contact me with any questions or comments, as I have become an open book through this experience.
Thank you all for reading, and your consideration.
Here’s to another day.
With Love
Raquel