My name is Mariana Gaviria and I am 28 years old. I am in a really great time in my life. I recently got engaged to the love of my life. We just bought our first home and adopted our first dog together. I love going on walks with my dog, especially now with COVID when it is harder for people who are immunocompromised because we are at a higher risk of contracting COVID. I also really enjoy reading, listening to music, swimming and going to the beach (don't worry doctors, I don't do this much anymore and when I do I wear al the sunscreen and hats and SPF shirts). My favorite thing to do is to travel. That is what I want to get back to doing the most. I love visiting new places and immersing myself in new cultures, trying new foods, and exploring new places.
My kidney story:
I was diagnosed with kidney failure at the age of 15. Kidney failure is extremely silent and it is hard to diagnose before it is too late. This is what happened in my case. I actually found out that my kidney was failing because I had a knee dislocation that was extremely painful and required a visit to the ER. The craziest thing is that no one could have ever thought at that time that I was as sick as I was. I was a normal 15 year old. I just took more naps than I had in previous ages, but everyone thought it was normal. So how did I lose both my kidneys by the age of 15 you ask? Well I was diagnosed with Microscopic Polyangiitis, an autoimmune that destroyed both the kidneys I was born with by the time I was 15. I was put on the list at that time and the search started for a living donor. Unfortunately, a lot of my family was told they couldn't donate, we needed up having some people diagnosed with autoimmune diseases of their own and others who were not at the health requirements necessary to donate, but then my living guardian angel answered the call. My mom's best friend Gladys decided to donate one of her kidneys to me.
So why are you looking for another donor now?
So this kidney transplant that I had happened in 2013. I was 18 years old and on cloud nine. I have never been happier and more grateful in my life. I lived my life as is expected of someone who has just gotten a second chance at life. I finished my undergrad, I went to grad school, I fell in love, I traveled, I danced and enjoyed the company of my friends and family, always saying yes to all the food after having had a very restrictive diet. I was healthy, happy and thriving. All this came crashing down when my creatinine spiked in 2018. I was in the middle of my master's program, and I was terrified. I had moved away from home, feeling healthy enough to move out for the first time and live with my boyfriend. I had new-found independence and so much energy, how could this be happening? This spike in creatinine signaled what was to come. After two biopsies, I was told I had FSGS in my transplanted kidney and this new disease had again caused irreparable damage. This time it hit me hard. The first time I was given the diagnosis of microscopic polyangiitis, I was hopeful because the transplant was the way out. The light at the end of the tunnel. This time it felt different. It was a disease I did not cause, and there was nothing I could have done differently that would have made for a better outcome, but I felt as if it were my fault. I also felt like I went through a period of mourning for the new life and the new healthy body I had come to love and appreciate so. I started plasmapheresis and things stabilized, but with kidney diseases a lot of the time once the disease has progressed and caused damage, it is damage that cannot be fixed. So I needed a kidney transplant again and that is why I am here.
So I try to make it seem like my kidney disease does not affect me much, but it is far from the truth. I take a lot of medications to keep my body healthy so that my failing kidneys do not affect other parts of my body as well. Some of these medications are hard on my stomach and sometimes it is hard to get excited about food. I am also on a restricted diet. Have followed a low sodium diet since I was diagnosed with the renal disease at the age of 15 and that has not changed nor do I want it to change, but I am also on a low phosphorus diet and low potassium diet to make sure that I don't have too much concentration of either of them in my blood causing other problems. This diet is not the easiest to follow as it consists of being dairy free, lowers intakes of a whole bunch of fruits and other high potassium foods such as potatoes. It is hard to balance that diet with wanting to dine out sometimes and with cooking daily meals which my fiancé and I try to do to stay a bit on the healthier side as well. But it has been a challenge that I have had help with overcoming. It is not always pleasant to not be able to eat chocolate, drink a glass of milk, eat cheese, eat ice cream, bananas, mangos. Some of my favorite meals require foods that I cannot have anymore, but my fiancé has tried to find new replacements or ways to make my favorites. I have had friends look up recipes just to make sure I can still have foods I love in ways that will not require me breaking my diet. It has been interesting but also deeply enjoyable to learn to cook new meals that do not require breaking my diet.
I guess the worst part about kidney failure, and I have felt it more this time than last, is the lack of energy. I feel tired often. I often feel like I am fighting my body to go about my daily activities that I found to be a breeze before. I often find myself thinking about naps and wanting more sleep, but a lot of the time I amount this to just being more adult now. I know that it is not because I am getting older, but because my kidney is not working as well and my body needs more sleep. This makes having a job a little more difficult because there are days that I really do feel like a truck ran me over and I do not feel like getting up for my 7:30 to 4 PM job, but I am grateful I have a job to wake up for and family that continuously pushes me to not lose the spark and the joy of staying busy and moving and enjoying life. It is hard and challenging and oftentimes exhausting, but I continuously push myself to strive for more, to be better and then on the days I feel like I cannot anymore I give my body some grace and just plop on the couch and watch tv cuddled up with my dog and my fiancé. I am not currently on dialysis, and I know if that time comes, I will have other challenges to overcome, and that thought scares me, but I know I can do it as I am strong. I do wish some days were easier, especially with exercise. I struggle to exercise because I do feel more tired. Recently I have been taking the walks, but it is my goal to start swimming again as part of my exercise regimen to make my muscles stronger for when the transplant time comes.
A transplant would mean a lot. A transplant is another opportunity to have my healthy body back, my energy back, my old self back. I do miss a lot about right after transplant the last time. I miss the endless energy and the feeling of strength I had in that time period.
Having the transplant would mean peace of mind, it would mean easy traveling again, it would mean having boundless energy again and being a normal adult. It would mean the world to me to have a transplant. I cannot wait for that time to come because I know I will enjoy it and appreciate it even more than I did the first time. I know it would be life changing to go about a day without thinking what my medical future will look like and thinking twice if I should go somewhere or do something or if I have the energy to meet up with my friends that day or go on that swim or to the gym. I am looking forward to seeing the woman I can become with a transplant because I know that I am unstoppable now, but imagine an unstoppable woman with a transplant. I think I would be an unstoppable force.
So how can you help me through this crazy time?
Honestly, for me it would be enough if you share my story. This story is written with the purpose of maybe finding a living donor which increases the longevity and likelihood of a transplant being successful, but I also write this to educate people on kidney disease. I want people to know that people who are 28 and even 15 can be diagnosed with kidney disease and need a transplant. I want people to know that there is a way they can help that child, you adult or me if they feel like they can. Sharing our stories is important so that people understand just how prevalent kidney disease is and how much we need donors. I need a living donor, someone who will be my next living angel. I know it is a lot to ask ,but if you think that maybe you could be interested in being that living donor to myself or someone else with kidney disease, then you can start the donation process confidentially. If you could never seeing yourself donating a kidney, and believe me I understand that side too, and I would never judge anyone for thinking that way, maybe just share my story so the we can educate the public about kidney disease. Maybe this will help find better answers to the donation problem. Maybe having more people interested and pushing for advances in technology may push for better treatment options or better options to find a way around needing people to donate organs.
If you are considering being a living donor please use links below to contact Mariana Gaviria's Transplant Center. Begin by completing the donor questionnaire
There are currently 120,000 people waiting for a lifesaving organ transplant in the U.S. Of these, 100,000 await kidney transplants.
The median wait time for a kidney transplant is 3-5 years and can vary depending on health, compatibility, and where you live.
In 2014, 17,107 kidney transplants took place in the U.S. Of these, 11,570 came from deceased donors and 5,537 came from living donors.
Every 14 minutes someone is added to the kidney transplant waitlist.
A kidney from a living donor lasts longer and begins functioning more quickly than a kidney from a deceased donor.
In 1995, kidney donation became minimally invasive with a procedure called laparoscopic nephrectomy, which only requires four small incisions. Hospital stay is typically only 3 days after this operation.
Not blood type compatible with your recipient to be a living donor? Kidney Paired Donation (the “kidney swap” program) enables incompatible candidates with a living donor to receive a kidney from a compatible donor.
Last year, over 700 living donor kidney transplants occurred using Kidney Paired Donation.
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