When you think about it, we all have our own story. Well, here’s mine. 

I was 12 years old and was on vacation with my family in Puerto Rico. At the time I started getting sick, but I didn’t think much of it because it was my first time in PR, so I thought I would get used to it. 

I flew back home to get checked at UMDNJ and soon found out I had high blood pressure and high protein in my urine, which are signs of kidney failure. I got a kidney biopsy done and found out that both my kidneys were damaged and only functioning at 50% as a whole.

For the next two years, I got tested. 

I changed hospitals and went to Saint Barnabas. When I got there I had another kidney biopsy and found out my function was down to 33% as a whole so I only had two options — start dialysis or find a donor quick before my function drops anymore. 

I was a freshman in high school.

I had my diagnosis, which was called FSGS (Focal Segmental Glomerulosclerosis). The next two years I had my family get tested to try and find a match because I did not want to go through dialysis at 14 years old. 

I just wanted to make it through high school. 

I went into a meeting with my two aunts Titi Carmen and Titi Agnes, my cousin Erika and my mother, Kathy. 

I just turned 16 years old. 

I found out my mother was a perfect match and I thought, “My God this is incredible. God bless me.” I was so happy. 

My doctor, Dr. Roberti, told us what we had to do to make sure this happened: we both had to lose weight and hit a goal, so we did it and my kidney transplant date was set for Dec. 12, 2012 with Dr. Sun, my surgeon. 

I was so ready for this and happy to have somewhat of a normal life again. I was now a junior in high school. This was the most important year of my life and I could not enjoy it. 

The day arrived. My mother and I were ready. We couldn’t sleep all night so we got to the hospital at 6 a.m. and went into our own prepping rooms. 

12/12/12

Amber (left) recovering from her kidney transplant with her mom (right) on Dec. 13, 2012. (Courtesy of Amber Santiago)

I couldn’t see my mother before surgery. They put her to sleep and took her into the room. I was still in my room prepping then they put me to sleep and rolled me into the operating room. 

The surgery itself was three hours, so when I woke up I was in so much pain — it was horrible. 

All I could say was, “I am in pain,” so they gave me pain killers. That was a Wednesday, and I just slept. 

Titi Carmen and my cousin Erika came to see me, but I don’t remember it. It was a blurry day, and I was on a lot of medicine. 

I didn’t get to see my mother until the next day. They made me get up out of the bed to walk. It was so painful, but I did what I had to do — I’m a fighter. 

The moment I saw my mother, it was so emotional. Seeing her meant everything to me because I had her with me.

The next day was Friday and my mother was discharged.

I was staying until Sunday because I had to get things removed and to make sure the kidney was functioning correctly. 

My aunts Titi Gory, Titi Carmen and Titi Agnes; cousins Erika, Daniella and Michael; and grandparents Mama Carmen, Mama Gloria, and Papi Miguel all came to visit me. It was so amazing to have my family with me. 

The nurse came to remove my drainer, which took everything out of the kidney, and I squeezed Titi Carmen’s hand. It was painful, but I was happy it was gone. 

The next couple of days I continued walking and building my strength. I was ready to go home.

It was Sunday when the nurse came and removed my catheter, so I felt like I had to pee every two seconds. I was discharged, went home and went straight to see my mother.

I had to recover for a month, so I was out of school and healing. I spent two weeks at home and the other two weeks at Mama Gloria’s home. 

After everything, I thought to myself, “Yes I am great. I can have a somewhat normal life now. I will go back to school and everything will be amazing.” 

Well, let’s just say I was way off. 

The next year

Amber in her first hemodialysis treatment on Dec. 4, 2014.

I went back to school the second week of January 2013. I was doing alright, but then I got a urinary tract infection in January, another one in February and another one in March. 

We did tests and found out the kidney my mother gave me had kidney stones that were causing the urinary tract infections to happen. We tried to get me to pass the stones, but I couldn’t do it, so we scheduled to have the kidney stones removed with Dr. Whang. 

This was done on April 23, 2013. 

I felt great after that and finally, I’m thinking, “That’s it. We’re good now.”

Again, I was wrong.

On May 20, 2013 I had a kidney infection and it was horrible; 104 fever and I could barely walk. We found out that they missed one of my kidney stones and that caused the infection. 

We scheduled another kidney stone removal for June 18, 2013 with Dr. Whang. They made sure everything was removed and, finally, for the next year and a half everything was great. 

I was finally living a somewhat normal life. 

I turned 18 years old. I always wanted a tattoo, so I got one to mark one of the days that changed my life forever — 12/12/12. 

I started feeling sick again so I went and got a kidney biopsy — my kidney was starting to reject. 

My legs were swollen up and I could barely walk. I was in so much pain. 

I moved to Florida with my mother and little sister and went to Tampa General Hospital. My doctor, Dr. Panzarino, placed a hemodialysis catheter after my kidney biopsies. 

I needed dialysis, and, at this point, it was a life or death situation. This was on Dec. 4, 2014. 

Five days later, they tested me and found that I had an infection called cryptococcal meningitis, which causes swollen legs, pain, and scars. This is an infection in the blood. 

I had to have three stents removed on different days because of the infections and kidney stone surgeries. 

A month into dialysis

It was a new year, 2015, and I had been on dialysis for a month or so. But then I had to start plasmapheresis on Jan. 15 to help bring the swelling down and treat the infection. 

I was going to dialysis for four-hour treatments and did two-hour antibiotics after. I was not going home until 7 p.m. 

I would go do plasmapheresis on Tuesdays and Thursdays, which is when I wasn’t doing dialysis. It was a lot on my body. 

Amber was finally discharged from the hospital after two months. (Courtesy of Amber Santiago)

I got treated for a month — until Feb. 6 — and it was gone — or so I thought. 

The infection came back on Feb. 11. But this time it was nodules on my arms. The medication they put me on — fluconazole — wasn’t working for me. 

My doctor at the time, Dr. Carr, kept me on fluconazole and added the flucytosine so I was taking both antibiotics. 

On March 9, 2015, it was gone.

We made the decision that my transplant kidney was hurting me more than it was helping me so on May 14, 2015 I had surgery with Dr. Pearson to remove it.

Amber on Dec. 25, 2015, recovering from her infection. Her mom, Kathy, by her side. (Courtesy of Amber Santiago)

The next couple of months I went to dialysis three times a week for four-hour treatments. I only did plasmapheresis for six months. 

On Oct. 23, 2015, I finally had my fistula surgery because I was tired of having my hemodialysis catheter. I couldn’t have a proper shower with that catheter, and I couldn’t get into my swimming pool. 

While my fistula had to heal, I began the process of getting on the kidney transplant list. 

On Jan. 5, 2016 I had my first meeting. 

She said “No.”

On Jan. 29, 2016, I had surgery to have my hemodialysis catheter removed while waiting on the transplant list. 

My next meeting was on March 8, 2016, so I had to meet the social worker, financial worker, doctors, surgeons and I had to get tests done to make sure I was healthy enough for a kidney. 

Amber getting her hemodialysis catheter removed on Jan. 29, 2016. (Courtesy of Amber Santiago)

The kidney transplant team had a board meeting to present my case and on May 25, 2016 my transplant coordinator, Michelle Ross, called me. The answer was no. 

They didn’t want to put me on the transplant list. 

I was 19 years old and heartbroken. They didn’t want to risk putting a kidney in and the infection coming back and attacking my body. I understood that. 

I continued doing dialysis in Tampa General Hospital while getting back into school for an Associate degree in science for digital forensics and computers at Saint Petersburg College. 

Months later, on Sept. 16, 2016, while using my fistula, I got a bad aneurysm and I needed surgery to bring the swelling down because it was painful.

I was doing dialysis three times a week for four-hours while going to school on my off days.

This entire process made me realize that if I can do this, anyone can do anything they set their mind to. 

I went back to school, and I saw my family

2017 was a great year. 

I was on the president’s honor list every single term. I was going to dialysis three times a week, I started working two jobs and I was going to school. 

I didn’t have any crazy hospital visits. I did some traveling and went to Jersey to visit my family for a weekend in February; I went to Chicago to see my cousin Jewells; and I visited my cousin Daniella for her birthday in Jersey on Jan. 19, 2018. 

On Jan. 31, 2018 I had an ultrasound for my fistula because it had an infiltration and wasn’t working properly. They put a stent and we were good to go. 

I returned to Jersey in May 2018, July 2018 and August 2018. I stayed at my Titi Gloria’s house and went to the clinic in Bayonne Medical Center for my treatment each time I went there. 

I traveled a lot in 2018.

In November 2018, I went back to Jersey and returned to Florida the next month because I developed pains due to an infiltration that happened while in Jersey. 

On Dec. 11, 2018, the day after I got back home, I had surgery to fix my fistula. 

A lot went on in 2019.

Two surgeries — 13 days apart

Amber in January 2019 after her PD catheter placement surgery. (Courtesy of Amber Santiago)

I made the decision to try and do at-home dialysis. On Jan. 31, 2019, I had my peritoneal dialysis catheter placed and I started the healing process. 

Once the catheter was healed, I started using it in the hospital for my training, but the catheter wasn’t working properly. 

On March 1, 2019, I had surgery to get a revision on the catheter.

I thought everything was good, but I was wrong. 

I ended up getting an infection in my catheter called peritonitis, so I was admitted into the hospital and treated with antibiotics for a week. It was painful. 

We still tried to use my catheter, but it wasn’t working. It just wasn’t going to happen. I had the catheter removed on March 14, 2019. 

Yes, I had two surgeries 13 days apart.

After that I was scared to try it again, so I continued on hemodialysis, but my fistula wasn’t working properly once again. I was having so many infiltrations and aneurysms. 

On May 10, 2019, I went in for another fistula reconstruction and a hemodialysis catheter placement surgery. 

While my fistula was healing, I used my hemodialysis catheter and then on Sept. 13, 2019, I had the catheter removal surgery. 

I was thinking, “Finally I’m good,” but no my fistula still wasn’t the best.

On Nov. 7, 2019, I had to go in for another surgery where they placed a balloon in my fistula so it can flow better. 

I did some traveling in 2019 and went to see my family in Jersey in June, July and August. I stayed at Titi Gloria’s house, as always. That’s become my second home. 

The best time was having my cousin in Florida with me in May 2019 and having my family with me in Florida in July 2019. 

I’m going to keep fighting

So far, 2020 has had its ups and downs. 

I’m studying for my Bachelor’s degree in science for forensics at Keiser University. 

I started Jan. 14, 2020 and it was different but somewhat normal with dialysis three times a week in a hospital. I needed some normality in my life. 

I started to make friends and it was amazing. I enjoyed the classes. I take one class every month so it’s fast-paced, but I like it that way. 

On Jan. 28, 2020 I went to see my infectious disease doctor, Dr. Ubillos, and he cleared me to start the transplant evaluation. On Feb. 20, 2020, I started going through the kidney transplant evaluation.

I have been infection-free for a year, so I was hoping this was the year for me to finally get approved. 

But because of COVID-19, everything was shutting down and my school was the last one in March to shut down. 

I was very anxious and stressed because I was going to school and the hospital while COVID-19 was all around us. I continued going through the process of getting on the transplant list and I started going to school virtually.

My last meeting, before they presented my case in the board meeting, was May 6, 2020, but with COVID I wasn’t expecting anything to happen just yet. They had the board meeting and I got the call from my transplant coordinator, Crystal Rodgers, and they said no, I am not approved for the transplant list. 

They said it was still too risky. 

At this point, you would think: Give up. What is the point? 

Well, with the life I have, I’ve always lived by never giving up. I kept ongoing. 

On June 23, 2020 I decided to have peritoneal dialysis catheter placement surgery and try to do it from home again, and at least have some freedom. I was still going to the hospital three times a week with COVID, and it was scary. 

I had the surgery and they used my fistula until my PD catheter was healed. I started my training and it was working beautifully. I was so happy. 

I did my training in the hospital for over a month and then on my birthday, Aug. 8, I started my PD treatment at home and it was so nerve-wracking. 

I didn’t sleep for the first two weeks at home because I was so nervous to move at night. 

We are now in September and it’s been a crazy ride for me in the last 12 years, but I wouldn’t want it any other way because I am who I am today because of what I have been through. 

I thank God every day for waking up in the morning because some people do not have that fortune. I have a supporting and caring family and friends. They are my blessings. 

God gives his toughest challenges to his strongest soldiers and God will not give you something you cannot overcome — these are words I live by every day.

Yes, I haven’t had the easiest life, but having an easy life is boring and my life is full of excitement, pain and joy. I love every second of it. 

Never doubt yourself or think you cannot do something because, look at me, I have been through it all and I am still here telling you my journey. 

I have felt pain and been through more things than you could imagine from being on a wheelchair for over a year, multiple surgeries, dialysis treatments and infections. 

God has a plan for all of us and mine may be the hard way, but I am a warrior. 

I am a survivor, a warrior, a fighter, a believer, a soldier, a conqueror and a child of God. I still have a journey ahead with obstacles and challenges, but the more I get knocked down, the faster I get up and fight. 

I will continue to fight for my life and get my kidney. I am working on getting on that kidney list because I know I have a bigger purpose in this life.

God brought me here and I have to create the world I want to live in. I will create my own outcome and I will make my life for me because no one is going to make it for you. 

Everything happens for a reason, but my reason is bigger than life itself.

1 thought on “I had my first kidney transplant at 16. That’s when my life changed.

  1. My beautiful daughter..how I wish I could take away all your pain and struggles and put them on to me. I pray that 1 day soon you will be approved for that kidney list & start living the life you so deserve. I love you my soldier, & you are absolutely right..we will never stop fighting.

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