My name is Angie and I am a 31 year old female. I donated my left kidney to my brother Oscar nearly seven (7) years ago, in March 1995 at the UCS University Hospital here in Los Angeles, CA where we reside. By the way, he is doing great thus far.
Oscar fell ill in March of 1993 (he was only 20 years old) and I was 23 at the time. He got sick as fast as night turns to day. One night my mother and I discovered him lying on his bed, wiggling in pain, vomiting and complaining that he was going blind in both eyes. Imagine our shock at seeing a very healthy and very athletic young man dying before your eyes without any indication of illness!?!
I offered to take him to the ER that night to which he refused, saying there was nothing wrong with him other than his eyes! It was very plain to see that whatever he had was affecting all of his bodily functions, not just his eyes. The next morning, my parents took him to see a doctor and I went to work. I got a call from my mother at 2:00 that afternoon explaining that he was being rushed to a nearby hospital because his blood pressure was 210/100, and the doctor stated that he did not know how my brother was still alive, much less conscious.
Once I got to the hospital, I realized that the doctors thought he was on drugs (I overheard them in an elevator), but after taking his urine and blood samples it was clearly determined he was 100% clear of any drugs (which he never took), but he was urinating 100% sterile water, no toxins. His kidneys were already at end stage of renal disease. He never knew his kidneys were failing until then. He was placed in the ICU for eleven (11) days until, his blood pressure was restored to a normal level and obviously, dialysis began immediately. By the way, the reason he was going blind was due to the fact that his blood was so thick with toxins, that it was putting pressure on his optic nerves.
We still don’t know what caused his kidneys to fail, all we know is that is was not a hereditary disease. He was on dialysis for 2 years prior to the transplant.
Our story is unique, I feel, in the fact that neither he nor our parents wanted to even contemplate the idea of a kidney transplant. We are of Mexican decent and my parents being very humble people did not understand the concept. My brother, on the other hand was afraid of the transplant not being successful, and of endangering my life as well.
Being that I am the oldest child and the only girl was difficult in trying to convince my family of the transplant option. I can honestly tell you that the very first day he was in the ICU, I offered my kidney without a second thought to myself or of the consequences — a mental state of mind I held throughout the two year ordeal. I was very determined to not allow my brother to die without at least trying.
To say that my parents, Oscar and my youngest brother David and myself went through the hardest time in our lives is an understatement.
Once my brother was released from the hospital and on dialysis, he became very angry and quiet. He would not follow his strict diet or fluid restrictions. As a result, he would end up at the hospital four times a year nearly dying. He believed his kidneys would “jump start” and work again, and he adamantly would argue with the doctor. Oscar decided to see three (3) others doctors for medical opinions, all of which determined that his kidneys had failed and would never work again. One doctor actually said he had a one in million chance of having the miracle of his kidneys working again.
My struggles began long before the transplant. I gained 35 lbs. the first year he got sick due to the stress of the situation. My baby brother became angry as he felt neglected because Oscar was the focus in our family nucleus. My parents nearly divorced because they would blame each other for his illness. As I gained the weight, I slept less and less and smoked more and more cigarettes.
People really need to understand that having a ill member in your family is a MAJOR crisis, I guess you have to experience it to understand.
Anyway, I love science and am an Anthro major (when I do take classes at the JC) and I finally decided I had to convince my parents before I could work on convincing my dear brother. I took out my old textbooks and explained in layman’s terms to my parents the how-and-the-why his kidneys would never function again. Surprisingly, I was successful in my explanation and they were getting desperate as any parents would.
I took me 8 months to convince my parents and another 6 months to convince my brother. And let me tell you, that WAS a challenge for the books!!
Once my parents were on the transplant side of the situation, daily home life was hell on earth, day in – day out. As soon as my Dad and I got home from work, we would begin the ugliest ritual I’ve ever known…
Oscar would not leave his bedroom as soon as we got home. My father would go into the bedroom and ask him if he wanted a kidney, if he wanted to die, what the hell was he thinking, etc. Understand that Oscar was VERY STUBBORN, all the while he’s lying on his bed, facing the wall, not uttering a sound. Naturally, my dad would lose his patience get angry and leave. Then it was my mother’s turn, same scenario. Then my turn, same result. Hell.
Well, one night I couldn’t sleep and I got up in middle of the night and I found my father drinking hard liquor, in the dark crying and talking to himself. He was saying that his son was going to die. Indeed, Oscar’s doctors had already warned that at the rate he was deteriorating, he would last no more that five (5) years. He had developed calcuim deposits on his knuckles and other joints in his body, he was losing muscle mass, and walked hunched over like an old man.
It broke my heart to shreds to see my Dad reach his breaking point, my father never drank more that 2 beers a sitting in all his life, and to see a grown man like that was awful. I promised my father that the next morning I was calling in sick to work and that I would stay in house until I convinced Oscar that he needed a transplant.
And that’s exactly what I did. It was the toughest discussion/fight, you can imagine. I’m a little embarrassed to divulge my tactic, but all is fair in love for a brother, right? So for three hours I sat next him, followed him around the house (he was avoiding me at all costs) while I stated that I was more stubborn that him, and so help God I was not leaving this house, not even to go to work until he answered my question, did he want a kidney? I repeated this phrase nonstop for those 3 hours until he screamed, “Yes!”
From that point on, it was easier. I quickly contacted the Kidney Foundation, and researched any and all support groups in the area, and discovered a sector of the TRIO group targeted at the Latin population. I felt it important to include my ethnic background as a working factor in the our situation in order for my family to cope. It worked wonders. I promised my brother to only go one time, and if he didn’t like it I would lay off the transplant business. I called TRIO and explained the importance of his first and maybe his only meeting. It was a blessing from God and from these people. They truly helped in opening Oscar mind to having hope, and hope in a transplant. We learned my brother’s greatest fear was hurting me in process of donating.
Soon, we were referred to transplant doctors at USC. By the way, GREAT place!!! Even Greater people!!! Dr. Robert Mendez, whose a renowned kidney transplant surgeon, I’m sure you’ve heard of him. Kind man, big heart and spoke Spanish, which was easier for my parents. My father and I, of course volunteered, I was and am proud to say, a PERFECT match for my brother, so I was it! By the way, I received this news on my 24th birthday at work. What a birthday present!! I was scared and elated at the same time.
The tests were a drag, and did conflict with work a bit, but I was blessed with very supportive co-workers and bosses. In fact, I should mentioned that they were my only support system, not one friend or relative understood in the remotest sense what I, as the future donor, was going through.
I decided to move out so that I could suffer my fears in peace. I slept three (3) hours at the most, ate more, smoked more. How I wished there was a website like this at the time, my God. I was able to only find few sentences in transplants books at the library. It was very difficult for me, because I was afraid for myself and for my brother. I went to a priest a month before the surgery, and he said he was sorry but did not know how to help me. All I wanted was someone to understand and to validate what and how I felt.
I was able to find two (2) live kidney donors without the Internet, now that’s a feat!!! And finally I knew I was not going crazy but that was I felt was “normal” for us special kidney donors. The fear of dying makes you humble and I wanted to be prepared for that event, just in case. I also had to prepare for the possibility of the kidney not working at all.
I wrote my brother a letter two weeks before the surgery were I told him that even though I couldn’t understand how he felt (being the sick one) that he was not going through this journey alone, we would do it together, that I never felt more proud or honorable in any other event or deed in my life as I felt then, and that I would feel that the transplant and my sacrifice was worth it even if it failed, because not trying is failing, and finally that if the kidney he received worked only 2 minutes, 2 months, 2 years, or 20 years that, for me, it was worth it because I knew he would LIVE life, not just be surviving it as he had done on that machine for two years.
I had an angiogram the day prior to the surgery where I developed a hematoma from hell!!! I wasn’t able to bend my knee for a month!!! Anyway, it was decided that my left kidney would go to Oscar. The day of the surgery was the scariest day of my life!!! And the most painful, emotionally as well as physically. My surgery was schedule for 10:00 am and Oscar’s would begin half an hour after mine. He and I were in separate rooms on two different floors prior to the surgery. When I was being wheeled out of my room, of course we had plenty of relatives, friends, co-workers and neighbors to go around for days in that waiting room and they are all crying waving good-bye (very painful see) and then I see my brother coming out of the elevator with nurses following him and he’s walking towards crying like a baby saying he’s sorry. He bends of over me and hugs and kisses me on cheek, and I, of course and trying not to cry. He didn’t ! stop saying he was sorry for what we were going to experience.
I broke down in the elevator where my family couldn’t see my pain, my fear. There was a half hour delay in prepping me, because my brother;s blood pressure went up after he saw me. They almost canceled our surgery! After they were able to calm him down, I was taken to op-room, were the epidural was inserted in my back, I was still awake and finally put to sleep.
I awoke exactly 10 minutes after my surgery, with blurry vision, seeing only white light thinking I was dead, but for minute, maybe less. I have a wave of pain on the left side of my torso which conclusively informed me that I was very much alive. The pain was making me more conscious, more “awake” if you will. And the more awake I was, the more pain I felt. I reached a point were I inhaled to scream of the pain but I immediately realized that was a no-no. You see the eleventh rib was removed and when my expanded lung hit the ribs, on boy!!! Pure pain!! A nurse came over and asked if I was okay. I begged for more morphine, because couldn’t take the pain in longer.
Much to my amazement, since I had awakened much too early, the morphine wasn’t there, yet. So I suffered agonizing, and I do mean raw pain for 15 minutes! Once they rushed the morphine to the recovery room, they knocked me out for another two hours!!!
My brother’s surgery went well. He was in the ICU for just one day, he demanded to be in the same room as I. He urinated 14 liters in the first 24 hours, and 11 liters the second day.
We stayed at the hospital for 8 days total, six (6) weeks recovering at home and plenty of tylenol with codeine for a month. I wasn’t able to shower, or wash my hair, my mother and aunt did that for me.
Walking was painful, I used a cane for 2 weeks, and riding in cars was painful.
On the 15 of March will be our 7 year anniversary, and still going on strong.
My brother has since received his AA in Architecture and will be transferring to the University in September, I still work, go to school on and off and hope to one day finish my studies, but not in Anthro – it doesn’t pay much.
My brothers and I are still single, living at home with our parents, Oscar just had his 29th birthday and David is 24 now.
My only concern now is having children. I have met a wonderful man who I hope to marry, as he does to me and we have discussed having kids. He had a 5 year old son, which I am glad just in case I can’t have children. He does want more kids and I would like to have a least one, but not more than two. I am terrified of knowing whether or not I can. If fact, I going to begin a new set of urine tests to see how my remaining kidney is working, as if it is strong enough for me to carry a child full term sometime in the future.
I know I’m missing pieces of my experience which may be relevant to someone else, I am more than happy to answer any questions from anyone. I am fully bilingual in Spanish, reading and writing as well.
Thank you for giving me this opportunity to share my story in the hopes of giving hope to others, and in letting them know that they are not alone in their journeys.