Organ Donation (The gift of life)

Monet (Kidney Recipient)

“Living-related kidney donation is beyond any experience I have ever had before, and is difficult to properly describe. Perhaps blasting off in a rocket is comparable. It is something for which you train, test, practice, and think. It affects many people in your life, and could be dangerous. When the moment finally arrives, it goes by so fast that it is almost anti-climactic. The end result is the enrichment of another, and consequently, your own, life. The event has a certain routine and known result. Circle the moon and return safely to meld back into a normal life. Always the knowledge is there, but I am no different or better than anyone else. I have a lovely scar to show off, my badge of honor. And as my friend Brad said, "All badges of honor with women involve big scars."

"The hardest part is when the doctor told me I had to go visit dialysis clinics, because that’s when it became real."

"It was hard accepting that I couldn’t control my health any longer -- not by diet, not by exercise, not by positive thinking. If you have ever faced serious disease, you know what I mean.  And I’ll tell you, denial is our friend when you have a chronic illness.  With denial and a positive attitude you can ignore the bogey man in the corner. I was in warrior mode and nothing was gonna stop me from living. I mentally prepared myself, I knew I was gonna get through. I had trust in the surgeons, trust in the medical community, trust in things would work out. I never ever feared for my life. I knew I was gonna make it I just did. I thought I was gonna be on dialysis for a number of years. I was on dialysis for two years."

"As soon as I woke up in recovery I felt like, like a person feels when their tired and go to bed and they have a very restful sleep. They keep the recipient in the hospital (at least they used to) longer so they could adjust their medication. One by one the needles would come out."

"Despite all the bad stuff that we hear in the news, there are some amazing stories out there about the how we humans help each other out. I feel like, despite our differences, we are all one – transplants prove that." 

"Some people think that they might not try to save you if you are in a accident. You’r a marked man if you have that dot on your card. Organ snatchers! This is simply not true"

"What I would say to people who are waiting for transplant, transplants work. You can have health better than before the transplant. Also, it’s a personal decision to have a transplant.  It’s rare a person regrets a transplant. I’ve become more grateful everyday and it’s something that hasn’t left me."

Jang (Heart and Kidney Recipient)

"I struggled with heart disease for 27 years. I had my first heart attack when I was 32 years old. They found two blocked arteries. Ever since I’ve had 10 heart attacks. I had 16-17 stents in my old heart. 2 strokes. 2010 my kidneys failed. I had no hope of making it. I made all my arrangement. I told my kids how to take care of my last rights."

"Doctor Wieselthaler gave me a lot of hope. He’s a heart surgeon at UCSF. I was the first patient around here on dialysis for so long to receive a LVAD (bridge to transplant) . He said I’ve never done this before but if you let me I will go ahead and put in an LVAD. I had no other choice. After 3 months I was doing really well and gained some strength. He then put me on the list and after 7 weeks I got my heart and kidney.  These days there is a longer wait. There’s not enough organs and more people are on the list. 5-6 years ago they didn’t qualify as many people for heart transplant. There were certain restrictions like  people with HIV didn’t qualify for heart transplant. Now they are qualifying them along with other types of patients such as cancer patients. It’s a result of advancement in medical sciences and skills of the doctors."

"You will be amazed at the success rate of a heart transplant. It’s about 93% success rate. I have seen the success rate with Stanford and UCSF reach 98%."

"I tell you if I made it then the success rate is real high!  Because I didn’t have any hope, neither did my family. They thought I would be gone in a few months."

"Kidney and heart was done the same day same time. My sisters was wiling to give me a kidney but they wouldn’t except it because both the organs have to come from the same person. Otherwise they would have to give a wide range of immune suppressants."

"When I got the call and was told they had a matched kidney and heart I was relieved. It was finally going to be over. I was at the stage where I didn’t care what happened to me. I was so weak and been through so much by that time. What ever happens happens. I though I was a burden to my family."  

"They started me walking around the next day. You could feel your chest jumping up and down. Such a strong heart beat. Before I felt like a 100 year old man. I lost all the taste in my mouth. Then I had no appetite. I thought only the rich and famous get heart transplant. Not a person like me."

George (Heart and Kidney)

"It was 1990 when I was diagnosed with diabetes and 2 years later I had a heart attack at age 40. I was really surprised because I never thought it would happen to me, or let it happen to me and I did and that’s been the hardest part. Through the years I visited the cardiologist on a regular basis. I was always freaked out, and my mom would tell me you need to go to the doctor. Don’t be afraid, don’t be a man and don’t’ ignore it. Your grandfather did, your father did and they they died of heart disease."

"January 12 2013, I wan’t feeling good so I called the doctor and they told me to come in. I went to the ER and after about an hour I had to go to the bathroom and that’s when I passed out.  And that’s when I coded 6 times. They brought me back another 2 times after I was in ICU. My defibrillator never when off.  I needed an ablation but the Salinas hospital hasn’t finished building the wing to service these types of conditions. So they flew me to Stanford. Then they had to stabilize me. Two days later they did an ablation but that almost killed me. I was hospitalized for a month and a half. They put me on the list for an LVAD. I was the first to get a new type of LVAD, but the first one was defectives so they had to take it out and put in another one."

"The ER doctors said to me I’m a walking miracle. It was the best gift I’ve every received."

" I thought this was it. They told me with my blood type that it would be years before I get transplant. Since I  have a common blood type they give you the heart based on how sick you are. After I got the LVAD people said I looked like death. I had a lot of issues with LVAD at first. With an LVAD you get put on the A list for 30 days (front of the line). After 30 days nothing happened. More months passed.  9 months into the LVAT I got a second chance." 

"I met Freddie at football because my grandson and his son played football together. He would help out and we became good acquaintances.  Then one day I saw on Facebook that Freddy’s brother was in accident and was sick. Soon my stepdaughter got a phone call from Freddy’s wife. My stepdaughter called me and said don’t get your hopes up too high but Freddie’s brother is ill. She said he was in an accident and asked if I would be open, if matched, to have his heart and kidney. Freddie then called me and asked if I would be open to it. I said I would be honored to do this."  

"At that point Donate Life took over.  They weren’t sure how this was going to happen because to their knowledge a heart was never gifted like this. We ended going up to Stanford and they prepped me while the body was being transported. The next morning the anesthesiologist said we were a go. The only thing I remember was waking up and seeing a nurse I knew. It was nice to hear a voice you knew. They had me sitting up 8 hours after surgery. I would lay in bed at night and when it was quiet I could hear my heart beat!"

"People don’t realize what it takes to get a transplant nor do they realize what you’ve been through.  Since the surgery I am very aware of my surroundings and I’ve become more compassionate. My transplant was February 25th 2014."

Freddie (Donor Brother)

"I met George (recipient) through football. My son was playing football with his grandkids. We had an instant connection. Some people you meet you just click. After a few years I noticed his health was really deteriorating. I remember seeing him at a  game and he looked pale white. So I asked him what was going on. He said I have this LVAD to keep me alive until I get a transplant. I was shocked and didn’t understand how all that worked. In September of 2013 I  did a fundraiser for George, but it wasn’t very successful. I said I am not done, I am going to do something else. I didn’t know what it would be but I wanted to help."

"February 2014, I got a call from a friend who was going through some tough times, and I got a weird felling. Then 5 minutes later I got a call from my bother. He was hysterical and I couldn’t understand a word he was saying. He finally calmed down enough to tell me Sisto was in the hospital. They’re weren’t sure he was going to make it. I got to the hospital and my brothers were there and they said he was in the ICU and they didn’t have any brain function. We were floored, 32 years old you’re not ready for that.  We weren’t sure what was going on. We didn’t know what to tell our mom."

"Prior to my brothers situation I never thought about donation. I never had the donor sticker on my drivers license. "

"A couple of days later a lady came to us and asked us about organ donation. My older brother John and I talked and remembered our brother’s wishes. We remembered a conversation we had when he was about 16 or 17 years old, he mentioned if anything ever happen to him he wanted to be an organ donor."

"After my brother and I talked about it we told the doctor we don’t think it’s on his drivers license, we’re not sure he even has a drivers license but we are 100% sure he wanted to be an organ donor. And if that’s what it comes to we want to respect his wishes. They asked if we knew of anyone who needed anything. I said as a matter of fact I do. My friend George needs a heart. They said that’s incredible, we do need to do some testing so if it’s not a match it will go to the next person. A day or two later they came back and said there was no brain function. We kind of already knew this would be the outcome." 

"We all went in and made our peace with our brother.  We brought our mom to the hospital. The hardest thing I ever had to do was tell my mom she was going to out live one of her children."

"My wife at the time called Georges daughter who contacted George to see if he wanted the heart. It was an incredible gift. He also got a kidney. After the transplant knowing I can call George anytime he’s a personal friend of mine. I can call him when I am having a bad day and thinking about my brother. He would come over and give me a hug and I can feel my bothers my heartbeat, and that’s just incredible."

"When you go through life you never think about this stuff until it happens." 

"Now thinking about it, I want to put his story out and put as much information out about organ donation. Especially in certain cultures. In Spanish and Mexican culture we were always told growing up don’t ever sign up to be a donor because if you go to the hospital they’re not going to let you live. So it’s important  to break down those myths. Doctors take an oath to save lives. EMTs take an oath to save lives. They don’t go through your wallet to see if you’re an organ donor, it just doesn’t happen."

"For us it’s important to get the word out. I love talking to high schools because when you’re young you think you’re going to live for ever. Through awareness we are trying to take a taboo conversation to a dinner conversation. Had my brother not told us he wanted to donate his organs may have gone to waste. There are 5 people walking around today because a decision he made. Knowing that my brother saved 5 people is incredible. It gives us a chance to celebrate his life." 

"If you can have one wish, what would it be? To have one family member back even for just a day. Organ donation gives them that wish. "

"It would surprise you the type of people who aren’t organ donors. People don’t want to think about it. If you don’t think about then you’re leaving it to your family to think about it. Do you really want them stressing over it? "

Phyllis (Donor Mother)

"We had a daughter Kelly. When she was 17 she came into the kitchen and said mom we need to talk. I thought 17 “we” need to talk. I said ok let’s get a snack and we’ll sit down and talk. So we went down and laid across her bed. And I said ok baby what do we need talk about. She said mom, if anything ever happens to me I want to be an organ donor.  I said ok lets talk about this."

"I asked, why do you want to do this? She said you know mom I got my license last year and I’ve been thinking about it and you know it’s just a good thing to do." 

"So we chatted about little I knew about organ donation. I said I think that’s great. Your dad and I are registered as organ donors. And the next thing I said was nothing is going to happen. You’re going to get grey hair and wrinkles and you’re gonna have kids. 20 years later she was skiing and had a ruptured brain aneurism. It was so massive there was no hope. She was declared brain dead at that point. Kelly was 37 at this point 15 years ago."

"She was engaged to get married. She said Matt and I don’t want a big wedding just some good friends. I said great where are we going? She said I was thinking Tuscany. One night over dinner we were talking about the wedding and Matt her fiancé said why don’t the two of you just go over there and take care of everything. Kelly said, "do you want to mom." I said of course. I have a suitcase packed all the time! March 17 we left for Tuscany. We had 10 days just the two of us.   Looking back now it was a gift from god that we had that time together.  We planed the whole wedding. I think what helps me is that I saw the whole wedding. I saw her wedding gown. When she came out  in the dress she picked, it took my breath away." 

"We came home on a Tuesday. It was easter week. She called and said would you mind if we don’t celebrate easter this weekend? Matt and want to go skiing and I want to fill him in on the wedding details. I said no problem at all. I said ok honey have a good time."

"I am the number one San Jose Sharks fan in the area. About 4:30 that Saturday we were getting ready for a game and the phone rang. It was Matt. I said hi Matt how’s the skiing, how’s the weather. And I wasn’t getting anything back. I said Matt what’s wrong. He said Kelly has had an accident. I said how serious? He said I am going to put the doctor on. I thought this is bad. The doctor got on and the very first thing he said to me was there’s no hope. I said oh my god what happened? He said we have pronounced her brain dead. I said oh my god oh my god can we transport her out to a trauma hospital. He said this is a trauma hospital. They air lifted her to Reno. I dropped the phone and knew we had to get there as soon as we could." 

"When we walked in Kelly was on a ventilator. It was the worst time of my life. As a nurse and a mom I felt helpless. There she was… I knew that if she was pronounced brain dead there was no hope. I then remembered Kelly was an organ donor, she was registered. So we notified the nurses in ICU and they said we’ll take care of it." 

"On April 2 Kelly become an organ and tissue donor. They were able to use all of her organs. So 6 people benefited. One woman got both of her lungs and her heart. 6 people were able to go on and celebrate anniversary and birthdays." 

"She was always positive about organ donation. If we saw an accident on the highway or seen something on TV she always turned to me and say, mom you know I am an organ donor.”

"People ask me if it makes a difference that she was a donor. I think it does. It wasn’t the end of anything, she's still here"

"I have a friend who’s a nurse who had the opportunity to go into the surgical suite where they remove the organs. She called and told me I just wanted you to know what it’s like. She said it’s like being in church. They are so respectful, there’s no laughing or talking. You can have an open casket funeral." 

"I have a hummingbird on my shirt and my bracelet. A few days after Kelly’s services. I took my coffee out on the deck. I was angry at the world. I didn’t want to live. At that time your vision is so narrow on life. And all of a sudden I heard a noise. I looked up and there was a hummingbird right in front of me. This crazy bird did all these crazy things right in front of me. That hummingbird become Kelly’s spirt and it was saying “I’m ok mom I’m ok”. Every time I see a hummingbird on my back deck it makes me smile." 

Ray (Liver Recipient)

"I was 62 when people at work said I was slowing down. I thought I was just old. I’ve been working for 40 years and thought it was the natural progression.  In August 2007 the wife and I went to Las Vegas. It was 113 degrees and I was in a sweatshirt freezing. We knew something was wrong so we came back and started doing some testing. I didn’t feel bad I was just cold."

"Sometime around October 2007 they did enough tests to tell me I had cirrhosis of the liver. I said to the doctor, that’s hard to believe, because I rarely drink, other than social occasion. I said this doesn’t sound right."

"The doctor sent the tests in and it came back as Alpha-1 Antitrypsin deficiency (Alpha-1). Cirrhosis is scaring of the liver my was shrinking of the liver. They say it’s hereditary, but as far back as I can find there was no record of any liver disease."

"Before the war people died of what they would call “natural” causes and so they didn’t test for liver or kidney disease like they do today. My mothers side of the family all came from England and malnutrition and issue, and during the wars they suffered from a lot of malnutrition. It’s very possible it came from this side of the family but I don’t know for sure. Nobody else in my family has had liver disease, all my daughters have been tested negative."

"When I was diagnosed I started getting sick really quick. When the liver stops functioning the body has no way of getting rid of all the fluids, so I was very bloated leading up to my surgery. The day I was operated on I was 295 lbs but my normal weight is usually around 200 lbs. Towards the end, the last six months I was sick, they were draining between 3-4 liters of fluid a week. The last two weeks they were getting 5-6 liters every three to four days. The fluid was building up to where it was affecting other functions such as my lungs. It took about a year before I got sick enough to have enough  MELD* points to be on the list. My MELD score hovered around 24-25 until early 2009 when I finally got on the list."

"One day I drove to San Ramon for a PG&E meeting. At the meeting my boss and his boss came up and said, “are you feeling all right because you look terrible”. I said yeah I think so. I started feeling bad that morning, and at one point I just got up went to my truck and drove home. I don’t remember leaving the motel. I don’t remember stopping and getting a cup of coffee. I woke up three days letter in the hospital and didn’t remember anything.  I had what they call an ammonia unbalance caused by ulcers in the stomach from all the fluid I was retaining. It was the first time I was in the hospital since the service. I was usually the person who took people to the hospital!  I never used my Kaiser card until I got this issue."

"Things really started to progress. So in July 2009 I went from barely getting on the list to being at the top of the list. The move to the top was a result of other function starting to fail such as my kidneys. At this point you have the option of taking a less than perfect match. This would buy you four or five years until a good match came was found.  We were told I would be on the list for a couple of years before a match came in."

"On August 1 2009, we were debating what to do next, then the doctor came in and said you’re not going to believe this but we have a perfect match for you."

'The liver was located back east and they flew a team to harvest the organs. Everything happens so fast, you didn’t have time to think about it. A lot of things in the hospital blew me away because I hadn’t been in the hospital before, I didn’t know the routine, I didn’t know what they were doing."

"All the stars and moon were aligned the day I walked in because I had the record for being on the list for shortest amount of time and I had the record for the shortest operation. They told my wife I would be in ICU for 12-16 hours, I was in ICU for only 4 hours. My old liver shrank so much it left a nice cavity for the new liver. When they replace your liver they also take out your gall bladder. With no gall bladder I have to be careful with the type of food I eat. What is amazing is I’ve had no issues other than the normal post surgery healing."

"On August 3 2009 was the day of my  liver transplant"

*The Model for End-Stage Liver Disease (MELD) system was implemented February 27, 2002 to prioritize patients waiting for a liver transplant. MELD is a numerical scale used for adult liver transplant candidates. The range is from 6 (less ill) to 40 (gravely ill). The individual score determines how urgently a patient needs a liver transplant within the next three months. The number is calculated using the most recent laboratory tests.

Patti (Liver Recipient)

"I’ve always been pretty healthy other than a few broken bones from my profession. I started getting tired, what I called it walking in cement tired. Every step was a chore. I went a  public health fair where you can get you blood pressure, blood test ect.. The results came back with my liver enzymes being extremely elevated. I had a client who was a nurse and asked her what would cause these to go up so high. She said a lot of things could be the cause and asked if I ever been tested for anemia or Hep C. So I went to the client and asked for the Hep C test. After a week I went back to see the results of my test and the doctor said, "yes you're positive." I said," for Hep C?" And he said,"yeah." I was like now what. I was starting to panic at this point. I didn’t know anything about Hep C. I just knew it was not a good thing to have. I felt like a leper. I went to Reno and found a gastroenterologist through a recommendations. He immediately threw me into a biopsy and their current medication." 

"I did the medication for 6 months and it was absolutely debilitating. The medication didn’t work. It lowered the viral load but it didn’t eradicate it. After doing some research we found out I probably contracted Hep C when I had a C section almost 40 years before. So by the time they did their biopsy and scans my condition was pretty progressive at that point. Not being able to cure it, the next option was to monitor. I found a trial program they were doing at USC. I flew down there several times and played the guinea pig. At the same time my doctors at Stanford were monitoring me. Essential they were documenting the progress of the liver failure. I got diagnosed in 2000 and in 2010 I had an episode with an esophageal bleed. I almost died. At that point they put me on the transplant list. Looking back I didn’t realize a lot of what was gong on. I had to make a decision.  There was nothing more I could do but live my life and try to stay present and try not to poke that bear in the corner or go to those dark places."

"My advice to people suffering from organ failure is to be pro-active. Don’t wait for your next doctors appointment. Go in and get checked."

"Over the 15 years I was sick I was progressively getting ready to not be here. Everybody handles it differently. I don’t know if there is a right or wrong way to handle it, but I do think a positive attitude and being proactive is essential. It's better to understand what's going on rather than hiding in a corner." 

"When you first notice the fatigue you’re going gosh I can’t even get to the end of the driveway. Then you’re going gosh I can’t even get to the front step. I was too tired to ride my horses, I couldn’t even lift my saddles. I count even pull weeds in my garden.  I used to train horses. I would have 5 or 6 horses in training plus teaching the owners. I showed horses a lot and was a judge. I got to a point where I had to quit being a judge.  I didn’t know if I was going to have enough energy the next week let alone 6 months or a year from then. It was a hard thing to give up." 

"It was a big reality check when they put me on transplant list. Deep down I knew it was coming because it’s a progressive journey. A downward road to either death or a transplant." 

"What was difficult was I really didn’t see a “next year.” I thought I’ll do the best I can and I’m not quitting, but I just didn’t see a tomorrow, or a next month. Before my transplant, my husband and I rode motorcycles cross country to Time Square. We stopped in Washington D.C. and I wanted to see the Native American museum. My husband said, “we’ll do it next time." I remember thinking I don’t have a next time. I  felt like there was never going to be a “next time.” I was talking with someone the other day and I thought, you know in the last two years it’s the first time I have had a tomorrow. You just don’t know what it feels like if you never had it. It’s an incredible feeling to know you have a tomorrow. If not for these incredible people who sign up to be an organ donor you wouldn’t have a tomorrow you wouldn’t have that next chance. Anything I can do with donor network to educate people and tell them my story is a blessing for me because it’s a constant reminder."     

"It’s different when you body is telling you it cannot survive. I knew I was cheating the odds just getting as far as I did." 

"I got on the transplant list in 2010 and 6 months later I made the top ten list.  Once I received a call about a possible organ I received about 5 calls after that. Three times they had me in the hospital, everything was done and ready, but the primary recipient was a better match."

"Age doesn’t matter, we just had a 104 year old woman donate her corneas."

"In September 2015 my daughter came out from Colorado for a few days. We took a day trip to Carmel. When we got home my husband was yelling at me, “where’s your phone where’s your phone!”  My daughter said oh my god I turned your phone off. My husband raced me up to Stanford. I told him to just chill they’re probably going to send me home.  We got there about 9pm but had to stay the night so they could fill out all the paperwork with the donor family. In the morning the whole liver team came in and told me it was a go. They said they had a perfect liver for me. It’s a 14-year-old boy and it’s a perfect match. I looked at my daughter and we both burst into tears because my grandson was 14-years-old. It could have been him. I was thinking to myself no no I’ll wait just put it back and make him whole again. It was the worst feeling."

"After my transplant they said they’ve never seen a liver this bad come out of a living person. I try to validate my donor and all that he couldn’t do. I try to live my life for him." 

"I want to let people know that cops, ambulance drivers, and everyone involved in a horrible accident are not thinking about whether you have a pink dot. Their goal is to save your life and they are not going to disrespect you."

"The people who are involved with getting the organ do so with the utmost respect. This is something nobody takes lightly.   There is nothing about the process that makes them trash. These people are gifts and they are totally respected."

David (Kidney Recipient)

"2014 we took a trip to New Zealand and I started getting sick towards the end of our trip. We had physicals before we left for New Zealand and when we got back I had several messages from the doctor telling me to come in there’s something wrong. The doctor noticed I had a lot of protein in my urine. That month I had to call in sick 3 times, and I’m not that type of person. My supervisor called me and asked what’s going on because this isn’t you. I said I don’t know. On Nov 12 I had an appointment with a neurologist and had no idea what a neurologist did. At that point, I was already at stage 4 kidney failure. He said you’re the only option was to get a transplant. I didn’t believe it. It took me months to accept it. My doctor told me the sooner I can accept this the sooner you can do something about it." 

"One day I woke up and decided I needed to do something. They told me I was about to start dialysis and it would be good if we can find a donor before you start since the outcome is usually better. Unfortunately that didn’t happen. I started hemodialysis on July 7th of 2015. It was just horrible sitting in that chair and looking at what my life had become. It’s like being alive and dead at the same time.  Everybody’s world continues and yours stops. I had such a vibrate life up to that point. Working for Delta we traveled a lot. We did a lot of great things but all that stop. I had many complications being on dialysis. I passed out serval times. One time while I was driving. It’s incredible how I didn’t kill myself or anybody. I’ll never understand how nobody got hurt."
 
"I got in touch with the Georgia transplant foundation and start taking classes and started to realize I needed to help myself. I can’t just sit around and wait for them to call. My days off from dialysis I spent looking for a donor.  I started putting up flyers even though I felt sick and was losing weight."

"Asking someone to give you an organ is the hardest thing someone has to do."

"I had hundreds of posters, my car had signs, I ran social media campaigns, and I was on fox news. You know how I got on the news? I know where Fox 5 is located in Atlanta and I made sure I put posters up all around that area. An Anchor saw my poster at a Starbucks."

"I had a home nurse come to my house every day for 4 months. She taught me how to hook myself up to the catheter.  After the hemodialysis, I started the peritoneal dialysis.  I was hooked up to the machine 12 hours every day. I finally stopped urinating and my creatinine level was up to 17."

"The doctors told me I needed a transplant soon or my body won’t be strong enough to handle the operation. I was hospitalized in August of 2016 for two weeks. I was really sick and in a lot of pain. I was very frail when I was released from the hospital. I figured I had about 9-10 months before they would take me off the transplant list. "

"I created a page on Facebook and paid to advertise it and one I popped up on Kimberly’s feed. She called me and told me she wanted to help. She did her evaluation and she was a perfect match. We had the transplant on December 28, 2016."

"I felt I was given another chance but also very scared I would have a rejection, especially from the pain I had after the surgery. Every pain I had was frightening because I thought it was my body rejecting the kidney."

"Seeing an older photo of the dialysis machine reminded me of how much I hated that machine. I would talk to it. Then I finally started realizing that the machine was my friend because it was the only thing that was keeping me alive."

"Post-transplant I don’t have any blood pressure problems. It’s incredible what the transplant does to you.  It’s amazing there are people who have the decency, courage, strength, and love inside of them to help another human."

"I honestly believe the hospitals do everything they can to make sure nothing happens to the donor then and in the foreseeable future."

"There is not a single day that goes by that I don’t think about Kimberly, the stranger from Minneapolis that saved my life.  She gave me a second chance to live. I even gave it a name, I call it Lil’ Kim. "

"People who are in my situation cannot just sit at home and wait. They have to get out there because people are not looking to give their kidney away. You have to have the courage to go out and talk to people. You don’t ask, just tell your story and what you're going through."

"You have to believe there is someone out there who wants to help but they’re not looking for you. You have to be looking for them.  You have to get your story out there, and you have to do what ever you can to advertise yourself." 

"People who give organs to help save someone should not get penalized by their employer. I am blessed because I work for a great company."

"My life is totally changed, I look at the sky differently, I look the water differently, I look at people differently. When I am working people tell me I am too damn happy. Then I tell them my story and they say I have every right to be happy."

Sharon Liver Recipient | Carmon & John Donor Parents 

JOHN: "I was in shock, I was told Nick was in an accident and was being kept alive. I was working on a ship and the captain has only one thing in mind, which is to keep the schedule. The captain said I could get off in Okinawa in two days. The radio officer was a friend and called the port engineer. The port engineer ordered the ship to turn around and they sent out a helicopter and I was home 36 hours. If I had to wait any longer the outcome may have been different." 

CARMON: "When I arrived the social worker ask me for the name of my priest. After I said his  name I wondered why Nick needed a priest, he needs a doctor! Later,  I’ll never forget, the priest was coming out and I was going back in and I said to him, "you gave him his first holy communion and that was his happiest day, I am so glad you are here." He said, "you know he’s with God now." That hit me like a sword. I said to him but we can pray. He took my hand and started praying to Jesus who raised Lazarus from the dead. That became our prayer. Nick was gone on Saturday the 8th." 

"I was in total denial. John was on a ship at the time. I couldn’t make this decision on my own so I waited for John to come home. It took him 36 hours to come back, which gave me time to just be there and not worry about making any major decision. John is the one who really insisted on the donation. He’s a veteran of Vietnam. He really understands the concept of being a hero and he wanted Nick to be remembered as doing the right thing."

"After Nick passed we got an invitation to a donor recognition. At time it was too painful, but John insisted we go and honor Nick. So I decided to go. Afterwards they had a gathering with food and live music. I saw Sharon walk by and gave her hug and I said I didn’t not know Stephanie was a donor. 6 months prior John and I  met Sharon at Compassionate Friends support group for families who lost a child (Sharon’s daughter passed from an allergy attack)."

SHARON: "At the donor recognition they had a tape of Nicks music playing on the table. I had a copy of that tape! It was sent to me by my donor family. I didn’t know who they were at the time. At the time I had sent a letter through donor network to thank my donor and in return I got a letter with this tape of Nick’s music.  It was like oh my goodness that couple over there is my donor family, but how do I go about approaching them. I remember it was October and my daughter had past in August, so the following year when we had the donor recognition  it was sort of impromptu. I came with the intent that maybe they would be there. Maybe this is the time. Originally, my doctor said not to reach out to my donor family. I was thinking why not? So I introduced myself and I stumbled upon my words and finally said your son Nick was my donor. There was silence and I remember the tears shed by each of them. I didn’t know what to say so I said I will leave you to yourselves and I will visit my other transplant friends. Later I remember John came up to me and said we would like to invite you to dinner."  

"I am living proof that it does work. I hope telling my story will save another life."

CARMON: "It was too much to take in. Sharon recognized that and left us alone.  As she said, John approached her, so we went out, and I immediately wanted to know all the details. She started sharing the first year without her daughter was so difficult and wasn’t sure how she was going to handle the anniversary date of her daughter's death. I asked her when the anniversary day was and she said August 2. My heart stopped because that was Nick’s birthdate."

SHARON: "I will be celebrating my 25th transplant year next May. After my transplant for many days I would hear music. I was like where is that coming from? I didn’t know anything about my donor at that point. I asked my doctor was there music playing during the surgery? He said there could have been but didn’t remember exactly. It eventually went away but was very startling. I thought am I going to be living with this music from now on? "

"I was 50 at the time of my transplant. I had twenty years of dealing with an autoimmune disease. At the age of thirty I was diagnosed with chronic hepatitis. Throughout those twenty years I would have flare ups and would take prednisone.  With the flare-ups I eventually developed cirrhosis. The day I got my transplant I was considered an alternate. I remember getting a call at 11pm asking me if I could be at UCSF in two hours."

"The importance of the word recipient. Receiving is not easy. We reject things more psychologically than we do physically." 

"Currently,  I am taking care of myself but I also feel the responsibility to take care of this organ. My GI specialist said I was very lucky because I have a young organ and the donor is male. I always live with the fear that my immune system will attack my liver again, but I can’t worry about that. People’s reactions is you look so healthy. There is a lot reluctance of people to donate organs of their loved ones. Many asians do not donate because they want the body to be intact. You just have to live life to the fullest and do things with family, travel, and experience new things and thanks to donation I am alive.  This has been a wonderful experience because we have had this wonderful friendship." 

Sue (Kidney Recipient)

"I thought I was really healthy then I started feeling a little tired. I thought it was just getting older and thought I may need to exercise more. Then, I was with visiting my parent in Massachusetts and I happened to check my blood pressure and it was through the roof. I was already on blood pressure meds, and thought I should probably get them adjusted.  When I went online to make an appointment I noticed some of my lab work was flagged: cholesterol, GFR and creatinine. I didn’t know what creatinine or GFR was so I starting searching online for answers. The information I found told me I was in stage 4 kidney disease. So I made an appointment to find out what was really going on. When I met with the doctor I ask what was up with my GFR and creatinine scores. His face said it all. It was something serious, but he told we needed more tests. "

"After taking an ultra sound the doctor called me. I remember I was at CVS getting my new  blood pressure mediation filled. He said, “I am really sorry to tell you this but you have a solid mass in your kidney and 95% of a solid mass is cancerous.” I just started crying. He called back and said we are going to get you a urologist and you may have to have surgery right away. This is when it hit me and I started to freak out.  They did tell me if it was cancerous they would have to take it out and since your other kidney is so far gone you would have to start dialysis immediately." 

"Everything started happening so fast. Luckily, the biopsy came back negative for cancer. At that point they though my high blood pressure was the cause of my kidney disease. They also said I needed to find a living donor. I went to UCSF and the doctor was great. They told me to get on the transplant list immediately. Leading up to going on dialysis felt like a waiting game. I was doing everything I could to stay off dialysis. Then in August of 2016 my kidney function was down to 5% and had to start dialysis. When I scheduled the surgery date was the most depressing phase. I decided to try peritoneal dialysis where you can do it at night. It was horrible, I didn’t sleep for 4 months. You’re bloated from being filled up and drained with fluid. It takes up your whole life. I would say I was at the height of my career. I love what I do, but I couldn’t take on any clients because of dialysis. It’s no way to live." 

"Looking back,  I wish I started looking for a living donor sooner. Even though you’re on the transplant list you can still go through many possible matches without getting an organ. Just finding a donor is a full time job let alone finding a person who actually wants to go through it. By the time I started dialysis I was really pushing hard to find a donor. My sister made a Facebook page for me, “Desperately seeking Susan’s kidney.” I had a lot of people test, over 25, they said I may have hit a record. Until you have that kidney in you, you need to keep looking." 

"I started telling people about kidney health and awareness and would ask if they could pass on that I am lookin for a kidney. That was the best way by saying, “I don’t want your kidney per say, but if you could spread the word that would be great.” Everybody was sharing my story on Facebook. When I started my Facebook campaign in January 2017 Michelle saw my post." 

"When Michelle saw that I was type O blood same as her so she decided to get tested. Type O is the hardest to match. At the time I didn’t know Michelle. I remember getting a Facebook message from her that said, “You don’t know me “Yet”  but I am at UCSF right now seeing if I can donate a kidney to you.” It gave me chills and I started crying. I was so nervous when I met her for the fist time. What do you say to somebody like Michelle.  When we met she said don’t make me cry and of course we couldn’t resist. I couldn’t believe a stranger would do this, and she simple told me, “why wouldn’t I give you a kidney.”