Christmas has come and gone way too fast! So much work and fun getting there and and it's over in a day. But this year I did a lot of thinking! I know the true meaning of Christmas but this year, I felt it! Maybe because I'm not sick anymore and I know what all he has done for me!! As I sat in church Christmas Eve service I thought about Christmas Eve service 2007, when I was soo sick and just getting ready to do my work up to get on the transplant list. Dana and her family weren't there this year. Since they lost Jordan it is too hard to stay here for Christmas, so they went on a cruise this year! As I sat , waiting on the service to start, I texted Dana because all I could think about was Dec 24, 2007, when I stood in the back of the church with Dana and Jordan telling Dana that I may need her help soon.. (that story is posted in another blog) I texted Dana that I was sitting in "my pew" this year, not standing at the back of the church, and it felt 'weird' to be there. She texted back that she loved me and she was just coming in from the beach. But she remembered that evening as clear as I did.
That service meant a lot that night and my eyes teared up w/ joy.
Monday, December 28, 2009
Monday, December 21, 2009
Where I Am Today..
So now I am almost 19 months post transplant, and I can't believe my life!! I can't explain how my life has changed. I remember NO in between. I remember being really sick, doing all I could to make it through the day. I remember my transplant and a good while before like it was yesterday. I have lived it for 9 years, so that's pretty much all I think about. Not in a negative way, but it's everyday!!
I have done 3 stories for the Hendricks Co. Flyer, and 1 for the Star. I tell my story to inform people how important it is to become a organ donor. I have lived in Plainfield my whole life, so pretty much everyone in town knows my story.
Most all of you know my friend Dana House and her family. She has been my rock and my encourager. They have endured a horrible tragedy in their life. It has taken the life of their only daughter, Jordan House. Jordan was a 17 yr. old vibrant, beautiful girl that I have know since she was in 2nd grade. She got 'sick' and was hospitalized on March 1, 2008. She fought so hard to make it and she lost her battle on March 25th, 2008. She had a strand of Meningitis. She passed away from Strep Pneumococcal Meningitis. She was the 1st DCD donor (Donor after Cardiac Death) at Riley Hospital. Dana speaks at hospitals all over the state telling DOCTORS her story and what this is!! If you have any questions, please ask!!
What I am getting at is Jordan was an organ donor, she had been since she was a little girl.
I'll tell you a little story that Dana and I have to cherish forever!!
It was Christmas Eve December 07. We were at the Christmas Eve service at Plainfield Christian Church, and we were a little late. We were at the very back of the church on the right. This is 6 months before I got my transplant. I wasn't even on the list yet. I was just very sick. Dana and her family always sit on the left side of the church up front. They were 'late' also, and they came in behind us and were stuck at the back of the church w/ my family. It was an emotional service for me because I was so sick, I seriously didn't know if I was going to make it to see another holiday. So after the service I went up to Dana, and I had 'known her' for years, but never talked to her, (she has a Helping Hands service, that she runs, she cleans, shops, helps out people in need) and I told her that "I may need her help some day to take care of my girls if I get much sicker"! Her and Jordan went out to her car, and they prayed and cried. Dana said to Jordan, "Isn't it sad that someone has to die so Lynn can live"? And Jordan was bawling and said, "Mom, aren't you glad we're organ donors"?
It was 3 months to the day that Jordan passed away. Dana and her family tried to direct donate Jordan's liver to me. We went through all the testing, but sadly we weren't a match. Jordan saved 4 lives being an organ donor and I am so proud of her. Because Jordan was a donor, Dana can get out of bed every morning. It gives her joy knowing that Jordan saved 4 lives and now the recipients can have holidays with their families.
I have done 3 stories for the Hendricks Co. Flyer, and 1 for the Star. I tell my story to inform people how important it is to become a organ donor. I have lived in Plainfield my whole life, so pretty much everyone in town knows my story.
Most all of you know my friend Dana House and her family. She has been my rock and my encourager. They have endured a horrible tragedy in their life. It has taken the life of their only daughter, Jordan House. Jordan was a 17 yr. old vibrant, beautiful girl that I have know since she was in 2nd grade. She got 'sick' and was hospitalized on March 1, 2008. She fought so hard to make it and she lost her battle on March 25th, 2008. She had a strand of Meningitis. She passed away from Strep Pneumococcal Meningitis. She was the 1st DCD donor (Donor after Cardiac Death) at Riley Hospital. Dana speaks at hospitals all over the state telling DOCTORS her story and what this is!! If you have any questions, please ask!!
What I am getting at is Jordan was an organ donor, she had been since she was a little girl.
I'll tell you a little story that Dana and I have to cherish forever!!
It was Christmas Eve December 07. We were at the Christmas Eve service at Plainfield Christian Church, and we were a little late. We were at the very back of the church on the right. This is 6 months before I got my transplant. I wasn't even on the list yet. I was just very sick. Dana and her family always sit on the left side of the church up front. They were 'late' also, and they came in behind us and were stuck at the back of the church w/ my family. It was an emotional service for me because I was so sick, I seriously didn't know if I was going to make it to see another holiday. So after the service I went up to Dana, and I had 'known her' for years, but never talked to her, (she has a Helping Hands service, that she runs, she cleans, shops, helps out people in need) and I told her that "I may need her help some day to take care of my girls if I get much sicker"! Her and Jordan went out to her car, and they prayed and cried. Dana said to Jordan, "Isn't it sad that someone has to die so Lynn can live"? And Jordan was bawling and said, "Mom, aren't you glad we're organ donors"?
It was 3 months to the day that Jordan passed away. Dana and her family tried to direct donate Jordan's liver to me. We went through all the testing, but sadly we weren't a match. Jordan saved 4 lives being an organ donor and I am so proud of her. Because Jordan was a donor, Dana can get out of bed every morning. It gives her joy knowing that Jordan saved 4 lives and now the recipients can have holidays with their families.
Wouldn't Change A Thing!
Well, I have skipped a few months here and there, and I regret that! But I am here to tell you, that I have come a long way!! And I wouldn't take back one second of what I went through. I wouldn't change a thing! I couldn't have said that a few days, weeks or several months out, because I was in SO much pain!! My journey has opened so many doors and opportunities for me.
Through all this I have found my purpose in life.. why God made ME! My heart is pouring out to help others and make them aware of how important Organ Donation is!! I have been called by strangers that have heard my story, for me to talk to a friend or loved one going through the same thing I did, or what to expect.. I have helped about 6 people personally, and I give all my time volunteering for IOPO-Indiana Organ Procurement Organization / Donate Life, sharing my story and speaking at High Schools encouraging everyone to become organ donors! It is so heart warming to know that you have helped changed someones life.
Through all this I have found my purpose in life.. why God made ME! My heart is pouring out to help others and make them aware of how important Organ Donation is!! I have been called by strangers that have heard my story, for me to talk to a friend or loved one going through the same thing I did, or what to expect.. I have helped about 6 people personally, and I give all my time volunteering for IOPO-Indiana Organ Procurement Organization / Donate Life, sharing my story and speaking at High Schools encouraging everyone to become organ donors! It is so heart warming to know that you have helped changed someones life.
When I Came Home
I had a few set backs, and was re-hospitalized twice for a couple of 'bumps in the road' they call it. But since then I have had good check up's and regular blood work that is so far so good!! I came home weighing 99 pounds. malnurished and I had a feeding tube for 3 months, that I had to hook up to for 8 hrs. a day.
I couldn't have taken this incredible journey without the help and support of my family. Dave, Britton and Brooke, my mom, my sisters, nieces and nephew, my brother in laws.. my friends, Brooke's friends. My family was there for me 24/7and was there for the good and bad. They got a lot of laughs out of me!! (ask Ashleigh)
My PCC church family couldn't have done one more thing for me!! They stepped up and prayed, visited, brought meals, helped w/ expenses and much more.
Thanks to all who came to see me at the hospital, at home, brought meals, called, texted. I think I took my phone to surgery w/ me!! LoL!!
I couldn't have taken this incredible journey without the help and support of my family. Dave, Britton and Brooke, my mom, my sisters, nieces and nephew, my brother in laws.. my friends, Brooke's friends. My family was there for me 24/7and was there for the good and bad. They got a lot of laughs out of me!! (ask Ashleigh)
My PCC church family couldn't have done one more thing for me!! They stepped up and prayed, visited, brought meals, helped w/ expenses and much more.
Thanks to all who came to see me at the hospital, at home, brought meals, called, texted. I think I took my phone to surgery w/ me!! LoL!!
Recovery
This journey is taking so long to post! But I will try to finish it up here! I was in surgery for about 4 hours. I recovered in SICU (surgical ICU) for about 2 hours until I could breath on my own and they could take my ventilator out. I was totally out of it and had no idea what I was doing or saying! (like I was kind of rude to people I didn't know) The family told me what all I said, and I couldn't believe it! The pain meds were wonderful!! I do remember all the things I said and hallucinated about while on 'drugs'!!
I had dancing girls coming out of my TV when it was off and when no one was in my room.. hmm..? I had a little kid living behind my bed, that would ONLY come out when I was alone!! I had Octopus crawling all over my walls.. When it was bed time and the it was lights out, that's when I would have panic attacks. My room would fill up with shiny sparkling cobwebs. I would lay all night and reach up and pick one out of the air and pull my fingers apart and the cobweb would stretch and then I could peel it off like glue. For 5 straight days and nights, I didn't go to sleep! My room was HAUNTED!! I would tell Dave to "Reach up and get one, their right in front of you"!! And he would say "No Lynn, I believe you"!!
That 5Th morning after no sleep, I asked the nurse "Did someone die in this room, because it's haunted!! She checked my med list and my pain meds were to strong for me. The next night, I slept like a baby!
I had dancing girls coming out of my TV when it was off and when no one was in my room.. hmm..? I had a little kid living behind my bed, that would ONLY come out when I was alone!! I had Octopus crawling all over my walls.. When it was bed time and the it was lights out, that's when I would have panic attacks. My room would fill up with shiny sparkling cobwebs. I would lay all night and reach up and pick one out of the air and pull my fingers apart and the cobweb would stretch and then I could peel it off like glue. For 5 straight days and nights, I didn't go to sleep! My room was HAUNTED!! I would tell Dave to "Reach up and get one, their right in front of you"!! And he would say "No Lynn, I believe you"!!
That 5Th morning after no sleep, I asked the nurse "Did someone die in this room, because it's haunted!! She checked my med list and my pain meds were to strong for me. The next night, I slept like a baby!
Tuesday, September 15, 2009
Surgery
At 4:30 a.m. May 27, 2008 I was taken to the OR. When they came and got me from ER, saying good bye to my family was a wake up call. I really didn't know if I would see them again. We said our good bye's and I was taken into the OR. I don't remember a lot, but I remember it being cold, and white, and noisy!! I was on the OR table and my arms were stretched out like I was on a cross. They sat me up to get things ready, and across the room was a pink wash tub and two doctors holding this huge pink organ!! I said "Is that my liver"?? The nurse said, "yes it is, isn't it beautiful"? The doctors were putting the bile ducts into the ports. And that is the last thing I remember for about 9 days!!
On our way
We left the house and dropped Brooke off, and headed to IU. We got around the corner from our house, and my car was out of gas. So we came back home and got Britton's car and then were on our way. We were 'truckin' down 70, and we passed .. flew by a State trooper. His lights came on as soon as we passed him. We pulled over and Dave waved him to pull up beside us, he pulled up and Dave told him we had to get to the hospital for a liver transplant. The officer said "Go For It".
We got there in 20 minutes.
Dave let Britton and I off at ER and I checked myself in. Nervous and scared I told them I was here for a liver transplant. I got in a room right away and stayed there until 4:30a.m. when I was taken in for surgery.
My mom, my sister Marla, and brother in law Jason all came right away and just hung out in the floor! My friend Kristen came up to and stayed in my bed with me until I was taken back. It was a very small room.
The doctors came in and told me that my liver was flying in from Ohio. They told me I was getting a pediatric liver from Ohio, and that's all I knew. I prayed for that family.
We got there in 20 minutes.
Dave let Britton and I off at ER and I checked myself in. Nervous and scared I told them I was here for a liver transplant. I got in a room right away and stayed there until 4:30a.m. when I was taken in for surgery.
My mom, my sister Marla, and brother in law Jason all came right away and just hung out in the floor! My friend Kristen came up to and stayed in my bed with me until I was taken back. It was a very small room.
The doctors came in and told me that my liver was flying in from Ohio. They told me I was getting a pediatric liver from Ohio, and that's all I knew. I prayed for that family.
Getting on the transplant list
So.. I'll try to keep this short~ I did about 3 months of testing for transplant work up, to make sure I was healthy enough to have the surgery. I had to have: a drug test, pulmonary test, bone scan, treadmill, heart cath, MRI's, CT's, chest x-rays, colonoscopy, see a dietitian, psychologist, psychiatrist, social worker.. I was finally cleared for transplant and went on the Donor List on April 2, 2008.
I'll skip ahead to the day I got the call--At the time I worked for Plainfield Schools. I was an assistant with developmental preschool.
I got "The Call" Memorial Day night, at 11:45 p.m. The kids just went to bed, and Dave and I were still up. The phone rang and it said I U Hospital. I just stared at the screen and I said, "Hello" and the other end said "Lynn this is Kristy at IU hospital, and we have a Liver for you". I said "What did you just say', she repeated it, I had her on speaker phone so Dave could hear. While I was on the phone with her, I started calling people on my cell phone. -- She said you have 20 minutes to get to the hospital! Britton yelling from her room, "Can you take that off speaker, I'm trying to sleep." Dave went to tell her "Get up, your mom just got a liver"~ Brooke had a friend spending the night so we got them both up and had to take them to her friends house. Brooke had a test that day. I had nothing packed so I threw some stuff together and off we went. I was a nervous wreck!!
I'll skip ahead to the day I got the call--At the time I worked for Plainfield Schools. I was an assistant with developmental preschool.
I got "The Call" Memorial Day night, at 11:45 p.m. The kids just went to bed, and Dave and I were still up. The phone rang and it said I U Hospital. I just stared at the screen and I said, "Hello" and the other end said "Lynn this is Kristy at IU hospital, and we have a Liver for you". I said "What did you just say', she repeated it, I had her on speaker phone so Dave could hear. While I was on the phone with her, I started calling people on my cell phone. -- She said you have 20 minutes to get to the hospital! Britton yelling from her room, "Can you take that off speaker, I'm trying to sleep." Dave went to tell her "Get up, your mom just got a liver"~ Brooke had a friend spending the night so we got them both up and had to take them to her friends house. Brooke had a test that day. I had nothing packed so I threw some stuff together and off we went. I was a nervous wreck!!
Saturday, July 11, 2009
Where My New Life Begins
So.. I'll try to keep this short~ I did about 3 months of testing for transplant work up, to make sure I was healthy enough to have the surgery. I had to have: a drug test, pulmonary test, bone scan, treadmill, heart cath, MRI's, CT's, chest x-rays, colonoscopy, see a dietitian, physiologist, psychiatrist, social worker.. I was finally cleared for transplant and went on the Donor List on
April 2, 2008. It was tough waiting!
I'll skip ahead to the day I got the call--
At the time I worked for Plainfield School System.. with special need pre-school.
I was out of school for Memorial Day week-end, then I had 3 days of school left for the year. I got the call Memorial Day night, at 11:45 p.m. The kids just went to bed, and Dave and I were still up. The phone rang and it said IU HOSPITAL.. I told Dave, and just stared... I said "hello" and the other end said "This is Kristy at IU hospital, and we have a Liver for you". I said "What did you say"? She repeated it and at this time I had her on speaker phone so Dave could hear. I gave him the phone and started calling people.. Britton was in her room, Yelling: "Can you take that off of speaker!?? I'm trying to sleep"!!
Dave went to tell the kids, "Get up!! Mom got a liver".
April 2, 2008. It was tough waiting!
I'll skip ahead to the day I got the call--
At the time I worked for Plainfield School System.. with special need pre-school.
I was out of school for Memorial Day week-end, then I had 3 days of school left for the year. I got the call Memorial Day night, at 11:45 p.m. The kids just went to bed, and Dave and I were still up. The phone rang and it said IU HOSPITAL.. I told Dave, and just stared... I said "hello" and the other end said "This is Kristy at IU hospital, and we have a Liver for you". I said "What did you say"? She repeated it and at this time I had her on speaker phone so Dave could hear. I gave him the phone and started calling people.. Britton was in her room, Yelling: "Can you take that off of speaker!?? I'm trying to sleep"!!
Dave went to tell the kids, "Get up!! Mom got a liver".
Saturday, April 11, 2009
How I Found Out I Was Sick
In September 2000, my family and I went to our Hometown Parade. My sister Marla and I decided to donate blood at the Indiana Blood Center 'bus'. Plus they were giving out free COLTS shirts that said, "I BLEED BLUE FOR THE COLTS". About a week later, I received a letter in the mail that said my liver enzymes were elevated, and I needed to see my doctor right away. So I made my appointment. My doctor ran blood tests and my liver counts were very high! This went on for about 6 months, checking my counts every month. My counts kept getting higher, so he refered me to I U Medical Center to Dr. Lehman. He is a Liver doctor that goes all over the country doing a procedure called an ERCP. A scope ran down my throat into my stomach into my intestine's. I was under Dr. Lehman's care for about 7 years. In October of 2007 my health started to decline quickly and I was turned over to another doctor, Dr. Naga Chalasni. He is a "Pre Transplant" doctor and would be my doctor, up until I needed a liver transplant. I was put on several meds to keep my liver functioning as long as possible. In February of 2008, my doctor basicly told me I needed to start my work up for Transplant.
Friday, April 3, 2009
Where My Story Begins
Written Feburary 2008
My name is Lynn Livingston and I am 43 years old. I was diagnosed with PSC (Primary Sclerosing Cholangitis) in 2001, when I donated blood at a local parade. The results showed that my liver enzymes were extremely high. I immediately saw my family doctor, and after many tests and meetings with a liver specialist, I was diagnosed. PSC is a rare liver disease, (three in 100,000 get this disease) that scars the bile ducts, restricting the flow of bile, and causing it to back up into the liver, which eventually causes liver failure. Initially the PSC was controlled with ERCPs, which is a procedure where a scope is inserted through my mouth and moved into my bile ducts, allowing doctors to remove the scarring and allow the bile to flow normally again. The scarring kept returning, however, and eventually was in a part of the liver that the scope was no longer able to help. Because the liver was unable to drain the bile fast enough it slowly began to quit functioning, which led to the diagnosis of cirrhosis of the liver in 2006.
My name is Lynn Livingston and I am 43 years old. I was diagnosed with PSC (Primary Sclerosing Cholangitis) in 2001, when I donated blood at a local parade. The results showed that my liver enzymes were extremely high. I immediately saw my family doctor, and after many tests and meetings with a liver specialist, I was diagnosed. PSC is a rare liver disease, (three in 100,000 get this disease) that scars the bile ducts, restricting the flow of bile, and causing it to back up into the liver, which eventually causes liver failure. Initially the PSC was controlled with ERCPs, which is a procedure where a scope is inserted through my mouth and moved into my bile ducts, allowing doctors to remove the scarring and allow the bile to flow normally again. The scarring kept returning, however, and eventually was in a part of the liver that the scope was no longer able to help. Because the liver was unable to drain the bile fast enough it slowly began to quit functioning, which led to the diagnosis of cirrhosis of the liver in 2006.
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