-
Jen
27, Female
Bolingbrook, United States - Share
- Applications
- Blog Posts
- Discussions
- Events
- Groups (3)
- Photos (69)
- Photo Albums (1)
- Videos (2)
Jen's Groups
-
Stop Copper! Support Wilson's Disease!
10 members
-
Liver Transplants
49 members
-
Team Cyclosporine
18 members
Jen's Page
Profile Information
- What is your city / state and country of residence?
- Bolingbrook, IL -United States
- How are you touched by transplantation?
- I am a Recipient
- If you are a recipient, what type of transplant did you receive?
- Liver
- If you are a recipient, what type of donor did you receive your Gift of Life from?
- Deceased Donor
- If you are a recipient, when did you have your transplant(s)?
- September 15, 1998
- What is your principal transplant med(s)?
- Cyclosporine
- What is your hospital and, or doctor's name, city / state and country?
- Dr. Punch at University of Michigan in Ann Arbor, MI
- What do you do for a living?
- Advocacy Coordinator in the field of Social Services as well as the Associate Cila Director for one of our Residential Departments
- About Me: Please use this space to tell the community about yourself and your unique experience with transplantation:
- Learn to appreciate the small things in life is something that I live by daily because it applies to my life in such a strong way. Sometimes you never know when your life can be swept away from you and you don't have time to say good bye to those you love or appreciate everything you have. Everyone that knows me understands that I hold the topic of organ donation very close to my heart. If it weren't for it, I would not be alive today. Getting my second chance at life has made me realize that I serve a purpose in still being here on Earth, otherwise I would have passed away that night I went into the hospital. This happened to me my Senior year of high school and on September 15, 2007 I celebrated my 9 year anniversary of being alive!! What an amazing feeling that was:) Please take time to read it, I know it's long, but it's a huge part of who I am. Thanks for reading....hope you enjoy it!!!
~xoxo~
Jen
It was a normal school day; this particular day seemed much longer than the rest because I wasn't feeling the greatest…During the week, my appetite wasn't very big and I had this feeling that something was wrong but I figured it would get better as the day progressed. I went down to talk with my principle and I went to the doctor's office that day; my principle thought that it would be a good idea for me to be checked even if there wasn't really anything serious wrong with me. They took a few samples of blood for testing. That night I came home after basketball practice and I was so tired so I decided to go to bed.
It was Friday now and I was so glad because the weekend had finally arrived and we were all going to the football game later on after basketball practice was over. The game was against our neighboring city of Vassar so I was excited about seeing some friends I knew from there. We ended up winning the game. I decided to stop by a friend's house after the game to visit for a while. I didn't stay long though, because I was beat and my Saturday was going to be busy. My cousin TJ's wedding and my friend Melody's wedding were both on that day.
I was so excited to go to TJ's wedding because there were going to be some of my relatives there that I had not seen in a long time. After his wedding, I went to Melody's reception for a while. After staying there a bit, I went back to TJ's reception. I had a lot of fun dancing with my family and just hanging out with everyone. I was getting tired though, so I decided to head home. I had a headache and wasn't feeling well.
During the night, I got really sick but I just figured it was the flu because I had the basic symptoms of: fever, aches and vomiting. I didn't worry too much and thought it would pass in a few days. It didn't get much better as the night progressed because I could not stop vomiting and started to turn yellow in color (jaundice)… my mom had been reading up on what my brother has called "Wilson's Disease" which is too much copper accumulating in your liver and your liver enzymes are elevated. It is also a genetic disease. One of the major signs with having liver problems is jaundice, so my mom and dad took me to Saginaw to the hospital; I don't remember which one, but I do remember waiting in the emergency room because it took forever…my mom sort of rushed them along by telling them to contact Dr. Brewer; she specializes in the area of Wilson's Disease down at U of M hospital in Ann Arbor. The doctors in Saginaw did not know what was wrong with me, so I was transported by ambulance to U of M. I arrived probably an hour or so later. This seemed like the longest ride of my life. I can remember specifically there was a part of the road that was made of brick and cement. When I go down to U of M for check-ups and go over that part of the road, it brings back the memory of me riding in that ambulance that night.
I was emitted into the emergency room at the U of M hospital to be observed meaning more vitals were taken and so were all of my levels to see if they were ok. Once the doctors checked me over, I finally got emitted into the Intensive Care Unit (ICU). There, I think I stayed about a week. The first two nights were so long to me…. When people say you don't get much sleep when you are in the hospital, they are not lying; every couple of hours, your vitals are taken and every morning at 6 a.m. your doctor along with the team working with your illness comes in and checks to see how you are doing and how you are feeling.
The first night a few doctors came in to ask me a series of questions such as: if I had pain and where it was or something like that. The next night was, in a sense to me, the scariest and longest night of my life. The doctors had come in and told my parents I would be in need of having a transplant. As soon as this was found out, it was also brought to the attention of my parents that my kidneys were also shutting down at the same time and I was losing control of some of the functions of my body. I honestly don't remember alot after this started happening. I remember being in some pain and being very uncomfortable.
Before I could even be placed on the donor's list, I had to go through a series of 50 different tests. These tests ranged from having an eye doctor come in to see if my eyes were ok to having a dentist come in to see if my teeth were in proper care. These tests were sort of a check to see if I was in the proper shape to be able to have a foreign organ placed into my body. My life was on a complete stand-by; my body was shutting down so quickly that I was placed at the top of the donor's list. In a matter of 24 hours the doctors came into my room and told my mom and dad that they might have found a match. The only known information that they could tell us about the donor was that the new liver came from a 40 yr old man that lived on the West side of the state. He was in excellent condition and passed away due to a head injury.
The doctors began to prep me for surgery although I think the worst part of this is that no pain medicine could be administered before actually going into surgery.
I remember seeing my family and friends in the room. I remember being very restless because I could not get comfortable…. My mom tells me a lot of things now that I never knew had happened at this time. She told me that by the time I reached the operating room, I was in a coma. They were estimating that I had just a few hours to live because my body was shutting down so quickly. She also told me that while I was waiting to be taken into surgery, my brother, Erik, along with my mom and dad, were rubbing my feet and stomach and massaging my back to give me some comfort before I was unconscious. I really wish I could remember this because if I were to die that night, my family would have been the last people I would want to see and smile at before leaving them.
The surgery took 7 and ½ hours to perform. My surgeon's name was Dr. Punch and his associate was Dr. Merion, along with a whole transplant team.
I remember waking up the next day from surgery, and seeing my JV basketball coach smiling down at me. I really couldn't say much because I was not all there. I also had a breathing/feeding tube in the back of my throat, which also made it difficult to talk clearly. Most of the time, I didn't even care what was happening to me…I can remember trying to ask the nurse a question but it was hard for her to understand, so she had me write it down…I asked her how my brother was doing…. If I were to lose him for some reason, I really don't know what I would do because he is probably one of the closest people to me. The night before I went into surgery, Erik was by my bedside and read a verse to me: Joshua 1 verse 9; "I command you, be strong and courageous! Do not be afraid or discouraged. For the Lord your God is with you wherever you go." He told be to be brave and strong for him. He also told me that he prayed a verse for me that night: I Kings 17 verse 21; And he stretched himself out over the child three times and cried out to the Lord, " O Lord, my God, please let this child's life return to her."
The diet I had for the first week was ice chips; all of my vitamins and nutrients were fed to me through my IV. You don't realize how important the small things are because it may have been a small piece of ice, which means nothing to some people, yet to me, it tasted wonderful; like a regular meal.
While being in the ICU, I had a liver biopsy…. they take a piece of liver tissue and test it to make sure everything is ok. After being in the ICU for a week, I was transmitted to the transplant rehabilitation floor of the hospital. I can remember so many special people that helped me every step of the way, but on this floor, I feel I got the closest with the nurses and assistants. There were so many times that I tried to stay strong, but it was so hard at times b/c I didn't understand why this was happening.
After the transplant, I was becoming a bit stronger each day. I had to go through rehabilitation to get myself back to where I was before. This was very frustrating and difficult for me. I could not walk well, so everyday the doctors and nurses encouraged me to use a walker to go down the hall. I guess you could say I was sort of stubborn because I always wanted to do more than I could handle.
Very exciting news…the doctors were going to let me eat regular food…in my head was a party…I could have as much pizza, ice cream or anything else as I wanted. I ate a lot of jell-o because it was hard to keep a lot of food down; I was on 40 pills a day…. they had nasty side effects: nausea, aches, causing you not to sleep, vomiting, etc. Since it was difficult to keep anything down, I had a dietician come to my room everyday to give me health shakes which had all the vitamins and minerals for my diet…this was suppose to help my weight and muscle mass loss of 40 pounds.
Since I was inactive and because of my kidney failure, I had a lot of extra fluid on my body; because of this, I went through several sessions of Dialysis. These lasted between 3-4 hours each session. Some people say you can feel it; I never did; it just made me very sleepy.
I also had a physical therapist come to my room. We went down to a smaller room on my floor where they had different things set up for you to do. There was a small set of stairs where I had to place one foot in front of the other to try to make my legs stronger. I also did several arm exercises. I also had to have the nurses help me take a shower. I never thought a shower or being able to walk was so precious until I found that I could no longer do it by myself or had difficulties trying. I felt so useless and agitated because I wanted to be able to do things for myself and not have to ask others to take care of me. Guess you could say I'm sort of stubborn in that sense:)
The best feeling was to see how much people cared about me. That to me was the most precious time of my life to be surrounded by all of the people that I love. In my head, I was thinking that this might be the last time I was going to see them, but in all actuality, the fear of dying was escaping my mind and I was no longer worried about if I was to fall asleep, would I wake back up…I just wanted the vision of my family and friends permanently stuck in my mind.
I got some surprise visits from my friends from school. I was so glad to see them. I didn't care how or when I was going to get back home; I just wanted to be with my friends and family and get back to my senior year. The night they left, I began to cry because I realized how much I missed them and how much I wanted to be back home sleeping in my bed and living each day to its fullest. The same night though, I was released from this floor, but not from the entire hospital. They released me to the Med-Inn which is a hotel built inside the hospital itself. There I stayed with my mom and dad and Erik. The doctors thought this would be a more comfortable environment for me to stay at and also I had to go back and forth into the hospital for various tests and blood draws in TAC-U (Transplant Ambulatory Care Unit).
Throughout this entire ordeal, I think my brother Erik and I became close…Maybe I should tell you how it started…. my brother went to give blood to the Red Cross and they called him back saying they could not use his blood because his liver enzymes were elevated. The doctor said there was something called Wilson's disease, which had this symptom. So my brother went to get tested for it…. the week he got tested for it was the same week that I was suppose to get tested for it and it was the same week I got sick and needed the transplant. If we wouldn't have known from Erik's blood tests about this, I might not have got to the hospital in time…It is so amazing how everything fell right into place.
Another surprise was brought to my attention when my friends came to visit me. They told me I was on court for Homecoming. I was so excited yet I knew deep down that there was no chance that I would be released in time to go home for it. My parents knew how bad I wanted to be there, not just because I was on court, but also because I wanted to be with the people I cared about and be a normal 17 year old again.
My brother also knew how much it meant to me so he decided to talk with all of my doctors to see if there was a possibility that I could be released the night of Homecoming and come back the next day…. it would be such a blessing to me.
The doctors told me the day of Homecoming I could be released from the hospital. Before I could go home though, I had to go through a session of dialysis. They also gave me 2 pints of blood to give me more energy because I was so tired out.
That had to be one of the most memorable moments of my life. I couldn't believe I was on my way home. My brother got a wheelchair for me so I could be wheeled out onto the football field. The most special part of this is my dad got to wheel me out there and I got to be with my family and friends. I didn't care whether or not I won; I was just glad to be home…I also wanted to have a chance to thank everyone for caring so much about me…I couldn't believe that they announced my name as being the queen. My good friend Andrea crowned me. I can think of so many other people more deserving of this than me. I was very honored; what a memory.
I missed my first semester of my Senior year and my brother took off one semester of college to help me with my classes so I could graduate on time with my class. I have to go back to U of M once a year now for a check-up. I am currently on only 1 medication that I have to take for life.
I am so grateful to be alive; everyday it crosses my mind as to what my purpose of being alive is...I'm sure someday it will reveal itself:)
- How did you find out about TransplantCafe.com?
- through some amazin' people:)
- What is your relationship status?
- Single
Jen's Photos
Jen's Videos
-
The Coleman's TRI for LIFE
Added by Jen
-
Forum
Cancer Risk for Liver Transplant Recipients 1 Reply
Started by Bill Oltman in New to the Cafe? Introduce Yourself to the Community!. Last reply by Nelson Freytes 54 minutes ago.
help help i am techno- challenged !!! 3 Replies
Started by riki in Website Features Support, Feedback & Suggestions. Last reply by Nelson Freytes 2 hours ago.
How long has your transplanted kidney lasted 2 Replies
Started by Diana in General Discussion & Community. Last reply by Brian 7 16 hours ago.
The Gift of Life 1 Reply
Started by Dianne Lovely in General Discussion & Community. Last reply by Jeffrey Isaacs Oct 9.
scars 7 Replies
Started by riki in General Discussion & Community. Last reply by Peach 1 day ago.
I thought l would say hello! I'm the new girl on the block! 18 Replies
Started by Jane Tucker in New to the Cafe? Introduce Yourself to the Community!. Last reply by riki 2 hours ago.
obstructions 1 Reply
Started by Kandee in Kidney / Pancreas Transplants. Last reply by Troy K. Childers Oct 7.
Hi from Madison, WI 3 Replies
Started by Kim Bolinder in New to the Cafe? Introduce Yourself to the Community!. Last reply by Beth Sharer Oct 8.
Moving on up..... 3 Replies
Started by Meghann M. in Lung Transplants. Last reply by Meghann M. Oct 7.
Solu-medrol 4 Replies
Started by Gail Csizmar in New to the Cafe? Introduce Yourself to the Community!. Last reply by Gail Csizmar 22 hours ago.
Blog Posts
Open Letter To Members of Transplant Cafe.
Posted by Jeffrey Isaacs on October 11th, 2008 at 12:16pm — 5 Comments
Dave Undis And Life Sharers
Posted by Nelson Freytes on October 11th, 2008 at 11:30am — 5 Comments
Bring Mary Jo back!!!
Posted by Suzanne Cicchini on October 9th, 2008 at 8:14am — 4 Comments
HOW DO YOU FEEL ALLOWING INMATES TO DONATE?
Posted by Karen Weddick on October 8th, 2008 at 11:00pm — 9 Comments
He is not a doctor, nor has he been in a "need" situation and wth is this?I am a Transplant Facilita…
Posted by Suzanne Cicchini on October 8th, 2008 at 8:25pm — 7 Comments
LIFE WHAT?
Posted by Suzanne Cicchini on October 8th, 2008 at 8:07pm
Why I joined TransplantCafe
Posted by Gail Csizmar on October 8th, 2008 at 7:33pm
Should Lifeshares be allowed on Transplant Cafe? VOTE NOW!!!!!!!!!!!!!!
Posted by Jeffrey Isaacs on October 8th, 2008 at 5:00pm — 25 Comments
I"m now #1 on the list for my blood type!! :) WOOOOOOOOOOOOO HOOOOOOOOOO!
Posted by Meghann M. on October 5th, 2008 at 3:21pm — 6 Comments
Help Us Spread the Word
-
Post this content to popular bookmarking sites:
- Invite anyone who can benefit from being a part of the Transplant Cafe family.
- Get a Transplant Cafe Badge for your website, myspace / facebook page like the one below and other styles to choose from!
Helpful Information
-
Before you sign up; Please Read the Terms of Use.
-
Once you've signed up; Read the First Time Member's Guide for help getting started in the community.
- To learn more about Transplant Cafe, Technical Support & Administrative Contact Info, Click Here.
Increasing transplant awareness through personal profiles, interactive tools, friendships, blogs, discussions, groups, events & networking!
© 2008 Created by Nelson Freytes
Comment Wall (40 comments)
You need to be a member of TransplantCafe.com - The Gift of eLife! to add comments!
Join this network
stef
So -- I had lunch yesterday with an incredible family -- then I hung with them part of the day today... While we were chatting, a few of them talking amongst themselves said, "We should have called Jen..." They said where you were from, and that they saw you at the transplant games -- So I asked, "Jen with the new liver?!?!"
They said you're from their hometown -- they said that your Mom taught their precious brother, Chase... They told me all about knowing you... It was so cool!!! I told them that I just thought you were awesome...
They'll probably give you a holler -- but Lon, Trevor and Brandon (and Buck & Nancy) all send their love...
They're just awesome people, Jen... I saw them do the triathlon -- I got to hug the whole Tri-for-Life team! (And their Mom & Dad...)
They totally ROCK!!! Poor Brandon's bike got two flats on our beautiful Lake Shore Drive and he had to pick up his bike and run 2 1/2 miles with it to the end of the bike portion! I guess the vans that usually pick people up were full -- but his Dad said that wouldn't have mattered to Brandon -- that he would have run it in from 10 miles out...
It's so wonderful what they do in memory of Chase -- and to promote organ donation... They are truly an amazing family...
Love,
Steve
It's been forever since I've chatted with you too!!! I hope you're doing awesome... I saw all of your pictures at the games -- your face kept turning up in other people's shots -- I can see you really get around! It made me smile...
Talk to you soon...
Love,
Steve
That was truly a heart felt experience...CONGRATS on 9 years...that's AWESOME!!!!
Take care,
Troy
I think the Coleman Bros. R going to Pit?
U?
Bill.
View All Comments