Jorie Von Ohlen's Page
Jorie Von Ohlen's discussions
Another recives " the Gift"
2 Replies
Started this discussion. Last reply by Denise Martinez May 25.
Jorie Von Ohlen's Events
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World Transplant Games 2009
August 22, 2009 at 1pm to August 30, 2009 at 1pm – Gold Coast, Australia
Latest Activity
Profile
- How are you touched by transplantation?
- I am a Recipient
- What is your city / state and country of residence?
- Aurora, IL USA
- If you are a recipient, what type of transplant did you receive?
- Liver
- Recipients: In this space, feel free to list those you are grateful to for receiving the Gift of LIfe:
- I am greatful to my Donor family for saying yes, To my parents for never accepting no as the answer and Dr. Starzl who created miracles in the face of those that doubted his efforts.
- 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)?
- 01/84
- What is your principal transplant med(s)?
- Prograf and prednisone
- What is your hospital and, or doctor's name, city / state and country?
- Northwestern Memorial Hospital, Chicago, IL, USA is where I am followed now but I was transplanted at University of Pittsburg Medical center by Dr. Starzl
- What do you do for a living?
- Social Worker
- About Me: Please use this space to tell the community about yourself and your unique experience with transplantation:
- I was born with a rare genetic metabolic disorder called Tyrosinemia. With this disease my body could not process the amino acid Tyrosine and so it therefore instead collected in my liver causing cirrosis and eventually cancer. It took the Drs several months to determine what was wrong with me and at one point one of them had the gall to tell my mother " just take her home and let her die. We will figure out what went wrong when we do the autopsy" But she did not let that stop her and once they determined the problem, the only way to keep me from dying was to have a pediatric liver transplant. At the time this was still considered a risky and rare procedure so my father's insurance refused to pay for it. My parents raised 250,000 dollars to fund the operation. I waited on the list for 7 months and then on a cold and snowy morning in January my family got the call and my mother and I were transported in a donated private jet to Pittsburgh, PA while my father arrived later after flying standby. The surgery lasted 10 hours. 1 month later I was allow to leave the hospital and continue my recovery at the Ronald Mcdonald home. I have been told that I broke records when I did this. After two more months, I returned home to Illinois. From that point on my path in transplantation has been relatively quiet apart from an extended stay in Orlando when I was 8 due to the Chicken Pox and a rejection scare in my late teens due to non compliance as a result of clinical depression. It was after this that I began to become involved with Donor Awareness Outreach and participate in the U.S. and World Transplant Games. Both of these have helped me to remember the importance of the gift that I was given and the responsibility to honor that gift which in the past I had felt was an unfair burden that was placed upon me. Most importantly though is that I have gained friends that understand where I have been and help me to know that I am no longer alone on this rare and wonderful path through life.
- How did you find out about TransplantCafe.com?
- from liverfamilies.net
- What is your relationship status?
- Single
- What is Your Favorite Quote(s)?
- Who can say if I've been changed for the better, but, because I knew you, I have been changed for good - Wicked
- My Personal (non-commercial) Website, Page, or Blog URL:
- http://www.myspace.com/jorievon
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