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Stephanie’s Story

April 17, 2014  8 years

multi visceral transplant (small bowel, liver, pancreas and stomach)

 

Stephanie has a genetic condition (Gardner’s Syndrome - FAP) that lead to the removal of her large intestine in 1998 at the age of 24. Complications of that surgery (Developing a desmoid tumor the size of a football) eventually caused her to lose her small intestine and her gall bladder in May, 2000, caused damage to one of her kidneys, an artery in her leg and leg nerve damage. Because she lost all but 3 feet of her small intestine in 2000, her body was unable to absorb nutrients.  Then, most of her nutrition came from a line into a blood vessel in her chest. She needed to attach a large intravenous bag of nutrients to that line 12 hours daily for almost 6 years to sustain her life. While receiving chemo to treat her desmoid tumors she developed several life threatening infections, causing liver damage. She then needed a transplant for intestinal and liver failure.

On April 17, 2006 She underwent her liver, pancreas, stomach and small bowel transplant at Georgetown in Washington D.C after waiting nine months.

On may 17, 2006, Stephanie was released from the hospital to temporary housing near Georgetown hospital.

On June 21, 2006 She returned to her home sweet home after being away from home for 9 1/2 weeks with all 4 organs doing well. They will continually monitor all organs and check for rejection. This will require weekly/monthly trips to georgetown (DC) for scopes, biopsies and labwork.

On April 17, 2007,Steph has finally reached her 1 year anniversary of her multi visceral transplant. She is doing great. Scopes/blood work and check ups have now been decreased and are less often however it is still constant work to make sure the intestine is functioning properly to allow the other organs to receive the nutrients and rejection meds they need to func properly. She continues to watch "what she is around" to avoid infections which could land her in the hospital. Her battle continues to be with getting the small bowel to function as "normal" as possible. She suffers from stomach dysmotility at times causing pain and discomfort. She has been able to manage this with taking certain foods out of her diet and with help from certain meds. We pray that issues continue to be more manageable everyday.

Steph continues to do better day to day. Almost at 1 1/2 years, the bowel is starting to be more manageable and more consistant. This makes daily activities just a little more normal and less stressful. A never ending battle with elevated liver numbers. But with now rhyme or reason, so they have been accepted as "normal".

It is now coming up on 3 years. Steph is doing great. She is back to working full time and is eating pretty normally with some foods in moderations. 

 Steph and Nate adopted a little boy, Jonah on September 24, 2008 at 2 days old. Steph and Nate are enjoying their new life with her new organs!!

April 17, 2014, Steph will celebrate her 8th anniversary of her multi visceral transplant. She continues to do well with yearly check ups.  She currently is battling High Blood pressure which is caused by the rejection meds. She has been able to avoid it up to this point.  Georgetown is trying to find the right medicine to bring down the BP.  So far without success. Her BP lingers around 140/100 daily. She continues to work 30+ hours a week as a Certified Hand Therapist, travels and enjoys time with her 5 year old and husband!

Thanks sooo much to her donor. With out their selflessness, she wouldnt be here today to experience all of the wonderful dreams

Thank you for your prayers, thoughts, kind words and generosity in this difficult time. If you have never met Stephanie, she is one of the most inspirational, amazing people you would ever have the chance to meet. If you know Stephanie, you know that this is true. She takes great care of her family and friends, and until early September, 2005, took great care of her elderly patients as an Occupational Therapist for the last 9 years. She hopes that after she recovers from her transplant surgery, that she will be able to resume work again, and adopt some children of her own.

Be sure to read the latest in Stephanie’s journal, view the photo gallery, and write a line or two in the guestbook as often as you visit - your words, thoughts and prayers mean so much to Stephanie and her family! Thank you for stopping in to see how things are going. Stephanie and her family will be sure to keep you all updated.

Many have asked how to make a financial contribution to Stephanie's cause in the fight of her life. Go to the "LINKS" page (above) to get more information on how to donate on behalf of Stephanie.

Contributions are tax-deductible and solely benefit Stephanie. Receipts can be provided to individuals for donations greater than $250. Please consider making your donation via check rather than a credit card, due to the 3% processing fee that would be deducted from your credit card donation.

Contributions of all sizes are greatly appreciated – large and small. Every dollar adds up! She truly needs financial help, in that the cost of Stephanie’s transplant surgery will exceed $500,000. There are many expenses she and her husband Nate will encounter that are not covered by insurance – things most don’t even consider. Further, following the surgery, the cost of anti-rejection medications will cost over $25,000 monthly. Stephanie will likely exceed her health insurance’s lifetime limit, given all of her previous health expenses.

Thanks for reading.

Latest Journal Update

Going on 9 years

TIggy
TIggy
Cant believe its been almost  a year since I updated.  As always, no news is good news.  We have just been busy with work, jonah's school and sports.  My health is pretty much the same.  I had some issues with high BP for awhile. After many different meds to get it straightened out that didnt make me sleep all day, we finally have a good combo!  Other than me turning 41 and having the arthritic pains in my neck and knee, just typical 4o year old drama.  Doctors are looking at an area in my armpit and trying to figure out what it is.  We thought it was an inflammed lymph node however after looking at it, the docs thought it was attached to my pec muscle so we are doing alittle more research to figure out what it is and hoping its not a desmoid.  If it is, it becomes a bigger decision on what to do. 

Jonah keeps us busy being an active 6 year old. He now plays ice hockey, baseball and soccer.  He is now in 1st grade and loving it all

We had to put our big boy - rocco rhodesian ridgeback - down in November.  We then got an additional buddy for our 14.5 year old girl, Kana in January.  I included a pic below.  Jonah loves him.  But for some reason he likes to sleep on my face!  ugh

It is also creeping up on the 9th anniversary of my multivisceral transplant on April 17, 2015.  What this also means is that the DASH for organ and tissue donation awareness is coming up too.

If you are interested in joining us for the walk on Sunday April 19th or donating to our team "Team Stephanie", you can follow the link below. Please email me with any questions.

http://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=1129174&lis=1&kntae1129174=06456B9EB5C546...=

As always thanks for checking in and for everyone's constant support over the years!