×

CaringBridge Needs Your Help by December 31st

Make a gift to CaringBridge in honor of Stephanie and you’ll help even more people surround each other with love and support this holiday season. Donate Now

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

Untitled

Everything still going well here. So excited, Jonah starts baseball today. The more exciting part is that he has been enjoying practice and looks forward to it. It's going to be a windy baseball day but the sun is out!

We are still trying to get my BP to come down. The med I am on is not bringing it down below 140/100 so we are going to start a new one today. Let's see how it goes!

i will be celebrating my 8th anniversary of my 4 organ transplant on April 17
heart
5 people hearted this

Comments

3 Comments

Christine Garmong
By
Congrats! Amazing that it is going to be eight years. Blesings to you and the family. Love you all. Happy spring. :) The Garmong Family Kevin, Chris, & Gabrielle
Ginny Werner
By Ginny W
Congratulations on your 8th anniversary. You are a wonderful inspiration and love seeing the updates on you and Jonah. You are always in my thoughts and prayers. I will always remember your kindess to my daughter.
Nancy Jones
By Nancy Jones
Warren was on two bp meds plus a patch for his high bp - unfortunate side effect for some ppl... can't believe it's gonna be 8 years! woo hoo! still my hero!