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Emily's Transplant Fund

$20,742 of $65,000 goal

Raised by 165 people in 5 months
I’m Emily Klamkin and I live in Flower Mound, Texas. I am 31 years old and I was born with intestinal pseudo obstruction which was caused by mitochondrial disease. After I was born, it took 4 years for the doctors to figure out that I had this condition along with chronic pancreatitis; and it took 7 years for them to diagnose my mitochondrial disease. At the age of 13, I lost my large intestine and most of my small intestines. Since birth, my life has been a crazy roller coaster. The intestinal pseudo obstruction and chronic pancreatitis along with my mitochondrial disease caused almost constant strokes and seizures.

 

I was able to go to college; but I could not finish my studies at that time because of the chronic pancreatitis. In 2008, I had a total pancreatectomy with auto islet transplant which was only marginally successful. The islet cells are no longer working corrrectly and I’m extremely hypoglycemic. This has become extremely dangerous. I’ve had multiple surgeries since then, including the removal of 1/3 of my stomach because of severe gastroparesis.

 

Mitochondrial disease and intestinal pseudo obstruction have dominated my life. I live with extreme, never ending pain all day every day. I cannot eat like any normal person; but must be fed intravenously with a nutritional substance called TPN. Infections have caused me to lose over 30 central lines used for feeding. Unless I receive a transplant, I have no reasonable hope of living a normal, pain-free life and not having an access for TPN.

 

My pediatric surgeon has become a dear and supportive friend. He sent me to a transplant surgeon for an evaluation to see if I was a candidate for either an intestinal or multi visceral transplant. My parents have taken me to three highly regarded hospitals in search of surgeons who might be the best choice to perform this transplant(s) for me. We believe that University of Alabama Birmingham is the best hospital to have this transplant done. I’ll have a 5 organ transplant, large and small intestines, stomach, pancreas and liver.

 

I’ll sign the list to become eligible for this rare transplant once insurance approves it, and once two bilateral pulmonary embolisms are gone. My antibodies are very low, and A+ is a common blood type which helps make the wait shorter. Because of the amount of organs I need, it could be a while. The University of Alabama Birmingham requires that we live there while waiting. My mitochondrial doctor said that the bad mitochondria in my gut will go away once new healthy organs are replaced.
Making the decision to have this rare transplant has been very difficult for me and my parents. But I now don’t have a choice. God has given me hope – a hope I never thought I’d ever have. The first year after receiving the transplant will be very difficult because of the complications, complexity and extent of this transplant. I’ll need to live in Birmingham for possibly a year afterwards.

 

I’m so excited and thankful about finally having hope for a bright future ahead of me! My hope for a better quality of life outweighs the prospect of dealing with a lot of complications, pain and discomfort of this coming year. I know the Lord will see me through all of this.

 

Signing up for this site and asking for your help is extremely humbling. The hospital recommended that we use this site to help defray the very high cost of my surgery (roughly $2 million), hospitalizations, and anti-rejection medication, in addition to the expenses of maintaining two places to live – plus travel, gas, parking and food.

 

Thank you so much all for your help and kindness. Honestly, this transplant couldn’t happen without your support. Praying for me and for us as a family is so very important to us. But, also pray for the loving donor and his/her family who will provide the greatest gift of all that could be given to me – a new life. We are so humbled by your kindness and love for me, my Dad and my Mom.

 

I, or someone else, will post often on this site through my journey over the next days, weeks and months. 

XO,

Emily
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Dear Friends,
This past week was spent in Miami, meeting the surgical team and apartment searching. The surgeon is every bit as wonderful as Dr. Tector in Alabama. Much of the team came in with him. He talked to us about the difficulty of this transplant. He said this is the most major or surgeries. He drew three circles to represent the important factors. One represented Emily, one represented he and the team and one for Emily’s support team (Peter, me, family and friends). Circled around the three circles represented God. Emily has had great doctors and surgeons in her life, but none that brought so much meaning. He drew pictures of how he does the surgery. He feels he can do this safely for Emily. He had done his homework on her. He spent a long time talking about his plan and how he plans to overcome some of the complications with blood clots and graft vs host. Instead of her body fighting the new organs, her new organs would fight her body. He won’t list her until she gains weight. Emily is allergic to her nutrition (tpn). They have a new type that they use for people like Emily. She will finally be able to gain! He’s hopeful that she’ll gain enough by January. He will list her soon. She had two tests this week to see if she has 4 large, open veins for surgery. We should hear tomorrow what the results are. She had 56 tubes of blood drawn as well. Emily, Peter and I spent a couple hours with the transplant coordinators and social worker. Emily signed papers. They explained their process and talked a long time about the recipient and their family. After 6 months, Emily can write to their loving family. That part is difficult, but yet so beautiful. Once the results come in from the tests, he can start the process to list her. He wants Emily to be there in a couple weeks, then again in December. They will keep a close eye on her. This is such a relief, and we are so thankful.
We started searching for an apartment or home. Not as easy as we had thought! Miami is a large city, rents are very high, and traffic is bad (the Lyft driver said its equal to Los Angeles). Living near the hospital isn’t easy. We found an apartment 5 miles from the hospital. It will take an hour to get there. Another option is a house. It’s 20 miles from the hospital, and a 90 minutes commute. We have our work cut out!
The help you’re giving us not only means so very much to us, but enabling us to get Emily a life she needs and deserves. Please continue praying for Emily. She’s facing the most difficult fight of her life. Pray that God continues being the largest circle.
We love you all,
Peter and Susie
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It’s been quite a while since I’ve written. You have all overwhelmed us with you love and generosity. Our hearts are filled with joy and comfort. We thank God for each of you.

Tuesday is a big day for me. The insurance battle has been constant and angering. Thankfully Tan Parker, our State Representative, has stepped in and fought for me. He’s given countless hours of his precious time. On Tuesday, Dr. Tector and the medical director from our insurance company will speak and hope to have approval by the end of the day. Governor Abbott is prepared to help us. It’s been an incredible education to see how insurance companies work.

I’m so tired, I’m tired of waiting, I’m tired of the fight for what is right and I’m just plain tired. It’s been very hard for me to wait, I’m in such pain, nutrition is difficult, every day seems to bring a new challenge. I want so badly to live life, to have a job, to be with friends, to have independence, to eat. Hopefully Tuesday will bring me one huge step forward.

I will keep you updated. Again, please accept our thanks. We couldn’t go forward without each of you.

Love, Emily (and Peter and Susie) xo
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Words can’t express our thanks to you. We are overwhelmed by kindness, generosity, love and prayers. This weekend, our town is doing a fundraiser for us. We are grateful, and humbled. Emily is having periods of intensified pain, but a couple good days. We sure love and hang on to these times! The insurance battle continues. There was a nice news segment on WFAA last week. Emily has very strong leaders behind her. We’re so blessed! Please continue prayers for God to control this battle, insurance and illness. We love you all, Susie
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This difficult time in our lives is being made so much easier through all the generosity and love for our family. Although we haven’t had the opportunity to thank you yet, please know how loved you all are for your gifts, prayers and love.
We are still waiting on insurance approval. I’ve had two denials based on the absence of a CMS certificate for the intestinal transplant department. Our hope is that the insurance company will waive the absence of the certificate and approve me this week. We’ve been blessed with the help of an amazing surgeon who’s rising above it all and fighting for me. We also have the help of the former mayor of our town, our State Representative, Tan Parker and the office of Governor Greg Abbott. We’re in awe of all the help we’re receiving. Tom Hayden, our former mayor and Tan Parker are putting together an amazing fundraiser in our town on September 2nd. This has all been humbling and heartwarming to see how well loved we are.
Prayers are needed to help me get the insurance approval I need this week. I need to get there soon, I’m really having a hard time.
Thank you for all your love, gifts and prayers. Mom, Dad and I love you all,
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$20,742 of $65,000 goal

Raised by 165 people in 5 months
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