Emily's Transplant Fund
Donation protected
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
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
Organizer
Susie Cornes Klamkin
Organizer
Flower Mound, TX
