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Newsletters: Blake’s Story: A Tale of Faith and Endurance
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Blake’s Story: A Tale of Faith and Endurance

Jim & Sarah Tennesen

 

Blake’s parents, Jim and Sarah Tennessen wanted to share their son’s story so it might “give others faith and hope to hang on through the tough times.”

 

Blake was born in February 1986 and failed to thrive. At six weeks he underwent surgery to correct a mal-rotated small intestine. The surgeon said he’d grow like a weed after the surgery; but he didn’t. After scores of tests and a second surgery to look for adhesions, he was put on TPN. Pseudo-obstruction was the assumed diagnosis.

 

The TPN allowed Blake to thrive and smile and play. It was a blessing. For twelve years he did well with only occasional hospitalizations. My wife Sarah was excellent with catheter care, so catheter problems were minimal. The broviac he has today has lasted since March of 1992. He attended school and had a pretty normal lifestyle. Our family traveled and really did not see the TPN as much of a problem.

 

However, in August of 1998, Blake’s eyes started showing a yellow hue. We saw specialists and they determined that Blake’s liver was in early stages of failure. We tried to augment Blake’s TPN with enteral feeding, but Blake’s pseudo-obstruction was so severe that we could not drip feed successfully.

 

The Transplant Option

Our gastroenterologist recommended a small intestine transplant. Like any other challenge, we hit the books and the Internet to learn all we could. We were referred to the Lied Transplant Center at the University of Nebraska Medical Center in Omaha.

 

We went to Omaha on November 16th for an evaluation. At this point Blake’s skin was a deep yellow color and he had only enough energy to stay awake for three or four hours a day. He’d been unable to attend school or leave his room much since mid-September.

 

The Lied Transplant Team accepted Blake as a candidate for an isolated small bowel transplant and put him on the waiting list. The anticipated waiting period was from three to six months. We headed home to Wisconsin, about 430 miles away, and waited for the phone call. We prayed a lot.

Less than four weeks later, the call came just after midnight on December 8th. We chartered a plane and arrived in Omaha a few hours later.

 

Blake’s surgery was successful and he spent roughly one month recovering in the hospital before being released to an outpatient status. Seven weeks later, on February 26th, Blake was able to leave Omaha and return home. Blake’s liver functions returned to normal less than six weeks after the operation!

Blake’s transplant has given him a second chance at life. (TPN had given him his first chance) He is presently getting about 75% of his nutrition by drip feeding enterally and the rest by mouth. He is slowly adjusting to taking more nutrition by mouth, but after 13 years of not being able to swallow without getting violently ill, it will take some time.

 

Small bowel transplants are becoming more common and success rates are encouraging (see chart below). Our insurance accepted the procedure as non-experimental and covered the expenses.

If LifelineLetter readers have questions, they can contact us at 1421 River Heights Rd., Menomonie, WI 54751; (715) 235-7976; tennesse@win.bright.net.

Pediatric Transplant Survival Rates Better Than Adult

Patients with Intestinal Transplant, Any Age

 

1 Year Out

5 Years Out

 Patient Survival

72%

48%

 Graft Survival

64%

40%

Children with Intestinal Transplant, Age 2 to 17

 

1 Year Out

5 Years Out

 Patient Survival

75%

68%

 Graft Survival

67%

60%

 

Ninety three percent of the survivors (51 patients) are home, fully active, and completely off TPN. Two survivors (3.5%) are on TPN because of chronic graft dysmotility, and two survivors (3.5%) are receiving partial TPN while recovering from rejection episodes.

 

Taken from the “Evolution of Clinical Intestinal Transplantation: Improved Outcome and Cost Effectiveness,” Transplantation Proceedings, 31. (1999)

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9/26/2016 » 9/30/2016
Malnutrition Awareness Week

5/6/2017
Oley Regional Conference

This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.

 

Updated in 2015 with a generous grant from Shire, Inc. 

 

This website was updated in 2015 with a generous grant from Shire, Inc. This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.
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