Posted: Tuesday, May 7, 2013 1:00 am | Updated: 9:08 am, Tue May 7, 2013.
By Jimmy Hancock / firstname.lastname@example.org
Two weeks since her heart transplant surgery, Sarah Brown, daughter of Pocatello City Councilman Steve Brown, has continued to travel a bit of a bumpy road.
During the weekend, doctors had to put a new abdomen catheter into Sarah to help drain fluids in that area. On Monday afternoon, however, things had become even more serious as Sarah began to show signs that her body may be rejecting the new heart.
“They are doing a biopsy to confirm that,” Steve said Monday afternoon. “They do that once a week anyway to check it for rejection because it helps them get a head start (in treating it), but this has happened so fast.”
Sarah was born with several heart defects and underwent numerous surgeries before she could even walk. At 10 years old, another ailment was thrown into the mix, one Steve said can occur in those with Sarah’s condition. Sarah was diagnosed with Protein Losing Enteropathy (PLE), a condition where the proteins are not absorbed in the intestines and it produces more fluid that must be flushed out. That causes swelling, diarrhea and vomiting.
While the PLE was able to be controlled for lengthy periods, Sarah did have serious bouts as a sophomore at Century High School, and again beginning in October of 2011, after a stomach virus aggravated the condition. Other side effects of the PLE have included serious scaring to Sarah’s liver.
But that last bout with PLE led Sarah, who had previously been treated at Children’s Primary Hospital in Salt Lake City for so many of her ailments as a child, to the University of Utah Hospital because she had become an adult.
That also put Sarah in front of a new cardiologist who specializes in working with adults who had heart defects as babies. Tests conducted by that doctor eventually determined a heart transplant could be performed on Sarah, an option that had not been available in the past, the family told the Journal in a story earlier this year.
Because Children’s Primary Medical Center, also in Salt Lake City, has those with the expertise to handle the transplant surgery under the conditions Sarah’s ailments bring to the table, the heart transplant surgery was performed there. Sarah had actually been at Children’s Primary since mid-March, when her condition worsened.
The surgery was performed on the evening of April 23 into the following morning.
On Monday afternoon, Steve said doctors believed Sarah may be in the early stages of rejecting the new heart. He said they gave him a couple of possible avenues moving forward if the biopsy confirms that concern.
“They are going to try an experimental drug that has been used on kidney transplant patients that actually blocks the damage that the immune system does to the heart,” Steve explained.
That’s just one of the possibilities. Where they go moving forward, should Sarah’s body be rejecting the heart, isn’t certain yet.
Should they end up using that experimental drug, Steve assumes it’s one that, because it’s experimental, is not going to be covered by his medical insurance, adding substantially to an already stretched budget.
“We used to joke about her being our million dollar baby, and now we can call her our multi-million dollar baby,” Steve said.
All humor aside, the medical expenses — even with what Steve called a good insurance plan — combined with living so many months in two places and with missing so many days in the office without pay, are putting a financial strain on the Brown household.
Friends of the Browns realized this and began to coordinate a fundraiser. They are hoping to raise $10,000 for the Brown family to offset some of the costs associated with Sarah’s illness.
The fundraiser will be a pulled pork dinner at the Mystique Theater, located at 158 E. Chubbuck Road, that will be catered by Texas Roadhouse from 5 to 9 p.m. on May 30. The event will also feature a live auction that will start at 7 p.m.
Tickets purchased by May 28 will be $10 per person or $30 for a family of four. At the door, prices increase to $12 per person or $35 for a family of four.
Advanced tickets can be purchased beginning on May 10 at the Mystique Theater, the Black Swan Inn, located at 746 E. Center St. in Pocatello; the Party Palace, located at 2830 Pole Line Road in Pocatello; and Brown’s Allstate, located at 611 Wilson Ave. in Pocatello.
Those wishing to donate items for the auction can contact Steve Rowe at 479-7706. Those wishing to volunteer their time for other things, serving dinner, ticket sales, entertainment or helping with the auction, contact Shauna Jemmett at 251-4566.
Those wishing to help but are unable to attend the dinner on May 30 can contribute directly at Citizen’s Community Bank where an account has been set up. Make that donation to the Steve & Julia Brown Donation Account.