Back in Sept 2012 we went to the ER with abdominal pain and a fever, today we are facing a possible small intestine transplant. We have had a major decrease in income as a result of the medical conditions as carmen is unable to travel (large part of my wife's job as a consultant). Any funds received will be used to pay medical bills and pay for travel related to medical procedures. Here is our story:
Sept 2012, ER visit that resulted in a resection of his colon and a colostomy. On April 24, 2013 he is readmitted for colostomy takedown, 14 days post op, he perforated and had to go back in for surgery. This is when our life forever changed. It was a 12 hour surgery due to concrete abdomen, a full colectomy and a permanent ileostomy. The days that followed this surgery (May 11, 2013) were rocky and scarey. He was left under sedation, on a ventilator and with an open abdomen due to the intense swelling. He perforated 3 more times, leading to him being transferred to Shands hospital in Gainesville for specialized care. Once at Shands they were able to stabilize him, do a tracheotomy and do a skin graft to close the abdomen, but this was done around yet another fistula (perforation) in the small intestine. We left Shands on June 4th and was sent to a Long Term Acute Care facility. While at the LTAC, it was discovered that he had significant scarring that affected the drainage capabilities of his left kidney and a nephrostomy bag was attached. During all of this he developed 3 different DVT's (Blood Clots), 1 in each arm and 1 in his leg. All together he was in A hospital 70 days. We were released from the LTAC on July 4, 2013 and returned home. He is to consume nothing by mouth, all nutrients are thru an IV.
The weeks and months that followed have been filled with multiple ER visits and admissions for infections and Blood Clots. As a result of all of this back and forth and the round the clock care that he needs, Carmen has been unable to perform duties at work to 100%. Luckily She has the most wonderful boss anyone could have. Knowing that we need the health insurance, we have worked out a deal. She did take 1/2 cut in pay, but we still have insurance. Traveling is a major part of what she does (50-70%) and not being able to do this could have cost her her job, so thank you Jean, from the deepest depths of our hearts.
Where are we today?
We are back in the hospital at Shands in Gainesville, due to another infection of his central line that supplies his nutrients. The doctors would like to try and resolve the fistula ahead of schedule so as to limit the infections. This sounds really easy.... oh how that is so far from reality. We were admitted on Nov 9, 2013, they have done many, many, many test and studies to understand what his GI anatomy looks like. What they have found is that he has approximately 95cm of small intestine. A normal (unaltered) person has 304 cm or 10 ft. Tony has approximately 3 feet remaining. They are going to attempt to reconnect him, but we may end up on a transplant list; no one knows for sure until they sneak a peek and attempt the surgery. If he needs a transplant, we have selected Duke University. That is yet a whole other journey as he will have to be qualified and then placed on "THE LIST".
If you have ever met Tony, please join him and our family in this fight. If you have never met Tony, know that your donation will not just affect him but everyone who loves and supports him. With love and faith the human body can accomplish anything. If you would like to donate please know that your generosity will make a difference. There is no amount too small. Please keep Tony, Carmen and their family in your thoughts and prayers.