January 2013 - Update (1/30)

It's 11:30 AM EST on Wednesday, January 30, 2013 and Scott is currently in the middle of his last (hopefully) surgery related to his PMP cancer. I'm sorry if this is a surprise to some/most of you. Details about his surgery follow this summary of what Scott has been through since his last update in late August 2012:

Shortly after his last post Scott moved back into his own apartment. His independence seemed to help strengthen his resolve to get better; he would take daily trips to and from Wegmans, the drug store, the bank and other local shops. Although he was slow-moving (still weighing in under 100 lbs.) he'd climb into his car and zoom about acting like nothing was wrong. Although, each day he'd return home exhausted and tired. He had a flight of stairs leading to his apartment, which were a challenge for him the first couple weeks, but after his strength improved so did his endurance. Still discouraged and feeling like there's nothing to report in his day-to-day his blog collected some digital dust.

From September to December Scott was receiving TPN as the primary source for caloric nutrient (administered through his pick line that had been in place since it was replaced at Strong -- I believe). Of course, this time period was the most difficult to navigate since his fistula was not healing, seemingly at all, which meant no food, no water, nothing but TPN during the evening and saline in the morning (or whenever he had symptoms of dehydration). He impressed his visiting nurses so much:  administering his own bandages, ostomy/fistula apparatuses and TPN/saline bags, that they stopped showing up--except when he needed new supplies.

The most frustrating part of all of this for him was that there was no forward movement in his condition. Because of the placement of his "newly shaped" stomach his ostomy and fistula apparatuses never seemed to fit well and would break daily. Needless to say, Dad dealt with a lot of shit. But he dealt with it hoping that the fistula would begin to close and someday heal.

It wasn't until late September that he began to notice blood coming from his fistula. He was assured this may be related to a vessel being used to heal the fistula (first step to healing!!). So he dealt with the blood; some days there was none, other days there was a lot. We kept thinking, blood might be bad, why is there blood, to which we received very little feedback.

One early morning at 4am in late October the fistula really began to bleed, so much so that Scott called an ambulance to the emergency room. It was ONLY here that they found a rather large ulcer or injury to the stomach that was bleeding profusely. He was immediately admitted to the OR and, after a laparoscopic procedure, was all stapled up--that was the end of the bleeding fistula.

Out from emergency surgery Scott grew tired of waiting to heal, growing equally tired of the "let's wait 2 weeks to see if you get better" approach. The doctors finally gave permission to try solid foods--what better time to begin eating again--a week before Thanksgiving! I'm sure he still didn't eat as much as he would've liked. He began to eat niblets of food, which rarely came out from his fistula but were in his other bag; he felt a bit more energy but was still following the nightly TPN schedule. Anytime he'd ingest water or liquids his fistula would immediately spring a leak--the bag would then leak or break, making the day that much more difficult to get through.

December brought new challenges related to his inability to eat. Since his ostomy was on his small intestine Scott's body could not get the nourishment it required. So no matter how much food he'd eat, and how many full or split-open bags he replaced he still was administering TPN. His energy levels began to plummet and jaundice set in--the doctor's noted this oftentimes happens to patients on TPN. The liver cannot process the TPN in as healthy a way as it should, and being on other drugs related to his recovery and kidney transplant, his liver didn't seem to last as long as was expected.

A plan to have Scott entirely off TPN as soon as possible was in place. Scott tried to revert back to J-tube feeds, but this did not seem to improve his physical health, and his jaundice worsened. In mid January he had a CT scan which identified a mass on his liver, along with cysts on his inert kidneys and his transplanted kidney. The CT was performed, though, to identify the size and condition of his fistula, his ostomy and general internal health. Dr. A in UPMC (PA) was contacted and two weeks later Scott is back at Passavant, and is currently (at this moment) under going surgery.

The prep for the surgery, they traced Dad's digestive tract to make sure all was in tact--the scans showed that it was. Although, there was confusion when some of the trace was expelled from his fistula. Still no word on that--could've been fluid unrelated to the enema.

Here are the details of the surgery: resect his stomach to remove his fistula, reverse his ostomy, biopsy his liver, and POSSIBLY remove his J/G feed tube (although not likely since TPN seems out of the question and he'll NPO post surgery). The surgery is not without risks though, primarily the answer to the question, how do they close him up? Since he is on prednisone his skin is very thin and less likely to hold a staple or stich, he is very mal-nourished because he hasn't been eating, which means less muscle for a potential staple or stich, and he has had multiple surgeries over the same sites on his body (lots of bad scar tissue).

They may employ several options to help out with his skin deficiencies: skin graft from his thigh, acellular matrix skin grafts (a type of bioengineered skin graft), anatomical re-placement of muscles (simply meaning working with Dad's anatomy to slight move good muscle to promote faster healing), and other forms of harvested tissues. If all other options fail is keeping the wound open (like last time) and allow the body to heal itself. This is a risk for infection, etc, but he's been through this before.

When the surgery is successful, Dad's larger bowels will be restarted and any ingested food will travel the length of his digestive tract. Fluid, too, will travel his large bowels now that his fistula will be closed. The biopsy of the liver should help resolve his hepatitis. With his bowels reconnected his body will retain more nutrients from his tube feeds (not TPN) and solid foods, he will gain weight and get healthy--this has been the end-goal for Dad and for all of us!