Topic: Disability Compassionate Act

Gary and I would like to thank anyone/everyone who posted about the Compassionate Act.  Gary applied for disability online and was given an interview the following week.  Our interviewer was wonderful!  He did everything he could to make the process efficient and persuasive on our behalf.  He even informed us of the possibility of receiving retroactive payments and assisted Gary's employer in filling out the form required of him.  Within 3 weeks of the original interview, a deposit was made into our bank account for full payment going back to the very first day Gary was hospitalized with jaundice (minus 5 months worth - the required waiting period).  This gave us a tremendous boost of spirits!!
Gary is still suffering from the results of his Whipple(Dec. 2007), chemo side effects(FOLFOX), discomfort from the drain for a pancreatic leak that just won't heal, huge painful hernias, enormous fatigue and loss of 80 lbs.  He is scheduled for surgery at the beginning of April to repair the leak and hernias.  Our spirits remain high though!!  This website has been a blessing - I read it daily and pass information onto Gary.  We have also started Dr. Quillin's diet and are having good results.  So...thank you to everyone who has helped us through our journey into the unknown.
God bless each and everyone of you, and we pray for all of you.

Elaine and Gary

Live each day to the fullest

Re: Disability Compassionate Act

Hi Elaine, this is Elaine. So sorry to hear that Gary is still having a difficult time from the Whipple.  You would almost not even know Teddy had one. About 6 weeks after the second Whipple, Teddy developed a leak and after a CT Scan it was discovered that the tiny leak was at the resection and  they hated to go back in again. The doctor asked if he was game to go into rehab for a month on nothing but an IV. They felt that by keeping the area "dry" the hole may heal itself and lo and behold it did. Sure is the pits when surviving the Whipple you then have to go through all this. Boy, these guys are pretty strong, yes? Good luck to you and Gary and please keep us posted.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Disability Compassionate Act

Thanks, Lainy.  Gary also went the "dry" route for 6 weeks.  Then they put him on heavy duty antibiotics daily thru a PICC line for 3 months - wanting to put off anymore abcesses from the leak.  NOTHING has stopped the leak - the first one not to heal itself in 15 years of our dr.'s practice.   Recently Gary's CA-19 numbers have risen slightly but consistently.  Nothing shows on the CT scan, but he is on chemo again.

It's been a long 14 months.  All of Gary's problems since surgery are the result of the first incision getting infected, having a second surgery to repair that, then  having a wound vac for months, along with the leak, drain, numerous abcesses and hernias.  So many things have been put on hold over and over.  Radiation, chemo, hernia repair surgery, ability to get any exercise, eating and digestive problems.  Still we feel lucky for even being able to have the Whipple in the first place - so many others can't.  It's nice to hear that most people don't have such a difficult time getting over the surgery.  When we asked our dr. if the drain left in after this next surgery(April) would heal correctly, he replied that he can't believe lightning would stike twice.  CC seems so unpredictible that I'm not so sure about that, but we continue to be hopeful, have a wonderful support system, and rely on the wisdom of so many people on this board for answers and encouragement.

Live each day to the fullest

Re: Disability Compassionate Act

OMG! You both have really been through it. We thought ours was bad. They aborted the first Whipple after 4 hours then Teddy got a double e coli infection which almost did him in. 3 weeks after that he had the 8 hour Whipple. He always says why does everything happen twice to him. Elaine, don't you agree that no one can believe both these guys are still with us? Doctors say that all the time to us. Now we are fighting a right ureter that was destroyed by the return of the cancer. We got the dam spot out with radiation and cyber knife but the ureter is damaged. The Urologist can still put a stent in but down the road he will not be able to due to scar tissue. So it will be back to the nephrostomy tube and bag forever. Like Teddys says though as long as he can golf he will put up with it!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.