CancerCompass message board discussion started by littleone on 4/25/2008 http://www.cancercompass.com/message-board/message/all,23414,0.htm Sun, 06 Jul 2008 00:00:00 GMT Sun, 06 Jul 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Perhaps I should have begun posting some time ago but here's my family's story: Aug. 16, 2006:  my father received a laproscopic espophectomy at Mt. Sinai in Manhattan.  Top surgeons and all that who said everything went very well during the surgery only they didn't take a piece of his colon to replace the esophogus as was planned. They left us in the waiting room saying that a couple of weeks should see him home if all goes well. It didn't.  April 25, 2008:  My father has undergone treatment in seven different rehabs and facilities from Kingston, NY to Flushing, Queens.  Before out current dire straits, we did see some success in rehab.  In January of '07 he had completely weened off the ventilator he was on for six months. Things were moving along except for the horrific fact that we were told there was a hole (fistula) where he stomach had been pulled up to his throat and therefore we couldn't introduce food or liquids back into his body orally because he would aspirate.  While painstakingly waiting for the result of various swallowing tests (which took months) his feeding tube became severely infected and he became septic nearly going into kidney failure.  He was placed back on the respirator and brought to a hospital, undergoing a hernia operation on top of everything else. Thus began the series of several different rehab centers and 4 differently placed feeding tubes, none of which have worked to date. (we even took him back to Mt. Sinai to his surgeons who performed the initial surgery:  they basically shrugged their shoulders and said "there's nothing clinically wrong with him.")  Due to my fathers pulmonary and digestive issues NO DOCTOR will assume responsibility for him, he is at the mercy of the system. So here's our catch-22 currently.  He has been on TPN for over a month, which has been great, he's gained some weight and his head is clear.  Though no place has successfully been able to place a feeding tube in that works for some time, EVERY  physician insists that he needs a new tube. That this is the course of action we need to pursue.  My understanding is that the danger with TPN  (total  parental nutrition) is that once a patient is on it for too long the digestive system shuts down and  the patient will never  eat again. We have been unable to find a facility that will rehab him off the respirator while he is on TPN.  In short, in order to be rehabbed his body needs to accept a feeding tube.  My take is that perhaps after 1yr and a half of not eating that his digestive system has already shut down. Why else would his body consistently reject every tube he receives?   I have heard that you may live a very full life on TPN providing the patient is willing to understand they have restrictions.  How many more times do we insert a tube into this man who wants nothing more than to be home until it is said that it's not working? My father is young, 64 this year.  I am the youngest of five and about to be married in September.  He was supposed to be better by my wedding day for sure, but most days it seems like we'll be trapped in this bureaucratic medical system forever.  I just want to see him home where i know he'll be happy.  (we tried getting him home on a respirator but no place will let a patient go on a respirator and TPN).Has anyone else out there been through this many or similar complications after an Esophectomy?  Please reply if you have any related info to alternate digestive nutrition or TPN .My father is what we in our family call a Brooklyn streetfighter, he has come this far, and given the chance I know he'll make it home eventually.  We just need a good turn or helping hand, some doctor who cares enough to see him achieve his goal of 'just getting home'.  God Bless you and your families and thank you for your time. littleone Fri, 25 Apr 2008 00:00:00 GMT I feel terribly sorry for your Dad.  I was 58 when I went through my chemo, radiation and surgery, but I had the regular surgery with 3 big openings in my body.  The feeding tube.  I was given a feeding tube in the jejenum.  The duodenum, jejunum and ileum make up the small intestine.  The tumor I had was in the esophagus and top of the stomach, so they could not put a feeding tube in the stomach, which as I understand, is much easier.I was given special nutrition for 8 months.  It started 3 weeks before my chemo/radiation and continued for 7 months after my surgery.  That was when I really began to eat very well and had gained my weight back.  When they put in the J-tube, I had what was called an illius.  My intestines shut down.  My intestines "shut down" again after my surgery.  I was given Reglan (metoclopramide)  to get my intestines working again both times.  I only spent 2 weeks in the hospital, but my husband was a 24 hour a day/night nurse to me.  It took from end of May until September 1 until I began to be able to eat without gagging and vomiting.  I do have 1/3 of my esophagus left..  I was told that some people have so much of the esophagus removed that they must stay on a stomach feeding tube for life, but I don't know of anyone who remained on TPN for life.  The J-tube is very manageable, but does need to be replaced occasionally.  The radiation treatments eroded my first tube and it stopped working, so the doctor pulled it out and inserted another one right in the hospital without a problem.  I was fully awake and it was just a pull one out and stick another through the opening.See if you can find the surgeon who will discuss, in detail, what options your Dad has.  I agree with you that he has many, many good years left.  I am 4 years out from my surgery and am doing wonderfully. No cancer yet.  I was Stage 2B and had lots of difficulty the first year, but once I got through that....everything is very good.  I still have difficulty swallowing, but I have a decent quality of life.  Your Dad will too.  And, if he can get a J-tube...living with that is not bad either.   God bless you.  Let me know if I can be of any further assistance.  doingfine Thu, 01 May 2008 00:00:00 GMT Sorry,  I was Stage 2A and was on feeding tube for 11 months...not 8. doingfine Thu, 01 May 2008 00:00:00 GMT My husband is getting ready to have this surgery.  However, the doctor told us, that he would only have the feeding tube for about 2 weeks.  So I was shocked to hear you had it for 11 mos.  What else can you tell me about the tube?  Thanks!  Joy JoyFL1947 Fri, 16 May 2008 00:00:00 GMT