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My Dad Is In Remission and His Drs Think I am CRAZY!

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My dad had a very large tumor wrapped around his esophagus. He was treated last summer with massive amounts of chemotherapy and radiation. Throughout the course of his treatment he lost the ability to coordinate his breathing and swelling and eventually lost the ability to eat. The surgeons inserted a PEG tube in his abdomen for feeding. I was given very little instruction on how to care for the PEG tube and had to do much research on my own. After more than six months after PEG tube insertion the skin growth around the tube has recessed into his abdomen about an inch and I have to dig down in there with a tip qtip and saline to remove the crust. He has been complaining about pain in the PEG tube stoma site for weeks and they are saying that discomfort is normal however, they do not know my dad...he has a very high tolerance for pain and if he complains about pain and his facial expression is denoting a 2 on a scale of one to ten you can very well believe that the pain level is actually a 7. After so many months of having the tube and being very careful with it and regular as sterile as possible flushing and cleaning of the stoma this amount of comfort does not seem realistic. I also do not recall anything ever frightening my father but this discomfort certainly seems to be causing him high levels of anxiety. I read that care for the tube includes pushing the tube in and twisting the tube a quarter turn every so often is required to prevent the bumper from becoming buried or partially buried. He said he had been doing this all along however yesterday I found out that he misinterpreted the instructions and has not been doing this at all. My concern is that the internal bumper (as he has no balloon) is either beginning to become buried or has caused an internal abscess from grounding around on the internal wall. When I was showing the surgeon's nurse yesterday that I was able to push in the tube slightly and pull it out slightly .. upon pulling it out a decent amount of thick yellow pus pulled out with the tube. Without even looking at the pus and the nurses eyes still fixed on the computer I told her about the pus and she blew me off saying it was normal stomach discharge. This pus is unusual and I have never seen it come out of that site. It is the same color appearance and consistency as the yellow pus that would drain from a stuff infection upon slicing it open. What really raised a red flag in my mind is that the nurse had no idea what I was talking about when explaining preventing buried bumper syndrome by pushing the tube in an inch the turning it then pulling it back out and sliding the external bumper support back into place. They have also fixed the external bumper support so tight that I am not able to slide it either closer to the skin or further away so that i can do the bumper maintenance. On top of all of this every time I clean the now hole where the stoma is that is filled with crust up to about a 1/4 " down ... he tries to say it doesn't hurt but his body reaction tells me differently and he makes me stop halfway through the process. I also have other concerns about his chest X-ray results showing pleural effusion and consolidation because his oncologist basically guessed that the consolidation was scarring from radiation but I read that this type of consolidation doesn't show until about six months after the radiation and the consolidation was showing towards the end of his radiation treatment. The oncologist and radiologist disagree on interpretation of the reading as the radiologist interpreted the consolidation as aspiration pneumonia. There have been no follow ups on the consolidation or pleural effusion to discover what is causing the consolidation or what the consolidation is as it could be many things or what is causing the effusion or if there is collapse or partial collapse of the lung or both lungs. Their interpretations and diagnoses are based upon what is typical of his condition and not of actual follow up testing. I researched the consolidation and pleural effusion on .gov sites where I was able to read case notes and view ct scans of patient histories with near exact findings in the lung and pleural spaces and every one of the radiologist suggested followups with specialists because these conditions can be caused by many things and are all potentially life threatening if not treated properly. My lack of faith in these Drs also stems from my dad having classical symptoms of lung cancer for at least two years that he presented to his primary care provider and of course they were treating him for something other than lung cancer so they misdiagnosed. The only diagnostic tool as far as imaging is concerned that they implemented prior to the lung cancer was a chest X-ray and it is well known that a chest X-ray which is normal in regards to seeing a tumor is not even close to definitive because the mediastinum can hide extremely large tumors which is what happened in my dads case. He had a massive tumor wrapped around is esophagus and every doctor advised us to call hospice because he was not going to make it. The only dr that felt he could live was his oncologist (a brilliant man) my dad is now in remission. However, his doctor is a specialist in cancer and not a specialist of the lungs and pulmonary system and neither is the radiologist that read his X-ray. All of the doctors at the hospital are pretty much fed up with me. They are uncooperative and the nurse for the gastroenterology flat out refused to swab the pus and test it or to fix his external bolster to his tube and they were also supposed to fix the plug on the end of his tube as he accidentally ripped the rubber tab off of the stopper so we have to dig out the stopper every time we have to feed him. Everything I have read about peg tubes is that the doctors should be highly suspicious and investigative of anything that the patient complains about or seems of which they are not. If anybody has any suggestions please I will be more than happy to take advice thank you and God Bless.

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You need to find someone in the medical system to be his advocate.  I'd work the oncologist ("a brilliant man") and call or message his office with the text you've provided.  See if that can get traction.

I don't know anything about PEG tube problems but I think puss is an adverse indicator.  Pain on movement should also be.  A simple wbc blood test ought to show the presence of an infection.  You think his GP would run this test?

I don't have any further ideas.  Anyone else have suggestions?

Stay the course.


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  • 2 months later...

On Peg tubes , I as a veterinarian have used them a lot in cats that's that were not eating. A Peg tube was placed as a last resort to help these cats . There is a bulb in the stomach that that is supposed to press against the abdominal wall.On the exterior the skin is protected by a patch to keep fluids from entering the body. We don't move the tube at all as body wall movements prevent adhesions. I have had Peg tubes in for 6 months. The situation you describe is serious and in an animal the tube comes out! No excuse. Of course, I just have 41 years of surgical experience and a little common sense. Good luck to your father and you! God bless you!

Sent from my iPad using Tapatalk

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