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It has been a while since I have been signed on to this site, I had been in hospice care, and luckily one of the hospice doctors was able to locate a medical center that was able to medically treat me with a central line, tpn and hydration that essentially has been keeping me alive. There are several surgical issues going on that make it impossible for me to eat and absorb nutrition from intake of regular food and water, so the tpn and the hydration infused via the central line has essentially been life-saving life support for me. The situation now is that I began to have problems with my central line, upper extremity thrombosis. And possibly superior vena cava syndrome. I traveled several thousand miles to the medical center which had been managing my tpn and which had placed the central line. They refused to even examine the central line and they only wanted to perform major abdominal surgery on me to clear up any surgical issues. Due to their unprofessional treatment, I decided to not consent to the abdominal surgery which they wanted to perform. Furthermore this decision was in part due to their absolute refusal to examine and diagnose the problems which I was having with the central line. They invited me to leave, return home, and go to my local emergency room. Lol. In any event I returned home as they were refusing to treat the central line issues. Now, they have abruptly and completely discontinued providing me with life-saving hydration and nutrition such as the tpn and the hydration which I had been infusing through my central line. While I was at their hospital, they insisted that there was no problem with the central line, and once I returned home they completely did a 180, and decided that there may be something wrong with the central line and they abruptly and completely have discontinued providing treatment and supplying medications and most importantly discontinued  the tpn and the hydration. They did not at any point say , hey come back here and we will take care of any issues that we should have taken care of while you were out here initially,  the doctors and hospital just essentially completely and abruptly discontinued my life support ie hydration and the tpn which had been running through the central line. When I request an appointment to come back to their medical center and have the issues with the central line addressed, they refused to give me an appointment.  So essentially I have been told that I have approximately 10 days to 2 weeks to live as severe dehydration will soon begin to occur. As a result of their mistreatment, I'm essentially suffering from malnutrition  and in the process of dying  from dehydration. This is all as a result of their refusal to take care of the central line issues while I physically was at their hospital and now their recent decision to completely and abruptly just discontinue treatment with tpn and hydration.

I have requested that if I am able to have the current central line replaced and a new one surgically implanted, will they then resume my tpn and hydration therapy and was unequivocally and coldly told no.

My question now is can a medical center legally and ethically discontinued medical management of a central line which they had placed, and also can they legally and ethically completely discontinue abruptly life-saving treatment via tpn and hydration therapy, which was essentially keeping me alive.??? Do they not have to give the patient a certain amount of time and continue any required Medical Care until I am able to obtain appropriate medical treatment at a hospital or Medical Center that is able to handle my complex medical and surgical issues??? Everyone I have spoken to including highly regarded doctors and surgeons, have told me that it is completely unethical and possibly illegal for them to have abruptly discontinued my treatment, such as management of any issues regarding the central line, and any and all issues regarding the life-support and life-sustaining hydration and tpn. They have placed me in a very bad situation as it takes some time to become established with a new Medical Center and Physicians who will take over the situation involving the central line, and then taking over complex treatment with the tpn and hydration. Or hospitals  do not want to be liable for trying to fix the aforementioned Medical Center and the other doctors mistakes. Meanwhile, I am suffering the negative effects of them not repairing the central line while I was there at their facility, and now they nor any local doctors are willing to infuse hydration or tpn through the existing line until it is dealt. Also, there is the issue of finding a medical center and doctors that will be qualified to take over the life-sustaining treatment with the hydration and tpn. I feel it it is extremely inhumane for them to have not treated my central line, and for them to have discontinued life-saving medical treatment using the tpn and the hydration which is required to essentially keep me alive. Any suggestions or advice would be appreciated and your comments regarding a medical center and doctors who would act in such an inhumane manner by discontinuing a life-sustaining medical treatment such as intravenous tpn and hydration would be welcome. The central line and hydration and TPN is required as I am unable to eat food normally, and my GI system cannot absorb nutrition and fluids, which as mentioned is the reason that the tpn and the hydration is so important and vitally necessary for me to remain alive. I apologize for the long post, and again thank you in advance for your opinions and advice regarding  a medical center  without notice abruptly discontinueing life-saving tpn and hydration prior to the patient being able to obtain appropriate care for this complex situation at a different qualified medical center which is equipped and staffed with doctors that are experienced in dealing with the major medical and surgical issues I am lucky enough to have.  And yes, I have been seeking medical care locally, but as mentioned, doctors and surgeons don't want to be responsible or take on the liability for trying to fix other doctors mistakes. 

 

 

 

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Hi Josh, 

First off, it is great to hear that you are still alive and kicking albeit still suffering horribly.

Next, do you have a lawyer? Seriously. I have never been very into law suits and attacking anyone for anything but this situation requires some rather decisive action and no one is going to listen to the sick guy...on the other hand, they will listen to a legal document sent using strong language and lots of threatening jargon about putting your life in danger, being liable for your death, going to the press etc.

I know of no other way than to pull out the big guns to get bureaucracies to wake up and take action. 

In the meantime you should get the Ombudsman or the patient advocate or whoever is available to you to get immediate action for you to be put back on TPN... 

As for the K pouch doctors...they are pretty used to dealing with messes...Seems to be their stock and trade. 

They can do miracles if you find one who is willing to touch you and attempt a k pouch on you. 

Dr C in all the way up in Canada and I doubt if they would allow him priveledges in the U.S. but maybe he might have a colleague down there that he could suggest... Can you send over his file to his office at Mt Sinai in Toronto, direct it to the IBD center and ask for Misty his nurse to handle things if he isn't around...they can take a while to respond but once they do they are very proactive...

Hang in there kid, I am rooting for you

Sharon

skn69

Wow Josh, that is a mouthful! I am sorry that you are having so much trouble. It would seem that you already have asked people with more knowledge about the ethics and legality of your treatment, so I don't think I can help you there.

Playing devil's advocate here, perhaps they felt your best option was to try and repair your reason for needing TPN. Refusing their recommendations might have meant that you did not need their expertise, since you can get TPN most anywhere. Do you not have any local doctors you see?

Realistically, the suggestion you received at the other center might be best and most expedient: go to your local ER. They can provide life sustaining treatment while you get established with someone else. It does not make sense to me to have TPN managed by a center several thousand miles away. TPN is not that complicated or rare. Sure, your medical and surgical history is very complicated, but it should not prevent TPN therapy. The local hospital can set you up with a treatment coordinator, etc.

I wish I had some fabulous advice for you. I am glad you are hanging in there!

Jan

Jan Dollar

Oh Josh, I am so sorry!!!! 

All I know of is the Cleveland clinic in PA and MT Sinai in NYC to be specialists. I'm alone and broke, needing a new pouch with no way to get one but if you have people to take what you've written and find the right doctor, start an urgent GoFundMe and use the doctors/ hospitals name in your claim so they are publicly seen- they will want to help. I really hope you have someone to help you do this advocating. Hang in there brother! You're not alone!

A

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