Help With Medical Expenses + Health

I fell ill with a "mystery illness" in September of 2016, and I abruptly stopped being able to hold down foods.  The condition would subside for a few days then worsen, eventually developing stabbing pain or dull persistent pain for hours, even days.  A few bites of food and even sips of water would take hours, cause intense pain, or come right back up several times within an hour (sometimes 8 hours later, in public).  I had no health insurance until January, and in February was sent to a specialist who ran multiple tests with inconclusive results, incurring high medical costs from copays, medications that did not work, and more testing in the ER and outpatient that brought more questions than answers.  Something would come up that we couldn't explain, or there would be a false alarm and I would feel better for a week or two, only to be hunched over in pain and 10 pounds less within a few days.  After months with a gastroenterologist he ordered an MRI and called me two days later, in June, with a "controversial" diagnosis.  My superior mesenteric artery is compressing the first portion of my small intestine, my duodenum, causing pain, intermittent partial or complete blockage, and a number of other health concerns associated with the compression and accompanying malnutrition.  This condition is known as superior mesenteric artery syndrome (SMA syndrome), an uncommon and controversial diagnosis affecting a reported less than 600 people since its discovery.  After that I was sent to four different surgery departments, the fourth of which agreeing to treat me.  In the hospital over the weekend, I was told to gain weight, something that has been impossible since September, or the angle of my artery can lessen and further compress, or I can become extremely malnourished again within a few days.  I am currently 25 pounds less than I was in September (this is 20% of my small frame).  Surgery is very high risk and has a low success rate (less than 50 percent) and involves rerouting my intestine outside of this major artery that cannot be moved or spread open.  The next step of conservative treatment is hospital admission and getting a feeding tube inserted so I can directly put nutrients in, surpassing the intestine.  I was pretty shaken up from 5 days in the hospital last week and am still in pain from the nasogastric decompression tube that was in my nose and throat for 3 days.  I had an NPO (nothing by mouth) order so I dropped almost 10 pounds despite having intravenous nutrition.  I am waking up most mornings still in pain, and don't know what is to come yet.  I can eat very little and am scared for the day I need admission and require the tube, but that is our next course of action.  I have been told symptoms often don't improve after weight gain along with the low success rate of the surgery, so this illness is "difficult."  The surgeon I spoke to was very honest and said many people don't want to deal with this because  they have tried before and didn't succeed or there are way too many questions and controversies surrounding how it presents itself and often doesn't resolve.  I have accumulated many medical expenses already and will accumulate more with the follow up appointments especially upon admission to the hospital for the tube, which will be the third admission since June.  I fear the unknown because of other stories I have heard, and know this might be the beginning of my story.  I need my life back and want to be able to live like a healthy 19 year old.  I have already lost a year of my life and its quality due to this condition that I can finally put a name to.  I have always been hesitant to ask for help but am in need of support in any way (even spiritual or prayerful if that is what you can offer).  It is an immensely stressful time and to have even an ounce of the burden shared is a huge deal since bills and copays for tests, specialists, and hospitals can often come six weeks (or later) after the fact and are always higher than expected, so I am always waiting for the unknown and falling behind.  I spend a lot of time on the phone with insurance and facilities getting things approved and getting referrals to the right offices, so this is sadly the only thing on my mind most days.  I carry the stress with me every day and my only hope, more that anything is to bring awareness and let at least another person know that this condition exists and so many are suffering in silence every day.  More research is needed and the medical system is very flawed, but in times like this if anyone can offer good thoughts or any kind of support to another, it is appreciated so immensely.  Any read of this story means so much and I more than anything just needed to get off of my chest how I am suffering from this every day but any kind thought lets me know I'm heard during this time and not alone.  Much love to everyone ❤️