First there had to be careful review of food allergies (true allergies being only peanut and seafood), and limits and guidelines (a lot of them, including continuing to run TPN at the same time).
But yet another food trial has begun and I am beyond nervous. Don't get me wrong, I want this to work more badly than anyone...this is my life and my health at stake. And with this last breakout it has shown me, unequivocally, that something is very wrong with the way parenteral nutrition is treating my body. I will be, if I am able to survive without it, ever grateful it had been around to save my life.
And if this trial fails, then I *am* grateful that it is around to prolong my life.
I've had almost six months of gut rest, and most would argue that at this point oral intake is not only a bad idea, but it isn't even attainable. That is input I have had to weigh and consider, and I have. I have sat with this thought, entertained the implications and shed tears over the thought that this may be correct.
Ultimately...I would never forgive myself if I quit trying.
When your doctors are at the end of your rope, some limit contact with you while others outright quit. The problem with this is that you start to form a sort of bond with these people...and if you are in and out and back in and escape in and from hospital as much as I have been you see and communicate with you treatment team than you do your own family and friends. So when someone just jumps ship, tipping their hat (I am imagining that they have a hat) and wave of wishing you to have a nice (rest of your) life, it's painful -- almost unbearably so.
I am being left with three and only three options since it is very obvious that J tube feeding is not even halfway in my best interest as the bile losses are insane:
- Learn ways that you can live and thrive with oral intake or
- Leave the state repeatedly (if I even find a way to afford to do so) for the rest of my life for transplant and follow-up, risk chronic rejection (which is a higher probability in someone like me with recurrent tachyphylaxis) and other side effects from surgery or other related therapies
- Live on TPN...which admittedly isn't going very well.