I apologize it’s been a while since I’ve posted. I’ve been so tired.
Here is what has been going on. As many of you know from my previous posts, I am completely dependent on TPN to get my nutrition and hydration. I have been dependent on it since September 2016. It has been hell to be quite frank. I’m grateful for it, as it has kept me alive this long. But honestly, TPN is more life prolonging than it is life saving. We’ve tried many things to get me off of it, but so far nothing has stuck. As you can imagine, with no food going in, no iron is going in. So I’ve been quite iron deficient anemic. Since January this has been causing my hemoglobin (the cells that carry oxygen throughout the blood) to drop. My physicians office considers 12 to be normal, mine is currently in the 8’s (was in the 9s last week). This has cased me to be extremely tired, and thus not updating and posting as much. Monday we are repeating this lab, and getting more in-depth iron labs. Hopefully the labs are not too terribly low, as I am also scheduled on Tuesday to get a PEGJ. For those of you who do not know, this is a type of feeding tube that goes to both the stomach and the small intestines. I have had gastric feeding tubes in the past and have failed miserably. We skipped straight from a NG tube to TPN due to rapid weight loss, severe malnutrition, repeated bouts of severe dehydration (despite home IV hydration), and the fact that my intestines are also at least partially paralyzed. Though my physicians are not hopeful that I will be able to feed into my intestines we are still going to try feeds, because lets be honest anything is better than TPN. Even if I am unable to feed into my intestines, I will hopefully be able to take my oral meds that help control my POTS (and hopefully retry some motility meds).
Thanks for reading.
Lots of love,