Share your story, ask questions, and offer support.
- By Little_Turtle · Posted November 28, 2008
- 0 replies
- I'm 16, have had gastroparesis and other stomach problems for almost 4 years now, and desperately want some sort of central line. Preferrably a port-a-cath, as it's more permanent and less infection problems ...
- By Little_Turtle · New reply November 28, 2008
- 4 replies
- Those of you reading this have probably read my previous posts and seen that I really would like and think I need some kind of central line, like a picc or a port. My veins have been horrible lately ...
- By Little_Turtle · Posted November 25, 2008
- 0 replies
- I'm 16, have had gastroparesis and other stomach problems for almost 4 years now, and desperately want some sort of central line. Preferrably a port-a-cath, as it's more permanent and less infection problems ...
- By Little_Turtle · New reply November 20, 2008
- 4 replies
- First of all, thank you guys for all being so supportive. Your messages have given me strength and hope when I needed it most. Anyway, I've decided to give up on the idea of a PICC line. Even if I did ...
- By Judi-1 · New reply November 20, 2008
- 2 replies
- I had an ileorectal anastamosis in April. Am having a real rough go of it. Being on blood thinners, has impeded my ability to heal, creating very bloody ulcerations along the connection site and rectum ...
- By thatkellogggirl · New reply November 20, 2008
- 5 replies
- I was wondering if anyone Knew how i could get my life story into the life letter that gets sent to people monthly by mail i want to inspire some people with the life long journey that i have had on TPN ...
- By thatkellogggirl · Posted November 20, 2008
- 0 replies
- hey everyone I just wanted to Know if you guys have had a chance to read the artical that i posted in the life line letter and if you have i would like your thoughs and tell me if it has helped you in ...
- By OkeyDay · New reply November 20, 2008
- 1 reply
- My daughter continues to experience hernias and this Friday will go in for her fourth hernia repair. The surgeon is talking about implanting an adhesion barrier composite (Gortex), however, he is hesitant ...
- By Little_Turtle · New reply November 15, 2008
- 6 replies
- I've given up on the idea of TPN. My mom and docs just wont do it. But I still want a PICC line. I was thinking, maybe if I could take my meds through there instead of through my j tube they might work ...
- By Judi-1 · New reply November 14, 2008
- 1 reply
- I have been getting this brown stuff coming from my exit site. It would resemble dried blood if it weren't coming out in a sort of gushy brown color and drying to form a sort of crust just outside of ...
- By abdyabdys · New reply November 6, 2008
- 4 replies
- I am looking for sugestions for a best type of tubing for the TPN infusion that does not cracks and that is more apropiate to my son's level of activity, he is 3 years old and very mobile, so at this ...
- By Little_Turtle · New reply November 6, 2008
- 8 replies
- I'm 16 and have had gastroparesis for almost 4 years. I currently receive all my nutrition through a gastro-jejunal feeding tube, but the feedings are increasingly painful and making my life miserable ...
- By JenD · New reply November 6, 2008
- 13 replies
- Hi all, I have severe gastroparesis and small bowel dysmotility and have been using a PICC for TPN for about a year now. My PICC is having some trouble (a stuck clave on one of the ports) and so we are ...
- By gracefulmama23 · New reply November 6, 2008
- 8 replies
- Hi everyone, This is my first post here. My son Aaron is a 7 year old boy with Mitochondrial disease. He is showing liver problems, His bili is 3.5 and has remained there for 8 dyas now. They stopped ...
- By abdyabdys · New reply November 5, 2008
- 1 reply
- I will like to know if any of you have heard of a condition named inflamation associated hemophagosytosis... My son Jason has heterotaxy syndrome, congenital heart decease, AVM in the lungs and has been ...
- By Frantik · New reply October 29, 2008
- 11 replies
- Hi there: Has anyone out there become intolerant to Dextrose while on HPN/TPN? If so, can you tell me what you did? As you have seen from past posts, I have been very sick for some time and have been ...
- By OkeyDay · New reply October 24, 2008
- 1 reply
- My daughter, Tierney, is being forced into enteral feeds due to the constant infections from her central line/gut. We have attempted to put enteral feeds on hold until after she has graduated high school ...
- By OkeyDay · New reply October 20, 2008
- 8 replies
- I was curious if anyone has any tips/tricks to keep a central line open when it comes to drawing blood back for tests (e.g., something better than TPA ...
- By nikki242 · New reply October 17, 2008
- 3 replies
- Hi all. After dramatically failing J tube feeding, I am moving to TPN. I'm just wondering if anyone has any particular supplies, tips, tricks, etc they would like to share to make this as easy as possible ...
- By stekcsf · New reply October 2, 2008
- 5 replies
- do you poop when you are on tpn only? My daughter does nothing by mouth- only tpnright now. Also can anyone help me understand when we use TPN I thought it went all through the veins....but does it go ...
