Hi Everyone,
It's been a year since I've posted 😧 and for that I am sorry. Life had been busy with many things (good and bad) that have went on and blogging just wasn't at the top of my list. So I am going to use Home Parenteral Awareness Month to kick start my blogging again. Home Parenteral Nutrition is IV nutrition given intravenously to those who can't absorb food orally for one medical reason or another. The goal of HPN awareness week is to raise awareness and educate others on the need for HPN.
Most of my friends and associates know the back story of why I have Short Bowel Syndrome, needed TPN for several years and now require long term IV hydration to avoid dehydration. But for those of you that don't I will give you the shortened version. In 1985 I was diagnosed with Crohn's Disease and over the next 25 years I had several flares resulting in surgeries that drastically reduced the amount of large bowel I had left to less than 10% but was able to function normally, raise our 3 wonderful sons with my husband of 25+ years, work full-time and enjoy a great life. For someone with a chronic disease such as mine, flares, obstructions, medications, hospitalizations and surgeries are some of the things that we deal with on a daily basis. By the end of 2009, I was experiencing periodic obstructions that would clear up in about 24 hours as well as other minor symptoms (fever, pain, etc) that I would ignore or blame on other things. On a Wednesday morning in late January 2010 started out like any other but by lunchtime a blockage came on more quickly than any other I had experienced before. I went home and tried to gut it out on my own as usual but by the next morning I knew I had to call my GI and head to the hospital. I spent the next week with an NG tube down my throat, on pain meds and being tested to see if we could determine what was going on. On Saturday morning, the attending GI came in and advised me that I needed an PICC line and Total Parenteral Nutrition (TPN) because I was malnourished and wanted to "beef" me up for my upcoming surgery. My sister, Angie, was with me during visit the GI consult and my subsequent freak out about his recommendation. I knew very little about TPN, how it was infused, central lines much less living with it but I gave my consent figuring that after surgery I would no longer need it and could get back to my real life. Wednesday morning was the day of my scheduled surgery but I woke up with the worst pain and stomach distension of my life (including childbirth and kidney stones!). Two days later I woke up in the ICU with an jejunostomy, enteral feeds (tube feeds through my remaining small bowel) and Total Parenteral Nutrition for life.
Over the past 7 years, I have been able to wean off TPN and stay off for 5 years but remain dependent on IV hydration because my remaining small bowel doesn't absorb enough fluids to keep me properly hydrated. My Crohn's is no longer in remission but is considered "mildly active" so I am on 2 medications to help keep it under control. My son's have grown from small children to teenagers and young men while Mike and I have celebrated 25+ years of marriage. I enjoy spending time with my family and friends and reaching out to others who I can share my experiences with and make them feel less alone. I no longer try to picture how Mike and the boys would survive without me but relish in the times we are together enjoying each others company. Without TPN, I might not have had the last 7 years to Live, Love and Laugh with all those around me.
Want a bracelet to show your support this week and all year? Send me a message and I will get one out to you!
