A new chapter in our lives began. My husband keeps me going each and every day. I am thankful for him. Learning to sleep, shower and use my guide dog, Howard, with a tube and rolling backpack took a little finesse. Howard seemed to realize I needed to slow down and our adventures would take a little more time. Five months after the J-Tube, I was malnourished, dehydrated and very weak. It was decided that TPN needed to start. I had a medi-port placed in my chest a week later. The next day the home health nurse came to teach my husband how to care for me, operate the pumps and problem solve. My TPN is run 24/7. Too weak to lift the backpack, we purchased a rolling back pack, made modifications and still use it today.

During my journey with gp, I found that I have a ‘new normal’ life. The essence of who I am still prevails. It is that strength and my faith that has brought me to today.

As months went by, I realized that the TPN had not given me the boost it was suppose to I was still anemic, low on iron and vitamin D. At home hydration was added to supplement what I was not able to drink. My gastric pacemaker was placed in December 2008. However, the leads weren’t working and had to be changed in January 2009. I was thrilled at the prospect of having the nausea/vomiting reduced and slowly I noticed a slight difference. Today, it is helping and I can say I would have it done again. I go every few months to have it turned up and am at 8.5 currently.

This year I got sepsis, an infection in the blood, and was hospitalized. While there, it was discovered that my gallbladder had burst and I was off to surgery. It was extensive and 5.5 hours long. After the surgery, I needed three more procedures to retrieve gallstones that were still there. I spent the greater part of 3 months in the hospital with my husband and Howard by my side daily. Finally, my port was removed to combat the infection from the gallbladder that seemed to go from my abdomen to the port. After days of Vancomycin, I had a port placed on the opposite side of my chest and have been free of all infection. Hardly recognizing myself due to the extreme weight loss and weakness, I went home. The infusion department, one I had never gone to before, became a weekly appointment. I underwent 8 weeks of iron infusion. I am still anemic and fatigued. I see a pain specialist for chronic pain and now have Fentanyl patches with liquid hydrocodone for break through pain. He has been an invaluable part of my team of doctors.

At the next visit, my doctor reluctantly told me that I would never be able to eat and sustain my life with food. She hoped that I would get to the point that I could taste bites here and there. We knew that would be my answer, however, it was hard to hear. I had my J-Tube replaced. The plan was formed to slowly, at an increased rate of only 5 increases a month, to wean me back to using the J-Tube and wean off of TPN. It is expected the end of April, I should be able to eliminate TPN all together. My port will stay in to be available in the future for any TPN that may be needed, as well as, I will continue using it daily for hydration. To date, I have lost 100lbs.

I do not work, as I am multi-handicapped. This has not stopped me from taking an active role in the gastroparesis posts and sharing my knowledge and experiences, as well as, making many great friends. With my combination of conditions, there are many opportunities to help others. The members of G-PACT truly are enlightening and we are there for each other daily. Prayers and positive thoughts have brought me this far.

My hobbies, since losing most of my eyesight, are crocheting, camping, computers and reading books via my IPod. I make blankets for the Linus Foundation to place on the beds of children in hospitals. It is something my family has done for some time now.

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