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You may e-mail me at bluelightningjeep@earthlink.net and I will do my best to reply. My medical bills are expensive, so if you feel like you would like to help in other ways, please consider donating to my transplant fund. Any and all support, prayer, and care is appreciated! National Transplant Assistance Fund for Carissa Post-Surgery Report:
Wednesday, January 16, 2008 11 p.m. December 10, 2007 Sorry it's been so long since I updated! A lot has happened, so this will be a long update. The day after the last update (June), I went in for a routine biopsy and it was discovered that I had severe thrush. So, we were not able to go home as planned! I began treatment for that, and three days later I went into rejection. I was admitted to the hospital and treated for that and fortunately I fully recovered! I was able to return home the following week, but was only allowed to stay home for two weeks. The three month plan was out the window unfortunately! In July I began having major problems with sweating, fatigue after eating, heart palpitations, shortness of breath, and a feeling as if I had run a marathon after my meals. After testing for hypo and hyperglycemia, eventually in October it was determined that I have dumping syndrome. This condition often appears in post-abdominal transplant patients. As a result, I had to make some diet changes which include small, frequent meals, no sugar, no liquids with my meals, and some other things. I have had to learn how to modify my meals to cut out sugar, and force myself to only eat small portions in one sitting. The latter I am used to as a result of years of GP of course! I've been a grazer since 1994! Currently, I am doing pretty well. I am VERY happy that I no longer have my ostomy and can go out in public for the first time in years without bags, feeding tubes, IV lines, or being tied down to any medical equipment or having to drag around medical supplies! I still struggle with a lot of pain related to osteoporosis and probable fibromyalgia, and am very tired a lot, but I fighting through it. My biggest ongoing problems include SIBO (small bowel intestinal overgrowth) so I am on treatment for that on a regular basis. I'm still on 21 different meds 5x/day, but seem to be tolerating them well. My steroids have finally been decreased to a level where I am comfortable. Although I still experience shakiness, jitteriness, and confusion at times, it is fairly infrequent and improving. Since July, I have begun to get involved in various activities again and starting to rebuild my life. I jumped back into G-PACT as president/webmaster and the growth has been incredible. We have a number of new volunteers, FR programs, PR events, and incredible ideas and increase of awareness. The word is really getting out there, and G-PACT continues to be the leading non-profit battling on behalf of patients with gastroparesis. Check out our new activities at www.g-pact.org. In addition, I have become involved in a weekly Bible study with some friends, and joined the KidMin team at my new church plant in Harrisburg. I am a greeter...and other things! I work wherever I am needed right now, and I LOVE being able to interact with kids again. I hope that I will eventually become well enough to pursue my degree in Art Therapy so I can work with kids on a special level on a full-time basis. I also hope to begin working on illustrating some children's books again in the future, but currently my energy/healthy time is eaten up by G-PACT...my other passion and one which has more immediate needs! Recently, I've spent most of my "free" time playing Webkinz! Call it an addiction....!!! My other recent hobbies have included reading the "Left Behind" series, Gamecube (of course!), Spunky (guinea pig), redecorating my bedroom (lime green paint!) and re-arranging it, cooking, and chillin' with my online friends. I had a good Thanksgiving and enjoyed spending time with my nieces and nephews. Starting in September, my doctors allowed me to go home for four weeks at a time. In November, I was told to go home until after the New Year! his is the longest I have been allowed to stay away from Pittsburgh since Dec. 2004! It's nice to not have to go so frequently and I feel like I ca finally settle down and move on with my life. On Jan. 9th, I will be having surgery to have my abdominal muscles closed. Because they were not able to close them during the transplant, I have developed a hernia, I look pregnant, and it causes me a lot of back pain. Although the surgery is a difficult one, I am looking forward to completing the final surgery in the transplant process and hoping to receive some relief from my back pain as a result. We will be staying in Pittsburgh for 2-3 weeks for this operation. Please pray that it goes well and that God provides us with the money we need to stay, strength for my mom as my caregiver during this time, and that the surgery will be productive and not create new problems. My biggest fear is how badly I react to medication, so please pray that I will do well and will not need to take the medication that causes me so many nasty side effects. Thank you for your continued support and concern for my health. This year my biggest "thanks" on Thanksgiving was that I am grateful to be a year further than I was a year ago. It's always encouraging when I am able to start doing something I haven't been able to for years, or see any change towards improvement in my health. I am grateful to be alive and look back two years and realize what an amazing miracle God has performed in my life, and how far He has brought me since then. Thursday, June 6, 2007 - 10 p.m. We (Sharon & Carissa) returned to Pittsburgh last evening. Carissa was allowed to go home for two weeks since her fever went away with the increased dose of Cortef. GI doctors were out of town, so her enteroscopy was postponed. Carissa has felt increasingly better while home. She was anxious for her dose of Cortef to be lowered because she couldn't sleep, but did well overall otherwise. Today Dr. Kareem released Carissa to go home for three months! After being in Pittsburgh a minimum of every two weeks for the past two and a half years, we were amazed and incredibly excited. Needless to say, everyone in clinic heard our good news on our way out the door. Carissa is scheduled for an upper endoscopy and biopsy tomorrow morning at 8:30 a.m. We know that we could possibly get a call that would send us back to Pittsburgh, but we will head home trusting that all is well. It was wonderful to see that Jessica is doing well. She seemed like her old self! Gary was as hipper as we have ever seen him. He entertained us with his excitement about moving to Georgia in September. We believe that Carolyn received a second transplant today. We pray that it will be successful and that Carolyn and Eimy (sisters) will soon be able to go home. Gretchen is back in the hospital with rejection. Her sister gets married next week, so it is tough time for Gretchen and her mom to be away from home. We are praying for them! Karen looks wonderful! She just got out of the hospital today and is doing so much better. What wonderful news! We continue to pray for Glenda as she waits for another transplant. She has been in Pittsburgh since December and has been in the hospital most of that time. Our hearts break for her. Natalee lost her transplanted pancreas. She now faces lifelong diabetes or another transplant. We will enjoy our time away from Pittsburgh, but our friends won't be forgotten. We will continue to pray.
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Life on a Feeding Tube |
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