The unexpected twists and turns of life...
It all began for me with a good deed. My sweet, adorable, beloved 6-month-old niece had a terminal liver disease and needed a transplant to survive. I felt called to be her donor...for reasons I will most likely never fully understand I knew immediately that I was the one who was meant to be her donor. Despite my busy life as a wife, mother of two young children, and professor, I knew instantly that I would be a match. After extensive testing, I learned that indeed I was a perfect match, another clear sign of the course my life was meant to take since only about 3% of those who want to donate match and qualify. The transplant went very well, and my niece began her long and difficult road to recovery, armed with an incredible amount of strength and resilience. I too began the long road to recovery, having no idea just how much that surgery had changed the course that my life would take.
Almost immediately after the surgery I knew that my stomach was not right. The first three months were filled with nausea, vomiting, diarrhea, and a complete lack of appetite. We all, including my doctors, attributed all of this to recovery, but after three months it was clear that there was something wrong. Scopes, tests, and innumerable doctor's visits later my problems had names....GERD, gastroparesis, injury to the Vagus nerve....names that are now a part of who I am, whether I want them to be or not.
My life literally went from 90mph to 10mph overnight. From a frenetic working mom to a woman who spends most of her time alone at home, saving up her energy or her "spoons" so that she can put on a good show or her best game face for the family each afternoon and evening. From a professor who stood and taught for four hours straight to a professor who sits and teaches a four hour class in a seminar style, with the help of a doctoral student. From a mom who tried to do it all, to a woman lying in bed while friends decorate her house for Christmas, rake her leaves, and do odd jobs around the house.
And yet, oddly enough, I am happier now.....not every day, but most days. I am calm and at peace, and grateful that my niece and I are both alive. I am grateful for the babysitter who treats my children with so much love, and my husband who is far more incredible and competent than I ever allowed him to demonstrate. For the family and "village" who has stepped up to the plate in more ways than I can even name, and never made me feel even an ounce of guilt for asking for so much. And for two children, ages 8 and 6 who have shown me more maturity, empathy, and strength than I had ever imagined possible, as they make me "bathroom beds", bring me cool cloths, snuggle in my bed when I just can't even get to the couch, and give me innumerable hugs and kisses. And suddenly, even though I am now that lady sitting on the bench at the art fair next to several elderly folks with canes, I am smiling, because I am there, and that is enough for today.
People tell me that I am a hero; that I saved my niece's life. I really view it in the opposite way. Before the transplant I was overweight and did not take time to eat right or exercise regularly. I was moving through my life at such a rapid speed that I rarely stopped to enjoy the moment, felt anxiety almost constantly, and had no idea how to put myself and my family first and say no! I don't even want to think about where I would have ended up if my life had continued in that horrible way, and am thankful that I don't have to. My niece is alive and healthy and I am a new person...yes, my stomach is a mess and there are many days that I can't leave my house because I am so sick, but I am living a life of purpose, with my mind in the present and my heart filled with a renewed feeling of love and calmness that I could never have imagined.
I will continue to try every therapy, medication, and treatment possible to reach a point where I can wake up without feeling as though my body is failing. I cling to the wish that one day I will wake up and my skin will be pain free, the sheets will not hurt, my stomach will not be clenched in pain, and I will have the energy that someone my age should have. I work towards the goal of riding my bike again, taking my sweet dog for a walk, and running in the front yard with my children. I hope and pray for researchers and doctors to find something, anything to repair my Vagus nerve. But if that doesn't come, and if there is no fix, I pray for peace and strength, so that I will continue to find comfort in the good deed that I did and be humble enough to know that I need to ask for help, accept my situation, and get as much joy out of every moment of this life as I possibly can.
Comments
Jodi,
If I did not have such a similar story, I would not believe it myself! I too was diagnosed with GP after an organ donation! I donated my kidney to my best friend on September 20, 2007. I was diagnosed in April 2009 with GP, after months of vomiting, severe stomach pain, not eating, diahrrea, too numerous hospital stays. I seriously thought I was the only one out there with this story, until I read about you.
I can so relate to you because of the emotions that goes into making a decision to donate and then ending up sick as a result. My story began with my best friend almost 20 years ago. She suffered from polycystic kidney disease. When her father died of the same disease, I promised her that if she ever needed a kidney I would get tested to donate mine - never thinking I would be a match. Well, God knew that I was the match!
After the donation, my life (like yours) was never the same. Initially, I was diagnosed with Fibromyalgia. I just felt run down and my body hurt all over. But then the vomiting and all the other stuff started in December 2008. It took them 5 months to figure out what was going on. Like you, I have been on several medications, tried the botox injections, and nothing has worked. I now have a G/J tube that I use for nuitrition and for drainage. I have been told that I am not a good candidate for the gastric stimulator. I was recently told that my stomach has fallen back to where my kidney used to be. I am having surgery in a couple of weeks to have that corrected. They are going to attach my stomach directly to my small intestine to bypass by duodenum (sp?). They think this might help with the extreme nausea. I am being treated at the Cleveland Clinic. I love it there.
As for my friend, she had my kidney for 15 months before she went into rejection. Sadly, they had to remove my kidney a year later. But during the 15 months, she lived her life to the fullest. My dearest friend lost her battle this past November 11, 2011. I miss her each and every day. But I know that she is in Heaven and is my Angel watching over me.
The thing that gives me hope and strength is that I know that this was all in Gods plan from the very start. There has to be a purose for all of this. I just don't know how it ends. I just know that it did not end with her passing away. If I have to continue to live the rest of my life with this disease, so be it. it was worth her having a wonderful life for 15 months!
Take care!
Bonnie
Oh, Judi and Bonni,
I love you in the Christ, and I pray for you!
God is good all the time and He is with you all the time, too.
God Bless You and your families~~
in Chirst,
Angie
Oh my Gosh...I have been fighting this disease for years, and have heard about the gastric sleeve. I don't know if anyone is still reading these posts, but if anyone has any information please contact me through dha@iffgd.org!!! I am suppose to go to Barnes Hospital to TALK to them, but if there is a better place that WILL do the surgery, let me know...and how you all are doing. I hope you all are doing much better now!!!