one day at a time

It is Saturday, July 31 and I am back at the apartment. I have been forced to make the feeding tube my friend and it came with me. Nazi Nurse Steve makes sure I get every single drop before he disconnects me. (It runs for 12 hours and provides 1000 calories.) It doesn't seem like much but my weight is up to 120lbs. Hallelujah!! I still eat during the day. It is sometimes difficult but I try anyway.





I left the hospital Thursday evening. It felt really good to be at our Florida home and the first thing I did was walk Buddy around the gator pond. He was pleased. He loves PJ and continues to go from one of us to the other. That's alright, I am confused as well.





Current standings in the medical situatition: Omaha has declined us! They will take us on as far as evaluating the need of a new liver, but "there does not appear to be any stomach or intestinal problems." It does not seem to matter that there is no way the liver can be transplanted without the removal of the adhevesives that have grown in and around the stomach, or the intestines. Its all or nothing. The great news is that Kaiser and Dr Pauley's group are really on our side and fighting for us. They have not given up on Omaha.





Our other hospital of choice is University of Pittsburgh. Dr Pauley is attempting to talk to them but I will be very low on the MELD list for a liver. There are many folks here waiting for a liver with a fairly low MELD score. I was listed for 3 weeks before I got my chance but God has another plan. I am not so sure that Philadelphia is in God's plan either. So we wait day by day.

The final straw would be back at UCSF, Dr. John Roberts says he can do the surgery, I am not so sure he has ever done one before and besides I am back to waiting 3 years, which means I may not make it that long. What to do! What to do!! We certainly do not know and have hopefully put it all in God's hands.

On a more positive note I am feeling stronger everyday and can not wait to get back in to the gym. I want so much to have some sort of normalcy to my life. I just really want to get rid of this water weight and look somewhat normal. Besides it throws my balance off. I want to swim, to ride, to hike and this winter to snow shoe.

well, I think I will close out. I am falling asleep

Special thanks to Julie, Albert & Ajay for the beautiful, flowers and fun. May a liver come real soon to Julie, another thanks to my cuz for his funny and inspiration, emails thank you from the bottom of my heart.. Then special thanks to my very good friends from the POS who drove all the way down to see Buster & Zoe. They even sent me a towel with their scents on them. You guys are the best. Thanks from my heart to the John Nelson family and all of the guys down at the station. Thank you Fred & Jennette Kratiz who have so lovingly taken us in to their hearts. Jacksonville would not be the same without you both. Thank you for all the concern and support from the Mayo Clinic Transplant Support Group. You guys are the best and we wish all of you a future of health.

Thank you for letting voice my "thank you." T hank you all for reading my story and I love comments. Thanks Doug, Rob's friend, please continue to read and comment it helps so much. One more last note... "HEY, I wish we were there with all the folks at the Hankins Reunion. Please send photos and know that we are there in spirit. Besides we will be there once I am healthy again. It is a personal goal of mine."

Love to all and stay with God. Steph & Steve