[Debra]

The last FE reading was 3,000!!! Dad is currently on 2,000 mg of Exjade daily, but I've had him stop it for the last couple of days due to the stomach cramping, diahrrea and nauseau. I'm thinking he might need to be on a lower dosage and have contacted his hemotologist at Southwestern Med. Ctr. What is difficult for us is that the Hemotologist in McKinney doesn't know very much about AA. He is simply taking labs, monitoring cyclosporine levels, and ordering transfusions. The good part is that his office and the hospital are only about 6 minutes from my parent's home, versus going to Dallas.
Also, Dad's last creatinine level was 4.0 and his BUN level is 60 - both high. Our PCP has recommended Dad see a Nephrologist, and we have an appt. the end of this month. She also wants us to see a Gastroenterologist!!
I don't know about you, but it sure gets old spending so much time in doctor offices and hospitals! I am desperately trying to get the Hem/oc in McKinney to streamline our appointments - as it takes 4 to 5 hours by the time we do labs, see the doctor, and then go to the hospital to get T&C. Then the next day are the transfusions. We have a few days off, and the whole process starts again! Not a great quality of life.
I know our life is operating under a "new normal", but I long for the day when Dad can participate in life again. With his stomach issues, he is afraid to go anywhere. Due to the wheelchair and his lack of mobility - bathroom tasks are challenging outside of his home. He won't even come to my house!
I guess you can tell I'm in one of my low points right now.....