Thank you Genera, for your reply to my post. I am so sorry to hear that such a young women as your daughter has gone through so much. It is wonderful that you are so optomistic and are there to advocate for her. I know the joy that Grandchildren can bring. We moved here to Ohio when my daughter relocated with her husband for hiis "dream job" and my Granddaughter was 14 months old and my Grandson was about to be born. Those babies were not about to be raised without Grandma and Grandpa nearby. Other than the health issues..it was a wonderful move annd each day is joyful when I see them.
Since we live in Columbus..we drove up to Cleveland Clinic to get another opinion on my husbands renal failure and they did concur as to the way he was being managed by the nephrolgist here. That was before my husbands bout with the hyperammonia. No one feels that he fits in with their specialty at this point. Nephrology says that the high ammonia level was NOT related to the kidney failure (I know better and have locked horns over this point) Hemotology says..not their problem and his anemia is better since he had 2 units of blood..Neurology..says the ammonia level wasn't that high and he blames any problem my husband has on his severe orthostasis. We have a appointment with a "liver" specialist..by not until December 7th.All the enzymes and the ultra sound were negative..but since they say the liver clears the ammonia from the blood..there must be something wrong with it that hasn't shown up and they need to look further.
I am so glad that you responded to me and have told me that your daughters Renal failure HAS resulted in high ammonia levels..I needed to hear that this really can happen.
My husbands Potassium levels have been fine and his Creatinnine has actually gone down in the last few weeks..he usally runs about3.4-3.7 and it was 2.7-2.9..go figure. We know that he will eventually have to go on dialysis..but the longer we can put it off the better..although I have a feeling that he may feel better when he finally does get on itt. He sleep a lot..some from medication, some from the kidney failure,anemia and some from depression and bordom..but if he sits down to read or watch TV he falls asleep...it is almost like narcoplexy..Saturday he fell asleep with people in the room..the doctors have totally ignored this..I have brought it up at every appointment..and it is always brushed under the rug.
How wonderful that you were able to give your daughter one of your Kidneys. It is sad that she is rejecting it..but you tried! You sound like a wonderful Mother and Grandmother. I wish you and Stephanie all the best and my prayers are with you.Please keep your positive attitude