Hello Everyone,
I thought I would drop a quick note to you all and update you on what has been going on. Just when you think it is smooth sailing ahead, sometimes we hit some rough waters. That is where I am right now. Back in March I had the stomach flu and severe headaches for 2 days, which was awful, but I just thought it was a bad case of the stomach flu. Until it came back a couple of weeks later, and has now lasted for 10 days straight. I have had nausea, vomiting, severe headaches, abdominal pain and now the past 4 days I have had high fevers. They have been running tests, CT scans, ultrasounds, MRI, blood cultures, urine cultures and so on and so forth. My liver numbers have never looked better, which is great. But they are at a loss. I had some free fluid in my pelvis, and they were concerned that I may have appendicitis, but the CT scan did not show any evidence of that. I do continue to have a biliary fluid collection in my liver, and that is the next thing they are going to look at closer. The transplant team are going to have the interventional radiologist compare my recent CT with my previous one in February and see if there are any changes. If so they may consider draining it. They are unable to find a cause for all of my symptoms, and I am tired of reliving every day over and over.
They have made some adjustments to my Prograf, which is my anti-rejection med. They normally keep those levels at 5-6, and my level ran anywhere from 10-12. They were keeping my level higher because of my bad rejection I had in December. They thought this might be causing me to be sick. Larry told them it is like I am being poisoned. I asked him if he had anything to tell me. He said we spent too much time and money to get a liver transplant, that he wouldn't poison me now. So they decreased my Prograf to 2 mg a day, and added a new med to go with it. I no longer take prednisone either, so that is great.
This is the first time in over a week I have been able to do much typing, so maybe I am going to see the light at the end of the tunnel. Although I usually feel the best in the morning, and then all hell breaks loose by late morning.
I will keep you all posted. I was not going to send an email, but Gracie had posted on her facebook account that I was sick, so I had enough calls and emails I thought I would explain in one note. On a separate note, we went to Omaha last Sunday for a Donor Family Reception that I was asked to speak at. I had no idea how I was ever going to be able to stand up on that stage and get through it, I was so very weak. But the good Lord blessed me once again, and helped me through it. There were 550 donor family members there. It was a very emotional day, but I was so honored to have the opportunity to express my overwhelming gratitude. I am still hopeful that someday I will meet my donor family. I hope this finds all of you well. I look forward to one good day, it will be a start, I will take what I can get.
Bless you all,
Trish
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