It's been some time since I posted although I try to browse this site whenever possible. Just to bring everyone up to date on my wife Janie...........AIH/PBC, steriod induced type 2 diabetes, Addisons disease, thyroid disease, and gall bladder disease.
Janie has been on the transplant list here in the Dallas/Ft Worth area since 2009, with her MELD score fluctuating between 14 and 16 for the past couple of years. Last fall her health declined to the point where I had to retire when I could no longer work and care for her. Since then her health had steadily declined. Shortly after the first of the year she developed gall stones, however due to her underlining liver disease, her chance of surviving surgery is no better than 50%, so no surgery is planned as the gall bladder will have to go with the liver. An MRI indicated a possible gall stone lodged in the bile duct connecting her gall bladder to her intestine, however she had an ERCP prodecure with no stone or sludge being found. Her liver doc did advise the procedure involved the sphincter muscle connecting the bile duct to the intestine being "cut" in order for a stone to pass more easily should this occur.
Since March she has been hospitalized three times, the first time for gall bladder pain, again in May for a gall bladder infection, and this month again for gall bladder related problems. While she was in the hospital this time she was diagnosed as having bacteria in both her urine as well as her blood. When admitted her creatinine was 0.7, however during her two week hospital stay it rose to 1.7. Her bilirubin was also elevated however at this time it seems to be a moot issue as she was placed on "hold" on the transplant list due to the infections so I don't know what her current MELD score is.
We now have two more medical specialists in the mix, an infectious disease specialist, and a nephrology specialist... this in addition to the Hepatologist and Endocronologist. After almost two weeks of hospital admistered IV antibiotics, Janie had a PICC line installed and was dismissed last Tuesday, with a home health care nurse visiting twice a week. Her creatinine did drop from 1.7 to 1.6 prior to her dismissal. She was prescribed both Invanz and Vancomcyin antibiotics to be administered via IV until July 25th (for the Vancomcyin) with the Invanz terminated this past Saturday. I have been able to learn to administer the IV's without problem as the meds are in a negative pressure plastic bottle and will flow into the PICC line regardless of their position. They screw on and no needles are required.
Her kidney specialist believes the Invanz has probably caused her creatinine to elevate as he says this drug is very hard on the kidneys. Her Hepatologist tells me that her MELD score has no doubt risen, but she will not be taken off "hold" until the infections clear. She has an appointment with the disease specialist on July 31st, and with the Hepalogist for labs on August 9th. Hopefully she will then be taken off "hold."
She has not had a good weekend, I dont know if the low fat, low sodium, diabetic diet is finally wearing thin, or what but she has little or no appetite. Today she ate very little breakfast and lunch, did drink a frozen and no fat milk smoothie that I made in the blender. The home health nurse came this moring and drew blood for labs, so if anything is really out of whack, I will be notified. I am just afraid that she is not going to make it to transplant with everything that is happening to her. She says that she is just tired and worn out, but I beg her to keep fighting. She has grown so weak that she uses a walker to go about the house, and even with that she has had several falls. We sleep in seperate bedrooms because our master room is too cold for her.
I read posts about folks getting a transplant and wonder "why us.? She didn't destroy her liver with alcohol or drug use, so why is this happening to us? I'm sorry to ramble, but no one who is not going through this torture understands what we go through day after day, month after month, and year after year.
God bless each of you