Patilee, Welcome to the forum. My husband was just recently transplanted Friday. I know what you are going through. My husband was in the hospital 15 times in the last year. You need to get a FMLA from your employer to take with you to his liver doctor, this will keep your job safe! I had a hard time leaving home to work and a hard time coming home, I never knew if things would be okay. This disease can be so very isolating, friends and family stop coming around. It is so very hard to just wait for the transplant call, and ESLD hepC patients do tend to be sicker than the other ESLD patients before the MELD score is high enough for a transplant. Mark's MELD score would be 23 one day then down to 18. He got his transplant at a MELD of 15. I know it is hard to control encephalopathy, Mark's was very hard. They did find that he had a chronic prostate infection, which caused alot of his encephalopathy. He is not going to understand how you feel, the encephalopathy does that. It was very hard for me to get through all the stress and frustration that comes with this disease, I prayed alot, I came to this board and vented, met many wonderful friends here they are a wonderful source for support! You just need to keep talking to us it helps!!!! We do understand, alot of us are going through it or have gone through it. Just know that you are not alone!!!! How long has your husband been on the waiting list and what is his MELD score? ((((Big Hugs and Prayers))))
Hi Pati, My husband is doing great, looks great too!!! He had heart problems last month and had been listed inactive, the surgeon saw him and reactivated him and less than 2 weeks after the visit, we finally got the call Friday morning. He did have heart complication yesterday and was transfered to CCU to regulate the heart beat, he is now back on the transplant floor. Mark had this very throaty sound in his voice, I am assuming this is what your husbands sounds like, I personally think it is related to the encephalopathy, the shaking hands are too. Mark's sleep pattern was inverted slept most of the day then up all night, he was always cold. I would walk into the house or wake up in the middle of the night, the heat would be turned up to 80 degrees. Pinkgrandma is right have them check your husband for any type of chronic infection. He may need to be on maintenance antibiotics.
Pinkgrandma, I am so sorry to hear and about your husbands listing, ((((Hugs and Prayers)))) I wish there was something I could do. I will open my e-mail up so you and Pati can contact me.
Hi Pati, Mark continues to do well, he is home now. Taking short walks in the neighborhood. He is no longer cold, in fact he has not been seen in his house coat and warm-ups since he came home. Mark did have the joint pain in his knees mostly, but also had alot of muscle cramps. The lactulose you just got the script for is a very important medication for Lee to take, it helps control the encephalopathy. Mark really dislike this medication, because he had to run to the bathroom so much and it also kept him at home more than what he would have liked. But it did help keep him from being admitted into the hospital with very high ammonia levels. Just hang in there, things will come together.