Charlie, it's so good to hear that your wife is doing much better! Quite a difference from a few months ago! I don't quite understand the doctor's reluctance to band the varices that are in danger of bursting, as I thought that's what they usually do. However, I've had no personal experience in this area. I hope your wife continues to do well. I know how miserable she was there for awhile.
I also thought that banding prevented the veins from bursting, but like you I have a very limited knowledge of this and have no medical training. It may be that due to her having multiple bulging veins, banding is not an option.
She does have an appointment with her hepatologist in a few weeks, and if he hasn't already seen the pictures, I will take a copy for him to look at an give his opinion.
Yes, I would think the hepatologist would know best. Please let us know what he has to say about this, and also his opinion regarding TIPS for your wife.
It is great to hear that your wife's quality of life has definitely improved. I'm sure it's a mix between getting all her meds working right and your new grandson to focus on! Sorry to hear about her varices though. Hopefully her hep doc can shed better light on the situation and be more positive about the banding. Definitely keep us posted.
We're all thinking of you,
Thanks for the infor regarding your husband, that makes me feel so much better. I am just a worrier, as when she developed type 1 diabetes last year I was also afraid she would be taken off the list, however her Hep doc says that as long as her A1C is 8 or below there is no problem with the transplant. Her last A1C was a 5. This terrible disease just takes a mental and physical toll on the care giver as well as the patient. For the past 2 years, it seems that once you get one symptom under control, up pops another one.
Her meds appear to be finally adjusted to where she can have some quality of life. Her prozac has also been elevated from 20mg a day to 40, and as a result,her depression seems to have just vanished. When her eyes and mouth were so dry, she would have periods when she would just sit and cry, saying "why me." It just breaks your heart to see a love one suffer, knowing you have done all you can to help.
Thanks again for your thoughts and prayers. You folks are certainly in our prayers also.
Thanks for your post, as we are both sharing experiences that are very similar. Her rheumatologolist prescribed Plaquenil (200mg) twice daily about 3 months ago, and told us then that it would take several months to determine if the drug was going to help with her dry mouth, but that many patients have had excellant results with it. It seems a miracle that she is now complaining of "drooling" in her sleep, when before she would wake up in the mornings with her mouth so dry that she could hardly talk. She hasn't had any sores in her mouth for well over a month now. We can only assume that Plaquenil has made the difference.
She is also taking 20 mg's of Nadolol every day for portal hypertension. Her blood pressure is also checked and recorded daily, and normally averages around 110/70. Hopefully with the pressures under control, she won't have a GI bleed. I am looking forward to meeting with her Hepatologist next month to see what his opinion is regarding her stomach varices. Since he works with the transplant team, we will certainly adhere to his advice regarding banding, and/or a TIPS procedure.
We are very satisfied with the transplant staff at Baylor, as we get an email as well as a written report of her MELD score within days of her lab work. When she was in the Methodist system, I had to request her MELD score, and the canned reply was always, "We'll have to get back with you."
I am so happy to have found folks to communicate with that are traveling this same road. This site has been a mental lifesaver for me. Others who haven't walked in my shoes just don't understand what a caregiver is going through when trying to save a loved one from this terrible disease.
DD, if the doctor writes a letter to the pharmaceutical company saying that he absolutely must have the Xifaxan--that it is critically medically necessary--they may pay. That's what Charlie was referring to. So hopefully, that's what will happen. Also, I believe sometime this year, as part of the new health reform, those in the donut hole are supposed to get a check for $250...not a lot when you have a really expensive med, but a little help at least.