Update on my wife

I seldom post, however I try to look at this list as often as I can to keep up to date with all the wonderful folks here. My heart goes out for the people on this list who have lost loved ones. Having lost my first wife to lung cancer several years ago, I can certainly understand what you are going through. All I can say is that time tends to heal all wounds. You will never forget the loved one you have lost, but the pain subsides as life goes on.


My wife Janie (AIH/PBC/ESLD) just successfully completed her third year of pre-transplant testing at Baylor Medical center in Fort Worth, Tx. Her cardiologist passed her with flying colors as an echocadiogram and EKG were both normal. In addition, an MRI shows no liver cancer. This past year her MELD score has gone from 13 to 15, and is now 14. We still have to schedule her yearly endoscope with her gastro doc in order to check on her varices, however she has never had a bleed. Her only complaint continues to be extreme fatigue. From reading posts both here and on a PBC forum, she is very fortunate to only be tired, and should count her blessings. She was first diagnosed in 1997, prescribed Ursodiol, and had no symptoms until 2008, when her health suddenly took a nose dive, and she was diagnosed with ESLD.



She now has a new female Hepatologist, as her previous liver doc left for a 3 yr fellowship program in another state. This lady was really nice, very friendly, and took time to answer all of our questions. We found out that Xifaxan now has a new 550 mg dosage available. She will now take one 550 mg tablet twice daily instead of three (two tablet) doseage of the old tablet. In addition she informed us of a new Xifaxan program whereby a patient can get $100.00 off the co-payment, (or cash price) for a 30 day supply of the new Xifaxan 550. She gave us a card to present to the pharmacy each time we get this prescription filled, which will cover her co-pay. This program is not available in MA, or for a prescription reimbursed by Medicare or Medicaid. Although she has insurance, with 20 plus prescriptions each month, every dollar saved will help.



This list has been a God-send for me to learn more about liver disease. I wish I could be more active and post more often, but with my work and other responsibilities, I just don't have the time.



I wish all of you the best.



Charlie

Post Edited By Moderator (hep93) : 5/10/2011 1:46:46 PM (GMT-6)

Charlie, It is so nice to hear from you. We know there are many people out there that follow this site, but we probably have no idea how many. There are so many knowledgable people here who can answer your questions if you ever need anything specific you need help with. I am a caregive for my husband who has ESLD so I am here for support if you need it! I wish you and your wife the very best and feel free to come chat with us anytime!

so nice to have good news

Pink Grandmaw

I'm doing fine.........and yes I take time to myself.  I've recently joined 24 hr Fitness and am really enjoying going there and taking advantage of the heated pool and hot tub. I have back problems, so I can't do any of the weight stuff, but exercising in the water doesn't seem to hurt me.  We also both enjoy eating out at least once a week and going to the movies whenever something really good is showing. Our two very spoiled chiwawa's also keep us entertained at home. Janie has a lot of good days, but tends to over-do it when she feels good. I try to get her to pace herself, but you know how hard-headed some women can be.

I don't know what the future holds for us........we just keep our faith and hope for the best.

Charlie

 Hi Charlie,

  I'm glad the sad face was and oops, got me a little scared there for a minute.  I am glad to hear Janie is doing good and that she has a doctor that is helping, gosh that makes things go so much smoother:) 

That is such good information about the Xifaxan, the price for that stuff is just flat crazy if you ask me.  The medication has been around for awhile now, used for other things (Traveler's poop's).  I forgot how to spell dia??  I know Connie would fix it for me but I didn't want to look dumb...:)  I just don't get how they can put such a high price tag on it.  My husband Dennis is on it and it sure has helped along with Kristalose for the encephalopathy.

Last we talked my husband was having the autoimmune stuff and your wife was having simular stuff going on....after many doc appointments and specialist it is finally being handled at USC dental- sore management...They have been great!! Thanks goodness....Things are falling into place and things are going a lot better!!

It was nice seeing you on here and glad your hanging in there as well!!

Take care,

DDMom (Kathy)

Thanks Connie for the "Happy Face" I didn't see the mistake until I posted, then I didn't know how to correct it.

Kathy,

After visiting an ENT who prescribed "Evoxac" 200 mg three times daily for her dry mouth, an eye specialist for "Restasis," her dry eye problem was solved, however she was still having problems with a dry mouth. We finally got an appointment with a Rheumatologist who prescribed "Plaquenil" 200 mg twice daily. Like Xifaxan, Plaquenil is also used off-label for the treatment of Sjogrens syndrome. With the combination of all three, both her eyes and mouth have again developed sufficient moisture. I just wish we could have solved the dry mouth problem before she had to have three root canals and crowns.($$$)

She also takes "Provigil" 100 mg once daily (used for narcolepsy), which has decreased her desire to sleep all day. We tried discontinuing this drug at one time, only to have to resume after all she wanted to do was sleep.


I just wish there was a magic pill to give her some energy.....

It was great to hear from all of you, hugs to all

Charlie