So here goes my first post!

[trappedunderice]

My wife is dealing a list of problems that only begins with Hepatitis C. Here is list in order of occurance, not necessarily importance:
Hepatitis B & C
Cirrohsis - portal hypertension w/varices banded
Enlarged Spleen - 16 cm
Depression - severe
Cryoglobulinemia/Vasculitis
Neuropathy - autonomic, peripheral and sensitivity
Anemia (not sure if that's spelled correctly)
Chronic Bile Duct inflamation or something
End Stage Liver Disease
We found out about the HepC about 10 years ago. It has been a long journey through a multitude of tests, doctors and hospitals. Each year the frequency of her symptoms increase and the visits to doctors and tests increase. She has been recommended by a heptologist to be evaluated for a liver transplant. Now she is experiencing extreme bouts with anxiety to the point illness because she has been scheduled for an evaluation.

[eureka254]

Once she gets linked into the transplant evaluation, I hope her anxieties will lessen, and my hope is that the TP team can provide more help in managing your wife's symptoms and discomfort.  Hepatic encephalopathy -- mood swings, confusion, and worse -- is one of the common symptoms of liver dysfunction -- hopefully the ammonia levels can be managed well for her from this point forward.  I've been fortunate that my husband has no significant symptoms of HE (we try to keep his meat consumption to a minimum), but each individual decompensates differently.  

I'm relieved to hear that she is feeling positive, thinking clearly, and feeling human... all those functions will help her a great deal during the TP process -- and she's lucky that she has a proactive support person in you.  I found it worked best for me to attend all my husband's visits and be his advocate -- rather than wondering if he forgot anything -- and try to address concerns he might forget to bring up, symptoms he might not think to mention, instructions he might neglect to follow, etc.  I'm happy to share what little bit I know about the TP process, but  there are a number of members on this forum who have quite extensive knowledge about the transplantation listing process and will hopefully pop in.  Mikesimon, IAmTheWalrus, child24angel, and orphanedhawk are all wonderful members who have relevant first-hand experience, and I should mention that three of them are post-liver transplantation and doing well...!  Make sure to tell your wife that! :)

I know how conflicted being in the situation is:  we want to be with our loved one as much as possible, but the reality of life demands that we attend to other responsibilities as well.  I don't know what your work situation is, but the FMLA (Family Medical Leave Act) may be able to help you balance time demands if you need to be with your wife more.  Explain to your wife that she has to work with TP team, think positively, and be attendant to doctors orders 100%, with or without you around -- she has the opportunity to seek out her longevity with a 2nd chance that not many people get, she should grasp the opportunity with both hands!  My hope, too, is that time is on your side, and I send best wishes for success moving forward. ~eureka

[trappedunderice]

Thank you for your comments. I believe we are both strong enough its the patience I'm not sure my wife has. She bolts every chance she gets like a horse that hears a rattlesnake under hoof. So far I've been able to rein her in. Today she found out that her mood swings can be attributed to her failing liver and she actually had a sense of relief because she thought she was losing her mind. Someone called their blood "mud-blood" which in a way is a good description. Full of toxins and who knows what that isn't being filtered by her liver. She actually for the first time felt positive about the evaluation in that there is hope of being able to think clearly again and feel somewhat human.
Two weeks ago I can honestly say I would have been painting a completely different picture. She's taking Xifaxin which is helping with the ammonia but prior to that she was psychotic to the point of hoping to die so this would all end. The pain from her neuropathy is almost unbareable and it hurts so much to see her in such pain and not be able to help her. Doctors are unsympathetic to this and have done very little to help reduce her pain. She has Lidoderm patches that help with her feet but only enough to allow her to sleep.
I wish I could be home with her 24-7 to keep her on her diet and provide her with positive support but I do have to keep working to support us and have health insurance. She on the other hand wants me home and resents my job because it takes time away from us and she doesn't think she has much time left.
I hope she's wrong.........

[eureka254]

I'm sorry that you and your wife are faced with such difficulty.  She has many of the symptoms associated with a decompensating liver, and my hope is that she finds the strength to step up to the evaluation and that she is found eligible.  

The evaluation process is demanding and extensive, but not painful. It's a lot of hurry up and wait, so your wife and you will find it a test in patience -- I know my husband and I did.  It's normal that your wife feels anxiety about it, but she'll probably find the anxiety much worse than the evaluation process itself.  Much of the testing she'll probably already be familiar with:  it's blood testing, urine testing, stress-testing (cardiac), breath testing (pulmonary), lots of examinations and scanning, meetings with social workers, meetings with nurses, meetings with support groups, etc.... it's not a one shot deal, rather lots of hoops and hurdles to jump.  It will require lots of flexibility on both her and your part, but the rewards can be lifesaving.  Welcome to the forum, and my best wishes to you both.  ~eureka

[billm57]

also best wishes hope and prayers for you both

[billm57]

has she ever treated in the past - she may be past that point now - if her meld score is high enough she will make the list - there is also living donor option if blood types match and other specifications are met