Introduction

Hello, Im new to this forum. I have been reading posts and becoming familiar with the site.

I have been with my significant other for the last 12 years. about 5 years ago he started having some joint pain and feeling really tired all the time. He finally agreed to go to his Dr. After a physical and some blood tests, we were informed that he had Hep C, which he probably got from a blood transfusion that he had 25 + yrs ago before they screened blood. He also has Cryoglobulinemia. He went to a liver specialist and did the interferon treatment for about 13 weeks, it made him feel so bad he couldnt get out of bed sometimes. After 13 weeks they did some more blood tests and found he was a nonresponder. A couple weeks after he stopped the treatment, he started having severe pain in his legs, so he had some testing done by a neurologist and found out that he has Neuropathy. Over the years it seems like he has picked up new pains along the way.

about 3 years ago, it was all he could do to drag himself to work. Well he lost his job because the company went out of business. He said it was a relief to not have to work. He decided to apply for disability.
To make a long story shorter, it took him 2 years and a lawyer to get approved for his disability. At this point I am constantly in fear of coming home from work and finding him dead. He sleeps all the tiime, he says he feels like he cant get enough sleep. Now he is starting to fall alot. He has bounced his head off of every electronic and appliance in our house. His memory is failing him badly, he cant remember anything anymore. Sometimes his speech is so slurred that I can barely understand him. I just needed to tell my story to someone. I have alot of alone time and I worry alot. He used to take care of the household chores while I worked but he cant keep up anymore. I work 60 hours a week and then have a house too. Its hard! Now he is having back issues and they have recommended a spinal fusion. It just keeps getting worse.
I stay strong for him but Im tired! What is the time frame for Hep C? He has had it for about 25 years now. I hate to watch him suffer with his pain but Im not ready to lose him yet......I know that sounds selfish but Its true........I know Im rambling and Im sorry, I just have so much built up inside and needed to vent.......

Hi there Kath... it you look at the thread "On the other side of no treatment" that is Mike and I's story... anyways..
Yes, it's tough working like you are and dreading what you are going to find when you come home... and having to work to keep things going... then coming home to being a caretaker... and hiding your fears so he doesn't catch on...all of that..
but his confusion to be due to high ammonia levels which cause mental confusion due to what they call encephalogy (ok don't know correct spelling). The moderator will address some of the other issues you discussed.
Welcome to Healing Well Forum.. my thoughts and prayers are with you today.. Sandi

Hi, Kath, and welcome to the forum.  As has been said, you will find a lot of information and support here, which you know since you've been reading the posts before deciding to post yourself.  Have you also read the info in the folder at the top of the page entitled Hepatitis Resources?  It will give you an idea of what to expect.

This disease is very individualistic.  Everyone is different.  I was diagnosed with hep C in '93 and had trouble with the interferon.  I've now had the disease for 41 years.  In '05, I was diagnosed with liver cancer and thought I was going to die then...but I'm still here.  In '07, the right lobe of my liver was removed...due to the cancer.  I'd had a biopsy in '93 which showed no cirrhosis.  In '07, I did have cirrhosis.  So far my only symptom is the fatigue.  I could sleep 23 hours a day if I allowed myself.  But I set my alarm and force myself to get up and moving.  I wear out easily, though.  I've not (yet) had encephalopathy, which it does sound like your significant other might have.  Is he on Lactulose?  Is he still seeing a hepatologist?  Even though he can't tolerate treatment and was a non-responder, he should still be followed by a liver specialist.  A hepatologist knows what to look for in terms of progression.  There is also a new treatment on the horizon (should be available the first half of next year) which only requires being on it for 24 weeks.  It adds a 3rd drug to the combo and it clears the virus in 75% of those with genotypes 1a and 1b (most of the patients in the US.)

The main thing we say to caregivers is to make time for yourself.  You sound close to burnout now.  And no wonder--you're working long hours and keeping up the house and caring for him.  Doesn't leave much time for YOU.  If it's possible to get someone to come in and stay with him once in awhile so you can get out and visit with friends, go to a movie, or even take a long walk in the evening--it would help you.

Meanwhile, please continue to check in here and let us know how you and he are doing.  If you have any questions, someone should be able to answer...except for the one that no one can answer--how long does he have left?  Some go very quickly while others linger on for years.  There's just no way to know.

Hugs,

Connie

Mer, you were close--it's Rituxan, the brand name for rituximab.  (I looked it up.)    

Hugs,

Connie 

Hello Kath,  Just wanted to welcome you to the forum as the rest have address your questions.   Sorry that you are going through this......just know that you are not alone.......others have been down that road or are on it now........we all understand your fears and frustrations.

As a former caregiver......I am going to repeat what Connie has told you.  Remember to give yourself a break every now and then........Caregiving while you're working full time + is going to take it's toll on you.  Both mentally and physically.    It is imperative to take care of yourself too during this time.   Don't be afraid or too stubborn to call in for some assistance from family or friends.   If you get sick who's going to take care of  you and your husband?

Take care........lot's of thoughts and prayers..........   

 

I am going to triple ditto that! When my husband was 1st sick, I was afraid to leave the house and leave him alone for fear of something happening. Then, I got burned out and had absolutely NO energy. At the nugging, no pulling and yanking from some friends of mine, I now make sure I do something special for me at least once a week! Even if it's to have lunch w/ friends once a week or sneak out and have my toes done. I feel so much healthier mentally. Very important to take care of you, because if you don't, who is going to take care of him?

Hang in there!

Sandi, I get a spa pedicure every other month--because with my artificial hips, I can't reach that far.  They do a whirlpool soak and a sugar scrub, get all the callouses and cuticle off, massage calves and feet and do warm stone treatment, clip nails...and the final touch is "painting" them.  I really go for all the other stuff.  And I get it done at a nail center at Walmart...they have purple polish, but I'm more conservative. 

Hugs,

Connie

Thanks to everyone for the replies! Its unreal how many people are in the same boat.

Arneeb....I did read your story the other night when I was pulling a night shift. I sat and cried like a baby. But it did me good to read that other people have been through the same thing and made it :)

I dont know that he has ever had his ammonia level checked, but I am going to call his Dr and ask them too. Dennis did have a biopsy in 2005 and it showed there was no damage at all. His liver function tests have always been real close to normal until 2 weeks ago and they were abnormal. They are going to redraw them in 6 weeks. He does see a liver specialist but he only sees him annually right now. He told us that if Dennis did not plan on trying the Interferon treatment again there was no reason to do another biopsy.

I do take time out for myself every now and then but I hate for him to be alone in the evening since he is alone all day. He is still able to take care of himself and our dogs :) He just has to take alot of breaks. Some days are worst then others.

He says that I am his angel sent to him from God. I dont know about all that, but I will be by his side through the whole ride no matter how bumpy it gets! I think it is gonna help alot talking to all of you wonderful people.

Thanks and will be talkin again soon
Kathy

YOu truly do have to be the medical advocate for your loved one! There have been many times where I have had to "push the issue" to get something done. Don't be afraid to speak up, he needs you to do that for him! I can remember one time a doc's office was running an ammonial level test and they did not run it right, and when I brought it to their attention, they got VERY defensive with me. The office manager started yelling at me over the phone, etc. Needless to say, we have a different doctor now! LOL!

Do educate yourself. PUSH them to run ammonia level checks, etc. By the way, when they are acting goofy, it is not always the ammonial level being elevated that causes that. Sometimes infections can cause it, too. So you really to need to stay on top of his labs, etc. Make a 3 ring binder or note book and if you cannot get copies of all lab work (which you should) at least make them tell you the lab values and you write it down from one visit to the next.


Hang in there!

Walking the path with Mike was the easiest hardest path I ever walked... I will remember forever the first moment I met him...and he took my breath away... to  the last moment he drew breath... all the  moments between were so worth doing...no matter how hard... and some were... just take care of yourself.. come here to talk.. draw your inner strength from where ever you do... and however you do.. my thoughts and prayers are with all of you daily... Sandi

Hi, Troyka, and welcome to the forum. I suggest you start a new thread (hit New Topic instead of Reply) and introduce yourself and your situation to others. You might get more replies that way. We do have quite a few people with hep C (myself included), but don't know of anyone with cryoglobulinemia. However, there are always people lurking and someone just might respond to your post.  Meanwhile, here is a link to information about the disease.

Has anyone ever mentioned a transplant?  If your guy has genotype 1a or 1b, there is a new hep C treatment out that is taken for 24 wks. and is showing 75% or more clearance of C in this genotypes.  He should probably be on Lactulose for hepatic encephalopathy, and diuretics for swelling.

Hugs,
Connie