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Post Info TOPIC: Jen Needs Your Help
Jen


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RE: Jen Needs Your Help
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Hi All

Your words of advise have been heard, vaccinations are underway for all family members involved in caring for him.

Loving him and making him comfortable for whatever time is left is all we can do - thank you for helping me comes to terms with that and accepting that.

I know the next few months will be difficult, emotional and at times i know i will struggle but having your kind words and support will be the strength i need to continue.

I wish he had a support team like you guys, and a family that was not so judgmental about addictions.

This week i was on the look out for vitamin K1 10mg capsules - however it's out of stock in Oz ATM with no ETA of when it will be in stock, i was so stressed about not being able to fill his prescription that i came up with a replacement - him drinking shots of spinach and kale, Mmm Tasty - He really loves me now! 

Thanks again guys

Jen



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Jen

54 yo 

Lives in Australia

HCV 1a  AST 42, ALT 44, GGT 61, FS 2.6

16 week Zepatier Treatment started 26/7/2017

8 week results AST 37, ALT 22, GGT 23

12 week results AST 25, ALT 14, GGT 21



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Hi Jen, this sounds heartbreaking. You have so much to deal with at the moment. I can't offer any advice based on experience, but there have been wise words from others. All I can say is that I'm thinking of you, and your little brother, and if you need to talk (or rant and rage at the crappiness of it all) we are all here to listen. Jojo xx

__________________

52 yo.Genotype 1a Dx 17/05/17 Infected 25-30 years Viral load at diagnosis 440,000 Fibroscan 6.2 kPa, ALT 29

27/7/17 commenced 12 weeks treatment with Zepatier 10/8/17 VL 110 after 2 weeks of treatment.

24/8/17 VL UND after 4 weeks of treatment.

17/10/17 EOT...fingers crossed!



Guru

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Hi Jen,

I echo the gang's sentiments with get your vaccines and you have to take care of yourself during this difficult time. You want help, he doesn't. It is very hard and heart breaking to love an alcoholic/addict. I have been clean and sober a long time and continue to be active in AA. If you have time, you may want to check out Al Anon. It would help you emotionally and mentally. Just a thought. 

Keeping you and your family in my prayers,

wendy 

 



__________________

Wendy 53 y/o, DX 1994, geno 1A F1

1999 TX 1 - Inter -non responder 2001 TX 2 - Peg + Riba - viral load tripled and taken off

T3:  Harvoni 12 weeks Sept. 19, 2015 ALT 41 AST 30 VL 541800 UND at EOT and SVR 24 ALT 18 AST 26 platelets 223

 



Guru

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Hi Jen, I really feel for you with your brother`s situation, I know how very hard it is to watch someone self-destruct. 

I went through something very similar with my late husband some years ago.  He`d been diagnosed with HCV and cirrhosis, he had ascites and also diabetes type 2 and high blood pressure.  But he still wouldn`t (or couldn`t) stop drinking.  He had a history of dug taking when I first met him and at some point he`d substituted drugs for drink and then began the slow downward slide.  I`d tried everything I could think of to get him to change his ways but to no avail.  On the rare occasions I managed to get him to see a doctor he completely ignored all medical advice and warnings.  I was just `nagging` him, apparently.  Eventually I left him, hoping that the shock would pull him together but of course it didn`t.  Finally he got a diagnosis of HCC and by that time it was too late for any medical intervention. He was deeply into a state of denial all the way through, he never accepted that he was so ill and that he desperately needed help and he refused to believe what the doctors or anyone else was telling him.  In the end, for the last few months of his life, I realised that all I could do was take care of him and try to nurture him as well as I could until the end, which is what I did. 

My point is that some people can`t be helped, unless or until they accept that they need help.  It`s very sad, I know, heartbreaking.  I went through a whole range of emotions and I`m sure you know what I mean.

My advice is to look after yourself and take all necessary precautions, as others have said, and just be there for him within reasonable limits. 

My heart goes out to you, Jen, and to your family.



__________________

Jill 

(68 yo, lives in UK)

Was Gen 3a, 

24wks Peg/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 



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Jen,

I agree with Tig, you should (as soon as you can) see your hep doc (and maybe your regular family doc as well) and let them know of your brothers Hep status(s) and the situ of you being a caregiver to him. You may wish to ask your brothers doc to write a consultation note to your docs about your brothers current Hep status(s) to clarify things for your docs, especially if you are going to be a caregiver to your brother.

I do not know whether he is or will end up being in your home for your caregiving to him? You mentioned he has children (with him?) does he have his own household, a significant other, and children in his own household?

Either way, consideration must be given (by all docs involved) who is at risk with ALL who is involved with him (those in his household, and/or all the folk in your household). 

It makes "some" dif as to who is around him, and where he lives and where the care of/or with interaction with him is happening (who he could be a risk to, or, who can expose things to him as well).

Discuss the living and "care" circumstances with your docs thoroughly, and explicitly ask them about and request "saftey" household innoculations that may be recommended for some of you (or all of you, depending on the living/exposure situ), everyone who is at risk of being exposed to his organisms, and the same the other way around, people coming in contact with him and bringing their own organisms to him. 

Hep A/B, flu shots, maybe pneumoccocal could well be in order for some of you - it all depends on each family members current/past immunization histories, ages, etc. - immunization and risk assessments do have to sussed and recommended by all docs involved (your brothers doc and your docs). It all depends on how wide and intimate the family circle is, who needs protection and what may be lacking.

My partner, due to our particular circumstances, was also routinely and automatically tested for hep C and HIV, as soon as they knew I was pos for hep C, and I immediately and automatically had all my hep a/b/flu and pneumococcal immunization needs assessed and planned, AS WELL they automatically included and assessed my partner for same. Then we quite quickly went ahead and got all the shots we needed (and these shots were free for both of us BTW, "public" health provided them, as per an approved public health protection protocol, on docs orders). 

So, you and your complete circle(s) of family, need to have your immunization requirements/health risks assessed and dealt with if need be. With an aging parent in your home, plus younger children (yours or his) they all have to be taken into consideratin depending on close family/or household contact.

Hep D "partners"/goes in hand with having Hep B. You say you know he has untreated Hep C, but that he was "treated for B" at some point in the past, but really you might not be able to know (with certainty) where your brother is at, as far as being free of Hep B (unknown relapses/re-exposures via drug use, etc.) only his doc will know for a fact what kinds of viruses he is harbouring at the moment. About Hep D ( and A, B, C, D, E, and F and G!)

So, yes, seek all the docs advice and assistance to get all the shots/testings you (and all your families/households) may need.

I too have had an assorted variety of family alcoholics around me all my life, it can be hard to be with them (no matter how much you may love them), to witness their actions, to try to take care of them, and to still not enable them at the same time. If it is not direct liquor supply, money or "help", they can still depend on you and the interaction with you as "partial" enabling. 

I am sorry for these hardships and heartaches. C. 



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 62 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)

Jen


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Thanks for all your concern guys it means a lot to have someone listen and know that support is everything.

Mike he seems to be on a road of no return personally i think he is a coward for not wanting to fight for life (after all that is the one thing each of us here want more than anything to live) I certainly couldn't imagine my children watching me waste away - just the thought of not seeing my grandchildren grow up gave me the kick up the backside i needed to get treatment.

Alcohol has taken control of my brother's mind, body and spirit i'd usually say soul but after him telling the doc his going home to have a drink with such excitement i knew we'd lost him completely to his addiction.

My brother has used alcohol daily since he was 15 (now 50) and was a heroin addict by 17 until he was 23 after doing major rehab he has never returned to heroin however he is a big smoker of the green stuff and still uses daily along with drinking 1-2 bottles of Vodka everyday, i just wish i could make the green stuff taste like vodka then maybe i would have half a chance here.

I agree RC its too late for him - he will not change for anyone - not even for love - of a son 17, a daughter who is just 12, a sister who will walk to the end of the earth to help him so with that all we can do is exactly what you said love him for whatever time that is remaining.

Tig - I will see my docs tomorrow re: vaccination and i will buy some masks, i always use gloves around him as i am aware of the dangers i just did not think about a mask so thank you.

I know this is going to a horrid road to travel and it will get emotional and have many issues along the way mostly coming from him not wanting to go to the hospital, wanting a drink and so forth but if i just remember that its his choice to die this way i should be ok dealing with it and if i struggle you guys will be my first point of call.

If i whinge give me a kick- if i cry because I'm sad as he wont stop drinking give me a kick cause i will forget as he worsen and i will need your reminder...

 

 

 



__________________

Jen

54 yo 

Lives in Australia

HCV 1a  AST 42, ALT 44, GGT 61, FS 2.6

16 week Zepatier Treatment started 26/7/2017

8 week results AST 37, ALT 22, GGT 23

12 week results AST 25, ALT 14, GGT 21



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 I watched my uncle die like that and it wasn't fun at all. I myself drank alcoholically (and drug junkie) for 40+ years and wound up with the doctor telling me that I had a decompensated cirrhotic liver and that I would die if I didn't quit (and he wasn't as optimistic as 3-6 months). That didn't phase me. I bought a half-gallon of vodka on the way home from the hospital. I had jaundice and encephalopathy and I had the ascites fluid pumped out of my abdomen 3 times in 2 months at one point. But the pain finally motivated me to seek help. I quit drinking and sought treatment for my HCV and although it wasn't easy, it was doable. Today I still have a cirrhotic liver but my LFT's are very good considering, and I'm very active with regular exercise and spending lots of time helping other alcoholics recover. So tell him that I said "it's very doable. Life can be wonderful after recovering from a hopeless condition like that". I'm a perfect example. But he has to want to do it for himself. If not then at least don't you buy it for him. If he gets mad then good, mad might make him get out of his self pity and do something about his situation. If not and he chooses to kill himself, then let him do it to himself.

 I hate that kids are involved because I know how losing my uncle made me feel. As already discussed, take care of yourself #1. It will get messy and you need to protect your own self. We were able to have help from a trained hospice caregiver and I would suggest doing that if possible. 

 Bless your heart Jen. My heart goes out to you and the family and I wish I could help more, but my experience is the only thing I can give. Take care of yourself and let us know how you are doing. 



__________________

57 yo, geno 1a, Dx 1994 HCV-HIV co-inf, Dx 2013 decompensated cirrhosis
Tx #1 - 24wks Sov+Riba /SOT 7-24-2014/UND@EOT/DETECTED@EOT+16 wks
Tx #2 - 24wks Harvoni /SOT 7-25-2015/UND@EOT,+12,+24,+52,+115wks = SVR-115

Mike

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Hi Jen, I have a younger sister who is in tough shape. The family and myself have been trying for years to get her turned around. Its hard to watch your family member slide down hill like this. At one point I went into the Bar she hung out at and threatened the bartender, I told him that he was killing my sister and that he overserves her daily, and that I had videos to prove it (I diden't) and told him I would shut down his bar. i wasent very nice and made a ass of myself. After sleeping on what I had done, I realized that I owed the establishment a apology, and I  did apologize. I realized that I can't control  my sister's behavior  and there wasn't anything I could do to change her ways. I spent so much time and $$ trying to force her into sobriety. There wasent anything I could do to help. She's stage 4 cirrhotic,has had multiple bleeds. Even with me going through a Liver Transplant, and me having cirrhosis and liver cancer, she still thinks it wont happen to her. My cirrhosis was caused by 37 years of HCV, hers is from heavy daily drinking. Its hard to watch, but they need to Change. We can't change them. My solution to the situation with my little sister is to just love her, and except her the way she is. I don't Judge her anymore.I don't spend all my time with her trying to get her off alcohol, I spend it enjoying her. Love him and keep him comfortable.   RC

 



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 M-61 (3 Treatments)( SOF-RIBA 2014)(SOF-RIBA-PEG 2016)(HCC 2016) (LIVER TRANSPLANT 8-2017)(VOSEVI-RIBA 2017) On my way to SVR.    SVR-12. 3-13-18

Tig


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Hi Jen,

First of all, I'm very sad to hear about your brother. The pain it causes the family is real and I'm sorry you're having to go through it.

If he refuses to quit drinking, there isn't much that can be done. If he was forced into rehab, it would stop the consumption, but his health sounds very compromised and if they could get his lab values back in order, or well enough to tolerate advanced medical intervention, he could improve but it would take a long time to witness. If he refuses to do that much, it's difficult to say what can be done in the short term and after. Medication to help with the confusion and paracentesis to reduce the ascites  (when possible) is probably the immediate things that could be done. I'm sure his immunity is quite poor, so his risk of infection from the procedure comes into play right now. He has to get that built up and how they do it is their call. 

You should absolutely be careful if he has multiple types of Hepatitis. The last thing you can afford to contract now is another form of the disease. If you haven't received your Hep A and B vaccinations, you absolutely must attend to that. As far as Hep D, I'll have to research that. Bottom line is, you have to be very careful. You should let your doctor know that this situation has arose and get it on record and seek advice. If you are handling his secretions and tending to his care, you should be masked and gloved. I know that might freak him out, but it's past that point. You have to be careful of your own health and people shouldn't needlessly expose him to any unintentional bugs.

If we can help, we'll do everything we can to provide support and information. We're not doctors, so our advice is limited to knowledgeable opinion and friendship... Good luck.



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Tig

61 yo GT1A - 5 Mil - A2/F3 - (1996) Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

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Jen


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Hi Guys

I really need some information to help me care for my brother OK, this is the low down.

two years ago he was told he had between 2 - 5 years to live if he stopped drinking.

He has Cirrhosis of the liver stage 3 - 4 (still drinking) no

He has HCV, HBV, HDV - HCV untreated diagnosed 1996 - HBV underwent treatment but continued to drink and use drugs - HDV - untreated 

He has Ascities and constantly requires an Ascitic Tap to relive the fluid build up in his abdomen. 3 Taps so far this year, waiting on the 4th.

We Rushed him to hospital last Tuesday with vomiting, diarrhea, fatigue, jaundice, confusion and slurred speech.

On Saturday the Doc told us he has between 3 - 6 months to live, initial we were told they would perform a ascities tap last Friday, then it was meant to be yesterday, then they decided to send him home and do the tap in 2 - 3 weeks as he blood results were not good enough to do the procedure along with his blood pressure being extremely low.

I totally understand their position and i do agree with it, however agreeing with and understanding their decision does not make it any easier as this person is my little brother.

Outside of medication the hospital will give him for pain relief - i am at a loss to know how i should be handling this for him - what will i be experiencing with his illness as it worsens ? As he carer.

If anyone has a past experience living with someone who has been in this position i would really appreciate any feed back what so ever - i have done a bit of reading however nothing tells me about what we may go through during the last few months.

I wish i was able to stop him drinking but i can not and nor can he so we have decided as a family for better or for worse we will not argue with him about him drinking, it is very sad to watch and it does make me very angry at times but then my anger turns to pity for him and sadness for the kids.

Do i need to be vaccinated against his hepatitis's? i do wear gloves if i have to clean up from him.

Any advise will be greatly appreciated 

Jen

 

 

 



__________________

Jen

54 yo 

Lives in Australia

HCV 1a  AST 42, ALT 44, GGT 61, FS 2.6

16 week Zepatier Treatment started 26/7/2017

8 week results AST 37, ALT 22, GGT 23

12 week results AST 25, ALT 14, GGT 21

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