help for spouses and partners of people taking interferon

[rojc]

Is there a site for spouses and partners to get help or
advice for those of us on interferon therapy?

[stormy456]

Hi-  My husband is on Week 15 of triple therapy.  He's keeping a blog at www.hep-free.com, and I have a page on there called "She Said" with some of my experiences and observations.  But more than anything, I hang out here and get tons of support.  This forum is the absolute best.  

[1oftheclub222]

Any kind of care taker roll is very hard and wears on the care taker physically and emotionally.  it really takes a special type of person to understand it's not personal, and if the sick person could change things, they most likely would.  this medicine makes people tired and less patient at best, at its worst, people can be bed ridden and mentally a mess.  It's hard to feel like C**p all the time and put on a happy face.

I am kind of in both positions, I am treating, although luckily the sides are fairly light for me.  I am also a care taker for my mother who is progressivly becoming more demented as time goes on (this has been happening for 10+yrs) and is in a nursing home now. It is hard to not get frustrated when she goes into one of her hulicinations where she thinks people are molesting and mutilating people, when she wants me to call 911 and thinks I am in with the bad guys cause I don't call 911 and starts yelling at me...yeah it's tough, but I know when she is gone, I will be so glad I got to spend this last bit of time with her.  

she is not doing this to me, like your husband is not doing this to you...try to take a step back, take a breath...go for a walk...take some extra time for yourself...try to baby yourself a bit and see if you can get some help with your extra load that you now temporaily have.

[orphanedhawk]

If you look at Worrywart3's profile you'll see she only posted that 1 post and never has again. Don't know why people do that, but they do.

Marriages have broken up over this treatment.
I'm very fortunate to have a husband who's love for me surpasses his own desires.
However, I often think it is  harder for the caretaker sometimes, than for the patient.

You need to understand nobody chooses to get this virus. Nobody chooses to be sick.
He can't help the way the medicine affects him.

Hep C can kill. More people in the US die from hep C than from AIDs. Do you know this?

You may be right, that this isn't the right forum for you. Although I would like to offer you compassion, the truth is it's hard when you are doing tx. Because we don't want to feel out of it, only able to lie around. We want our bodies and minds to return to normal as much as you do, possibly more.

You do need to find a way to deal with your anger. Because it is NOT his fault nor was it his choice. It just is.

[isislily]

Honey, dont feel guilty.  It's not a bad thing to not want to have to deal with this ugly disease.  I am thankful I didnt catch it from my husband because of his poor choices.  

What I feel guilty about is the anger I feel cause all he wants to do is sit in his chair and watch tv.  I resent the fact that my workload has doubled.  I resent the fact that it all falls on me because of HIS choices.  I love my husband but I cant help feel the way I do.  

[isislily]

I understand everyone's need to be supportive to their family members going through interferon therapy but what I need is a website that I can post my frustration and my anger without being judged...does anyone know of such a site?

[Worrywart3]

Hi everyone,
My boyfriend and I found out 6 months ago that he had Hep C. I must admit, it has been a hard slog for us, especially initially as we found out one week before leaving on a 2 month overseas holiday. He doesn't know how he contracted the disease which makes it all the more difficult to cope with.

He has chosen to keep it very private which I completely understand, so other than him, I don't really have anyone to talk to about it all. There are so many things that I can't say to his face, things that I fear for our future, the fact that it kills me to see him tired and upset and scared... It feels hypocritical to say to someone over and over again 'it will be ok" when you're not really sure what will happen.

I feel so guilty that for a few weeks after he was diagnosed, I worried whether I would catch it. I feel so selfish even writing that down. I feel guilty for being mad at him when he is in a terrible mood

I feel really lonely and really guilty alot of the time, so I want to thank you all for allowing me to read your stories. It does make me feel better

[Mizzicat]

Hi! Sorry 2 hear that. Here are the best/most reliable data sites on Hep C we have found.
Clinical Public Health Programs
http://www.allabouthepatitisc.com/readytolearn/about/statistics.jsp

S upport-T esting-O utreach-P revention
http://www.stophepc.org

MayoClinic-Hepatitis C
http://www.mayoclinic.com/health/hepatitis-c/DS00097

Centers For Disease Control and Prevention- Hepatitis C Information
http://www.cdc.gov/hepatitis/ChooseC.htm

Basics of Hepatitis C
http://www.hepatitis.va.gov/vahep?page+basics-01-00

International Hepatitis C Conference
http://hcvets.com/NHCI/index.html

Vietnam Veterans of America
http://vva.org/
do search on site for "Hepatitis C"

Hepatitic C- Symptoms
www.webMD.com

Some of these sites have a place you click on for Patient/Doctor or Civilian/veteran. Good luck!

[Mizzicat]

Me again. If you're still online you can get reliable HEP C INFO from the center for Disease Control, the Mayo Clinic, and the Veteran's Administration. You don't have to be a Vet to look at their data, and they provide more treatment to hepc patients than anywhere else in the world right now. ( Supposedly Viet Era Veterans are #1 at risk group so tell any you know go to the VA and get tested!) Also at risk are health care workers, dentists and oral hygienists, hairdressers and manicurists, anyone with blood transfusions or clotting agents including those used to stop dental bleeding, people that use needles or snort drugs, possibly people that had shots given with air guns about 1961-1973, anyone that came into contact with someone elses blood. Possibly victims of violent rape that had bloody injuries. Will be back in a few with URLs to good info sites. Later.

[sober193]

Life changes but goes on. Fill yourself with information before coming to conclusions. The fatigue could be depression or from hard work. Lots to learn . I was scheduled for treatment but backed off because of the need to work everyone handles it different. Im hoping for the shorter treatment that is supposed to be available soon. I also saw you posted a question about driving after a biopsy. I couldnt, they went through my ribs and i was pretty sore just for the night,   thanks bill

[Mizzicat]

Hi! Sorry to hear that.Do take a tape recoder or good notes. Ask for genotype info as this is pertinent to treatment, prognosis and complications. Ask for and keep track of your viral load. Is Hep active or inactive? Is Hep relatively new condition or advanced? (Many have it 10-30 years before becomes active/damages/is fatal.) It is transmitted blood 2 blood, I don't know what kind of work you do, but should not be a big deal to employer unless you get hurt/bleed on the job. The CDC says a very remote chance of sexual transmission, but use condoms if you are worried. Keep gloves on hand to use if he gets hurt, to throw away bandages, handle laundry with blood on it. My hubby is on chemo for it, the interferon causes extreme rashes which he scratches in his sleep and bleed. I got white sheets undies and tshirts for him, handle with gloves, store separately, wash with HOT water and BLEACH. Get a contaminated medical refuse container to dispose of anything bloody, do not want it in the local landfill. If he has chapped/bleeding lips, sores in or on mouth, etc, have him wear a HEPA mask at home and work to elimate chance of blood in spitspray when talking or coughing, and do not kiss till healed. Let me know more when you find out. Talk to local disability services for help. Good luck!

[TheWorrier1971]

Hello, I am reading old posts.  It is now 10/15/2010 and my fiance has recently been diagnosed with Hep C.  I have been tested and do not have it.  He sees the liver specialist next week for the first time.  He says "it is what it is" and he is tired.  He still works daily to pay bills and help feed the children.  We work at the same company and don't know how to tell the boss or HR.  

The recliner was already a place where he slept alot after work.  It used to irritate me a bit, but now I know why...  He is young, only 30 and I am 39.  I cry daily now and that doesn't help anything for him.  He does talk with me and has not shut me out, much.  How can I help him more?  I think we are both still in shock at the news.  Please advise if you get this message.

Thank you,
The Worrier

[TheWorrier1971]

Hello, I am reading old posts.  It is now 10/15/2010 and my fiance has recently been diagnosed with Hep C.  I have been tested and do not have it.  He sees the liver specialist next week for the first time.  He says "it is what it is" and he is tired.  He still works daily to pay bills and help feed the children.  We work at the same company and don't know how to tell the boss or HR.  

The recliner was already a place where he slept alot after work.  It used to irritate me a bit, but now I know why...  He is young, only 30 and I am 39.  I cry daily now and that doesn't help anything for him.  He does talk with me and has not shut me out, much.  How can I help him more?  I think we are both still in shock at the news.  Please advise if you get this message.

Thank you and many blessings,
The Worrier

[julie44]

Hello All,I discovered this site today by accident..What a wonderful accident it was..I am also a caregiver for my husband as well..After reading almost the same exact story I have about my husband giving everything he has to get to work and throwing himself in a recliner..It really brought tears to my eyes..It is my exact situation..My husband also never sat down before this treatment always on the go..It is difficult to watch and my heart hurts so for him..I have to tell ya'll I was really in a pity party today until I read  and I found this page.I am also a believer in Jesus Christ and my faith is what gets me through the adversity today was just a little more difficult because of his family..They just don't really understand what he is going through..They act like its just a cold..Its not really that serious to them..I was just kinda internet surfing
looking for some type of support group and found this board.
Thank God!!!Journaling does sound like a wonderful idea.I have seen lots of boards for people that are on the treatment but not much for caregivers..Glad I found ya'll we are in our 9th week..Julie in Texas

[shebee]

LOL!   I forgot.....I am at another site...hotheps!  LOL!!!!

[shebee]

LOL!  I have always come here.... Full of joy...in tears...whining...overjoyed.... Devastated...and more...

...And always found support.  Hubby has help.  As a spouse, believe me, you go thru everything with them.  




What better support from riba raged heppers.  LOL!  








They have been so kind to me and sooooo very helpful.  I have not needed to go any further than this site.  




Somehow, because of others, I have been able to support my little family and become a better person.  When I was down, I found beautiful people who lifted me up and inspired me to be the very best person (and more) that I could be.  
I went for a high paying job just because of their courage.  
...And we kept our home and insurance...at least for now.

Recently, I found out that my company is "goin' out of business."  


So what

[cuteus]

here are some groups for caregivers:(there might be others)

http://forums.delphiforums.com/AngelsOfHepC
http://forums.delphiforums.com/rstutzr

and of course, this forum is always available with plenty of support.

[whoaisme]

Hi I am a spouse, and I must say this board has been a great source of knowledge and comfort to me. My husband,Giddyup, is now doing his second round, this time with daily infergen and riba, and had I not had this group of supporters to turn to I would have been lost. The last year and a half have not been easy for us, as it has not been easy for most of you, but finding others who are experiencing similar days makes it much easier to accept our situation. Thanks to all of you we have a place to turn to when we need encouragement and information. Hoping you all achieve SVR, Su

[the witness]

Thanks for the kind words. But we both took those vows during our marraige ceremony very serious. We both do believe, and I hope that all of you do, that God will not put you through more than you can bear. You may disagree, but quite possibly God knows you are stronger and can handle more than you think you can. I suppose that the hardest thing for anyone, especially those who are ill, is to feel so helpless and do dependent on others. Sorry for getting so religious but it is because of our faith that we have been able to get to the place we are now. God did not make my husband get Hep C. My husband said years of bad choices did that for him. No matter how he got it, he did. That at first was hard to accept but once he and I both did we became fighters. He will beat this thing and I vow to be there with him when he gets cleared so we can celebrate together!!

[harley dude]

I'll admit it. I was a jerk while on tx- and I really tried not being one but just couldn't help it- just think of all that **** we had in our systems and had to try to lead a somewhat normal life(ha ha) what a joke, now when I think back how bad I felt. They should have a tx hotel for everyone on tx to check in and not leave until finished tx. My Doctor sure was glad when I finished, I gave him hell and the nurses too. I think they had a party when I finally finished. I know alot of people react different to tx, but I'll admit it I was a jerk- "Thank God that's all behind me now"- I'm only somewhat of a jerk now- See Ya'll- Harley Dude

[the witness]

I am a spouse whose husband is currently undergoing treatment and yes, it is very difficult to see him struggle through each day. Somedays I feel like Nurse Ratchet, reminding him of what medication to take, when to take it, etc  Every day seems to bring a new side effect. He is so tired of taking so much medicine but continues on. The day we met with the GI doctor this past May I have kept a journal. I keep a record of each of his dr visits including his weight, blood pressure and temp. I do this to see if he is keeping steady. I keep record of each injection site, to help him remember where he shot himself last! I record his sleeping patterns, as well as all the side effects that this treatment gives him. What it has done for me is let me vent my frustration at not being able to do more than I already am doing. It is very hard to watch a once very active man do nothing more than drag himself to work only to come home at night and collapse in his recliner. He eats dinner there and stays there (most every nite) till bedtime. The fatigue is devestating. I suppose no one quite knows what that is like unless you have experienced it yourself. I have found a refuge in this forum. Friends without faces. Sure lets you know that you are not alone. I do reccomend your suggestion of keeping a journal. I know it has helped me cope. God Bless you all!

[jonihs]

My husband never posted here, but he read it often and it helped him immensely. Just understanding that what was happening to me was common, and how others dealt w/ it. He would even read sometimes when I couldn't, and help me w/ what he read.  Joni

[kennedge]

miles was setting up a site for this last year...try www.mkandrews.com...not sure if it got off the ground....Beware...you might think your partner is bad mouthing you to strangers...better yet sit down and talk together...print out info to share...let them read the forum...let them post at this forum...tx is mentally tuff and while on tx you really have lost your ability to cope and deal with every day stuff...

[cuteus]

i wish we could edit our posts sometimes...I think the delphiforums actually has some support group for relatives.

[cuteus]

maybe a new folder can be created at delphi?