About to start treatment

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Bever
Regular Member


Date Joined Sep 2005
Total Posts : 29
   Posted 4/24/2006 5:54 AM (GMT -7)   
Hi Everyone.
I have had Hep C since 1988 through a blood transfustion. Up until present I have had symptoms but no pain.
My doc thinks that i am a good candidate for Pegasys. I have done a lot of research on it. I will try it but I'm really scared. I also don't know if I should inform my boss before the treatment starts to prepare him. How have others dealt with this?
Bever confused

lerie
Veteran Member


Date Joined Nov 2005
Total Posts : 966
   Posted 4/24/2006 6:46 AM (GMT -7)   
Hi Bever, I can't answere your question as I don't have hep C. My hubby had it but he was on a different treatment drug than you.I have cirrhosis from prescription meds. However I would like to welcome you to HW forum. You will find a lot of caring, supportive people here & tons of info. Feel free to go thru the other posts here & join in the great topics of discussion.Hopefully someone else here will be able to answer your question soon. Keep posting & keep us updated on how your doing.Hang in there. Good Luck & take care. later.....


"There is at least one good thing in each and every day we just have to find it and if we look hard enough we will.Somedays we just have to look a little harder than others,but its alway's there.
 
Valerie

Post Edited (lerie) : 4/24/2006 12:36:43 PM (GMT-6)


Bever
Regular Member


Date Joined Sep 2005
Total Posts : 29
   Posted 4/24/2006 7:21 AM (GMT -7)   

Thanks Jennifer.

What is FMLA?

 


TDT
Regular Member


Date Joined Jan 2006
Total Posts : 402
   Posted 4/24/2006 7:49 AM (GMT -7)   
FMLA is Family Medical Leave Act what it is
It will keep your job secure for up to 12 weeks if you need time off.
Please click link above to read full info
Hugs
Teresa

Bever
Regular Member


Date Joined Sep 2005
Total Posts : 29
   Posted 4/25/2006 1:01 PM (GMT -7)   
Thanks you for your kindness. I have been reading through the other posts and find it very enlightning.
Is there anyone out there from Newmarket, Ontario? (actually, Holland Landing.)?
smurf  Bever

lerie
Veteran Member


Date Joined Nov 2005
Total Posts : 966
   Posted 4/25/2006 1:40 PM (GMT -7)   
Hi Bever, I'm just south of you in Toronto Ontario. Glad you are enjoying going thru the other posts. My thoughts & prayers are with you. later....
"There is at least one good thing in each and every day we just have to find it and if we look hard enough we will.Somedays we just have to look a little harder than others,but its alway's there.
 
Valerie


III
Regular Member


Date Joined Feb 2006
Total Posts : 91
   Posted 4/30/2006 12:51 PM (GMT -7)   
Hi Bever,
What kind of job do you have. I just did my 10th shot and I have my ups and downs, but I've only missed one day of work so far. I haven't said anything to my boss yet and hoping I don't have too. But my weekends are gone. I take the shot real close to bedtime. The first one I had the chills and fever and aches and pains. Now I get the aches and pains but motrin is wonderful. I take a motrin an hour before the shot and then every five hours. (about 7 motrin in 2 days) then just as needed. Drink lots of water. I drink like 90 ounces a day. Eat small meals. Do you know your alt and ast, and do you know what genotype and your viral load that you have??

Good Luck
We can get through this
Hugs
Eileen

wheredidigo
Veteran Member


Date Joined Mar 2006
Total Posts : 605
   Posted 4/30/2006 2:56 PM (GMT -7)   
I personally would tell your boss about the treatments but thats a personal choice. My husband had chronic hep b and I had a severe acute attack of hep b but my body kicked it. Since finding this out I have made it my personal mission to tell ppl our story,,,,it might just help one person not go so far as to develop cirrhosis,,,one person might recognize the symptoms and get help before they go into liver failure,and also its time the public really knows about hep,all forms of it,and for ppl with hep not to have to feel shame about their disease,,,,and one more lil bit of advice,gatorade is wonderful for keeping up the electrolytes ,,as eating is hard sometimes....good luck
trish

III
Regular Member


Date Joined Feb 2006
Total Posts : 91
   Posted 5/1/2006 5:06 AM (GMT -7)   
Trish & Bever,
Good morning,
I'd like to clear myself a little...The reason I wouldn't want to tell my boss is because this is telling the vp and she takes care of so many people if I can get through this without bothering her to find someone else to replace me I'd rather not go through that. I have no back up. Now on the other hand I totally agree with Trish it took 5 years of testing before they knew what I had. I think it needs to be out there more too.....And, the doctors need to know the symptoms. When I told my sister what I had she knew 5 people with it and told me not to do the treatment because it was worse than what I had. Did I listen to her no....Thats when I listen to my hep doctor. I asked the nurse why isn't there more information out there and she said it is. I just wasn't looking for it.
Yes, we need to spread the news, but I guess it depends on the situation of your job. Thats why I asked what type of job that you have. I would like to start with telling all the doctors I went to what I have, so they can test their patients for this. It really should start there and yes if it gets to the point that I can't do my job I will tell her.

hugs to all
eileen

Barbara P
Regular Member


Date Joined Feb 2006
Total Posts : 256
   Posted 5/1/2006 5:59 AM (GMT -7)   

Hi Eileen,

You expressed yourself very clearly and are a wonderful advocate for hepatitis B and liver disease in general.

Yes, it is critical to get the word out and encourage others to get themselves checked out and treated early if they are positive. But everyone's situation is different. There is still alot of misinformation and prejudice out there against certain illlnesses and sometimes it takes a celebrety coming out in the open for society to open up about things.

My experience with hep B has been working with adults with severe developmental disabilities who lived many decades in state facilities. There disease was certainly not of their doing.  Whether a disease comes from life choices or just a stroke of bad luck does not really matter. It's what we do with ourselves in light of our misfortune that really counts.

I'm so grateful for this forum and the many friends who understand and support us regardless of our circumstances.

Hugs,

Barb


                     LIVE IN THE MOMENT!
 
                          Hugs and Prayers
                                     Barb
 
 
 
 


Bever
Regular Member


Date Joined Sep 2005
Total Posts : 29
   Posted 5/1/2006 6:36 AM (GMT -7)   

Hello All!

You guys are a wonderful source of information. it is so much better to ask people who are going through the same thing.

I too work with Developmentally Handicapped Adults I supervise a Workshop with 82 individuals and I have 4 Hep b carriers.

It was kind of ironic that after being tested for Hep B so that i could receive the vaccine that I found out i had Hep C.  I got it from a blood transfusin in 1988 ( I also have severe Von Willibrands' Disease) I was devistated at first. The hardest part was telling people close to me and feeling that they felt different around me. Some of them went out and got tested too.

I have been trying to talk to my boss about going on the treatment and what that will mean. The other thing is that it is a 1 hour drive to work every day. I have suffered fatigue for years now and I dred having to do the drive when the treatment starts. What I would really like to do is just take the year off and then they can get someone in for that time and I don't have to worry about going in but, if i do that it would be with out pay. I'm already stressed out and I haven't even started yet. I had a liver ultrasound on friday and I should be hearing from the doc this week.

bever scool

Barbara P
Regular Member


Date Joined Feb 2006
Total Posts : 256
   Posted 5/1/2006 7:26 AM (GMT -7)   
Hi Bever,
 
I hope your report on the ultra sound is good. I'm sure you never expected to turn up positive for Hep C.
 
In an ideal world, you would be given the year off for treatment with pay and have your job back upon completion. I can dream can't I.
 
It sounds like you are giving this matter alot of thought and will come up with the best plan of action. That is a long drive when fatigued. Is there any possibility of moving closer to where you work.
 
It is a small world. I am a speech/language consultant for group homes and adult developmental day programs. With my husbands illness of end stage liver disease and esophageal cancer, I've had to cut back drastically on my work load. I can only imagine how much more difficult work would be if I had the liver disease instead of my spouse.
 
I'm glad you are finding this site helpful. We to benefit from your posts.
 
Hugs,
Barbara
                     LIVE IN THE MOMENT!
 
                          Hugs and Prayers
                                     Barb
 
 
 
 


Bever
Regular Member


Date Joined Sep 2005
Total Posts : 29
   Posted 5/1/2006 8:06 AM (GMT -7)   
Barbara
It must be very hard watching a loved one go through this. I hope you have a good network of friends to support you. My thoughts and prayers are with you.
Bever :-)

wheredidigo
Veteran Member


Date Joined Mar 2006
Total Posts : 605
   Posted 5/1/2006 6:58 PM (GMT -7)   
Good luck finding a solution Bever. My husband took off work and applied for ss but you may not be advanced enough for that,but its worth askin your drs???or maybe take off for your year and find a part time job? Your health has to become top priority,even if sacrifices have to be made ,,:) back to an earlier convo,,,my daughter just informed me last night,that back in aug,when i was first diagnosed with acute hep b,,,,,an aunt on her fathers side actually wouldnt let her in her house,,,,and then when she finally did,she made her sit at the other end of the couch,saying she didnt want to come into contact with her,or let her children,,,,,until she was tested and found not to have it,,,,ignorance has got to stop,,,,,,,,i so upset that my daughter had not told me this,,,,and very disappointed that an adult could treat a 15 yr old girl this way,,,,,,grrrrrr,,maybe she knew not to tell her mom right away,it mightve been a bad scene,,,,,ppl need to be more educated about hep,and also other "taboo" diseases,,,welcome bever and good luck :)

Marg57
Regular Member


Date Joined Dec 2005
Total Posts : 446
   Posted 5/2/2006 12:39 AM (GMT -7)   
Hi Bever and Trish,
I had a couple of friends who didn't visit me when I was sick. They phoned regularly. They said they didn't want to spread anything to me and also that when they saw me i looked so bad that they thought it might be the last time they saw me. Perhaps they really thought i would infect them!! I hope not. they are good friends and I try not to think badly of them.
We don't need people like that!!
Marg
 


III
Regular Member


Date Joined Feb 2006
Total Posts : 91
   Posted 5/2/2006 2:44 AM (GMT -7)   
I had my boyfriends mother tell me that I could put bleach in the water when I'm doing the dishes so the kids didn't get it. My kids told grandma that wasn't nice and she needed to think what she was saying and she needs to read on it.I wanted to tell her to go home she also went and got tested. I gave her a panthlet on the different heps......

people can be mean even family
hugs
eileen

Bever
Regular Member


Date Joined Sep 2005
Total Posts : 29
   Posted 5/2/2006 5:09 AM (GMT -7)   

You are so right about people and family being mean.

I'm having a hard time explaining all this to my husband (common-law 3 years).  I told him that it would be nice if he could come to my first appointment with me. Trouble is that he is a work aholic and forgets alot. He is the only family that i have. i want to lean on him and for him to help me get through all this. He has never had to deal with any major illnesses before ( and I have plenty of them). I do know that he has a hard job but I would like to be up there with his priorities.  I am also competeing for attention with his kis 14 and 18.  Don't get me wrong, I do them but it would just be nice to be # 1 for a couple of hours.

Have any of you dealt with these feelings? How did you get over it?

Bever sad


wheredidigo
Veteran Member


Date Joined Mar 2006
Total Posts : 605
   Posted 5/2/2006 6:49 AM (GMT -7)   
Oh your goin to need your hubby to understand this,,,maybe sit him down and very firmly tell him there is NO choice about this,hes got to come to the dr at least the first time with you,,not only for your support but he needs to learn whats about to happen to you,as your lives are goin to change somewhat for a while,,,,make sure to give the kids as much info as possible too,,,,,,they may be a source of confort and support you hadnt thought of. My daughter is now doin a school project in science on hep b,,,and is including a pic of me and my husband,,,captioned,,,,do these ppl look like they have hepatitis???  She is doin a wonderful job with it,,she took my stack of info papers and is turnin it into a real learning experience,not only for her,but for her peers....shes 15 so believe me,,,teenagers DO have a compassionate side so maybe his teens can kind of help you! Good luck and know that no matter what you can get excellent support from this forum.
trish

III
Regular Member


Date Joined Feb 2006
Total Posts : 91
   Posted 5/2/2006 8:45 AM (GMT -7)   

I've been with my other half for 22 years (not married yet) lol  Not sure if he's the mr. right.... tongue we have 2 beautiful girls 18 and 19 they are my saviors.  My 17 yr. old brings me lunch every day to the college.  My 19 yr old makes sure I get my exercise. My boyfriend did go to the first appointment only.  I'm so happy he did because I don't think he would believe what I'm going through.  The depression off and on....The fatique, headaches, thinning hair, mood swings and so on.  They knew a mom gogogogogogo and now I've slowed down (not for long hopefully!!!) I couldn't do this without my daughters and Jeff giving me the shots and this wonderful forum.

How will you be getting your meds.  I went to a drug store the first time.  They even looked at me funny and it was like 200.00 so I said forget that and went through mail order 13.33 what a difference.  If your ins. has mail order thats the way to go.  They make sure you get it on time and its surrounded with ice packs.  And the pharmacists will answer any questions you have over the phone. they are wonderful.

 

hugs, eileen

Post Edited ("I") : 5/2/2006 9:56:35 AM (GMT-6)


Bever
Regular Member


Date Joined Sep 2005
Total Posts : 29
   Posted 5/2/2006 9:18 AM (GMT -7)   

The nurse said to give her the name of my pharmacy and she will call them in. I will have to pick them up. I am covered 100% through my work. I do have the option of having them delivered too. I think that is a great idea.

I am going to meet with her and the hep doc on the 16th of this month. She said to bring the meds with me and she will show me how to do the injections. Apparently they also give me a video.  I am starting to feel very anxious now. It's going to seem like a year until the 16th.  I have always been very independant when it came to dealing through dr and hospital visits. I never wanted to burden anyone but this time I'm really scared. He says that he will come with me to the first appoinment.

I was diagnosed with depression many years ago and have been on alot of different meds. the combo I am on now seems to be working. Sometimes I still feel overwhellmed with it all and fall back into a hole for a few days. I feel like I'm 44 going on 80 some days. Maybe that's just what is happening now. I'm having a "Pitty Party". I guess I'm entitled to it though.

They say you can visit Pitty City but you can't live there.

Bever


wheredidigo
Veteran Member


Date Joined Mar 2006
Total Posts : 605
   Posted 5/2/2006 7:53 PM (GMT -7)   
nothing wrong with bein scared ,,,cry if ya need to even,,,,god knows i sure have,and hubby has too,,,,,this is a major life change hon,and im not sure your supposed to NOT feel a bit scared..I think the one thing that really sunk in with us is the vulnerability and the control being taken out of our hands,,,,only thing a person can do it ,,,,,,talk alot,cry alot,,but always laugh a whole lot more....really appreciate even the small things as you go through this,,,good luck
trish

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 5/3/2006 12:15 AM (GMT -7)   
Bever, I am glad that your mate is going with you to the first visit...since he will be involved. Also, when you go alone to the first meetings, you may not remember everything that is said, and it's good to have another pair of ears.

With my liver cancer, my b.f. of 12 years went with me to talk with the surgeon and the interventional radiologist. Also, I requested he go with me to any scans/procedures where I would be sedated. My sister actually came from another state to be with me for 3 of them.

Sometimes at Oncology Clinic, I see couples who go to every visit together, and I feel a bit of jealousy. On the other hand, I have always been a very independent person and still try to do as much as I can on my own. I think I would resent someone "hovering" over me, if you know what I mean. I know that my b.f. will be there if I ask him to be, but if he's not really needed then it would be rather selfish of me to ask that of him. I may need much more from him down the road and he has assured me that he will be there for me throughout my ordeal.

The very best of luck to you with the shots. Please come back and let us know how it is going.

Connie

wheredidigo
Veteran Member


Date Joined Mar 2006
Total Posts : 605
   Posted 5/3/2006 9:03 PM (GMT -7)   
connie,what an unselfish person you are,,,,i wish rick was had a lil more of that independence in him,,,he doesnt seem to see how much this affects me too,and i feel like the life is bein sucked out of me at times,,,i dont mean to sound insensative,i just know hes goin to get worse,and if he takes everything from me now,will i have anything left to give then? yall excuse my down mood,a birthday comin up in 2 weeks,,,combined with gremlins jumpin on my uterus,,is a bad combination lol
trish

Barbara P
Regular Member


Date Joined Feb 2006
Total Posts : 256
   Posted 5/4/2006 6:19 AM (GMT -7)   
Oh Trish,
 
My goodness, you need to take care of yourself for your sake as well as Rick's. I really don't have any practicle suggestons to make. It's just the nature of the beast. Take the time to do special things you love. Maybe for your birthday you can get away for a day to a spa for a massage, pedicure and pampering.
 
Independence is great if we have that in us as you do Connie. But it is also a blessing to lean on others and accept their support. That doesn't mean one has to suck the life out of our partner.
 
My problem is my life and my every emotion are so very intertwined with Genes. I want to be there for him but do allow him his space which is a form of independence he hangs onto dearly. It's impossible for me to imagine continuing with life without him. This is defenitely something the chaplain is helping me with. He told me to walk through fear. Those are the exact words Gene used when he put my photo alone on
 the last page of the scrapbook he did for our life together when he was first diagnosed with cancer. I couldn't handle it and asked him to remove that page. The other day I told him it was okay to put it back.
 
This is not what I expected to write. Thanks for listening.
 
Barb
                     LIVE IN THE MOMENT!
 
                          Hugs and Prayers
                                     Barb
 
 
 
 


Bever
Regular Member


Date Joined Sep 2005
Total Posts : 29
   Posted 5/4/2006 7:32 AM (GMT -7)   

Trish

Go ahead and let it out. It's true that we do depend on others alot. The more we think you can take the more we will give you and we very often forget that you too are a victem in this. I thank god for people like you.

Bever

 

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