Busy Mom

[Monkey]

I was told my treatment will take 6 months, what I don't know is:  will I be able to drive (I live far away from the hospital where treatment will take place), will I be able to be a Mom to my son?  Will I be able to do the day to day things that a single Mom has to do?
 

[Tim Horn]

Hi Monkey...

First off -- your doctor can walk you through this -- but you do have the option of treating yourself at home. This will included the weekly injections of interferon and the daily doses of ribavirin (and either Incivek or Victrelis if it's been prescribed). Your doctor (or a nurse in the clinic) can teach you how to administer the shots yourself... or teach a family member/friend how to administer the once-weekly injections.

Do you think this is something you can do? Many people living with hepatitis C report that self injecting isn't hard, once you get the hang of it.

As for handling the day-to-day stuff,  it's possible that treatment will leave you feeling a bit run down. That said, most people living with hepatitis C are able to go about their usual activities -- including taking care of kids -- though plenty of rest (and a little help) can go a long way in making things easier on you.

Do you have anybody you can rely on to help if you're feeling a bit run down from the treatment?

Tim Horn

[tommyv]

I'm single and worry about taking care of myself when I decide to finally start treatment.

Not sure how all the mom's do everything they do but my money is on you doing great with it!

[Monkey]

I've known about this for some time and have told a couple people.  I do have a support network and if I can do this at home with regular check ups at my family doctor, that would be wonderful.  Thank you for the information.  I'm just a little nervous because I don't want my son to know what is going on, he's a bit young but, I also don't want him to end up on a physciatrists couch at age 30 either saying my Mother was a bi***.

[hep_mom]

Hi Monkey:

I have two boys (now 11 and 9) and I underwent treatment two years ago. I wish I could say it was easy but it definitely was one of the hardest things I've ever done. I have a very supportive husband and some family local that were a huge help during the process.

In the end I only did treatment for about six months. It wasn't working enough so my doctor told me to stop. I'm now talking to him about trying again now that there are new meds to combine with the old ones.

Wish me luck! And I'll be sending good vibes your way too! We'll get through this thing!

[Monkey]

Good luck to you and I thank you the kind words of encouragement.  I'm obviously very nervous about this.  I had my son late in life (40) and was pretty stupid when I was younger--kinda obvious by what I'm going through now.  My son saved my life and I have done a complete turnaround since then.  It was quite a shock to discover that my stupidity in youth is making me pay now when I have finally gotten it together.

[Ann]

Hi Monkey, welcome to the forums.

I have a good idea how you feel - I also thought I "got away with" my misspent youth, until I tested positive for hep C about fourteen years after I put that way of life (being silly with needles) behind me.

I did the treatment in '02/'03 and I treated for a year because I was also coinfected with hiv (got hep C in around '84, and got hiv the "old fashioned way" from a bf in '97).

My daughter was fifteen during my treatment and she ended up being the one to give me the shots as I just couldn't bring myself to stick myself. She only had to put the needle in, once it was in I could take over and finish the job.

You don't say how old your son is but unless he's tiny (under two), I would recommend you tell him something. Children are very perceptive and they know when something is wrong or when something out of the ordinary is going on, despite our best attempts to hide things from them.

The trouble is, when something is wrong but you don't give them some sort of explanation, children will automatically blame themselves. They'll wonder what they're doing wrong and why mommy doesn't seem to love them the same any more.

This is going to be really important while you're on treatment. I won't lie to you - it's a tough treatment and you're going to have bad days and days when you have absolutely zero patience. If you let your son know that you aren't well and are taking meds that make you crabby, he's going to be less likely to blame himself. Explain to him that you will be ok when the treatment is over.

Tell him something - the fastest way to him ending up on a shrink's couch is to keep him totally in the dark. He's going to know something is up and keeping him in the dark is only going to frighten and worry him unnecessarily.

You can tailor what you tell him to his age group. Your doctor should be able to help you with this. For example, you don't have to tell him about the shots. They're only once a week and you can do it when he's out (at school?) or at night when he's in bed. Interferon should be kept in the fridge and you can keep the kits on the top shelf at the back, out of his line of vision. You'll be given a sharps container to put the used syringes in and that can also be easily kept out of sight.

When I first started seeing a doctor regularly (due to the hiv) I took my daughter with me to an appointment. She was thirteen at the time. She knew a bit of what was going on, but nothing put her at ease like talking to my doctor. Her attending an appointment with me took the mystery out of it and made her understand in a very tangible way that I was going to be ok.

My daughter is now 24 year old and will be taking up her first post as a primary school teacher (ages 6-8) in September. She's very well adjusted - not only is she a great person, but she's my best friend too now that she's an adult. I'm so proud of her.

We had a talk a year or two ago and I asked her if she thought I did the right thing by not keeping secrets from her. She told me it was the best thing I could ever have done. She said she knew something was wrong - and she worried it was her fault. She was a young teenager when this was going on, but even younger children will pick up on it. It's not knowing what's wrong that makes things worse. Kids will blame themselves.

Again, if your son is very young, you don't have to explain what, exactly, is wrong with you, only that mommy is having problems but the problems are NOT his fault and they are being taken care of by you and your doctor. Remind him regularly how much you love him, even when (especially when) you're not having a good day. Give your son credit for being a big strong boy for mommy. Don't keep him in the dark and insult his intelligence.

I know I've been a bit long-winded about how you handle this with your son, but it's the main thing that leapt out at me from your posts. I cannot stress enough how important it is that you let him know at least a little bit of what is going on, according to his age level.

There is no reason why you won't be able to drive. The one caution I would give you is that there is something that many people on this treatment experience - it's nicknamed "riba rage". Riba is a short version of Ribavirin. I used to get it - the silliest thing would set me off. I nearly rammed an old lady in the supermarket with my shopping cart - just because she was slow and in my way. I caught myself in the nick of time and reminded myself it was just the drugs causing me to feel that way. Knowing that it can happen and having the presence of mind to remind yourself will go a long way to dealing with it without incident. So be careful that you don't end up with "riba rage" induced "road rage".

Another thing that got me through the treatment was knowing it wasn't forever and knowing that if it was successful (and it was) that I'd be healthy and would be able to be there for my daughter as she grew up. It's tough, but oh so worth it.

Another side-effect I dealt with was a constant thirst. I couldn't leave the house without a bottle or two of water and always had water by my side in the house. This could be a way for you to involve your son and make him feel like he's helping (so very important for children) - he could be in charge of making sure you have your water. Even a very young child could do this and it will make him feel important - and loved. It will help him feel like he has some control over what's going on - also very important for children.

As for all the day-to-day things, yes, you can do it. You'll have to pace yourself and maybe your house won't be as clean or tidy as you normally like, but that's small potatoes. Just get through the important stuff and let go of the small, inconsequential things. It's only for six months. You'll start feeling more yourself after only a week or so of stopping treatment.

The important thing is - you CAN do this!

If you have further questions, please do not hesitate to ask.

Hugs,
Ann
xxx

[Monkey]

Yes, I have told my son that the doctor is changing my medications come september and that I will be extremely crabby.  I also said it was for a little while.  He doesn't need to know the rest -- how I got it etc.

Your advice is the most important because you HAVE BEEN THROUGH it and I cannot express how much your "long winded" post means to me.  by no means did I think it was long winded.

My son is 11 and I had to have him tested in case I passed it to him (I didn't).

And yes, even the 80% chance of clearing this thing is worth it.  I know that every time I look into my son's eyes.

thanks so much

[Ann]

Hi Monkey. I'm glad to hear that your son does know a bit about what's happening, and I agree that he doesn't need to know what led to your illness. At least not now.

When my daughter was sixteen, I sat her down and told her quite a bit about her family history and how some things in my childhood caused me to be someone who, for a while, took refuge in drugs. This is part of what I alluded to yesterday when I said I asked her if she thought my being honest was the right thing to do. She was able to learn from my mistakes - it wasn't a case of "don't do as I do, do as I say", it was more a case of.... this is what can happen if you follow that type of path. However, I wouldn't have had that discussion with her when she was only eleven. I think if my own mother had been more honest with me when I was a teen it may have saved me from a lot of grief and many mistakes.

I also had to have my daughter tested. I had an emergency caesarian with her and I was told that was possibly why she tested negative - it is usually recommended that mothers who are hcv positive have caesarians. Waiting for her test results was a very stressful time for me, as I would imagine it was for you too. Thank goodness both of our children tested negative!

Do you know what genotype you have? If you've been told that you have an 80% chance of clearance, it sounds as though you have one of the easier to treat genotypes. I had 3a, which is one of the easy ones. My ex-husband also has 3a (he's hiv negative, unlike me). He only treated for six months and unfortunately had a viral rebound within three or four weeks after stopping treatment. He's very reluctant to re-treat, although I've been giving him information on some of the new drugs coming out and he's starting to rethink the idea. I hope he does give it another go, our daughter worries about him so much.

So you're starting in September? That will give you time to prepare. You may want to think about doing a massive spring-clean type clear out so you have less to do during treatment. Streamline things now as much as possible - you'll thank yourself later. Do your Christmas shopping now, for example, and plan ahead now for any other big days that will occur during treatment. Get whatever your son needs for the new school year so that will be one less thing you have to worry about. Plan ahead as much as possible. The less you have to think about after you start, the better.

You may find your short-term memory goes haywire and having your house as organised as possible will help. Get yourself a wall calendar so you can keep track of your son's school and extracurricular activities and invest in some post-it notes. Fill your freezer with nutritious meals for those days when you're too worn out to cook. This all may sound a little excessive, but believe me, you'll be glad you took the time this summer to prepare.

Try to not worry too much about the side-effects. Not everyone experiences them and for those who do, some only have very mild symptoms. However, it is good to know what to possibly expect just so it doesn't take you by surprise and worry you if you do have side-effects. They are manageable, even if they are a pain in the ass at the time.

You mentioned being worried about getting to your doctor appointments, but as someone else mentioned, you can do the treatments yourself at home. If you're like me and cannot manage to stick yourself, find someone you trust to help out. It only takes a few minutes once a week, so a neighbour or a family member who lives close-by would be ideal.

Also, I believe that you can now get interferon EpiPens which are allegedly easier to use than standard syringes. Be sure to ask your doctor about their availability. They're spring-loaded gizmos where you don't actually see the needle go into the skin - that was my big problem. Once it was in, it didn't bother me but every single time I tried to stick myself, I'd break out in a cold sweat and start shaking. I kept trying for the entire year and never once managed it. What a wimp, eh?

You should see a doctor at least once a month. Your GP may be able to oversee your treatment if he is in contact with your gastro or ID doctor (don't know which type of specialist you're seeing) and knows what markers to look for and exactly what tests to run. I remember you have to have your white blood cells and several types of red blood cells closely monitored as you may become deficient in some areas. I became very anemic towards the end of the year and had to lower my ribavirin dose - another example of the side-effects being manageable.

I'm trying to think of what else you may want to know... there's so many things that I could probably go on for pages. Can you think of any specific questions to ask? If you can, don't hesitate.... I'm glad you found this place for support. Although I had support on the AIDSmeds forums during treatment, I didn't have any hep C specific support and it would have meant so much to me at the time to have had that. (AIDSmeds is run by the same people who run this site - but this site is much, much newer.)

By the way, do you still think I'm not being long-winded?

Hugs,
Ann

[Monkey]

No I don't.

My Mother used to say "forewarned is forearmed". 

These are all very good tips for me and I really do appreciate it.  I don't have anyone around here to talk to about this so, all this information, especially from someone who has gone through it and is a Mom helps more than words can say.

I'm genotype 2 and yes, was told there is an 80% chance and for me, that's good enough to be able to take the chance to maybe see a grandkid or two.  Even though I'm 52 now (my son is 11) there still may be a chance to see that.  At least see him turn 18 and then the rest is icing on the cake.  You know?

I too had a ceasarian.  The cord was wrapped around his neck and thankfully, they saved the little guy (although he's not so little now).  I can't believe they never tested me for that stuff all those years ago when I was considered a "high risk" pregnancy.  They only found this last year when I was doing my regular testing.  I have no idea how long I have had this and that bothers me.  I quit all that stuff back in 98 and my son was conceived early 99. 

I have been telling my son some stories and reasons to stay away from alcohol and drugs although I can't yet get into specifics with him yet.  In time I will.    Unfortunately, we live in a neighbourhood that is sometimes rampant with dope and he sees some of the consequences of other peoples actions--like cops and guys beating up their women.  He is an intelligent kid and can understand that this isn't normal activity. 

I believe it is a gastro doctor I am seeing. 

Thanks so much Ann, I love the advice

[Monkey]

Well, hallelluyah (or however its spelt).  My gall bladder surgery is over and I have been recovering for the last week and a half.  Feel pretty good and now will be starting my treatments next Friday.

Everyone check out my blog on the site and I will be posting as regularly as I can.

Thanks,

Cathy

[diannastarr]

Good luck Cathy.

And Happy Thanksgiving!

[Ann]

Hello again Cathy, I'm so glad you updated us! I have to admit I missed your other thread where you mentioned that your treatment had been postponed. Sorry about that. I need to make a habit of stopping in here more often. I'm usually next-door at the AM forums, so it shouldn't be difficult.

Did you manage to get yourself organised pre-treatment? I had a look at your blog and I know you were really all set and eager to start, only to find out about the gall-bladder thing. What a let-down! It's always something, eh? Oh well, you should be finished in time to enjoy next summer.

How's your lad doing? Enjoying school, I hope.

I'll be checking in here regularly and also checking your blog (I subscribed to it). I can relate to so much of what you've already written and I'm sure others can too, so keep up the good work. Your input is valuable and appreciated.

Hang in there hun, and all the best of luck next Friday. You CAN do it!!!

Hugs,
Ann
xxx