Since my last post my Thyroid has gone from Hyper-Thyroid ism to Hypo-Thyroid ism....Just like my Doctor at Hershey said it would. Now I take Thyroid hormones until my Thyroid levels off. Which I'm sure it will. They tell me that it may take up to 9 months or so for that to happen.
Outside of that I feel wonderful. The sad part of that is that I have the unending urge to barrel through life enjoying every moment of feeling good that I can. It's funny though....it's been a year and a half since my body has been really "worked" and I find myself, more times than not, with sore muscles. Ooooh but do they hurt sooo good! lol
I suppose this is my good-bye post. Other than a PCR test in June, I have completed tx. Jimmy and I went to Hershey a week ago and last week the call came to tell us that my viral load had come back Negative! So far I've cleared the virus!
The last test in June should confirm that I have a 98% chance of being rid of it completely. I will come back here to post the results when I hear them......
For those who run across this blog and are new to tx here is what I've learned:
This blog has been a journal of my dealing Hep C and it's treatment through 12 weeks of a trial drug called RO4588161 along with standard care for the remaining 48 weeks.
The trial drug itself worked in my case. I cleared the virus in less than 2 weeks. The bad news is, however, they had to scrap the drug and start over from scratch....they've decided that the side effects are too dangerous to continue.
If you've come to my blog searching for answers what you'll find here are experiences. Many of those experiences come from dealing with the trial drug and many come from the standard care of Interferon and Ribavirin.
If you are faced with this journey that I've gone through, know this....you can do it. There are times that it's not easy, but it is do-able.
These are a few things that I have learned through trial and error:
1. We are all different. None of us can know how we'll feel or what side effects we will have until we begin tx. My experience was a battle. Others have gone through tx with just a few side effects. Tx can effect us all differently....some have it hard, some have it not so hard.
To say it will be easy, would be wrong. You will probably have bad days and good. You must always remember that it is worth the battle to be able to live the rest of your life out with a healthy liver.
2. Drink Water. Drink lots of it. The more the better. These drugs dehydrate the body at an unbelievable rate.
3. I arranged my dosage schedule so that I take the Interferon on Friday nights so that I have the weekend to recover. Mondays are still a little ruff but I have only missed about a total of 8 days throughout my entire tx because of feeling sick. I've missed more work due to Doctor visits than I did because of feeling bad.
4. Take Ribavirin with fatty foods. It cuts down on the nausea and it also absorbs into you body much better.
5.While the flu virus and cold virus is very hard to catch while on tx (mostly because the drugs you take are very powerful antiviral drugs), infections become easier and easier to get as you go further into tx and your white blood cell counts fall (If your White Blood Cells drop).
6.Wash your hands often and use hand disinfectant as often as possible to cut down on your exposure to Bacteria.
7.In the winter use a vaporizer to keep your sinus' from drying out making them susceptible to sinus infection
A fever is a big sign that you may have an infection....call your doctor if you run a fever!
8. The hell with your hair. If it's going to fall out...it's going to fall out. If it just thins, change your hair style. If you get bald spots, wear a scarf. What do you do? It is what it is.
Mine fell out drastically due to the combination of the highest dosage of trial drug, Interferon and Ribaviron. Yours may not be anything more than thinning.
Also, 3 months after tx has ended my hair hair has grown back beautifully!
9. Painful dry skin....I tried everything (hundreds of dollars went into looking for relief) and the only thing that I found that helped (Actually Rosie found and Jimmy shopped for) is a product by a company called African Royal, Hot Six Oil. It's great! I use it literally everywhere....hair and skin. After a shower, before drying off I would apply it all over including my scalp. Then pat dry. Fantastic Stuff!
10. Drink lots of water.
11. Fatigue.....You can't ignore it because ignoring will only make you pay harder. Learned how to manage it. Sleep as much as possible. Sit as much as possible and rest whenever you can. Do not push because it will push back harder. When it pushes back you will pay!Live by listening to what your body is telling you.....
12. Make no plans. For 48 weeks plan nothing. You do not need added pressure of keeping dates and you will not know how you feel on any given future date.
13. Beware of "Riba-Rage". You'll know if you get it. It's just the Ribavirin. Some people get it ...some don't. Me? Yes I had it but not as bad as other people that I know. What I did get of it reminded me of having bad PMS. Major PMS. But I was able to control it by reminding myself that it's just the drugs.
If something got into my head I began to learn how to tell myself that if it's still there tomorrow I'll open my mouth.....9 times out of 10 it was gone by the next day and I was thankful for controlling my mouth because I knew then that it was all in my head.....put there by the drugs.
14. No matter what, no matter how bad it gets, always remember that your partner is going through it too. How hard this must have been on Jimmy. I'm lucky to have such a wonderful beautiful Husband!
I believe now that being sick was the easier part. I knew when I was really bad off.....but I could see it. I didn't have to really deal with it the way he did. God Bless him for loving me so deeply.
15. Do not skip dosages unless your Doctor says so. There have been so many times that I looked at those drugs and argued with myself about taking them. In the end I always concluded that it wasn't worth skipping. Geno type 1b hasn't got a high chance of beating this virus to begin with. 48 weeks is your best shot.....don't waste them by skipping anything.
It's just Not worth it!
16. A bag of frozen peas is the best thing for a tx headache. I'd use that and I'd take 1 ibuprofen and 1 reg. strength tylenol. The combination seemed to help. ( check with you Doctor about the ibuprofen and tylenol before trying this) My friend Teah gave me the idea of frozen peas! LOL Works great.....just mark the bag in the freezer though...lol! Frozen, thawed, frozen, thawed peas do make a good dinner idea!
17. Look at the day. Don't look back and don't look forward. Just look at the day.
18. Drink Lots of water.
19. For me tx side effects have no rhyme or reason. I used to try to figure out why the bad days where bad and why the good days where good. One thing is for sure....I take my Peg. on Friday nights, Saturday and Sunday are always hard....the rest of the days do whatever they wish and there's no telling what they'll do or why.
20. Go to the dentist before starting tx to avoid infection later in tx.
21. Go to your eye Doctor before starting and he/she will have a good idea of what the drugs are doing during tx if you run into a problem. They'll have something to compare to.
22. Eat even when you don't feel like it. I spent weeks eating peanut butter on a slice of bread when I couldn't stand anything else. All in all I lost a total of 22 pounds during tx. I started out at 138 lbs. and when it was all said and done I weighed 114 at 5'7".
Now, 3 months post tx I'm back up to 122 lbs....So I'm on my way back! : )
23. Did I mention to Drink lots of water?
24. Once again, I know I said this in the beginning of this list but.......Everyone reacts to tx differently. There is no way to know how you'll react until you go through it.
The side effects that I've had, you may not have at all.
25. YOU CAN DO THIS!!!
I started this Blog almost 2 years ago. I started it for 2 reasons. First was because there isn't any type of support in my community to deal with Hep C.
Second, because I was inspired and touched by 3 people who had fought this little dragon before me. Teah - 72 weeks of tx, Terry - 48 weeks of tx and Iris - 24 weeks. 3 of the most incredible people I have ever met!
Without them I would never have started the journey that very well may have saved my life.
I've met a lot of people along the way. Karen, Sharon, Dorene, Sean, Lisa, Rosie, Robin, Gary, Emilo, The Nomads, And so many many more. Everyone of them have not only touched my heart but they've touched my soul.All of these people brought me through the darkest moments of my life. I will forever be grateful to the Hero's who went before me, and with me and stood beside holding me up while I went through tx.
From the bottom of my heart and soul I thank you all!
May the Angels watch over you and God bless you.
And may all of your days be "Just Ducky!"
With All My Love
Laurie
