Author Topic: C+ (Read 21418 times)

TexasC+ · « **on:** April 30, 2015, 06:11:10 pm »

Found out Monday by phone... Waited all weekend to find out. I see a GI doctor on the 7th. Like everyone else I am afraid.
How did I get it. So many possible ways. Cadaver bone graft, work exposure as a nurse. My x had it . I guess it doesn't matter how it just is.
Being a nurse I know more then some. I however now am a patient. I don't much care for it I must say.
I guess the first thing is to find out my genotype and VL. I came up pretty positive at 26. something. Positive is over 1.
I have been proactive and started taking milk thistle and turmeric,selenium as well as doing the apple cider vinegar with mother. I ordered bunch of holistic meds. From licorice root, neem DGL, burdock root, zinc, vitamin c, dandelion root, saw palmetto ALA,Borion chelidonium majus, b complex, to BHT. I am juicing 2 times a day ( beets taste like dirt blachhh) Doing chicken or fish with no processed foods, no bread, no sugars and lots of vegis and salads.I researched and that's the list of what looked like it had results with other folks. The orders would be here Friday. Now that I look at it wow that's a lot of stuff lol. Any one doing herbs and holistic stuff that can comment on my heal thy self plan lol?
My alt and ast were in the low 220's which was a shock. I went in for a routine exam and being 54 the doc wanted blood work. I am glad he did it. I was on celebrex for some pretty narly degenerative joint disease. Funny thing is, I went in to get a refill script for celebrex and came away with Hep C. The generic was making me very gut sick so I was not eating in the am before work. I work a ton of hours, so for the past few weeks I had not been eating or even getting a drink of water through the day at work. I thought ( most likely denial ) that's why my urine was dark. As soon as I got home I chugged a few waters and waalaa urine looked great. I did not fill the script for my celebrex and stopped it. I have not even taken a Tylenol since seeing my enzymes. Not easy as the joint pain is pretty bad. My labs were "all good" per my phone call where I got the news. My albumin, glucose, alk phos and biliruben were good platelets a little low. They did not do a PT/INR yet.
The funny thing about being a nurse is you never think its going to be you who gets ( name the disease ) . I had the hep A and B vaccinations and had my titers done 2 years ago and they were good. As a hospital nurse I have seen the people sick with complications of liver disease and that really scares me.
The treatment options are confusing and I have read about many of them. The new ones seem to have promise. Just worry about what insurance is going to cover.
What should I expect for my first visit with the GI guy. Thing is I know him from work at a previous hospital which could be a good thing. I liked him as a nurse, now as a patient lol I guess I will see.

BubbaT · « **Reply #1 on:** May 01, 2015, 01:49:57 am »

Hi Texas,

If you look at the signature line of this post you will see the data linking the persons liver damage and basically a chart of where there at, one thing I would suggest is that you learn all you can about hepc, and diet...for now..

After your consult with your GI, he is going to run a lot of labs and prolly schedule a fibrosure test, or fibroscan which ever is available to you, maybe a CT or ultrasound..

I would wade into the holistic approach cautiously, maybe wait until you get your results back... after you see how much liver damage you have..

I'm on 12 weeks of Harvoni, at week 9 now, my 4 week VL was ND,
Waiting on my 8 week VL results..

We are fighting this thing together, welcome to the forum...
The approval process by your insurance co, and The Liver test results will determine how they treat you..

Good success...

TexasC+ · « **Reply #2 on:** May 01, 2015, 07:26:56 am »

Thank you for your reply. It is so good to see your results. I am scared but of the unknown now that I see real people getting results on here. I was skeptical , as a nurse I have seen a few " wonder drugs" such as vioxx have harmful results. I also want to thank you for giving me fed back on what my first visit and the next few weeks will be like.
I think I will hold off on some of the supplements and only take what the doc approves. Maybe it was my way of filling up the hours waiting for the results. Reading and finding them for the best price. After I wrote the list I looked at it and thought HMMMM. That's a lot of pills for someone who was taking one celebrex a day . I researched the celebrex and it can effect liver enzymes and raise them up 4x's. Hoping my next ones are better now that I am off it.
How do you add the clinical stuff to the signature part? Not that I have much to add.
The waiting is messing with me. But the 7th will get here before I know it.
The irony of it is one of my nurses aides asked to talk to me and it was about if she should worry about her sister getting the Hep c+. She was afraid of her or her kids getting it by casual contact. I explained it to her. I also felt the first sting of the stigma of Hep C+.
I did however tell my nurses and my employeer. Which wasn't easy. Not sure why I felt that way, but I had a hard time with it. I know I have nothing to be ashamed of.
I suppose the hardest part was telling my husband and the barage of questions... Yes it is okay to kiss me. I have not told my adult son yet. His dad passed 2 years ago from complications of liver disease. One thing I KNOW is alcohol makes a bad thing worse. Not a big loss for me. I did however enjoy a good glass of wine or two with a meal.
Without the celebrex I am very uncomfortable. Joints I didn't even know could hurt are giving me a run for my money. I know I need to start some exercise again. I am not sleeping so well and a little dizzy when I turn over . I am just trying to lay down a little earlier. As for exercise.... Even if its just walking and doing some light weights. Not sure I want to stress my body with any drastic fat loss at this point. I have 20 lbs that I could loose to get to my previous very healthy weight. I am going to try to focus on what I am doing right and not what I am not doing. I am eating right , getting some sun every day working on my plants, doing fresh juices and cutting back on my work hours. I was working 7 days a week sometimes 14-16 hours a day .
This is an amazing forum and I am so thankful to have found it.

BubbaT · « **Reply #3 on:** May 01, 2015, 12:31:05 pm »

Hi Texas,

Glad to help you, we are a group who support each other and know the struggles of dealing with hepc, many of us are older, 50-68 range and have been dealing with this virus for a long time, hepc can take a long time to damage the liver or a short time depending on many factors, like alcohol use and drug use...

One positive for me is I have lost 15 lbs since I started Harvoni, and I am eating a salt restricted diet and I think for me using the stevia extract for a sweetener has helped me lose the weight. Along with juicing lemons in water about 4 times a day...

you are doing the right thing by slowing down your schedule, and take a healthy approach to your diet for now and limit red meat, and avoid Otc drugs, cut out processed foods, you will sleep better and keep working in the yard and walking...

You have to be strong and take the bull by the horns and say to yourself I'm getting thru this and when you don't have the answer to someone's questions, just simply say, I don't know!

God bless

Keep us posted...

Karen3717 · « **Reply #4 on:** May 01, 2015, 01:38:26 pm »

Hi Texas C+. You and I have a few things in common. I'm a Texan

Karen3717 · « **Reply #5 on:** May 01, 2015, 02:06:42 pm »

Well, clearly the majority of my reply fell into a "black hole". I will blame it on my iPad! I'm a fellow Texan with HCV, also in healthcare. I can sympathize with all your concerns as I had them too. I panicked when I found out back in 1991. I had several accidental needlesticks while working in a hospital laboratory. As a nurse, you know the drill for that scenario. There were no treatments at that time, so I basically buried my head in the sand until treatments were available. I did a year of interferon/Ribavirin in 2001 only to relapse 2 months post tx. Up until now, I have essentially been "warehoused" like thousands of others waiting for the new drugs & now they are here! HCV has finally gotten the recognition it deserved!

It sounds like you are doing everything right at this time. I agree with BubbaT about holding off the supplements until you find out what your treatment will be. The only thing that I would add is to find the best specialist that you can. Teaching hospitals such as Baylor/UTSW/UTMB have some of the best docs with access to clinical trials.

You had mentioned being off of Celebrex & dealing with joint pain. I swim laps for 30 minutes 3-4 X week. It is easy on the joints, provides some cardio & helps with muscle tone...plus it helps pull me out of funk most of the time.

This forum has been a lifesaver for me as far as getting information and reading about other people's stories. I hope it wiil be the same for you. Please keep us posted as things progress. Best wishes to you!

TexasC+ · « **Reply #6 on:** May 01, 2015, 06:50:34 pm »

WOW all the Texans. Thanks so much for posting. It's so amazing to have a place to be open and share whats going on. I am so sorry for all you have gone through with past treatments. I can only hope that I can get the new drugs as soon as possible.
I am going to TRY the GI doc that's close to me. ( about an hour away ) I live in rural no where Texas. Its a nice little town but the health care options are very few. Houston is an option the med center in an hour and a half from me, but I am going to try a teaching hospital in the Bryan college station area with a doc I worked with before as a nurse.
I can't explain it but I felt so foggy some days recently. Today was a good day. I kept it to 8 hours of work and did a juice for breakfast and lunch. I think juicing and diet change I think has helped. Maybe the break for my liver from the celebrex has helped too. Better concentration today. I am going to be positive about being +. I thank God I found this forum. Its a place to get info and support and talk about whats going on.
In so many ways I can not wait till the 7th to see the doc but also dread the thought of bad news. I am not looking forward to starting all the doc visits, labs and tests. The waiting for results is stressful. I guess I will have to learn to be patience patient.

Karen3717 · « **Reply #7 on:** May 01, 2015, 07:19:15 pm »

I also commute about an hour to my doc in Dallas. It is so worth it to me because I feel like I'm getting top notch care. Depending on your treatment plan, some of the labs & such can be managed remotely. I work in a physicians office and my specialist allows me to get all of my labs done where I work so that works well. Maybe you can do the same. I hope you don't have to get a biopsy. My small town doc that I initially went to told me it was "no big deal". Oh! Quite the contrary. Was sick in bed for three days afterwards. I'm not sure if the the Fibroscan test is the equivalent, but my specialist mentioned that he orders it in leiu of the bx. I know many folks here have had terrible issues with insurance, but I had no problems at all. The RN at my docs office is apparently a pro at getting prior authorizations through. I have BCBS of Texas. Got approved for 12 weeks of Harvoni within a week. Also went to Harvoni website & applied for the $5.00 copay card prior to getting the first rx filled. Your specialty pharmacy will verify all that & you'll be good to go. Take care & have a great weekend.

TexasC+ · « **Reply #8 on:** May 01, 2015, 09:14:16 pm »

I stopped working at a hospital in December am a ltc DON now. So no labs there. The little hospital by me maybe can do them as they are linked to the larger hospital in BCS. They are CHI owned so a big hospital net work.
Thanks for the tip on the copay coupon. I filled it out and printed mine just now. I am feeling better about this already!!
Have a great weekend too.

Bituman · « **Reply #9 on:** May 01, 2015, 09:42:03 pm »

Well another Texan here, although I live in Arizona. Karen I had similar experience. I also have BCBS of Texas. I was likewise approved in a very short time, like 3 working days. Kudos to them for not messing around. You are right, your health care staff can also make a big difference in terms of gaining approval.

Good luck to you and C+ in treatment.

Bob

TexasC+ · « **Reply #10 on:** May 01, 2015, 10:14:24 pm »

Bituman WOW you are VL undetected!! Congrats. I worry my starting alt and ast are in the 220's. Hoping its the celebrex that has it up that high and stopping it will bring them down.
I have aetna insurance. I sure hope they are on of the ones that will allow harvoni.

TexasC+ · « **Reply #11 on:** May 07, 2015, 01:48:20 pm »

Today is the day I go to the GI doc. Happy, nervous and hopeful....

Karen3717 · « **Reply #12 on:** May 07, 2015, 09:11:19 pm »

Hi there,
I hope all went well for you today at your doctor's appointment. Such an anxiety producing time....waiting for the test results. Maybe by midweek, you will have a better idea of what is to come. Keep us posted. This is a great time to get treated with so many options available now!

TexasC+ · « **Reply #13 on:** May 07, 2015, 11:11:22 pm »

Went well. I really like the doc. I have an ultrasound Tuesday the 12Th. If it looks okay NO biopsy

. Then hep c clinic on the 21st which I should have all the results in. They did ALL the blood work today and repeated my liver enzymes. The lab closes at 5 pm I made it in there at 4:59!! They drew a bunch of blood.
The staff was great at the docs and we were laughing and joking. The doc said this is " a great time to find out your positive" I had to laugh and say well heck lets put on our party hats then. Thankful for the new meds that are out there and the doc said newer ones and better ones are coming soon!!
Thankful for the forum here too. I brought my P/A form for my insurance and my harvoni coupon which they were pretty impressed with. Lets get this ball rolling.
I cant wait to start and get to post negative results one day.

TexasC+ · « **Reply #14 on:** May 14, 2015, 05:16:53 pm »

Still waiting on the genotype

. 7 days sine they drew it. Ultrasound showed " some fatty changes" normal flow patterns, spleen and gall bladder looked good. I have been eating very healthy, juicing 2-3 times a day and yes I did supplements.
The good news is my alt and ast are MUCH better. alt was 231 and now 129, ast 214 and now 78 !!! Platelets are normal now and were low before and pt/inr is normal also.
Test showed my hcv viral log was 7,087 and hcv rna pcr quant was 12215330. I have no idea what this actually means. 12 million cant be good lol....They faxed me my results. I guess they will go over it all at my appointment on the 21st.

KimInTheForest · « **Reply #15 on:** May 14, 2015, 05:58:13 pm »

Hi TexasC+. Congrats on your lower ALT/AST and normal platelet count! As for high viral load, everyone here (plus every hep doctor and hep nurse I have talked to recently) says viral load has no correlation to condition of liver, progression of the disease, degree of "sickness" or likelihood of responding well to treatment and clearing the virus. In other words, it is meaningless for everything except determining when you are "cured" - the coveted SVR12 we are all seeking (Viral Load undetected 12 weeks after end of treatment).

[Correction: I see from what others are posting here that viral load at beginning of treatment is used for determining how long your treatment will last. 8 weeks Harvoni if below a certain number, 12 weeks if above.]

Good luck on the 21st! Hope that goes well

kim

TexasC+ · « **Reply #16 on:** May 17, 2015, 01:53:30 am »

Anyone else seem to have the where did I put that , foggy , forgetting stuff at times? I am not sure if I feel better knowing my numbers are better or actually I am less foggy, hard to explain it. Maybe its just stress. I have a lot of joint pain at times and headaches which I never had before. I am not taking Tylenol or anything. I am hoping being off the celebrex and the juicing gets my liver functions down even more. I just don't want to risk taking anything. I do feel better this week so that's a blessing.
I think the fresh juice and all has helped. Eating very healthy, I did eat Italian food today. Was hard not to, as I cooked for company all day. No alcohol at all , but that's not been a problem. I wasn't a big drinker before this.
The harvoni commercials are a hit with everyone lol. I have told some friends and family about being c + and they all say the same thing " what about that new drug harv, voey , v something I saw on TV". They are shocked at the price and that my insurance needs a prior authorization. I think was all wonder why every one who needs it does not get it right away.
I find being out in the flower bed and working on plants to really be a great get away from it all. Stress relief is a good thing.
Trying new juice recipes, Did apricot and mango with ginger and some greens. It was pretty good.
It is so good to be able to have a place to get support. I dont feel alone in this. Have a great weekend

TexasC+ · « **Reply #17 on:** May 21, 2015, 08:50:28 pm »

Genotype 3, viral load 6 million
24 weeks of sovoldi and riboviran. They will call me when they get the meds in. Not to worry if I get denial letters they will take care of it. Sort of in shock but it is what it is.

TexasC+ · « **Reply #18 on:** May 29, 2015, 11:54:12 pm »

My Meds should be at my docs Monday. A lot of feelings going on. 24 weeks is a long time....
Tips for how to take ribo or sovoldi, best time to take them, best way to treat side effects, what side effects did you have? How long on the drugs till I feel better?
Scared but happy at the same time to be getting the meds going.
I am very worried about missing work, I love my job. Its hard work and a lot of hours but I do get to have some fum at the same time.
Any feed back would be amazing. My doc is great and I feel good about my choice. I just would like to know from those who have are are going through treatment what to expect.
Thanks
Mary

KimInTheForest · « **Reply #19 on:** May 30, 2015, 12:37:48 am »

Hi Mary. Congrats on being ready to start treatment Monday!

I am also Geno 3a. Am currently into Week 4 of 12 for Harvoni/Ribavirin. So far no real problems - nothing that has caused me any discomfort or altered what I do each day. Somebody else here (Lynn) recently finished 24 weeks of Harvoni with ribavirin added for the last 15 weeks. And even for that longer stretch, I believe she said she had no real problems except for the anemia caused by the Ribavirin. But even with the anemia, she continued with work, school and a trip to Europe during that time. (Maybe she will chime in on this thread.)

However some people have more significant problems with side effects. So it does seem to be a very individual thing how your body will react to the drugs in terms of side effects. The one commonality is that the vast majority of people are being cured. And that's the important thing.

Best advice is drink lots of water. That really does make a difference for many of the most common side effects. If you drink too much water, you will be washing minerals (especially potassium) out of your body, which could lead to muscle cramps or even high blood pressure. When I started to get foot cramps, I upped my dietary intake of potassium and magnesium (dark leafy greens, brown rice, brazil nuts, pumpkin seeds, bananas), and my foot cramps disappeared very quickly and have not returned.

Basically my 1st 4 weeks have been easy. I began having more energy and mental clarity by Day 5, and that has persisted to the present (Day 25). By Day 7, my viral load had fallen from 9 million to 130, and my liver enzymes were normal for first time in 20 years. Many people are reporting results like this (although perhaps it will be a bit slower with Sovaldi than Harvoni). It is truly astounding how quickly these new drugs knock down the virus.

If you develop any issues once you begin taking the drugs, post them here to the forums and I am sure you will get lots of specific advice and suggestions from people who have been there.

Good luck Mary! You are, in all likelihood, on your way to being cured.

kim

TexasC+ · « **Reply #20 on:** May 30, 2015, 06:54:03 am »

Kim Thanks!! What a blessing there is a cure now.
Great ideas on foods to combat low levels of electrolytes. Will stock up on water to bring to work.
I have been working a lot of hour but plan to take Tuesday off to relax and get some garden time in.
Mary

TexasC+ · « **Reply #21 on:** June 08, 2015, 06:59:50 pm »

Day 8 of treatment. Not sleeping well and taste changes. Labs next monday. Itchy but not much of a rash.

KimInTheForest · « **Reply #22 on:** June 08, 2015, 10:13:06 pm »

I had taste changes and burning mouth (like peppery) early on, both of which went away. I could not sleep during first week. Then, at nurse's suggestion I moved my 2nd dose of Riba up to 4 pm (or 5 pm at latest) and sleep problems pretty much went away. I will not sleep if I take Riba later than that.

best of luck to you

kim

Forums Index

Welcome

Author Topic: C+ (Read 21418 times)