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Avatar universal

upcoming treatment nerves and family related stress

Hello all!! It's been awhile, but I've definitely made some progress... I have now attended the triple tx class my doctor requires before starting treatment, and I was supposed to start treatment immediately after, but I made the decision to wait until my son starts school again in the fall due to the fact that I've learned that the first two months or so of tx are the worst where side effects are concerned, especially the irritability. However I'm now struggling with that decision because I've been admitted to the hospital twice now for what we thought were my ic issues, but with only a very small infection present I was running high fevers, having lots of pain in my upper abdomen (under my right breast) and my enzymes have shot up again, feeling very fatigued and nauseous, vomiting once a day or at least every other day (ex:had to interrupt writing this post to puke) and pretty much just feeling downright AWFUL!!!! . It's wearing me out, I'd love to feel normal for even just ONE day! and I haven't even started tx yet. wth??!! I've run temps of at least 101 or higher for three days in a row now, im so confused! Both my family doctor and my pain management specialist believe this is due to a flare up with the hep c, but when i asked my GI doc he basically laughed at me, told me my other doctors were dumb and that only people with acute hep c would be experiencing those problems... I"m not a huge fan of this doc but he is free! being paid for by DARS, so i cant really complain i guess.. Has anyone else experienced these so called flare ups? My pain doc said that if my enzymes didn't go back down on their own soon he would seriously have me consider not to wait at all to start treatment, so I'm def confused!! I feel like I have a million questions for all of you amazing people, but I'm sure no one wants to read a three page post lol, so I'll try to keep it short as possible!! Ok, so next huge issue i've been facing is my family. I feel absolutely terrified and alone about starting tx. Every single time I have tried to bring the issues up about my hep c since my diagnosis with my mother, i'm shut down immediately with comments like "why is this all you ever talk about?" or "I just can't deal with the stress of thinking about it, i''m going to have a heart attack with all the stress dealing with you and your illness" among many other similarly mean things. It's extremely hurtful and the resentment coming from her is so thick you can cut it with a knife.... It breaks my heart and scares me even worse about the upcoming tx, not to mention the guilt trips she puts on me over something I just don't have any control over changing at the exact moment. please tell me that I'm not the only one whose family has reacted this was to their diagnosis and treatment? How do I resolve it? My father on the other hand is like and ostrich who sticks his head in the sand and is oblivious to it all because he's not capable of dealing with it either..... Sad but amazing truth is that my five year old son is the most caring and concerned person in my family about this upcoming treatment and bless his little heart he understands it the least!! The only thing he has trouble understanding is how and why mommy taking medicine that's supposed to make her better is going to make her feel worse for awhile... He's a trooper though, my saving grace. So as always any and all suggestions and advice from all of you wise people will be most appreciated!!! Thanks so much in advance and sorry for the super long post! Much love!
21 Responses
766573 tn?1365166466
You were hospitalized twice and both your family doctor and pain management specialist think your HCV is flaring up but your GI does not? Were you ever able to determine the level of fibrosis you have?

Sorry about your parents. I imagine it can be pretty overwhelming for anyone to hear these things about their child. I hope they come round. It takes time like anything else. I do not have much contact with my family so hopefully others can share how they have (attempted) to bridge that gap. This can sure be a lonely disease with no support. I hope for the sake of your son they will eventually become more accepting. It would be ideal to be able to rely on your family for support when you treat. Stay strong♫

1644356 tn?1349783211
The people on this forum are tremendously giving and supporting in asmuch as an internet connection can be. Use them! Be strong, hope all the best is headed your way after treatment.
148588 tn?1465778809
Your gastro doc is correct that the symptoms you describe are typical for some acute phase patients but not for chronic. However, I would be interesed in knowing the reason for the elevated enzymes. I assume you are on a lot of medications for your other problems and this can cause elevated ALT/AST. When you say your "enzymes have shot up again", what are your numbers usually, what have they done in the past, and what have they done during your recent flare ups?
As for your family, this isn't unusual. They want this to be over and for it to be a closed chapter in your life, but you shouldn't have to depend on a 5 year old for support during tx  -  not fair to you, not fair to him.
I don't remember you ever posting biopsy, Fibrosure, or Fibroscan results, so I'm assuming this doctor is just jumping in and doing tx.  If I were you, I would want to know this info before starting a potentially difficult tx on top of existing health problems.

Take care.

d
Avatar universal
I am very sorry about your parents lack of support for you. This will be all you will be able to talk about for some time because it is your health that makes it possible for you to have any sort of life. (I would be happy to talk to her if you want to pm me) Most importantly enlist their help in caring for your boy. Tx will be hard enough and your son is too young to have to handle what you will be going through.
Use this forum as much as you can for support-if you don't want to post, send messages to people going through what you are or will be going through or people you feel you can relate to. We have all been there to some degree and we care.
I think Desert is right that the other meds may be causing additional liver problems,but your Hep. C is part of the problem and when your liver can stop fighting it, it will be able to handle the stresses of your other health issues and the drugs you must take.
Hang in there and know that when this has all passed, you will be healthy and ready to start a new life full of strength and hope.
All the best to you, dear.
Avatar universal
Thanks everyone for all of the support and answers.... It all helps and is much appreciated. So to answer a few questions, I do not know what state my liver is in. I have asked my doctor for a biopsy but he said that there is no point in doing one since im about to tx anyway, also when I asked him to do a fibro sure test he said that he felt there was again no point in doing one since i would be txing soon and also said that he believes they aren't a good test because they are inconclusive. He said he would do one if i insisted on it but that he felt it would be a waste of my time and money. Im still quite confused about the "flare ups", Desert to answer your question about the elevated enzymes, im not to savy on all of the correct lingo but this is what i can tell you, before i was hospitalized and I had my functions tested they were much better than they had been when i was first diagnosed, my fam doc said that they were only very slightly elevated, however i dont have the numbers.
This time in the hospital he told me that one of them was around like 600, and the other at 480. I;m almost positive about these numbers but i need to get out my lab work and look to be absolutely sure. My mom said she believes thats what the doc said when he came into my room also... Speaking of my mother, Im not sure what to expect or how to react anymore. I need to take into consideration that she was just diagnosed with fibromayalgia (sp?) about a week ago along with bursitis in her hip. however now that she has a long term chronic painful illness she wants to talk about it all the time the same way i did when i was first diagnosed with hep c. I'm finding it hard to be as supportive as i want to be with her because i resent that she wasn't and still isn't really there for me emotionally. I will just use this forum as much as possible for support, and really what better place to get it than from people who have gone and are going through all stages of the same process..... Im not sure what other meds could be causing my liver problems being that all of my medication was re-evaluated and changed when we found out about the hep c and my GI doc also said that none of my meds should be causing those symptoms, I'm at a loss!! yet I feel as if my GI doc would take more of an interest in my symptoms then he might figure it out. who knows!!! ok I'm backtracking for a min to answer some questions from desert: They have not determined what is causing the flare ups, when i asked what i was supposed to do to make it better, he said just to give it time and to talk to my GI doc, my pain doc however said that if the numbers didnt go down on their own he would recommend treating now rather than waiting for my son to go back to school..... Also to rivil, my parents have been really amazing at helping me with my son, i actually couldn't ask for better where thats concerned, however they both are very busy with work and with my chronic pain and now these bad flare ups we can all find it pretty challenging to entertain a five year old with never ending energy! I've done some things like investing in an above ground pool to keep him occupied because its something i also love to do that isn't high impact on my body...
Avatar universal
i have experienced experienced transaminase flair ups over the past 31 year that i have had hepatitis c.  The ALT would rise to 400 to 600 and i would experience pain in the upper quadrant, but i never experienced an elevated temperature.    

some folks do treatment with very few sides but i was not one of those. i am at week 43 of triple therapy with incivek and have experienced emotional, mental and physical difficulty throughout treatment.  emotional issues included crying for hours and anxiety. i was unable to leave the house or even post on this site. the mental includes difficulty concentrating including doing simple tasks.  physical problems include insomnia. fatigue, rashes, anemias, etc. the only thing that keep me going was the knowledge that i was experiencing cirrhosis and esophageal varices, so i really had no choice.  had i not known that i was experiencing advanced liver disease, i would have never been able to get to week 43. hopefully your treatment will be much easier than mine.  cirrhotics tend to have a rougher time in treatment than people than less liver disease  

i wish you success in your treatment.

eric
Avatar universal
Eric, can you tell me a little bit more about "transaminase flair ups"? what causes it, what is it exactly, and what helps to control it? Im terrified of the side effects but trying my hardest to stay positive... I was told in the class i had to take that my hair could very possibly fall out, that i can only wash it every other day, no blow drying curling or straightening, and to use shampoos and conditioners that are alcohol free, can anyone tell me how often hair loss happens and to what extent? I mean am I looking at being bald? or just having my hair thin out tremendously? My pain doc also wants to up my dosage of pain meds due to the upcoming treatment, when he last asked i turned him down and said i'd rather play it by ear and adjust as we go along, but he made it seem as if the body aches are extremely painful and that it would cause the rest of my pain issues to flare up, so i have an appointment on the first of aug and am seriously considering having him up the dosage so that I have the extra pain relief if needed and if not well then no harm..... any thoughts on this?
Avatar universal
Oh WOW I can't believe I forgot to mention this, but I am having the absolute worst time remembering things (no pun intended lol)!!!!! I cant remember whether or not i've already taken a medication and then stress about under or over dosing, or the most simple of things like brushing my teeth or my age. EVERYTHING! I have noticed it's gotten much worse with the flare ups. Its very alarming to me and makes me very anxious, not to mention it drives everyone around me nuts! Is this at all possibly related to the hep c???
Avatar universal
i may have misunderstood your question, the flair ups that i had were two enzymes ALT and AST that are measured on a liver function test.  these two enzymes are routinely measured when people take drugs that may cause liver damage.  and in the case of viral hepatitis these go up when there is an increase in liver cell death.  

i lost hair during treatment, but have not yet gone bald.  some folks recommend nioxin shampoo and conditioner.  others say they have had allergic reactions to the nioxin products.  when i started treatment my hair was wavy, but now it is much thinner and straight.  most people say that their hair does grow back after treatment.

i can't comment on the pain drugs. i was not on any pain meds before treatment.  i did take a few co-tylenols during treatment when i had the bad rash.  i mostly used tylenol and advil during treatment.

i'm off to do shot 44.

eric
Avatar universal
i have trouble with remember if i took the meds too.  i have one of those boxes that have the days off the days of the week. and below the days of the weeks are slots where i put my am, noon and pm meds. i fill the box each week.   drug store carry these boxes.
Avatar universal
i am sorry my previous post made no sense.  the thing that helped me remember to take each dose was 7 Day Am/pm Pill Organizer.
eric
Avatar universal
i am sorry my previous post made no sense.  the thing that helped me remember to take each dose was 7 Day Am/pm Pill Organizer.
eric
163305 tn?1333668571
Hi,
If I remember correctly your wrote a while back and the health care in your area is not exactly the best.

It makes no sense to jump into treatment when you have no idea how healthy or damaged your liver maybe~not with a young child to care for.

There are much better treatments currently in trial expected to be available in the next 2-5 years. If your liver is healthy, I would strongly advise you to wait. If your biopsy shows stage 0 or 1, you really should not jump into doing treatment now. I believe you already have health issues and a young child to care for.

Tell your GI you want a biopsy. It's your health, and your body. You are the one who will doing the treatment, not him.

Is it possible at all to see a hepatologist ? This is a liver specialist and they know much more about the liver than the GI does.

OH
Avatar universal
i agree with oh.   i would not treat with minimal liver damage.  its much better to find out before treatment if you actually need to treat.  
eric
Avatar universal
I would work on other areas of health and be in excellent shape both mentally and physically before starting treatment.  

The problems you describe sound as though it is something other than chronic Hep C.  

It's easy to focus on and blame the Hep C for any number of ailments than might come from any other causes.  It's a scary thing, but most people with chronic Hep C are asymptomatic.  
Avatar universal
The reason i've decided to do treatment sooner rather than later is because right now I have help available to me through DARS (texas rehabilitation services) who are paying for doc visits and labs, also every single doctor i've spoken with has told me to treat now and not wait, they have all been very adamant about that. Also I have tremendous support with my son and myself (besides emotionally) at the moment where as I'm not sure how long that may or may not last. I feel strongly that txing now while I'm young and have support would be the best decision. You are right however about demanding a biopsy or some sort of test to tell me what shape my liver is in, I just needed advice because i wasn't sure as to why it was so important to have done when my GI doc said it wasn't. I wish i had access to a hepatologist however being that I have no insurance, and am having these things paid for by DARS I dont have much of a say so in who I see and I figure a GI must be better than absolutely no one at all. I was told in the class that I had to take that the companies that make the tx meds will fund all the expenses of the meds, since i have no insurance at all. They have told me that now is the time to do it since the pharm companies that make the tx meds have plenty of money right now to pay for me to be treated, but that you never know when that could all end so to take advantage and tx NOW!
Avatar universal
my other health problems will not go away though, im stuck with them for the rest of my life, along with a life time of meds and surgeries to treat those. I know my other condition very well and dont think i confuse it with hep c. completely different symptoms.... Actually my other condition is in really great control right now, better than it has been in a while......
148588 tn?1465778809
I never like to see someone rushed into tx, but it's true that with the state of the economy, the big changes coming probably in how HCV is treated, and other factors there may never be a better time to get 'free' tx at least in the near future. Just don't let Dr. O cut corners just because you're covered under DARS. HCV tx has become so 'routine' that many doctors only run bloodwork every other week in the beginning of tx instead of every week. Insist on CBC, CMP, TSH every week at least for the first month or so. You may not get your biopsy, since you've decided to go ahead with tx regardless, but this is something that might be worth expending energy on.
BB Regional is pretty quick about getting most of this done in a few hours if you work with them. If anyone tells you this isn't standard procedure, tell them yours isn't a standard case.
Good luck with your decision. (And your family might surprise you. It's not unusual for families to step up and do what's necessary when their kid's health is involved.

d
148588 tn?1465778809
You also will have the option of falling back on the new IFN-free txs in a couple years (probably) if this turns out to be too physically demanding.
317787 tn?1473358451
Hi there, I am so very sorry for what you are going through with your family.  I have a similar situation, it is very hurtful.  I hope they will help you with your son when you start tx, if they don't you will have to try )TRY) to just concentrate on you and  your son.  This will be a lot for you to handle.  If you can wait until he is in school that would really help you quite a bit.

I am worried about your enzymes being so elevated.  That is not a good sign though it could be your medications.  Is it possible that your meds along with the HCV are interacting with each other and it is making you sick?  Have you tried cutting back?  Drinking more water to help your liver detox your body?

Again, so very sorry about your parents, I know how painful that is.  I miss my family very much.  I don't know if they are in denial or what.  They did not think I needed to treat.  They did not understand that I was looking at a transplant if I did not get rid of HCV.  (Transplant if I was lucky since over 10K people die every year needing a transplant for HCV related liver failure)

My best to you
Avatar universal
Desrt, you are so very right as usual and I appreciate the you understand the need to tx while its free!! I will absolutely follow your advice and advocate for myself (not what im best at, especially when it comes to docs). Dee: as i've mentioned before, both my pain management doc and GI doc have said that none of my medications would be causing any problems with my liver or the enzymes... they chose liver safe medications to switch me to when we found out about the hep c... As for my parents, im hoping that they will come around here in a few weeks when i actually do start the tx as desrt has said. They are simply wonderful with my son now and I dont expect that to change, they adore him, and i'm so very thankful for their help with him...Drinking more water is NEVER a bad idea, and i sure need to get in the habit of drinking more!
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