Hep C has taken over my life - Support needed desperately

Hello everyone. I need to share my story because I am at a point where I feel that this disease has spun my life completely out of control.

Four years ago I was not only diagnosed with hep c, but I was told after a panel of tests that I wouldnt be able to conceive a pregnancy naturally. My husband and I had been trying for years, and now i had more than one devastating thing to hold on my shoulders. We had a choice to make, seek treatment or pursue ivf first due to my advancing age (i am now in my early 40's). My hep specialist saw no reason why we shouldn't pursue ivf at the time because newer hep c drugs were on the horizon in the next few years, and I have had no health problems or visible damage to date, only somewhat elevated liver enzyme levels from the chronic disease.

Due to finances, it ended up taking us almost four years to afford one cycle of ivf, and I am shocked to say that that one cycle worked.. I am currently in my 3rd trimester. That is the good news. The rest of my story, what I am dealing with, is a challenge to even type out...

about a year after my diagnosis, I began experiencing high levels of anxiety anytime that I even find so much as a small scratch on myself. My mind automatically went into panic mode and I would have to back-track to everything that I touched in order to sanitize it because I do not ever want my husband to be exposed to the virus. This behavior led to me having to wash my hands over and over again, both before and after bandaging wherever the wound is. I can't distinguish between a minor scratch or mark that doesnt seem to be bleeding, and an actual cut. It all has to be covered and I have to sanitize all items i know my husband touches.

The problem with having this sort of OCD means that all of the excessive hand-washing has led to cracks popping up from the severely dry skin. So it has become a viscious cycle that defeats the initial purpose because my hands become worse than ever. No matter what i try to do to break the cycle, i just keep finding more scratches or cracks, especially after house work. There are days when I am spending more time in a restaurant restroom trying to clean and cover a new-found scratch or crack while my husband sits alone at the table eating. It breaks my heart...........

Since I have become pregnant, my OCD/panic attacks/anxiety have reached an all-time high. I now have an additional worry for my baby. Even just thinking about how I will deal with this when she is here, I start to panic. The OCD has become a thousand times worse now that I am pregnant. It has stolen away any happiness that I should have been entitled to after years of trying unsuccessfully for this baby.

Sometimes these incidents where I discover a scratch or a crack and have to deal with easing my worries, will steal hours out of my day or night, and I'm left in tears of frustration. Something happens every single day. It's like the excessive hand washing has damaged my skin so badly that even the slightest bump against anything breaks the skin.. And to me, any skin break, even minor, means blood exposure. I honestly don't know how to cope anymore. The problem is that if I am not diligent about the findings, I AM putting my husband (and eventually my daughter) at risk. How do you solve that problem????

In addition, since my diagnosis, I suddenly occasionally get rashes on my forehead, around my nose, and on my chest that sometimes get so bad that THEY even bleed. Imagine the problems that causes me???? It just never ends.

I discussed my anxiety with my doctor and I flat out asked for help. I was automatically thrown a prescription for zoloft, which i will not take while pregnant. I was also referred to a therapist who claimed to specialize in OCD and behavioral therapy- and after a number of pricey sessions, his "plan" to approach my issues was....Medication, which I had told him during the first session, was not an option at this time. No behavioral therapy was discussed, which was what I wanted. If i wanted to just sit and talk about my frustrations every week, I could sit and talk to my husband for free. There was no benefit to the sessions, so I discontinued them before we ended up spending anymore money that we couldn't afford.

My hope had been to get real help before my child is born, so that I am not having to deal with these episodes after she is here. There is no way that I can continue on this way with a baby that needs my attention. I also do not want her growing up seeing these rituals and mimicking them, thinking that is in any way "normal." I had hoped to have a handle on my panick attacks and the OCD/hand washing so that I could start to break those destructive cycles now.

I want so very badly to be able to enjoy my motherhood, and not continue to be consumed by my fears of every little nick or scratch infecting my family.

My hopes for ever getting the new treatments out for hep c are gone since finding out from my specialist that they can run upwards of 30 thousand dollars a month. All of the hoops to jump through with insurance in order to get them to pay a percentage, are just overwhelmibg, and I'm hearing that some will cover a good amount, most will deny the request all together, especially if there is little or no liver damage.

Maybe they would like to pay for my enormous band aid expenses every month and whatever other help I will continue to need for my OCD for the rest of my life if they don't want to help with the treatment. Either way, it will all add up in the end. I am supposed to return to my specialist in nov of 2016 to see if i am ready to look into treatment, but i can already predict that we wont be able to afford it, even a co pay. We could barely afford the cheapest IVF place we could find to do one cycle, and that took years of getting the money together... Well under $10,000. As such, my hopes for getting hep c treatment are shattered.

I have been a nervous wreck, and constantly worrying about infecting my husband and/or daughter. I have nightmares about the nurses not bathing her completely after she is born, to help lessen her chances of being exposed to any of my blood. I spent so many years focused solely on hoping to conceive, that I did not stop to consider how my hep c transmission fears would intensify with a baby.

This diagnosis has ruined my life, and I can only imagine how it has affected my husband, having to see what it's done to me. He has been so understanding and supportive, and he doesn't have concerns, which blows me away because of the intense level of mine. I can barely even kiss him or have much contact because my mind is constantly telling me "what if you have an open crack on your lips? What if youve got an undiscovered scratch or crack on your hands?" Even our marriage suffers from this disease. I feel that I have to protect everyone from me, so in a sense I bubble-wrap them and never touch them because I am so afraid I'll break them. I have never shared my diagnosis with anyone else in my life, I am so mortified. I don't dare visit anyone and risk putting them in harms way. So in that respect I have alienated my friends and loved ones because inwardly I feel that I'm actually looking out for them.

All of this hell I have been forced to endure because thirteen years ago I had to stay with a family member whom took in a drug addict relative who did not disclose her disease right away (and when she did, she did so with a laugh)-and shared a bathroom with me, breaking into my locked cabinet and now looking back, I realize that she was using my razors, all the while knowing what she was doing to me. This same person would fight with me and verbally express her dislike of me, even threatening to stick me with an aids-infected needle. In retrospect, I realize I am lucky that I walked away with only hep c. But nonetheless, it has destroyed my life. In that respect, she got her wish. She destroyed me. She won. She would be so happy to know what she has caused me, and my own family. I am still speechless and bewildered that there can be such evil in this world.......

Her and this disease have taken so much happiness and freedom away from me, have stolen away so much happiness that I should be enjoying right now. And this is a domino effect which falls back upon my husband, and one day our child.

Now here I am so many years later, given up on 'behavioral' therapy which wasn't behavioral at all, and just hoping for some sort of support, because I am at the end of my rope with how the disease has taken over my life and taken so much control over me. I just want to be able to relax and ENJOY my life, and my new baby when she comes. I want to go hours without having to wash my hands or find another scratch or crack and deal with hours of clean-up. I want to not feel like a prisoner anymore.

Can anyone relate??????

Post Edited (Lostinanxiety) : 12/9/2015 11:22:15 PM (GMT-7)

**David** said...
You desperately need to see a shrink.

Do you even read posts here, or do you just skim them for reasons to post something that has no validity whatsoever? Had you actually read the post, you would know that the therapist I sought out for help and saw, did not work out for me. This is supposed to be a SUPPORT forum, not a trolling forum for posters like you to post crass remarks that are not even consistent with the original post. Try not posting unless you actually have something useful to show for it, ie that you've actually read the OP.

I wish I could say words to make it all better. But there are none except "you will get stronger because of this road block" - I to had to deal with the insurance company - took about 3 months before approval.
I had to do a drug and alcohol test to prove I do not to any drugs or drink alcohol. My deductible is 20.00 for the ribavirin and Solvadi and every two weeks a co pay of $30.00 - most of the blood test work is covered. I am very blessed in the fact that I have great insurance from a "great employer". After all of this is done - I am considering quitting smoking. I am sure I will go thru anxiety when I do that. Again I am hoping all will go well with you and "do not give you cousin anymore space in your head". What happened happened, just need to move on to the next thing we need to deal with, like that baby you are going to have. When ever I got a cut of which I am so lucky nothing more than a papercut - I stopped what I was doing and took care of the cut, etc. Sorry cannot relate to the hand washing but I am sure it is like one of the OCD things I do - I have to double and triple check a hotel door when it closes before I leave my floor. I may go back even after I get in the car. So I am again hoping all is going to be well. Thank you for sharing your "life". Respectfully

I read your post, twice. If a therapist didn't work out, get another one. OCD is a psychological problem and you need treatment for it. This is not solely physical. Sorry I was so direct and to the point, but was in a hurry to be somewhere and wanted to weigh in before leaving the house.

Rubi said...
Lost: My liver does not have much damage either. And, it is normal for them to check for drugs and alcohol usage. If you are using or drinking alot you may not be responsible at taking your meds the way they should be taken. (at least this is what I was told) They will also check for AIDS. Also, normal for them to expect that you are taking care of yourself otherwise. Make sure you have done all your well woman checks.

I worked in the insurance field for about 20 years, so while I may not know all the state specific rules, I do know the general information. At least for the US. I do not mind answering basic questions. And, I can share my experience in getting approval.


Rubi

I am SO glad to hear you have not suffered much damage, either! The scariest part about hcv is how 'silent' it is :( Wow, I wasnt aware of the tests to ensure applicants aren't doing drugs or drinking. But I am fortunate in that I have never touched a drug in my life (I definitely saw too many lives in my own family destroyed by drug use), and until I was diagnosed, i only had an occasional drink socially, which was at most one drink about once a month. Since my diagnosis four years ago, i do not touch alcohol. And I have been tested for HIV every few months both during my IVF cycle, and now that I am pregnant. Thankfully, always negative. I am thankful that I won't have any issues with that end of things.. I really appreciate all of this information so mych, it helps me to feel more prepared for what I can expect when the time comes! I am in the US so this is a BIG help and I cannot thank you enough!!!! :)

justvlm said...
Hello, as a mother and wife I can relate to your anxiety. You do sound extremely panicked, but most have when first diagnosed. That coupled with a much anticipated baby. As a stranger here in cyberspace I can only say I have most likely had hcv since the early 80 s. I found out in 2007. I have been married for 28 yrs and have a 24 y/O son. Both tested negative. In a mad OCD panic of about four months I scoured the web and repeatedly, it must be blood to blood contact. From that point I began self care because our mind and bodies work together.
I suspect you know that your best course is to take care of your skin and minimize blood exposure. I can see you are wanting to avoid meds while pg, but the sound of your post, my humble opinion is mental health is just as important, and much MUCH more when your baby gets here. There is enough hormonal stuff that comes with birth. Anyway, I really just wanted to send a cyber hug and some advice... Look up Tara Brach, mindful meditation. I don't subscribe to her beliefs, so don't let that put you off before you give her a listen. Be kind to yourself every chance you get, it really will be okay.

Thank you so much for your reply, and for sharing! I am so happy to hear that your husband and son tested negative. My husband did as well and we have been together for over ten years. I am so thankful. Yes, i have definitely been trying to fix my skin from all of the hand washing. I intend to buy cotton spa gloves and start treating my hands with intensive therapy lotions to help things along. I keep telling myself that I cannot have this excessive/destructive hand washing and injury cycle once the baby is here. I have to try whatever I can. Thank you for the mindful meditation suggestion, i am going to look her up right now! I appreciate it very much!

Welcome to the hep forum. Congrats on your pregnancy!

I see you have many of our caring members posting to support you. I just wanted to pop in and let you know about the Healing Well Anxiety and Panic forum. Here is a link for you.

I think you may find some additional support from the good folks there, as well. www.healingwell.com/community/default.aspx?f=9

The great news in the hep world is that a cure is available. The new Hep C treatment is pretty easy compared to the older versions. In as little as 12 weeks you will be cured of Hep C and no longer will have the virus to be burdened with.

We are here to support you. Again...Welcome! Big Hugs

Lostinanxiety I have had hep-c for 35-40 years,I married my wife 34 years ago . I never knew i had hep till about 5 years ago.I have had too many scratches and open cuts to count when I had no clue as to what was attacking me.After i found out my wife and children were tested and came up clean,so this makes me either extremely lucky or shows that the chances of spreading hep,c is minimal. Remember Hep is spread by blood to blood contact,NOTHING ELSE. That is the only way it can be spread,I was security in bars for many years and obviously I hit the wrong guy ...as if you get in a fight ,even if you win you don't walk away without a scratch..and who ever your fighting you can count on being cut or bleeding from somewhere..So the odds are against you spreading it,you and the other person both have to be bleeding if your wound is covered its highly unlikely this can happen. Hep does not survive long in the open air also.If you live or work with someone who has hepatitis C, you will NOT get the disease from day-to-day contact. To get hepatitis C, you must share blood with a person who is infected with HCV.....I hope this information helps some ,I really hate this sneaky little devil of a disease and pray you will beat it.. it plays on your head ,slams your body and wreaks havoc on day to day life.. my sincere hopes and prayers for you . It may seem so hard right now but with the advances in the medical field,there is hope and you can kill this devil..

A.Ziffle Hello friend!! how are you doing? Good to see you,I trust your doing well? This Harvoni seems to be hitting Hep-c hard and giving hope to all.I also saw on the news that one of the surgeons that were on my team during transplant has found a cure for diabetes ! Dr. James Shapiro its in trail stage so it won,t be released for probably three years . If you know anyone who has diabetes maybe this might cheer them up, more information can be found at" Clinical Islet Transplant Program website University of Alberta" have a great Christmas buddy!!best to you and yours!!

Lostinanxiety... Hello!! Just wondering how you are? We all wonder and hope your doing well? drop us a few lines .. take a break and converse a bit with us..smile ....your not alone in this

My dr never did any test except for the routing height, weight, bp stuff they do before you go wait in the little room.

I had a genotype and load count done just by ordering on the phone.
$250 for both.

You can find a federally funded clinic that charges on a sliding scale... all I've paid them the whole time from first visit till I finished and got a Not Detected lab report ...was $25 at the clinic.

I got Sovaldi free from Gilead's support path and Abbvie gave me ribavirin but that took time so I did have to pay for two months... about $700 total.

I also helped a friend's son apply and get the meds and they had been trying for a year. He paid almost nothing since he didn't have to buy the ribavirin. He's about 2 months into his 3 month treatment. He only had to take Havroni

Good luck with treatment.