Aa
Aa
A
A
A
Close
Avatar universal

Who is telling me the truth?

I'm new here, but sure not new to Hepc. My husband had a liver transplant Sept. 06. He recovered w/o any complications and takes only 1 mg of Prograf twice daily--good news. Now the bad. His Hepc resurfaced almost immediately and at 1 million VL he chose to begin Pegasys. Has been sick as a dog, was depressed beforehand, is worse now, but refuses AD's completely. I called the clinic nurse to see if we couldn't get a different AD and she said "It won't make any difference at this stage.They're taking him off the treatment in 4 weeks anyway." WHAT??? I asked "At his 12 week point? I know they test then, but aren't you at LEAST going to wait and see what his VL is then?" She said, "Oh, Dr B  says he's not going to make it" Ok, they checked his VL at 4 weeks and he was responding, not to a 0, or even very close, but the dr gave him no reason to think he didn't even have a chance!  She said "You knew going into this he had the worst genotype to treat, why are you acting so shocked?" (Um, ethical behavior and general lack of ANY feeling on her part, maybe??)
I don't even think my hubby knows this!! What do I DO?? I was sobbing by the time I hung up the phone, but I did get her to "promise" she'd look into a different AD because if his days are numbered, then yeah, we're all going to be depressed. Was her behavior completely unconscionable and are we just looking at a death sentence here?? Or is there hope in some other arena??
We have really been though the wringer for the past two years.....can't take much more bad news!
16 Responses
Sort by: Helpful Oldest Newest
Avatar universal
Your comment gave me the most hope. We are sitting here, just  thinking about what is going to happen in 4 weeks when he takes his 12 week PCR test. We already "know" due to the coordinator's lack of discretion, that he is going to be removed from the program. No one has spoken to him about any other form of treatment, nothing. It was "IF this works, you might be able to beat the HEpC. If not, you will die from liver failure". Period.
My hubby has Hepc for at least 35 years prior to having any problems---we had hoped to get 15 from the new one. We got 4 months. Not much of a bargain for $30,000+ we've invested so far.
Yeah. we're both very, very bummed. He's sick as he just took his shot, I'm tired and my daughter is here and bothering us both with her "what's up?" questions--we don't share a lot with the kids.
Mike--hubby decided to wait until they pull him off the tx at 12 weeks and decide about AD's then. He knows how I feel, but says it's stupid to medicate for nothing.Long wknd so he can't call a doc until Tuesday, if he even decides to do it then. Just wnats me to leave him alone. I can do that.
Thanks, both of you.  
Helpful - 0
Avatar universal
I am post LT.  Hep c resurfaced and I could not tolerate full dose of Peg and Riba.  I am on low dose maintenace to keep enysymes down even though my vl is positive.  My hepatologist is very positive that since my first liver took 30 years to distry that with the maintenece dose I can wait until the newer drugs come out which are very promising.  They are " right around the corner" according to what I have read.  He has been givien this second chance.  I hope he dosen't let depression go untreatment for both of your sakes.  The way I understand it if one dosen't work that another might.  Please seek help from a more knowageable and understanding hepatologist.  I do not understand such a negative approach with regard to a patient who has tried so hard and a care giver who has invested so much in time, love and patience.  You need help too.  It is not easy to be understanding and always giving 24/7.  You also have needs and sound depressed yourself.  I wish you both the best.
Helpful - 0
Avatar universal
If your husband doesn't allow you to be involved in his care there's not much you can do. That is a shame primarily for him but also for you. I hope you can get some resolution to this difficult situation. I really do empathize with you. Again, I wish you good luck. Mike
Helpful - 0
Avatar universal
Thanks again all---came in from work and found such kind words for me! Paul57--If I did not pray continuously I would be worse off than I am--I know I have to let go and let God---but that's easier said than done,right? I have had a lot of peaceful moments during this bad time....I just guess I had a better feeling about my hubby's outcome and that his overall mood were better.
Mike--You went through this hell 3 times?? You are my hero. (And you have obviously met our coordinator!! )
We were so limited by our insruance as to where we could go for the transplant--I thought our surgeon was wonderful, but he has nothing to do with hubby now. We could have gone to a different hospital & doctor for the Interferon, but hubby didn't want to--so we are stuck with this very inefficient way of "doing business". There are 4 hepatologists in rotating practice. Each clinic my hubby will see a different one. I have never liked this, as two of the four are not docs he "clicks" with...and each one has their own method of handling things--so often communication gets really bogged down.As far as seeing a doc, my hubby's next appt will be November 29th---3 months between visits and there is no way he can be seen sooner. He has never been to their offices, only the hospital clinic. So when/if they decide to stop treatment, are they just going to have this charming nurse coordinator call us? I cannot imagine getting that kind of news from her.
I am actually not allowed to be a part of his "care team" so to speak, he doesn't want me to go to clinics and such--says I am a distraction and too emotional, so I have my hands tied. (Oddly enough I work in the senior health care industry--with hospice patients, some very ill people, so very little surprises or scares me) but he does not want me involved in his interaction with the docs. I loved your quote of William Blakes. I have heard it before and I will write it down and remember it. I can always leave if he is too much for me--the cancer dx, the transplant wait, then the transplant, the recovery and almost immediately the resurgence of the HepC. He does not see how this could affect me or make me feel stressed. As he always says "THIS is NOT about you". (I think that's the Riba Rage I have heard about!!)  My son & DIL are coming for the wknd. She is a doctor and may be able to help my hubby to see A: he needs to take charge of his care, and fi that means AD's, then take them, also B: if he's unhappy with the care he's getting at the hospital A we have other options!!  It's like moving mud to get him to make a decision, but she can do it. (Son's a lawyer, maybe he sue the coordinater for general nastiness!)
Thanks again--hope everyone has a good weekend---I love that time is flying by--I want to prove those docs wrong and have my hubby be UND at 12 weeks!!
Helpful - 0
Avatar universal
I really don't know where to start. First I will tell you that I was transplanted in June 2000 and cleared hepatitis in June 2004 after treating 3 times and the final time for an extended period of time. I too was very mean during some of that time so, though it may be little consolation to you, this type of mood disorder may not be that uncommon in post transplants who are treating for hepatitis c. Your coordinator is an idiot if your description is accurate. At my clinic if a patient strenuously requests another coordinator the request is granted. And, if a patient tells the coordinator that he/she wants to speak with the doctor the coordinator schedules an appointment right away. I can see a hepatologist anytime I request but I am still seen by my transplant surgeon and he is the one who oversaw my treatment so I see him when I want to see him. ADs can help. They didn't help me but I have known a lot of transplant patients who did get relief from them. And, there are different types of ADs and there is no reason why other drugs should not be tried. I believe I tried Zoloft and Wellbutrin but there may have been others. Unfortunately for me they didn't help much. My center has a psychiatrist on staff who is always available for consultation and it was she who prescribed my ADs. I could see her anytime I felt that I needed to see her. Your center seems rather backward in these areas but I understand why you are stuck with that center. I would be as diplomatic as you can be with whomever you speak with. I would try to get something resolved with his coordinator and if that failed I would go higher in the hierarchy until I got what I needed. Be courteous but be firm. One final word about your difficulty with your husband. I continually cling to a William Blake quote: "The fox condemns the trap and not himself". When things are getting out of hand remember that it's not the man you know - it is the circumstances surrounding him that are to blame . When you can't take it just leave and take a break. If you're going to care for him you must care for yourself so do what you need to do to stay sane. About treatment: It sounds very premature to stop treatment and especially inappropriate to do so without a consultation with the treating physician. Do not tolerate a coordinator dictating his care. She is not qualified to make those types of decisions and it isn't within her job category. Be nice but be firm and if you absolutely cannot get along with her ask for a change in his coordinator. I am so curious to know what the name of your center is so if you feel free to share the name I would appreciate it. Good luck, Mike
Helpful - 0
Avatar universal
Please consider this as way to have peace in your heart directly from the Lord Jesus. I've been through a lot, at times I couldn't even pray because the words of my prayer would put me further in despair. So I learned to call on the name of the Lord; as often as I want, and as loud as I can. Seems too simple to believe, but works everytime. Hope this link comes through correctly:

http://online.recoveryversion.org/FootNotes.asp?FNtsID=2905
Helpful - 0
Avatar universal
Wow, to wake up this am and find all these kind comments have made me feel so much better. I did have to tell my hubby that I'd called this nurse, since she called HIM back, not me (neither of us was home) and he was confursed as to why she called. She doesn't even call with his weekly lab results. I would have told him anyhow. He was furious w/me.
We've had problems with her since day one. But this hospital is the only one anyhere near us that does transplants, so we're stuck with them--altho after hubby ranted at me for a bit last night for sticking my nose where it doesn't belong--he DID agree she had stepped way over the line and he was going to do something about it. That dx should have come from a doctor in an office setting, not in a casual phone conversation!!!
I do try to get away occasionally, but I do always have to return here---often I sleep in the spare room so I don't have to interract with my hubby. He just watches TV all night (well, it's ON all night) and I find that kinda annoying. I start a new job next week and  am training for that, so I am  hoping that being away will help. I might even ask for pm shifts, so I don't have to be home when he is. I don't have anyone I can talk to about how I feel, really, my whole family is  wrapped up in dad's illness--nobody notices me. I probably should toughen up, and truthfully, most days, I do. It goes against my nature to be as unemotional as hubby wants, but I can do it.
Oh--and his docs are hepatologists, in case anyone was confused by that. You have to call this nurse to get thru to any doc, and the docs do not call patients back, ever. It's a frustrating system, has been a real pain all along.
Thanks to you all---shot #8 tonight--but I can't help but wonder "why????"--though he's going to hang in there. (BTW--liver bx showed only mild inflammation--docs told him he could wait a year to treat if he chose----but being post-transplant, he went for it now.)
Thank you sincerely for the thoughts & prayers--we all need them!  
Helpful - 0
Avatar universal
I know you said your husband won't go to a shrink but would it help if you went to someone you could vent to and not have to hear "toughen up", someone who would validate how awful you feel and understandably so.  Everyone seems to be on their last nerve, like dlr said, can you take any time for yourself - even one night away in a hotel on the other side of town to just chill? Or at least a couple hours to yourself where you do something just for you.  
No question this nurse was way out of line.  Hope you find a second opinion soon.  
Keep us updated on how things progress and how you're doing.  Lots of good people here to listen and offer advice.
Helpful - 0
Avatar universal
It sounds to me like I'm reading two separate messages.  Both of them loud and clear.
Unless that nurse knows something she didn't tell you, she couldn't possibly know what your husband's pcr results will be at twelve weeks.  I wouldn't waste a moment of time.  I'd be arranging a consult with his doctor asap.  If you don't like what you hear, find another doctor before he's pulled off.  Then save your own life.  You are downing in despair.  You say you would welcome your own death? You may be in more immediate need than your husband at this point. I just googled "caregivers support groups" and there's lots and lots of links for help.  I'm shocked that even your children don't realize what you've been through.  You must seek mental health care for yourself or you won't be able to be there for your husband.  He's not the only one in trouble here.  My heart aches for you.
Helpful - 0
179856 tn?1333547362
beotch beotch beotch

It's sad to say that some people are the LAST people who should be in the medical field in the world - she sounds like one of the meanest horriblest people there are and I don't know how you didn't go down there and sock her in the nose!

(Can you tell I SERIOUSLY have a problem with these people with NO compassion????)

And you are right who's to say he's NOT going to be UND at week 12?  HOW does this doctor even have the slightest idea of this?  He's a mind reader???????????????

Its too bad you can't switch out to a good hep doc, one with a good caring staff that doesn't GOSSIP about their patients!

I would write a letter to the big cheeses over and there and tell them all about this lady and how she DID in fact step WAY over the line and blah blah.  Hey it might not help your hub get to UND any quicker but I bet it will feel mighty good to put that letter into the mail!!!!!

Our thoughts and prayers are with you and him for a big fat UND to come back and teach them all a good lesson like they need!!!!!!!!!!!

Helpful - 0
217229 tn?1192762404
Wow - Liz... These are hard times, that nurse was out of line.

I don't have all the details --- and even if I did -  might not understand them. I think 2nd opinion - Hepatologist is most definetely necessary - you might need a bump up on the meds or something.

A lot of things can make VLs swing... I think... *food - time of day meds were taken, etc.*

Some people slow respond...

So way out of line at 4 weeks.

But ---- I don't know everything --- So I'll just keep you in my thoughts and your hubby!

Meki
Helpful - 0
Avatar universal
I'm so sorry to see all that you're dealing with right now. Your hubby's nurse sounds like a total beotch- completely heartless. She should lose her job for treating people like that!
  About your husband- I don't know much about post translant issues but it seems that if this tx isn't working, there should be another option somewhere down the road. Unless the Hep C has brought his new liver to cirrhosis already, I don't see why that awful nurse made it sound like such gloom and doom. But as for the medical stuff, others much more knowledable than me will be more helpful here.
I just wanted to tell you that I really feel for your situation. I have not had a husband with excactly the same problems, though my hubby and I both have Hep C, but my ex struggled with drug abuse and depression and I remember feeling much the same way as you. Nothing is ever fun, it's all being strong and sympathetic with them and taking whatever nasty attitude they give, there's nothing rewarding or pleasant to look forward to, then comes the guilt from thinking that way when here hubby is so unwell... yeah I hear ya. I know it's easier said than done, but maybe you could start getting a bit of time to yourself? Just a walk or a long bath or a trip to a store you like... anything to get your mind off this for a while and help you feel like your own person again. I know it's awful what your hubby is going thru but it's not fair that you should be destroyed because of his illness. It sounds like he's angry and who can blame him... but he shouldn't take it out on you all the time. It's great that you posted here- at least you'll find that you're not all alone, and you have a safe place to vent. Just remember that your life is worthwhile too- you gotta take care of yourself as well as you take care of others.
  Best of luck with everything- you and your husband are in my prayers.
  -Dee
Helpful - 0
Avatar universal
Hey, Don't have much in the way of help but I'm feeling for you guys, and prayin' . jerry
Helpful - 0
Avatar universal
Thanks to both of you--actually my hubby was doing the same thing I was, trying to get a new scrip for an AD that does not have the side effect of migraines, from which he already suffers.
What I could NOT believe, and still can't, is that this clinic nurse/coordinater, essentially told me that my husband is going to get yanked from the Interferon treatment program at 12 weeks because he is not a sustained responder. He's had one PCR at 4 weeks and it was about 60,000, down from a little over 1 million, so while I know it has to be 0 or mighty close to that, this was only at 4 weeks. I feel this nurse REALLY violated HIIPAA laws by openly talking to me about things she had just "overheard" in meetings. I couldn't ask her to fill a prescription, but she could tell me that "you knew that with your husband's kind of Hepc that this was the most likely outcome". She also told me not to call her again, as I am not the patient. We are thinking of going to a different clinic for the treatment, and my hubby IS writing a letter of serious complaint about this woman's attitude. She has been nothing but negative from the start.
As far a second opinion--that most assuredly be happening, and soon. Thanks, Alady for the comment about the mental healthcare provider but my hubby will never, and I mean never, go to a "shrink"--does not believe in them. He might (and this is such a reach I can't even fathom it) go on AD's--but only when he thinks there is no alternative. No, Moahunter, I see no "up" at all. We had about 4 months of feeling pretty good post transplant and then he got sick with the HEp c. So in the last 2+ years he has felt moderately ok for 4 months. This is wearing me out, emotionally & physically. I have been having thoughts of suicide...not actively wanting to hurt myself, but wishing I didn't have to get up and do each day. Irony---he's battling for life and I would welcome death. I'm just so tired of the pills, the  groaning, the pain, the complaining endlessly....never being able to do anything fun, ever, because hubby is too sick. His temper flares at me and he makes me cry at the drop of a hat. But everyone else feels so sorry for him, becasue he's sick. All I get it "Sheesh, mom, toughen up, will you? Dad needs you to be strong". I am seriously contemplating leaving him--not divorcing him, just living elsewhere, He keeps saying he doesn't need me, so why do I stay? I hate this disease....I hate what it has done to a kind & loving man and to a strong good marriage. Totally bummed tonight.
  
Helpful - 0
Avatar universal
I would report the nurse to the doctor.  I'd also start looking for a new doc for a second opinion before your hubby is pulled from treatment.  Maybe there is more to the story?

Maybe you should seek out a mental healthcare provider for your husband.
Helpful - 0
232778 tn?1217447111
Liz, I'm 7 months into treatment, and it is not easy on me or my family emotionally, and I was not depressed going into treatment.

There are up and down times for me, but if you are not seeing any up at all, and things are not working, if was you, I would set up an interview with the Hep C doctor (if you can), and if not, make an appointment with your family doctor and go have a meeting.

The symptoms may not get any better for your partner, this is a long treatment, so if you are in trouble now, get help from a medical person who does show you compassion.
Helpful - 0
Have an Answer?

You are reading content posted in the Hepatitis C Community

Top Hepatitis Answerers
317787 tn?1473358451
DC
683231 tn?1467323017
Auburn, WA
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Answer a few simple questions about your Hep C treatment journey.

Those who qualify may receive up to $100 for their time.
Explore More In Our Hep C Learning Center
image description
Learn about this treatable virus.
image description
Getting tested for this viral infection.
image description
3 key steps to getting on treatment.
image description
4 steps to getting on therapy.
image description
What you need to know about Hep C drugs.
image description
How the drugs might affect you.
image description
These tips may up your chances of a cure.
Popular Resources
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.