First week post treatment issues...

[sue4hula]

Hi everyone.  I just finished 12 weeks of Sovaldi/Ribavirin/Interferon.  Third attempt, Gt1a, early cirrhosis.



I made it through treatment fairly well with some anxietyand emotional issues in the early weeks, a couple of coast weeks and then the last few weeks I had a lot of fatigue from low hemoglobin.  

Since I stopped treatment I feel like my emotions are in high gear again.  Anxieties over LITTLE things, pacing, insomnia.  Didn't sleep at all Thursday night despite being exhausted.  Today I went to Macys to check out their big sale.  I was overwhelmed by the people and distractions and felt disconnected from myself.  I had to leave and come home.  I know coming off the meds can mess with us.  I guess I just need to know if I'm losing my mind!  Any suggestions?  

I did have labs yesterday, including a CBC, CMP and one week post viral load test.  I know that likely contributed to my insomnia.  

Thanks for everyone's support on this board.  Y'all make this journey better!

[Dee1956]

Hi I did Interferon Peg, Riba, I know the feeling of being overwhelmed after tx.  I wanted to say, you are ok, give yourself some time to recover from the tx.
I felt the same way, I never wrote about it cause I thought I was losing my mind as well :)
How brave of you to ask for help.  The doctors don't tell us what to expect post tx other than to say it will take 3 months for you to recover.  We all think as soon as we are finished we will be fine, not true
Plus with the newer meds and everyone saying there are no sx it is even worse.
Take Care, drink water to flush your system, hang in there, you are not alone, not by a long shot.  For every person who write there are many many people who read and are are helped by these posts
Dee

[QWC]

Thank You so much Mike for your True Heart-felt answer.   It makes me feel better to know I am not the only one that feels this way.  (I also lived in NYC  for 10 years where I was a Professional Ballet/ Modern Dancer and know the doctors and nurses there  can be even ruder and busier than the ones here in Pgh.)  I was beginning to feel like "Elaine" from Seinfeld when she had something Derogatory written in her file and no doctor would see her (don't  know if you ever saw that one, but it was pretty funny.)    Anyways, I also, like you, have quite a bad taste in my mouth when it comes to most doctors and even insurance companies.  I am currently appealing an insurance claim because my insurance will cover all kinds of pills that wreak havoc on our livers, but won't cover me for a full Chiropractic session for my 2 herniated, bulging spinal discs that radiate pain all the way down into my leg.  These doctors and a lot of medical people in our "Western" system seem so greedy it is sickening sometimes.   I am refreshed to hear that you and Rub_eye Jack feel the same way.  This is such a lonely disease and sometimes, realizing and being able to talk to others in the same boat is quite comforting ...Thank You And Good Luck to us all in our "Journeys"---I believe in Karma and do think the "Bad Apple" docs will get their dose of Karma.  

[Sarah1949]

Hi Mike, I could have written this myself. I've seen 5 different specialists now and only like one of them, the one I'm using now because he's willing to write the prescription I want, but his office insurance wise has much to be desired. I also enjoy living alone and after reading so many caregiver comments on another forum I feel like I'm better off being alone. At least I'm happier.

[mike716]

You are not alone in not finding a hep-MD you like and trust. I've been looking in NYC for six years and still haven't found one. My latest, who at least was willing to prescribe S+O for me and help get me patient assistance, doesn't have a nurse, his office won't call me with lab results, and his wife, who answers the phone and makes appointments, told me to "stop bothering him" because "he has a lot of really sick patients"! (I have advanced fibrosis.)

Personally, I never liked doctors and consider them all to be saw-bones and pill-pushers.

As far as doing Tx without support from family, every cloud has a silver lining. Just think how lucky you are that there will be no one around to bother you, ask you dumb questions, wake you up when you want to sleep, play music you don't want to hear, and all the other annoying things that family do. I am also alone and will be doing Tx with no help from family, and I wouldn't have it any other way. When I'm sick, I just want to be left alone.

My advice is: stick with the good folks in this forum, and stop worrying about incompetent medicos and unhelpful family and friends.

Good luck.

Mike

[patra_]

Sue:  What everyone else said (except WmoMitch, as I don't know Hawaiian), : -).

12 wks will pass fast, especially if you keep your mind busy.  Have you got the results of your 1 wk EOT Labs?  Inquiring minds want to know!

Hang in there; sending special prayers.  Pat

[WmoMitch]

Maika'i ka hana!

Advice:  E hula 'oe.  Macy's, Costco, a'ole.

E holo mua ko'u hoaaloha.

[QWC]

Thank You for your compassionate response, patra.  I do think you are right, and I have started praying harder for it, and can only hope everything will work out right.  I think I am going to just go with the flow, have my colon thing done with this new G. I., and then probably stick with him for upcoming treatment.  I guess I just get nervous because of what you said, the trauma of the past.  But the good news is this Achillion stuff that they are really making strides with, and hopefully by that time I will have some more Patient-doctor rappore built up with this new G. I..  Thank You for your response, sometimes that's all it takes, is to talk with someone about the fear and anxiety--that's what I miss most from my Mom.  Thank You.

[patra_]

Sorry to hear that.  Not all hight powered specialists are jerks, though. Doesn't PA have several excellent teaching hospitals/transplant centers?  Might want to try a different one.

Also, you have, obviously been traumatized by what happened to your Mom and your BF.  Take a step back, take a deep breath and start focusing on you instead of what happened to them.  Maybe that will help ou be open to a new Dr.  Doesn't hurt to kind of talk to the Office/hospital staff to kind of get a feel for how the Drs deal with people.  We have an excellent surgeon in our area, but he has zero people skills.  If I want a surgeon, I could overlook his lack of bedside manner. (This is just an example).  

Finally, a lot of times it just takes time to build rapport with a doctor--just want to pick one whose knowledge and skills are worth the effort.

Good Luck and hang in there.  There are answers to all these questions.

[QWC]

There are some teaching hospitals--I am in PA--but the first Hep Doc that was recommended for my boyfriend 5-6 years ago, was through our much- liked Rheumatalogist --that Hep dr.  was one doctor who turned out to be a very uncaring, cocky, know-it-all, who wrongly assumed we were drug-users, and laughed at me for taking garlic supplements (which I don't take anymore)--and he was the "Head" of the hep dept. at this one very prominent hospital.   My boyfriend nearly died from treatment, did not get cured, and had no follow-up from that doc what-so-ever.  Then the very same doc told me he would not continue to see me unless I went on interferon right then and there.  I declined.  The latest G. I. I saw last month was supposed to also be a Hep specialist and seemed nice enough, but I just cannot tell if he has enough experience with Hep, as his words were, "I am a 'card-carrying G.I.".  I do not know whether to just stay with him (I also have to have colonoscopes every 5 years as my Mom passed away from colon cancer at a very young age, and they found 3 benign polyps in me when I was just 24, which has led to a lot of severe depression from her death.  So I just feel really confused as to whether I should seek out yet another Hepatologist, or just stay with this G. I.--it is hard having no physical family support or no one to help guide me and I get Very down about it , which is why I think I need an "extra" supportive "dream" hep dr.

[Mmorgan854]

Wonderful news!!!  I have been watching for your post  as I'm treating with Solvaldi an RIBA also an 4 weeks more till EOT.  I just know that the waiting period will difficult but your a third of the way thru till you her those wonderful results, SVR,  God willing.  So happy for you,,,,,,take care.  Mary

[Verdugo]

Sue,

You are normal!  I think your past experence will apply to your current recovery because you are taking 2 of the three drugs you previously took.  

I took S+R and am 1 month EOT.  I'm experiencing some old issues with digestion which has me bothered but I'm trying to chalk it up to my body readjusting to a new life with no meds.  My mind feels a bit numb and it's difficult to get motivated.  Hoping for it to pass soon.

I actually felt better on the meds but it may have been the adrenaline effect.  IDK.  

In some respects, the waiting is more difficult than the treating!

[Livelife777]

Hi Sue.   You were having a panic attack at Macy's due to the after effects of this powerful medicine.   They will lesson over time, but expect this uncomfortable experience to last for several weeks or more.   Keep the faith, as it also happened to many of us.   It's overwhelming and scary.   I also went thru it and it does go away.
Honestly wish we had been told this prior to Tx.   Would have helped us to better understand what to expect.

Take it easy, and know everyday it will get better
...Kim

[patra_]

Have you checked/ are you close enough to make checking worthwhile, to your State's major teaching hospital, or are you in a  State that has more than one excellent teaching hospital, check all that are within reasonable commuting distance of you (that is different for each person, depending on circumstances).  You are usually going to find your best, most experienced hepas there.  

Or, like me, you could ask your regular Dr, if it were him/her, who she/he would select for treatment.  I am blessed as my Dr is involved in hep c research AND is good, caring, willing to listen and discuss.  I wish that for you - and everyone.

[QWC]

Wow, how awesome!  And what a wonderful nurse to boot!  I have tried and tried to do research, but it always seems like when I get my hopes up, the doc is nothing in person like what his bio says.  I will turn to more Divine advice as well then, as I don't feel comfortable telling strangers on the computer where I live.  But again, thank you for your response and inspiration that there are still some good docs out there.  I have some other great ones (my Rheumatologist and a great Chiropractor), but have not had such luck in the hep department yet.  

[hepc4Sandi]

I was fortunate, divine guidance I think. I had the top hepatologist at Navy Hospital in San Diego. He retired at the end of my Tx. He has left that hospital and is going into private practice in Grand Junction, Colorado. He was always positive, and he had a great nurse who is still there that I could text to her phone any time with questions. Post a new question and provide info about where you live, and I am sure you will get some recommendations. Good luck. I did A LOT of research before I ever met with him, I think that it really helped me and my argument that I get the new drug, that I was a good bet. I was the first person there to get Sovaldi. His name is Dr. William Shields. Good luck.

[QWC]

Hi ....I am fairly new to this site , am in another online community, but waiting for the interferon and ribaviron free meds to be well ironed out.  I was diagnosed with hep c 6 years ago, but just found out by going to a new G.I. doc that I actually have a very rare condition---2 genotypes (1a and 2).  I have never been treated before, so am waiting and hoping for the right cure to come out for my more resistant virus.  My question to you (besides identifying strongly with this thread, as I am Full of anxiety about treatment, especially since I watched my boyfriend almost die from  treatment 5 years ago--he did not get cured, only sicker, and also having gone through my dear Mom's lost 15 year battle to colon cancer, and how poisonous the chemo was to her), is finding the right Hep dr.  It seems like every dr. I have come across does not seem to  care, or just do not seem to be that on "top" of it about the treatment.  Since I have very sensitive emotional issues from a verbally abusive alcoholic father, and went through such a traumatic experience losing my best friend (my Mom) when she was only 55 years old, I really feel like I need a Doc with a good "bedside" manner, (in order to keep my sanity somewhat stable)  as some of them have been not so nice.  How did you find such a great dr.?  Did you search or just get lucky (with Divine help)?  And I also wanted to congratulate you on your awesome success!  I am not a druggie, do not drink, and try to be very liver-friendly.  The first hep doc who put my boyfriend on interferon was a very big jerk (despite the fact that he was the "Head" of the hep department at his hospital.)  So it is very disheartening and having no family support, just makes me all the more anxious as I wait for the right treatment.  Any advice on how to find the right doc?

[hepc4Sandi]

My emotions were/are really on the positive side, overwhelming in that I am so grateful at being able to do this Tx, in love with my Doc and his nurse. Thankful for Gilead, Tricare, my pharmacist. So in debt to my husband, family (who knew), coworkers, friends, especially my nurse friend who came over every Friday night to give me my shot and Almostsixty who I met on this forum, and will be my friend for life, and to all the other great people on this forum who were always supportive. I feel like I have a the opportunity to live a new life, at 64. What a great emotion! I also want to pay this forward somehow too.

Depression was really not an issue for me on the Tx. But like you wrote, everyone is different, and I was fortunate to cure on my first treatment, unlike so many others who have struggled for years.

[Mmorgan854]

That's exactly what frightened me about treatment, the mental state an emotional issues. Being diagnosed with bipolar disorder 2 an on mood stabilizers an antidepressants for years an completely stable, I was terrified that the treatment would spiral me into a crisis.  So far, no severe depression, just a lot of irritability which I can handle so far.  The way I see it, you guys are so brave going into treatment without an antidepressant or something along those lines.  I share this with everyone because maybe there will be someone else starting treatment with the same fears I had..an in the same situation as me.  It's been positive so far.   SOL/RIBA has not affected my other meds at all(8wks so far). Of course, everybody's different but that's my experience.  Take care, everyone.  Mary

[Mmorgan854]

You pretty much cleared up a false idea I had about EOT,  an how I could jump back into everyday schedule.  My thinking was once the treatment stopped, no more pills going into your body, side affects would just stop. Now I realize what a naive idea that was.  I think Susan 400 has a lot of good ideas.  Someone mentioned to me about watching upbeat comedies or movies an  doing the couch potato thingie, when I was having anxiety an irritability an it really helped me. Goes along good with fatigue.. Doing anything you really enjoy would help I think.  Hoping with time, these issues disappear an your back to normal an hear those words,,, SVR... Take care

[hepc4Sandi]

You are fine, you are normal. I felt so blessed to be done, I felt like I was feeling such profound feelings I could only share them with my pal here "almostsixty". She and I supported each other through our Tx, we felt no one else understood, not even our husbands. My emotions were overwhelming, even though my mental state and energy had improved, my emotions hadn't. It took awhile, almost another 10 weeks! You are now in the great post Tx waiting period, filled with its own anxiety awaiting you SVR results. I found I had to continue to work from home mostly, keep my happy movies and surroundings going. Hang in there Sue, the Tx is done but not the Sx!

[susan400]

Hi there 'Sue-sister' .  I obviously am not yet post Sovaldi/SOC treatment so I don't yet have first hand experience with that.  But, I do remember coming off the meds on past treatments.  It always seems to me it does take some time when coming off the meds for everything to bounce back to normal.  Our bodies have been full of all these chemicals for 12 wks (or it will that way for me in another 4), but yours has been for 12 wks.  It will take at least a few weeks to start feeling your old self again.  Sometimes it may take a couple of months, it varies from person to person.  I'm not trying to sound like a know it all, but I'm basing this on all the past treatments I've done and that sense of thinking that as soon as I stop these drugs, it will all be instantaneously back to normal.  It never has worked out that fast for me to feel normal right away.  Be patient with yourself and try to relax as much as possible on your viral load  I know that's easier said than done though.    Maybe you could get a really relaxing massage? Or something else that you can think of that you've missed that relaxes you? Maybe you could get one of those fresh fresh smoothies or a 'green' smoothie, or something along that line, to help cleanse out some of those nasty treatment meds?  I don't know.  Just want to offer your some encouraging words my friend.  I am counting the days down to be where you are, OFF of the meds.  4 more shots!  I should hear results on week 8 viral load anytime next week. Pretty sure it will be undetected still.  Susan400