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Author Topic: depressed  (Read 22246 times)

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Offline DesertGuy

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depressed
« on: September 01, 2014, 08:07:50 am »
Boy--past week has been real tough. mentally screwing up daily, to the point it's costing me money. Yesterday felt great until about 9 in the morning and for some reason got so depressed spent the day in bed with the curtains drawn. Up at 4 today. Sun is not up and am afraid of facing the day.  Been fighting it for years and the past few years without realizing it--it has gotten worse. I have sold all of my toys(hot rod's and cycles--even some tools)  over the past few years. Didn't need the money , have just been on a mission to rid myself of things that I have liked. At the point now, really have nothing to look forward to daily except pill time. The mental stuff has cost me jobs from 2009 to now being unemployed and I am not even looking, and am not SS age yet. Have isolated myself so much that can go for weeks without seeing anyone except wife.  Starting to get worried . Just finishing week 9 today--and week 24 is a long way off. If I make it to then I hope something new comes along.

Offline rainbowray

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  • Gen 1B
Re: depressed
« Reply #1 on: September 01, 2014, 10:07:29 am »
Hey Desert Dude,
Maybe your should ask your Dr. about lowering the dose of the Ribavirin.
I read that lowering the dose always brings back any lower readings of the blood
Perhaps that is getting your depression going, as low blood counts get you weak
and other issues.
I am on week 8 of sovaldi/ribavirin and also not excited about the weakness that occurs, but the non-detection at week 3-4  is my motivation.
I am also on the 24 week plan, so don't feel alone. I am not in the desert like you so I'm not worried about scorpions getting in my boots-lol
Also, if you have anymore old cars you want to get rid of for cheap , let me know, (just kidding).  I know the feeling, be aware of what is happening. i can feel that way too about material things, I am an ex drug addict and when I feel that way it makes me wonder am I thinking about going backwards because when doing drugs I did not care about any material thing. This ribavarin is a no joke drug, and I feel like flushing these blue pills, but just turn around and get busy on something else.  I am going to retire soon and I am glad I kept my carpenter tools so I can build things for my grand children.
I just purchased a plan for a playhouse, and it is going to be a fun project. I have to force myself, but I know the result will make me forget about the treatment and the time will go by quicker. So do some kind of fun thing, even if you have to force yourself. Since you live in the desert, go to an Oasis or something. ha ha--- 8)-------keep your chin up and eye on the goal.

Offline lporterrn

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Re: depressed
« Reply #2 on: September 02, 2014, 10:02:50 am »
Hi DesertGuy,
Rainbowray is correct about talking to your doc about ribavirin dose reduction. Also, isolation tends to created more depression and then more isolation. Sometimes we have to force ourselves to find some sort of activity that can temporarily take us out of our head. Is there anything that interests you? A daily walk in nature or local park. Volunteer work. Kids, grand-kids, friends, movies, foootball/baseball, etc. I know it all sounds very lame, but it it the little things that help us get through.

I appreciate your presence on the forum. You are helping others more than you realize.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline virgha828

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Re: depressed
« Reply #3 on: September 02, 2014, 12:37:19 pm »
Hi

Lucinda and Rain,

Sometimes in reading posts i don't have anything to say but wish there was just a "like" button like on face book.

Here is your "like" to both your replys. :)

Offline DesertGuy

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Re: depressed
« Reply #4 on: September 02, 2014, 04:37:20 pm »
Lucinda--thanks for you last statement
New report--Just got back from the Doc--I travel 80 miles each way,  Today is first day of week 10 for me. Meeting with doc was to go over blood texts from the 21st.
Dr and I talked about my viral load. Two comparison's  a month apart. Did not look uplifting. My viral load ( if the draw was good--we did another today to make sure) has not changed in the past weeks. Still detectable at 20ml. Dr started telling my that with my genotype 3 and my cirrhosis that there is a chance the Sovaldi alone has done all it could as far as killing virus. He mentioned that I had not wanted interferon--and that next year the new super drug would be approved for my genotype. I didn't know weather to cry or reach over and punch the guy in the face.
So--I will stay on same course and meds for remaining 14 weeks----mentioned my depression and have been referred to a shrink with a hurry up request by my dr.
In the past I think I mentioned my feelings of dr's and the way we are treated so I will not expand on that. Depression, right I now am so pissed off that I don't have room for it.

Offline lporterrn

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Re: depressed
« Reply #5 on: September 02, 2014, 08:34:22 pm »
Oh, I am so sorry. Darn, darn, darn. One question - are you on Sovaldi alone or are you also taking ribavirin?
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline DesertGuy

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Re: depressed
« Reply #6 on: September 02, 2014, 09:05:47 pm »
Ribavirin also--6 200mg pills a day

Offline lporterrn

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Re: depressed
« Reply #7 on: September 02, 2014, 10:52:55 pm »
Don't despair. Possible strategy is that once daclatasvir is approved, your doc can prescribe off-label with Sovaldi. It'll be tough to get through insurance, but cross that bridge when you come to it. It'll be MUCH easier than what you are doing now, and the cure rates are high. In the meantime, just stay close to your peeps here on the Forum.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline DesertGuy

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Re: depressed
« Reply #8 on: September 03, 2014, 07:16:50 am »
LoL--not at you--at the system and me for listening to supposedly professionals.
I did not have despair 6 months ago--I knew I had Hep c and was going to live with it. Now I am been filled with false hopes by a medical community that has me hooked on monthly visits--blooddraws--and promises of a cure. This was not the way I was living--and not the way I want to live
 I like this forum and it is very helpful . But not sure if I'll  be around much anymore.
Thanks













Offline lporterrn

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Re: depressed
« Reply #9 on: September 03, 2014, 09:23:24 am »
DesertGuy - You have to do what you have to do. If you want the support, it is here. I am sorry you see it as being filled with false hope, rather than fighting for your life. I know people who have tried much harder treatment 5 or more times, and now they are cured. However, only you can decide.

My bias is clear. I tried 3 treatments before succeeding, and I would have kept trying. I saw too many people die from this, not just patients, but friends. It is a hideous, slow death with no dignity. Treatment vs this death was a no-brainer. 
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline rainbowray

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  • Gen 1B
Re: depressed
« Reply #10 on: September 03, 2014, 11:49:28 am »
Hey DesertGuy,
I too saw some people die from this, and it is not nice to say the least.
Your viral load is way down, keep it down till treatment is over so your liver gets a break from the invasions. Also, you may get Undetected so don't give up hope.
One thing I noticed, is your taking 6 200mg pills of Ribavirin, are you breaking them up during the day. I take 600mg pill , (all of it) in the morning, then in evening.
I got undetected in 3 Weeks, I am Gen 1B. I thought Gen 1 was harder than the others. Perhaps 3 pills in the morning, then in evening with lots of food with them.??
Concentrate the application.
I'm going to say a prayer for you, in Jesus Name.
Don't give in, OK.

Offline Bucky

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Re: depressed
« Reply #11 on: September 03, 2014, 12:48:37 pm »
LoL--not at you--at the system and me for listening to supposedly professionals.
I did not have despair 6 months ago--I knew I had Hep c and was going to live with it. Now I am been filled with false hopes by a medical community that has me hooked on monthly visits--blooddraws--and promises of a cure. This was not the way I was living--and not the way I want to live
 I like this forum and it is very helpful . But not sure if I'll  be around much anymore.
Thanks
Hello DesertGuy,     I don't think that your doctor handled your last visit very well. Since it is well known that ribivirin can take your mind places it does not need to go, I am surprised that he did not offer to replace the rib with Olysio. Not knowing your Dr. I can't judge him but it seems like the logical thing to do. Since I don't personally know you either I can't judge you but a lot of times you have to advocate for yourself and just tell your Dr. your own opinion about meds and treatment.
What you are going through is what I wanted to avoid, so I waited on the S&O approval. If it is getting to be too much, speak with you Dr. and waiting for the newest meds.
As you know there are many tough veterans of the HepC fight on here and I don't know how they managed to do several rounds of treatment before they were cured, but they were cured!
Bucky

« Last Edit: September 03, 2014, 12:50:23 pm by Bucky »
I HAVE SLAYED THE DRAGON.....CURED SVR24!

Offline virgha828

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Re: depressed
« Reply #12 on: September 03, 2014, 03:17:46 pm »
I watched my brother fight this disease after two liver transplants, he lost the fight in 1996.  This is my first time treating, the same thing S/R.  I am currently undetected! I would be a liar if i didn't say i have the"what if" thoughts about it coming back. But if it does i will fight and move on to the next breakthrough in order to say i did everything i could to cure myself and live. I'm not saying this is a cake walk but for me necessary.  I know at some points it's very difficult but you can do this! We all can and We need each other at times to just be there and know someone else does understand.

Offline willie g

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Re: depressed
« Reply #13 on: September 04, 2014, 02:56:17 am »
come on desertguy your just going Thru a time in the desert, water will come and keep praying to the creator, I took and take antidepressants . I use to keep flushing them, and going back to drinking and id end up back chasing my tail like a wild dog. I have been isolating too and that's why my daughter insisted on me coming out with her for awhile. it helped but she has three kids 1 to 3 of age so I was kinda glad to get back. this has been the sunniest summer in years, hear i love to ride but the oylisio doesn't mix with sun,so isolating makes another excuse for me,, ya, I hate when I hear the birds chirping cause it sucks because you've been up vibrating. I have had to make myself read which then causes me to nod off for awhile and I just watched some movie, if you notice most all of my postings are at 2 3 am etc. evil slips in your mind and then takes you for more of a poisonous attitude. I sold, bought, sold ,bought too,, remember that ironhead I told you I got,well its been sittin and sittin,,I'm hoping for a late fall ride,, I missed the riding and the NY state fair for the first time in 30 some years. my cash flow is low too but please brother look how positive we were in the beginning, we cant throw in the towel,, this is a dance in the park compared to what we have been Thru, its just that friggin evil that sneaks in, try to do one positive thing a day. I know that can be a mountain too but we deserve another shot at this great thing called life.hell get some of that smoke that makes you happy. I know we hesitate on that too but dam everytime I do do it I get a laugh and worries vanish for awhile. I've got plenty here yet I resist like I have to do this whole thing miserably. hell its much better than booze and pills.we both know it,ya I went on that ranting and raving in the beginning about the reefer but the real truth about it bro was I was just jealous, Thats it, my macho, ego took over. light one up day, this will be our day, I think we met for a reason, we can both be our own worst enemies, so pray today out there in old meico]that's the right spelling for us] high noon I will be toking, you do the same and our spirits will meet and thx so much for your honesty cause it was exactly what I needed to here, you may not read this right away and our time zones are different but if noon comes at midnight than so be it, toke up,as I will be, [hell they also call this the new miracle drug for guys like you and me and I know you take the stuff that's for your sickness,get the real deal. just take two tokes as I will and wait a half hour, this smoking till we are oblivious is no good either for us, people want to do an ounce in 4 days, that's nuts, been there done that But started the two toke thing every 6 hours twice a day and what a difference. I don't know what has been holding me back, frig misery, stay on track,take those god gifted meds and talk to or don't to Dr.  we are our own best Dr. in many cases because we have been Thru it and those magic bullets we keep thinking our drs. are giving us aren't so magical many times. I,need you on this site bro, frig trying to be the good feeling guy for others all the time like I do,its great we do, but when were done were back in our isolation. give me advice,lets keep doing this ,  see you at noon, midnight or whatever but we will know and our spirits will connect. no ego, prayer. love and helping others is our only way out,,,,, high noon  and then we will go from there, I promise,  wllie g

Offline willie g

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Re: depressed
« Reply #14 on: September 04, 2014, 03:39:31 pm »
hey DS you feeling better today? man I hope so. I never smoked like I said I would, I don't know, its not legal here yet and I am trying like hell to do the right things today, with the grandkids, daughter, etc. did you happen to read scooters post today? boy that gentleman has a good reason to be down, but God will in he will make it, ya I've literally seen people die from this stuff, including my Dad,  he was a good friend but he lived too hard like I have and in the end he said frig the treatments,,i never knew that till after he died,, theres a lot he didn't get to see including me losing all that hard living I was doing. I guess that's why when I think about it I have been just keeping the reefer in a drawer lately,, old behaviors are hard to keep in check sometimes. sometimes I talk too much, sometimes not enough .it is what it is so I just roll with it and give thanks all day to the creator for giving me another shot when I didn't even think I wanted one so I stay connected with him cause hes always has been there for me.  never ever has he let me down. know body has to prove anything to me, I'm already convinced,, no church, no fancy temple, just me and him and the holy spirit he gave me to guide my walk everyday.   willie g

Offline willie g

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Re: depressed
« Reply #15 on: September 04, 2014, 03:42:49 pm »
shoot, I ment dg  desertguy not ds

Offline rainbowray

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Re: depressed
« Reply #16 on: September 04, 2014, 04:12:20 pm »
Hey DesertGuy,
We're your friends, we are going thru this just like you so if we're in the trenches and you leave, the enemy will see us and try to make us more venerable. Listen, if your popping in to just read that's cool, but giving up is the enemies goal for us. The good Lord wants us to live, that is why he gained victory and gave it to us. Don't throw things away no more, now it is more than material things it is your spirit and soul.
The cure is there, I took a chance and also refused the interferon, cause I took it for two weeks about 35 years ago and I almost went totally berserk, but if this fails for me and I don't have a choice I will add the interferon and pray. That is what you should do, most of us did this to ourselves yet a chance is given that is not deserved by some, especially me. I did hard drugs for 15 years of my life and I don't deserve this do I?? But I'm not a fool, and God made me to be a better person, I just had to ask him to help me to be that. Guess what? He answered.
I went to a hospital about 5 years ago to identify a person that died of hepc in the streets, they opened the freezer box and yep, I tried my best to deny and
lie, but it was my brother all right. All he had to do was listen to not end up like that, so come on DesertDude, DS, or whatever your real name is, get the victory.

Offline willie g

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Re: depressed
« Reply #17 on: September 06, 2014, 01:06:58 am »
Thx rainbowray, good stuff,I screwed up desertguys name by trying to abreviate . There use to be a lady named desertsky,so therefore Ds, but it's Dg for desertguy.every time I try to simplify things they get complicated lol but really thank you that's the stuff that keeps us going. Togetherness, thru wisdom which has AND is there for our taking as a gift from our Creator which provided us with the holy spirit. The Father,the Son and the Holy Ghost. Amen and for anyone doubting that that's your right but one day someone said Willie WHY not give it a shot,your way hasn't worked up till now so what have you got to loose and its free and if you don't like it go back to doing it your way.." "how do I get started" I asked,his reply was "just knock,and say. ,hey who ever you are COULD you please help me to believe in something other than myself,cause my ways not working? And Willie just talk to him like your talking to me"  He will give you a sighn,just sit back and enjoy the ride." It took me awhile but today I can truthfully say, It's the Greatest show on Earth.   Just my take on my journey folks but I truly believe we have to believe in something other than Ourselves.  Willie g. Every one have a good day unless you have other plans.

Offline Katmbs

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Re: depressed
« Reply #18 on: October 01, 2014, 12:14:44 am »
Hey DesertGuy & WillieG,  thanks for posting your candid conversation about the depression and the SE on the mind.  Not that I want anyone to go through these SE, but it is comforting to know that I'm not crazy.  I'm 7/12 weeks Int/Rib/Sov and am thoroughly exhausted all the time.  On Saturday, the husband and i had plans to attend my nephew's wedding.  I was so depressed that day....felt so low.  But when the DJ started playing some favorite 80's & 90's dance music, I snapped out of my funk quickly.  Even got up to boogie as best I could.  I pray something takes hold of your heart soon and gives you complete abandon and joy, even if only for a moment. 
Blessings,
Kat
Geno 1a - Since 1975 transfusion
Relapsed, 48 wks Int/Rib 2004
Currently Int/Rib/Sov  Slayed the dragon after 4 wks :-)

Offline willie g

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Re: depressed
« Reply #19 on: October 01, 2014, 09:33:51 am »
BOOGIE DOWN KATmbs      whatever it takes     open the front door and scream and run down the street  with no clothes  ,  that's good for depression  especially when you have to jump the fence in the back to get in house because you here sirens [they have special vehicles now for people like me]  and then youll sleep for two days!  2 less  from treatment  [as a matter of fact thanks for the idea,  here I GOOOOOOO,,,,,,,  ILL ROLL OVER THE FENCE]  'JUST'' WILLIE G

Offline lporterrn

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Re: depressed
« Reply #20 on: October 01, 2014, 11:13:57 am »
Thank yo Katmbs - I keep forgetting about the healing power of music - good reminder.

Here is a little research for those of you who might be wondering if depression during treatment is "in you head" - it is, but in the cells - not the imagination http://journals.lww.com/aidsonline/Fulltext/2005/10003/Interferon_induced_depression_and_cognitive.26.aspx

This is just one article - there are many others to support the idea.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline virgha828

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Re: depressed
« Reply #21 on: October 01, 2014, 03:55:33 pm »
Hi i tried to read your study but couldn't grasp it.  I have had memory issues and some boo hoo issues lately . I'm thankful I'm starting week 10 of 12 tommorrow. I was hoping when treatment was over all these things will go away quickly.  Will things become clearer and my memory come back? How long does it take to not be tired all the time and to get memory back. Sometimes it's difficult to hold a thought lately.  sometimes  my family catches me staring out into oblivion. I call it analysis peralisis. Yikes!!

Offline virgha828

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Re: depressed
« Reply #22 on: October 01, 2014, 03:56:38 pm »
Ugh sorry paralysis!!!

Offline lporterrn

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Re: depressed
« Reply #23 on: October 01, 2014, 04:37:40 pm »
Yes Virgha, you will feel better one day, although the recovery rate varies. Takes a minimum of a month, some people a year, most in between.

Basically, the study said that what you are experiencing is a side effect of the meds. Duh - like they needed proof!
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline willie g

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Re: depressed
« Reply #24 on: October 01, 2014, 08:33:54 pm »
828 BOY that went fast congrats 10 weeks 2 to go,,,  you will soon be ''YOU''  and just think you WILL be a better you,, hang in there  ''just'' willie g

Offline DesertGuy

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Re: depressed
« Reply #25 on: October 02, 2014, 08:01:47 am »
Yesterday day 2 week  13   also dr's visit
 I have blood drawn at my local hosp  and next week drive 75 miles to DR
 For the third time in a row--blood draw was wrong according to DR--wrong tests
 in his own words the tests are  BULLOCKS--my words I TOLD YOU SO LAST MONTH
 then he always send me to his blood draw people--so at his visit I never have current results--always Maybe the call me later
 Yesterdays visit he sais --yes I am un detectable but he is already telling me it means nothing until 12 weeks later--
 Then brings up the fact that we should have used interferon--told me he wanted to but it was my decision not to  and because this is my first go around at treatment that I will respond well to the next one
DOES HE KNOW SOMETHING HE IS NOT TELLING ME?????
 and then we move on to the discussion of the shrink he went me to
asked me how it went--told him it was the most unprofessional dr.s office I had been in--felt like I was in a massage parlor--and then when I met the DR. all he could label me was a drug abuser because I experimented in the 70's told him to stick his advise up  his rearend and to give that advice to Bill Gates
 My dr listened to me and then asked me the shrinks name--He sent me and didn't even know his name
I'm sorry guys---what happened to medical care---when did bedside manner leave?
These people make millions of dollars a year and treat me like shit
and they ask me why I seem down !!!!!!!!!!!

Offline Mike

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Re: depressed
« Reply #26 on: October 02, 2014, 09:30:53 am »
Hi Desertguy,

Sorry to hear your experience with the doctors. Doctors, are, in my opinion, a different crop of individuals. I think it has to do with the type of personality that is drawn to the profession.

In any event, the virus is undetected, which is great news!!!!

It really dose mean something - it means that the viral load has been reduced to the point it can't be screened for.

Now, the Sovaldi has 12 weeks to kick the living crap out of any stragglers!

Best wishes, Mike
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline rainbowray

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Re: depressed
« Reply #27 on: October 02, 2014, 10:40:52 am »
desertguy,

I don't like ranting but I can't keep it inside me while on this ribavirin.
I visited my Dr. yesterday.  He mentioned that I need to keep on treatment because
Gen 3 has peculiar issues. I mentioned i am Gen 1B. he says "oh" He asked am I going to get a liver scan or biopsy, I mention that I did a fibroscan and fibrosure in his office while he was in Italy, he never looked at my labs. He asks me why he doesn't have it?  go figure, I have a copy at home his assistant gave me cause I asked for it and would not leave without it. I told HIM the results. He says "OH".  I asked if maybe at last 4 weeks would Interferon be a good idea, as I do not want to go thru this again. He says the insurance may get angry. I think the drug company and insurance company's own the Doctors. The Drs. heads seem to not be in the correct place. I told him I do not want to come in anymore till I have taken the last pill, (I'm sick of the kind of personal treatment a lot of us get) I did not tell him that because I still need my prescriptions.  We are not looked at as typical patients, but if you have insurance they "tolerate" you cause of the $$.
That is how I feel. I have my own agenda to build up my immune system to try and make sure this stupid virus does not hide in the liver and survive. I'm not telling no one what it is till treatment is over. You really do have a good reason to complain, if you are "crazy" it is because they drive it in you. You are just angry.
So am I.

Offline willie g

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Re: depressed
« Reply #28 on: October 02, 2014, 11:39:40 am »
Hey ray sorry to hear about hassle,like mike said drs. Can be a different breed just like any profession you have the good and the bad, i have one Dr. For instance and is great,he can remember anything,treats you like family and with his ipad he always knows everything that's going on and you can talk to him and he responds great.while on the other hand i have another doc that i make sure i save everything and when i see him i write up a little essay of whats going on,in regards to anything my visit is about,even the last visits conversation and what he recommended,new meds. Etc. Some drs heads are in the game while others are overwhelmed or maybe they are thinking of the hot nurse he just hired lol  where some of course shouldn't be drs at all but they have the paper that makes them one and they feel like Gods or they plainly just dont have a lick of commen since. Just like anyother workplace you have the good and the bad and you have other people picking up the slack(in many cases nurses know alot more than they will ever know but shes not the one dictating their notes.any Dr i have went to and have brought the so called essay i talked about are generally pleased and they are glad they are working on your treatment WITH YOU,,and of course it makes their job easier.  NOW the receptionist and people on the other end are another story lol. Hang in there brother,and i do understand(i carry a taperecorder and a blackjack just in case they get out of line lol)  "" just" Willie g

Offline DesertGuy

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Re: depressed
« Reply #29 on: October 02, 2014, 12:34:35 pm »
Rainbo---Thanks--I have been hiding out because I didn't want to pass my bad attitude off to others. and it sounds like you are having the same exp as I am with the same genotype--to me ,it's good to hear someone else bitch
Really take a look at things in general---none of the doctors look at us as individuals, we are just blood results---they really don't listen and when they talk about the new super drugs we are being given or going to be given ,and if you look deeply you can se the dollar bill sign twinkle in their eye
Yes the super drugs are going to cure lots of people, but they is also going to make a whole lot of Doctors much richer for very little effort. I hope the $600 my Dr. made for my 15 minutes yesterday helped pay for that new Jaguar he had parked out back.
 

Offline rainbowray

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  • Gen 1B
Re: depressed
« Reply #30 on: October 02, 2014, 01:21:02 pm »
There are more people that have Hepc that get treated differently than others, because of the stigma behind hepc. some have to get tested for drug or alcohol use from the beginning.  I have had negative and positive experiences thru the years, but the Drs. I have seen for the Hepc are mostly negative, there is a STIGMA, we have to accept it.

Offline lporterrn

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  • LucindaPorterRN
    • LucindaPorterRN
Re: depressed
« Reply #31 on: October 02, 2014, 01:41:39 pm »
Hi Rainbowray - Are you saying that you have been on sovaldi/rib combo all along because he thought you had GT3? I just assumed that you were on this because of your choice, and I don't offer my unsolicited opinion unless I can't sit quiet. So, now I can't sit still - if this doesn't work, I hope you consider the new combo, and you get on it ASAP so no chance to build high drug resistance (although this is unlikely) - it will be much easier than what you are on, as I think rib is as bad as ifn. And, your doc ought to be held accountable for this mistake.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline rainbowray

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  • Gen 1B
Re: depressed
« Reply #32 on: October 02, 2014, 02:28:43 pm »
I asked for Sol/Olysio and he had a problem with the off-label thing.
I had a lab report from the beginning that showed Gen 1B, I failed to get it back cause he said it got miss placed. I thought nothing of it, but I am somewhat perplexed. He mentioned to try the interferon in the mix for 12 weeks, and I am intolerant, so we went with 24 week sol/rib. My impression if a Dr. cared he would have tried at least to comply to my request. I did not want to wait for any FDA decisions that make it easier for a DR. to prescribe as I just found out I was F-3 and I did not like that, so I went with this treatment.
I think he is just involved with other things, Italy, procedures..etc and does not really have any passion, cause it shows. He better not have submitted I was Gen 3.

Lucinda, when I walked in for my appointment yesterday, the first thing he said is I have a procedure to do, you will have to wait. I had an appointment from 7 weeks ago. He is getting involved in a trial in the Bay Area too, so his mind is elsewhere.
I just think I'm being treated as a second rated person, and am only putting up with him to get the prescription and complete the treatment. If it does fail, I will go elsewhere, and he may get a letter from a lawyer, cause I document everything

Honestly, I do not like to rant, especially on a forum, but it is reality so I would rather not lie and let others express their experiences.  I am just convinced that Doctors in general (not all, but most) live in their own world of arrogance.

Offline zeena

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Re: depressed
« Reply #33 on: October 02, 2014, 11:37:02 pm »
rant away rainbowray. its not like we can talk to our kin or coworkers about our hep c experiences.there was a woman  going thru breast cancer chemo, i felt we shared an illness story. my husband and son are negative, even my old boyfriends before are negative.I probably got this in the early 80s, she suddenly says baby boomers infected the next generation. what?? some internet trash she picked up, she has come around, but, there is a stigma,  by ranting you help bring our stories as one, i feel less isolated knowing i have the freedom to let it out here. it gives me the strength to put on my smile for the world and bounce back when life gets tough.

 


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