chronic hcv ct ab&pelvic w/wo iodine

[lanier]

Hi,
I have stage 2, grade 1 type 2b chronic hcv, viral laod just under 5 million, had virus minimum 30 yrs.  In the past 2 years my health has seemed to fail in all areas.  I have pain in the abdomin always, my hands and fingers feel like they are made of stone.  My mental staus is a vitural fog with short term memory loss and lack of concentration.  I have always been articulate and now find myself in a place of total hopelessness and depression.  I take medicines for fatigue, I have a severe low platelet count ( have had for years ) and tried the ribo, peginterferon, but after 3 months was ready to jump off a bridge I had to stop for this reason.  I have only one child and this is not a legacy I would want her to live through.  I had a ct scan last week pelvic and abdominal with w/o iodine, I got the hives, but today the radiologist told me my liver was "normal"  Normal is a place I would love to be, I am self aware and educated, I do not have a normal liver by any standard.  I will go see the gastro again next week, but I want to know if there is any explanation for this ct scan result.  My abdomin seems to swell and is so painful on the right side under the breast and penitrating to the back.  Please help me understand this if possible for this has been the worst year of my 50 years.

[lanier]

thank to so much for the truthful and sound advice.  I'll go next week and post and hope you will write again.  I eas being sarcastic about her actually "being" a pharm-rep, it just seemed she had a standard protocol packet she gave HCV clients and never took the time to at least respond to people who had intelligent questions.  short opinion i WOULD NEVER TRUST HER WITH MY LIVER.
LOL
how are you doing are u cured?  what is ur stage and grade and have u had treatment?  I hope u did well if u went through it.  I'll try again I do not want to be anything but proactive with this liver of mine.

I am so depressed and so worn out everyday by the time I have been up 3 hours.  I know it is my liver disease and I try to force myself to keep going but I always end up sleeping 2 hours each day and sometimes more.  

Be well and write soon if you can
Lani

[frijole]

http://clinicaloptions.com/Hepatitis/Treatment%20Updates/HCV%20and%20Depression/Modules/Raison.aspx

This is a module by Clinical CareOptions on treating patients with depression and suicide ideation. YOu have to register but it is free.

frijole

[frijole]

I don't know a lot about some of your medical conditions -- low platelets and bilirubin  and prothrombin and such - but a lot of us here got into this prediciment by our early lifestyles. So be it.  No sense in beating yourself up over it now. Heck, we did have a good time, didn't we?

In addition, I really don't understand having a doctor who is a pharmacy rep.  The seems to be a little self serving on his part.


It sounds like there was way too much stress in your life in 2005 to treat properly. It sounds like you did have anemia and maybe the constant fatique threw you into depression which you were predisposed to.  Gee -- going thru a divorce, menopause, what else?  Definitely not a good time.  I did treat in 2005 and only did it because I thought I had all my ducks in a row.  I am sure I could not have handled the emotional stress you went thru.  Treating is hard on any marriage anyway, much less one in trouble.

Will your primary refer you to a hepatologist?  Do you have a choice?  You do have a lot of challenges ahead of you, so it is important that any doctor understand the issues.  You probably need to be on an antidepressant prior to treatment.  I think you have a chance if the stress is out of your life.

Iwish you luck
frijole

[lanier]

Your response is such a blessing.  thank you.  First I had to stop because I became suicidal and could not stop crying.  I had been crying and suffering from "fatigue" which I chalked off to a divorce I was going through in 2005, I got the shingles, started drinking wine more than ever before and let the divorce take its toll, it was the right thing to do, but failing is never fun.  at this point I started to get these brain fogs that would make me crazy.  I started taking alprazolam .  I started having terrible night sweats and symptoms life (metopause) except my periods are all regular so that was not it.  I have had a low platelet count for at least ten year (302) and was at one point put on iron by a primary care doctor.  no change.  Liver enzymes were not showing anything back then.  Then I decided to pull myself together and enter another medical program 2005 after divorce ended and BAM blood work came back.  I was in shock and yet understood everything feel into place I have had the virus at least 30 years and I know that for a fact, I did it to myself long ago and far away in the days of jimi hendricks concerts and led zepplin.  I grew up and moved on, but I guess I took this with me.  I never had my viral load checked again after I stopped treatment.  My gastro is a pharmacuetical rep and when I asked her what standard was used for my liver biopsy she told me verbatum.  "I don't know"  she never looked at my platelet count and was as casual about my results as if I were at the market.  I am not a person who follows any medical persons word.  I know better.  I started the treatment and got the rx from her and figured I would not suffer anymore than I already was.  I WAS WRONG.  now I have not worked in 2 years and have a hard time making ends meet, just now got the attorney to try for SSDI.  I have paid enough and do not want to lose my house.  So next week I go to see a new doctor got the primary care to listen and refer me to another.  my prothrombin time INR 0.9 (???)  LOW any input on this would be greatly appreciated.  My platelet count has been in the range of 302-305 for years (LOW) My bilrubin total is 0.9,  My direct bili is 0.20 both of these numbers are from 11/2006 the others are more current.  the liver biopsy was done in Feb 2007.  My smptoms seemed to just pile on in the past 2 years, I have since I "grew up" always used alcohol as my drug of choice and have abused it in times of hardship (mom died MYRSA horrible experience, divorce things like this) but I put some wine away in these times for a period of time from 2001 until 2005 when I started to go down hill.  I thank you for reading these things, I feel so much better just being able to bounce things off people who know what I am talking about.  No one around me anything but a limited empathy that I appreciate, but being able to write on this blog is the best choice I could make.  Oh I have a terrible time bending over, I have a stiffness in my hands and fingers that makes them feel like stone.  I have brain fogs and get lost going places I never did before, so I hardly ever go out and I have to admit sometimes I just do not have the energy to take a shower.  I know some of these are depression, I have that.  I know it.

Tell me whatever you have the time to write, and know in advance how greatful I am for your time.

Regards
Lani

[frijole]

Sorry for your diagnosis.  It is a mixed blessing that most people don't have symptoms until they are pretty far into liver disease.  Your case is a little confusing.  Stage 2 Grade 1 actually sounds pretty good.  And genotype 2 sounds good too.  The stage and grade don't explain the low platelets which are normally an indication of cirrhosis or the abdominal swelling.

I think you need to find a hepatologist (liver specialist) instead of a GI.  Why did you have to stop treatment?  Was it depression or could it have been the dreadful anemia a lot of us get?  There are medications available to help when the hemoglobin drops that enable us to continue treatment.  If you have not already, get copies of ALL lab work. All viral load tests and all CBCs (blood work). Were you responsive (did your viral load drop on treatment)?   It may be that you can get back on treatment and achieve SVR with the proper rescue drugs.  With Genotype 2 you may be only looking at 6 months.  

Rereading your post, you may have stopped because of depression. You may need to get on an anti depressant or anti anziety med prior to treating.  There are several people on this board who have managed to treat with bi polar disease and major depression issues.  It is possible but you need a good team to support you.
Please post back your stats.
frijole