new member intro

Thanks, Liz. If my own experiences can help someone else, then they serve a purpose.

If that is the best way to describe your pain, then do so. A tender liver is an inflamed liver. The other time you spoke of, when it seemed enlarged, could possibly have been the acute phase of your HCV infection. I wasn't even aware of when I contracted HCV since I was using IV drugs and was pretty oblivious to everything. However, because of the high risk factor, I know it had to have been in '68 or '69. The one commonality about hep C, and most liver disease, is fatigue. It's a different kind of tired than one would get from hard work. I once heard it described as "walking through molasses" and that is the perfect description.

Please continue to keep us updated on your progress. I really hope you can find some answers and solutions to your pain. I don't deal well with chronic, unrelenting pain, myself, and truly feel for you.

Hugs,
Connie

MamaLama: TY for posting. If/when my severe pain becomes acute (9 on the pain scale), I do go to either my gastroenterologist or to the ER, whichever is needed at the time.

I've been reading posts on this forum this morning, as I woke up at a solid 8 on the 1-10 pain scale. Mornings are almost unbearable for me. Pain in my healing [now] five fractured ribs surrounding my (now swollen) liver is and has been radiating up to my right middle shoulder/shoulder blade area, and radiates around my side to my back. This pain, which on a good day goes down to a "5" is keeping me from showering, driving, moving my right arm, working, studying, etc., and is simply getting worse. It hurts to breathe deeply, cough, blow my nose, and sometimes just talking is impossible. Sitting upright for more than a mere hour is unbearable, as the "pressure" is super intense. I spend most of my time in an inclined position, like this: |\ and on a heating pad. The oral morphine is allowing me to stay out of the ER, but some days just barely. Acute pain wakes me up every single morning since I fractured these ribs about 5 months ago.

My fiance` and his old JR HS buddy found me a little 4 lb runt long haired chihuahua that keeps me somewhat active. She helps me to get up & walk around vs. staying in my "|\" position 24/7. I'm trying my hardest to stay active, focus on positive things and do a boatload of research for my first hepatologist appointment. Though the inpatient Hepatology team has seen me several times, and have both ordered and completed tons of blood tests (in regards to my HCV), so that my outpatient liver doctor has a lot to go by before I actually see her for the first time next month.

Thing is, the more I read in these forums, the more scared I get. I did not realize how bad chronic liver disease can become until reading a post here dated 12/27/11 "we are losing my sister-in-law." Though I am quite aware of my worsening condition, I had absolutely NO idea how bad ESLD can be. I am not that far along by a long shot, but now I'm scared to death of getting worse. Thank GOD I was not a heavy drinker or smoker of weed & that I was easily able to give these two things up. Apparently from what I'm reading, I need to give up cigarettes also, though they are very difficult to inhale with my severe pain issues.

I was outright told that the University Hospital that I am a patient at normally does not treat bipolars with interferon, nor would I qualify for a transplant if I continued to smoke weed. That particular Hepatologist did come back and apologize to me the next day after witnessing my reaction. However, after doing all of this research, it seems that I'm waiting to hear what subtype I have, as one isn't even treatable with anything shy of a transplant.

I'm focusing on what a moderator here said (Connie), and am not centering my life on the "what if's" right now. However, I really had no idea of how serious of a condition I have recently been diagnosed with (I turned yellow with a hard & swollen liver exactly 30 years ago & never went to the doctor, I just found out that it was due to HCV a few days before Thanksgiving of this year). I'm praying every day that my pathologic rib fractures directly over my liver are not indicative of bone metastasis, and that I will not end up with ESLD.

Feeling as if I've just been DX with HCV again, I'm finding myself once again in total shock. I had no idea how bad symptomatic HCV can get, until reading about the struggles caretakers have on this forum. It's like every morning when I wake up, I am having nightmares about my particular struggle with HCV & these multiple (some healing) rib fractures - but when I open my eyes, it's my reality. Though my pain is getting worse, and I know this, I cannot imagine going through this struggle if/when it does get worse. I am left speechless beyond what I've just posted.

From what you've written here, it sounds as if Hep C is not your biggest problem at present.

Dear Connie & David:

Yes, my multiple rib fractures are 5 months old. A very recent ex-ray revealed simply one additional pathological fracture. My doctor ordered a bone density test prior to this last fracture, and it showed that I have something called "Osteopenia." My MD told me that she was surprised that it wasn't Osteoporosis due to the amount of rib fractures that I have. I'm about ready to ask for a bone scan, I'm scared that my ribs keep breaking when I simply cough or vomit; it doesn't seem okay for that to happen even if I did have Osteoporosis (I don't).

Yes, I have multiple issues. *My* main concern is this radiating, unrelenting pain that is similar to, but quite unlike when I freshly fractured multiple ribs. The pain did NOT radiate up to my shoulder blade, around the side to my back and end at my mid-spine until recently.

The majority of my old/new fractures are directly above and around my liver, so I suppose that is why I'm focusing on my HCV, I don't know. And yes, the original pain of the first set of rib fractures was easing up substantially (YAY!) until recently. This radiating rib pain is totally new, maybe 3 weeks old, tops.

I'm still not sure this is the correct forum to be posting about all of this other stuff in, but I was told it's okay - if I need to post elsewhere, please do let me know, I won't be offended in the least bit, thanks.

The biopsy done via colonoscopy of the SBO that I was hospitalized for right after Thanksgiving for 8 or 9 days, came back "inconclusive." I posted about that here back then, and am not sure if I ever told y'all how that went. My gastroenterologist ran more tests during my most recent 2 or 3 day hospitalization for dehydration and acute upper right quadrant pain. Those were the second set of tests run to either confirm or deny the presence of a "Carcinoid." I go back for those results next month.

My CT revealed a 9 mm kidney stone, and a 1 cm kidney cyst (both in my left kidney). I went to see a urologist for removal (this will be over a dozen stones that have had to be removed). He referred me to a nepherologist for treatment. He told my fiance` and me that my HCV would interfere with his ability to treat me, hence the referral. I have yet to make that appointment, as I am overwhelmed with seeing doctors, big time! I think that I posted about that kidney stone here before, nothing's changed except for the referral.

The same CT revealed a 5 mm lung nodule in my left lower lung. I go see a pulmonologist about that next month also. My main doctor (my PCP) told me not to worry about it, because it is so small, they will probably not do anything except monitor it via repeat CT scans for any changes every few months.

Ya so the CT's that I've had are revealing nothing in the line of liver cancer, so it's all good. *smile*

Did I miss anything? Oh yes, my swollen lymph nodes aren't swollen anymore, but I see my hematologist next month, to get whatever results he found as to why they were swollen for the past three months.

I can't even focus on one thing at a time regarding my health, except to stay off the weed and not to have any beer. I've not done any of that since I was diagnosed with HCV right before Thanksgiving, yay! I'm on a soft food diet, as eating much else makes me vomit. I'm eating healthy and if it wasn't due to the pain, I'd be sleeping just fine, as I am on a very decent schedule when it comes to my daily life. *smile*

I'm trying to do everything humanly possible to stay semi-active, and not let all of these issues get the better of me. I'm a very life-loving, stubborn woman (stubborn in a good way) - My main focus is to get healthy & back to my career, and to my studies in Computer Science. It's been my life & joy for many years now.

Thanks again for you time in reading my posts, and for you kind words of wisdom. One thing at at time, one day at a time, right?

<3 LG=lifeisgood <3

Monsieur Ziffle is a connoisseur of fried pork rinds, specifically Road Apple Red, with a hint of saltpeter and a touch of poke weed. He's known as the gourmet of porcine cuisine. I defer to his expertise in all and any area(s) of barnyard behavior.

Whatever, y'all...

HCV is a hepatitis virus, type C.

Some hep viruses are airborn, in food,

etc.

Hep type C is transmitted blood to blood from one person to another.  It lives IN the blood, attached to other cells, as viruses do. They are very pesky and very smart and very hard to eradicate.

The Hep C in blood travels throughout your body but does the most damage to livers.  The damage it does can cause cirrhosis.  It is the cirrhosis that gets you in the end!

Other things can cause cirrhosis also. Alcoholism (alcoholic cirrhosis, diet (fatty liver), an autoimmune disease called Auto Immune Hepatitis (clever  name), and certain chemicals that can poison the liver (large doses of tylenol for example).

So it is confusing.

Cirrhosis is staged.  The End Stage is pretty obviously THE END.  Generally the patient slips into a coma from which they don't recover.  Along the way, there are serious syptoms that are bad -- ascites, hepatic encephalopathy, varices (in esophagus that may bleed), low platelet count (so easy bruising, and difficuly clotting when you bleed), low engergy, mental fog, etc etc.

At end stage, the only hope for extending life is a liver transplant.

That tranplant, however, with Hep C, just restarts the count down.  The Hep C gets a nice fresh liver to infect.

My Mike deals with that reality by telling himself he got Hep C from sharing infected needles in 1969 or 1970.  He also drank alcohol, and had a tumor in his liver.  He had a transplant this year 2011.  So the messy process took a long long time to bring him to the brink.

We understand that Hep C can move more quickly post transplant, but they will not offer treatment until or unless the Hep C starts to cause cirrhosis in the new liver.  But since these next year(s) are a gift, he deal with that.

Mike was very ill 3 times over the years.  The first two times was before they identified Hep C as a separate disease.  They told him first he had Mono, then told him he had Epstein Barr.  Then they changed the diagnosis to Non A/Non B Hep and told him not to donate blood.

He saw an infectious disease specialist at that time, 2003, who sent him to a hepatologist and they started him on Interferon and Ribavarin.  He had shots twice a week and took the pills every day.  He had horrible side effects and was ill for about a year after 26 weeks on treatment, which were also difficult.

You have to think about it like a chemotherapy for a cancer...that you take the poison, which is no fun, and you hope to be cured.

At some point Mike will have to try a treatment again.  He did not clear the first time, was very sick, and hopes this new liver will hold on until they have a non Interferon based program. 

Different genotypes of Hep C respond differently to different treatments.  Some of the new meds are not given to those who failed at other treatment. Other new meds are only for those who FAILED other treatments.  Severl promising meds are in trial.

When you have specific topics or questions, you can go to the "search" section on the toolbar above and type in your topic.  Posts from along the way will come up and you can read lots about personal experiences.

Or if you see a person who's history more tracks to your experience, you can click on their blue ID and the site will give you a screne with all their posts over time.  I have like 1000.

Good luck to you, there is a lot to learn. There is some good information at the top of this site and google can be helpful as well.

Carol

 

Here I am posting in the HCV forum partially about other stuff again, but the last part is about my liver - also thought I'd keep you kind people informed of my status, 'cause you seem to actually care. Thank you.

Just got back from the Pulmonologist. He will do a repeat CT scan next month, while I keep track of my blood streaked sputum to make sure it's not from a simple nose bleed. He told us that next month, he will likely schedule a bronchoscopy to determine either (following is the doctors quote directly off my assessment from today): "primary or metastic lung cancer, possibly in relation to carcinoid." He showed my all of the nodules & calcifications and some other granuloma stuff straight from the CT in November.

He also showed me a quite large calcification (thing is huge, much bigger than my 9 mm kidney stone or any of my 1 cm+ lung nodules) directly in the middle of my liver that was found on CT, yet I was unaware of until today. He did not measure it out for me like he did the lung nodules, because he wanted my liver doctor to go over the size & reason behind it with me when I see her in two weeks.

Guess what, no really, guess... He got me on the exam table & he "tapped" darn hard directly over the area of my liver calcification, and I nearly jumped off the exam table but couldn't move from the pain. This is exactly where my acute pain is and has been located for the past 5 months or so (directly under the majority of my healing pathologic rib fractures).

Anyway, he is sending all of his findings in detail to my hepatologist, gastroenterologist, primary care doctor and my hematologist. He told me that by next month, any necessary biopsies will be performed, and that together, the aforementioned physicians will develop a treatment plan for me. Thank God.

Yup, I've got some "what if" questions for you guys (I just cannot help it!):

So, does anyone here that's been actively been replying to & following my thread have any experience with a sporadically or continually painful calcification inside of their liver (not on the surface)? If so, what was it like for you & what did it turn out to be? Was it a constant pain or was it more sporadic and commensurate with movement, breathing, twisting, etc.? How big was yours? I'd really like to hear about anyone with experience in relation to this new thing I just found out about today. Much obliged.

Once again, I was told that all of these issues will be handled promptly, and more so if I do indeed become sicker than I already am. So, like Connie here on this forum so kindly pointed out, I will not ponder/mull about the "what if's" and simply live each day at a time until all of this is figured out. Thank God for my doctor prescribing Valium to me is all I have to say in regard to this f&*%^$@ stress!

I will search the threads here for similar stories like MamaLama told me to do. It's just that I feel by doing that, I will wind up with more "what if's" and wind up scaring myself lol. I'd rather hear from you guys who have been following my forum posts, and from those with similar experiences.

<3 LG=lifeisgood <3

Connie,

Thank you so much for your kind forum reply, it means a lot to me believe it or not.

Gentle hugs from behind my computer to you. Have a good one.

~peace~

Good news & more good news... <grin>

Hep C Genotype 1a was confirmed today, no more wondering <smile>. The good news about that is the University Hospital that I am a patient at does the "three drug treatment" for this particular Genotype. I don't know much else except that I feel very lucky that this "triple drug treatment" is available, and that it will be offered to me whenever my Hepatologist and I decide that I'm ready to begin treatment. I see her in 7 days.

Question: How is Cirrhosis staged? MamaLama mentioned that if it's suspected, it has to be "staged." I'm assuming that's done by biopsy? I ask because my Gastroenterologist told me today that the multitude of my symptoms along with the calcification within my liver, "Could be indicative of Cirrhosis." I was told that her colleague, my Hepatologist, will tell me more about it during my appointment.

I got the good news today that all of my blood work came back regarding the intestinal "Carcinoid" that was showing up as a potential issue on previous blood work. From the standpoint of my Gastroenterologist, and according to the additional blood/urine workup, I do NOT have any "Carcinoid" in my intestinal tract or bowel, YAY!!!

That's my good news for the day!

I plan on doing a lot of research on this Genotype 1a for a week. I will be looking to find out what three drugs are commonly used to clear the person with HCV 1a, what the stats are on the infected person being able to tolerate this treatment, how the drugs are administered, how often I will take them, what all of the side effects are, and most importantly, what my chances are (statistically speaking) of a full viral clearance by going through the entire 24 week course.

Also, I'm going to look into what the deal is about these HCV treatments messing with the mental status of an individual with bipolar disorder. I still cannot forget that first totally un-cool Hepatologist telling me that his clinic has outright refused to treat bipolars for HCV. He gave no reason, and was a real jerk about it. I'm sure my new Hepatologist at the same clinic will talk with me about it, but I see absolutely no reason to be denied treatment (I'm not using any illicit drugs, am consuming zero alcohol, or anything else that would interfere with treatment).

Regarding the preceding post by David from last week: I will most definitely ask about the Valium that I've been prescribed, thanks for the heads-up, David!

Thanks so much for your support guys.

~true healing begins in the mind~

Shadow, I'm happy for all the good news. However, on the new treatment protocol (which has a very high success rate on genotype 1a), you might be required to do 48 weeks instead of just 24. From my understanding, the Incivek (or Merck's version of boceprevir) is taken for 12 weeks along with ribavirin and interferon. Then just the ribavirin and interferon (known as "the combo") is taken for another 12. However, in some cases, they may require a full 48 wks. on the combo.

Hugs,
Connie

SCptn--

My partner has Hep C, 1a.

He had a lot of difficulty, on the psych side, with treatment, just Interferon and Ribavarin in 2003.

He was depressed, oppositional, angry, and down right ugly. AND he didn't clear the virus on the dual treatment.

After some time off the treatment, he returned to pretty much his normal get along self. He is a pretty good guy. Though Hep C has its own brain fog that goes with the tiredness too.

The bad thing was that a year after treatment he returned to his nightly cocktails and that really did his liver in...he drank from 2003 - fall 2010...and had Stage 4 Cirrhosis by that time. ESLD. UGH.

He had a transplant in 2011. I have to say the psych type difficulties returned for about a year prior to transplant when the Hepatic Encephalophy set in.

They have meds for the HE -- lactulose and, finally, Xifaxan (an antibiotic that has the side effect of leveling off some of the confusion and oppositional behavior).

With the Xifaxan I would not have made it to transplant time.-- and I wasn't the patient. I was SOOO upset with his behaviors. I can't imagine what it must have been like for him. HOWEVER, now, 8 months later, he has no memory of those times. He pretty much has no memory of many months prior to transplant and no memory of how grumpy he was either during treatment or before tx.

He took some antidepressants with the treatment protocol. But if they can handle the HE now, maybe they can handle the psych sides with the treatment protocol better now. Mike needed way stronger meds. By the time he needed them he didn't have the ability to self report his state of mind. and the GI guy who was supervising his treatment (a trial protocol at the time) wasn't well equipped to handle pts with special needs.

I would think you would want a psychiatrist consulting on your case., so as to be sure your regular bipolar meds and the treatment meds are coordinated!

Good luck.

Mike is hoping some of these study protocols turn up a non Interferon based treatment for his Hep C, as it is rearing its head already 8 months post transplant. His Viral Load has been 54 Million and 37 Million (I think that's about right ) in the last two tests they ran! It was like 7 Million before transplant and those little Hep C cells seem to be having a grand time with a nice fresh liver!

Let us hear from you often,

Mama Lama

Post Edited (MamaLama) : 1/11/2012 7:23:32 PM (GMT-7)

Going to see my outpatient Hepatologist on Wednesday. I've been doing research & have seen that they sometimes stage HCV 1a to see how much damage the liver has endured, or if there's Cirrhosis or HCC present prior to treatment? Is this standard protocol? I've seen this is done with a combo of blood work and sometimes a biopsy. Guess I will find out on Wednesday.

I'm so scared of going and about the proposed 48-week HCV 1a treatment, that I'm bringing both my Father & Fiance` with me for emotional support and that "extra set of ears."

I've seen the stats, 50/50 chance of full viral clearance. I've also seen some stats on some wicked side effects that have up to 30% chance of being permanent, lots to list. I'm not going to go into the new appointment telling the Hepatologist that there's no way I'm going to put my body through that, but will definitely listen to her opinion regarding this long treatment. And I'm sure she will do whatever protocol is necessary to figure out if my symptoms are indicative of anything more than "just HCV 1a," just like all of her colleagues are doing for me. In fact, my Gastroenterologist is her partner, so I'm pretty confident that I will like my new liver doctor.

I'm terrified about what proceeds treatment, if anything. And mortified about the side effects of the 48-week treatment, along with the anti-depressant medications that might be utilized. From what I've been reading, all of these drugs are horribly toxic (one carcinogen), and I'm VERY unsure if I am willing to put my body through such toxic treatments for a mere 50/50 chance of viral clearance.

I'm thinking that the first appointment will be to talk to me about where my liver is at regarding damage, and if any further testing will be done/required to determine the stage my liver is at in this regard. Hopefully, that will give me and my new outpatient Hepatologist enough time to decide on treatment & discuss what will happen if I decline treatment, etc.

Thanks for reading my post. You all have a happy Monday. Smiles :)

<3 LG=lifeisgood <3