Recent Hepatologist visit

Hello everyone, I'm glad I found this site.  I am a 53 year old woman who has had Hep C since 1978 from a blood transfusion.  I've done peg-intron twice and was disqualified for the current 3-drug regimen. My recent tests show a MELD score of 7 and ammonia of 89, so I am now using lactulose (blech) and Xyfaxan.  Fun stuff.  I also have a 1x1x1 lesion in the liver that they are watching.  Since my previous MRI from 9 months ago, there has been no change in the lesion.

 

Up until now I had hope but I am really running out of hope that I will make it long enough for the DAAs (direct acting antivirals) with a trial result of almost 100% cure in genotype 1As.  I understand these drugs are 2-3 years away from market.

 

I am also a diabetic and have gained weight from too much insulin usage and also the lactulose causes extreme bloating and gas. Sometimes I am also a little off-balance.  Running errands has become difficult because I forget where I am going and what was on my list of things to do.  I want to sleep all the time, day and night.  I run a breeding business and also have a full-time job working with lawyers.  Sometimes I wish I could just go on disability, as it is becoming difficult to work under pressure.

 

I feel lost, bloated and beaten.  Just needed to vent.  I hope you have some uplifting advice for me.  Thanks.

Hi, MKX, and welcome to the forum. I also have hep C. I had a liver transplant last Oct., but of course I still have hep C. I was hoping to start treatment around my first year anniversary, but have had too many ongoing problems since transplant. I've not heard of the drugs in trial that you mention. Is one of them the treatment without interferon? Why were you disqualified from trying the new 3-drug treatment?

You will find it difficult to get SSD based on hep C alone. I tried that myself. Later on, when I applied again, I had bilateral hip replacements with 1 revision at that time. (I've since had 2 more revisions.) I was a medical transcriptionist and found I couldn't sit for long periods of time after these surgeries. I also had extreme fatigue. So I was approved for SSD. Just as I was approved, I was diagnosed with a huge cancerous tumor (HCC) of the rt. lobe. The entire lobe had to be removed. Four years later, a new tumor had developed in the left lobe. Since it was caught early, the tumor was only 4.9 cm at it's largest. Since 5 cm is the cutoff for TP, I had a chemoembolization to shrink the tumor. Three months later, I received a transplant. So do make sure that your lesion is monitored closely. If it's HCC, it could grow rapidly. I recommend that you get a referral to a large medical center for transplant evaluation. With a MELD of only 7, you re likely a long way from transplant. However, a hep C patient with liver cancer will automatically receive extra points. I was at 7 for a long time, but with the last tumor I was referred to the Transplant Center at Mayo for evaluation and eventually transplant. My MELD soared up from 7 to a 22 and then a 25 at which point I received a transplant. Even though you don't have a high MELD score at present and may not be able to get an evaluation at this time, it's good to be thinking about this, even if they deny you an evaluation at this point.

Have you had a biopsy of the lesion? I would recommend it. Have they done blood work for alpha fetoprotein? That is a tumor marker and if it is gradually going up, it's an indication of cancer. Of course, a biopsy is the best way to diagnose this.

It sounds like you may need more Lactulose. You can increase it without a doctor's okay. A doc would tell you the same thing: Increase the dosage if what you are taking is not working well. You might also consider taking an antidepressant.

I recommend that you read the information in the folder at the top of the page entitled Hepatitis Resources. There is a lot of good information in there.

This forum has wonderful, supportive people with a lot of knowledge. Welcome. I am glad you are here. But please use black ink in your future posts. The lavender is hard to read.

Hugs,
Connie

Thanks for the warm welcome.  Being in cirrohsis is new to me, which is what my last biopsy showed in Sept. of 2011.  My previous biopsy revealed that I was Stage II, Grade I and that was in 2001.  So in 10 years I have gone from Stage II to cirrohsis and a MELD of 7.  The fatigue is the worst, with mood changes coming in a close second. The bloating and having a big gut have totally made me feel defeated. I used to be a runner, but now I hurt all over after a run.  I have also been experiencing overwhelming muscle cramps in the legs that wake me out of a dead sleep, after which my leg muscles are so sore I can hardly walk!

Yes I was turned down for the incevik triple tx because my dr. says I have a tolerance to interferon that will cause failure. From what I have gathered, the current Incevik triple tx  is NO PICNIC.  The drugs I am waiting on are the two DAAs that Gilead and another pharm company are trying to reach agreement on as far as business structure and profits.  The combination drugs are in Stage III clinical trials with almost 100% cure rate with very little side effects.  I have heard they are 2-3 years down the road. 

They think they found a cure for AIDs but not yet for Hep C. It is amazing to me that Bill Gates is donating gazillions of dollars for the AIDs drugs but nothing for Hep c.  I forgot to mention that the second tx I went through with Pegasus caused me to become insulin dependent diabetic.  Sometimes it is overwhelming to me and I want to give up. Sorry, venting again! :(

 

Good post, Hyde! MKX, I might add that there is medication for cramps. Ask your doctor about it. Perhaps fruit works because it's high in certain minerals.

I've wanted to give up a number of times SINCE transplant, as I've had so many problems. But I'm not the type to throw in the towel without a fight, so I keep telling myself that things will get better...one day at a time.

The trials you mentioned...are they the treatment without interferon? Or something else?

Hugs,
Connie