Old Friends

[creewoman]

Fifteen years ago I was introduced to one of Griz's buddies,the friend an I got along terrible.He presented himself as God's gift to women and when he failed to impress me he got an attitude toward me.Years have passed and we have mellowed and I see  him for what he is now,(just a guy with bad luck,bad relationships and now all alone.Crazy me I asked if he wanted to go to Seattle and he said he would and will be my support person while there He has alot of friends and some family  there so maybe I can skip the expense of the 69.00 per night.Now I just need to finish with my local tests.Now I am going to play upon the mercy of every dentist in the area for the Dental sign-off.
Also investigating other transplant centers UWMC is nowhwere near being one of the best as I thought.Best award for patient satisfaction and results is Mayo Clinic in Phoenix Arizona.mayo Clinic in rochester is close to a young daughter that I have in MN.Ruby is still trying to figure out how to be my caregiver at this young age of 13.My little girlis certainly a jewel she is trying to figure out how to graduate early to accompany me in the future.She wants to know if can hold on for a couple of years and use the new drugs available.Can the new drug treatment kill the virus and allow the liver to regenerate or Am I past the point of no return with a Meld score of 16?I don't make white or red blood cells and have extremely low platelets( they have been low for years).Does anyone want to help me out with these thoughts?.I am not very knowledgeable about the new study drugs.

[creewoman]

Great to know that I am not the only one.I was starting to feel like I was over-reacting to the effects.It took 4 days total for me to get feeling better and I am still dealing with the attack of swelling it brought on!

[Advocate1955]

I don't have any of the health issues that you have, and the prep was very, very difficult for me.  I had to go through the same prep prior to an abdominal surgery two years ago as well, and it was very, very difficult.
I'm not a doctor, but my guess would be that although you were dehydrated from the diarrhea and the vomiting, your feet were swelling because you were retaining whatever fluids you were taking in.  This may be part of the difficulty with your kidneys and your liver not functioning well (fluid retention).  This would be a good question for your GP or your gastro doc, and I would also ask what they can do to make the colon prep safer and easier for you next time.  I wonder if they could hospitalize you the day before and begin the prep, but with the anti nausea meds and IV fluids in place to prevent the dehydration and other problems?
Advocate1955

[creewoman]

Colonoscopy...I was prepared for the liguid diet and the preps effects for going to use the potty alot.What I did not expect was the vomiting.I was so sick that I projectile vomitted all over the bathroom(My cat,her name is"Happy" had the bad luck of being in the bathroom the first and worst time)got it too.Poor girl she didn't even bug me for more food all evening!I was still sick the next day and dehydrated!I never drank so much water in my life.The Potty trips were still numerous up until yesterday.
Now I have learned that I could have used diluted Sport's drink and not even use the low sodium broth.How can one be dehydrated and have swollen feet at the same time I really don't understand how,but I did and still do .I am thankful for the ability of being able to make it to the bathroom if nothing else.Extremely low blood pressure also so I am dizzy (but I already knew that and extremely fatiqued because of everything else I have really low Iron.the 24 creatine urine test is not good.either.
Latest Ref range 80-110 mL/min
Mine is 45(L).
Platelets 33 last time they were 29 in 10/26/12 .
I also have a cirrosis count to but I haven't looked it up yet to learn what is bad-good.
All...   Have a Beautiful Saturday,I hope it is warm wearever you are!

[Advocate1955]

This is a great place to ask questions and learn about HCV and liver disease.  Just keep asking.  Everyone on this forum is on the journey of learning more about HCV either because they have it or someone they love has it.  There is no reason to feel intimidated or embarrassed about asking questions.  We are here, we will listen, and we will try to answer questions or give support to the best of our ability.
Press on undaunted.
Advocate1955

[creewoman]

Not to worry I am following through with the Seattle stuff.I just want  to learn everything I can about all the treatments out there.I was so unprepared for this even though I knew some things about HCV I didn't  know half of what most folks on here know.It makes me feel intimidated and embarassed and like a little kid.I hope that all can understand that .I have no one else to share my thoughts and questions with and my tears as well sometimes so you all hear it all from me.I have thought at times that I should ask a little more privately but I value everyones knowledge tremendously.At this point other than my Mom(74 years old and in Norht Dakota),Ruby (limited because of her age) are the only ones that I have that understand when I cry .Honey freaks out all the time when I lose it .So anyway I will follow through even though I get lost so easy.
I wish that I could give you all A party!!!!!:)

[jules2551]

Hi Cree, they will probably want to do a biopsy for the "suspicious lump".  I had to go through the same thing before I started tx.  They gave me a local anesthesia and used an ultra sound while doing the biopsy.  I didn't feel a thing just pressure during the procedure.  Then I had to go have another mammogram, which I didn't feel a thing because I was still numb, to make sure they got everything.  Then they sent to pathology and the pathologist called me the next day and said it was a cyst.  Absolutely nothing to worry about.  I know it's another thing to deal with it but please take care of it and make sure to be on the safe side.

As for the colon prep....YUCK!  That is all I have to say about that one.  Once I finish tx I have to go in for another one because I had a pre-cancerous polyp.  They removed a total of 5 polyps.  Oh boy what we have to look forward to in life.

You can do this and you are making great headway.  Don't let anyone or anything stop you.  You can do this!

Jules

[creewoman]

I don't know yet I will get a call from them.

[Advocate1955]

Cree, I had a problem with the colonoscopy prep too. It made me sick, nauseous, weak, and shaky. They gave me an anti nausea med to take, and that helped. I'm praying the suspicious lump will be nothing serious. What will the follow up be re the lump?
Advocate1955

[creewoman]

My thanks to you all .I have to reschedule colonoscopy  prep  made me sick.Mamogram welll...I have a suspicious LUMP.

[BoceprevirGal]

  After you have your liver transplant, then the Hep C comes back, in your new liver. Usually after as little as 2 years, the liver will already be at Stage 2, because it moves faster after a transplant.
    Hopefully by the time this happens, then the new meds, like GS 7977 (sofosbuvir) and also quite a few others in the pipe-line, will be available for post-transplant patients.
    At this time, I believe a person only has a SVR rate of 33%, for Post-Transplant Tx.  
    Just thought I'd remind people, but I'm sure Snow already knows this.
Hey, that is great that you got Griz' friend to accompany you, but will Grizz get jelly?
  That is so sweet that Rosie wants to be your Care-Giver.  She can still be a huge help to you, I hope she gets to stay with you, after your Transplant.  
    Good luck with all your upcoming Drs' appts, etc.  If you are having problems getting a dentist to treat you,  you should call the local News Channels or Newspapers, and let them know how important to you going forward with your transplant, these Dentists appts are.  My husband has gotten alot of action by doing this.

[Advocate1955]

Yes, I think future Hep C treatments may be available someday, even for decompensated cirrhotics.  Certainly the pre-/post-transplant studies with GS7977 are hopeful.
Advocate1955

[mikesimon]

The question of whether decompensated cirrhosis can reverse to some degree is not known because interferon based therapies are not appropriate in those patients.

But, I think the first article leaves the door open on that question.

"The development of novel interferon-free drug regimens for the treatment of chronic hepatitis C may hold promise for the treatment of patients with advanced HCV-related cirrhosis in the future.[62]...."

Mike

[Advocate1955]

So, if I'm understanding what I've read correctly, the difference is whether the liver is still compensated or not.  If a person has fibrosis 1-3 or compensated Cirrhosis (liver is still functioning well), there is a good probability that it will heal itself and reverse the damage.  If a person has decompensated Cirrhosis (liver is not functioning well), the damage is irreversible.  Since we know that people with decompensated Cirrhosis are too ill to treat their Hep C with the currently approved medications, their only current path is to have a liver transplant and then possibly treat their Hep C before their liver fails and they die.  Am I correct?
Advocate1955

[can-do-man]

Would like to add that being cirrhotic myself I have put the healing question to my own Hepa, his answer seemed to be on the same line as doctor D... A lot just depends on how much one has advanced.

Also I always tell Dr. Kwo to give me his honest opinion and not just "a feel good answer". Its easier for them to give a feel good answer but I would rather have the truth..........

[can-do-man]

Also Dr. D who used to answer questions here on it,  very well known in the Hep-C field and also cured from Hep-C...

http://www.medhelp.org/posts/Hepatitis/Recovery-of-Fibrosis-and-Cirrhosis/show/534318
----------------
That said I doubt if you could find anybody that would think a decompensated liver could heal its self, for one thing they would have never risk treatment.......... Good luck

[Advocate1955]

Thank you for this information.  I am glad to see that some people with compensated Cirrhosis may experience a decrease in fibrosis or even regression of Cirrhosis if they attain SVR.
Advocate1955

[rivll]

I was thinking of the second part of the article where it said,"The development of novel interferon-free drug regimens for the treatment of chronic hepatitis C may hold promise for the treatment of patients with advanced HCV-related cirrhosis in the future.[62]...."
But I meant to ask to whether or not some people with decompensated cirrhosis with SVR could experience fibrosis regression and end up avoiding the transplant route.

[mikesimon]

Certainly not in the first article. It is based on Peg/Riba therapy and that is not appropriate in decompensated cirrhosis.

To quote the article:

"...It is notable that the currently available peginterferon-based therapies cannot be administered in most patients with advanced decompensated HCV-cirrhosis.[61] The development of novel interferon-free drug regimens for the treatment of chronic hepatitis C may hold promise for the treatment of patients with advanced HCV-related cirrhosis in the future.[62]...."

[rivll]

Does this study include cirrhotics who have decompensated?

[mikesimon]

Review Article: The Reversibility of Cirrhosis

A. A. Sohrabpour, M. Mohamadnejad, R. Malekzadeh
Disclosures
Aliment Pharmacol Ther. 2012;36(9):824-832.

"...Hepatitis C

Several studies have demonstrated that regression of fibrosis in patients with chronic hepatitis C is associated with sustained virological response to therapy.[53–57] Poynard et al. pooled the data from four randomised trials including 3010 naïve patients with hepatitis C who had pre-treatment and posttreatment biopsies. The reversal of cirrhosis was observed in 49% of patients with baseline cirrhosis.[58]

To better define the long-term benefits of anti-viral therapy, we must take into account the likelihood of progression to cirrhosis in treated patients. Together with the amelioration of the necroinflammatory activity, the improvement in the stage of fibrosis may explain the portal haemodynamic improvement that are detected in sustained responders, changes that in turn might explain the decreased number of decompensation events observed in these patients.[59, 60]

It is notable that the currently available peginterferon-based therapies cannot be administered in most patients with advanced decompensated HCV-cirrhosis.[61] The development of novel interferon-free drug regimens for the treatment of chronic hepatitis C may hold promise for the treatment of patients with advanced HCV-related cirrhosis in the future.[62]...."

http://www.medscape.com/viewarticle/772507_5

A morphometric and immunohistochemical study to assess the benefit of a sustained virological response in hepatitis C virus patients with cirrhosis.
D'Ambrosio R, Aghemo A, Rumi MG, Ronchi G, Donato MF, Paradis V, Colombo M, Bedossa P.
Source

Abstract

Although annular fibrosis is the hallmark of cirrhosis, other microscopic changes that affect liver function such as sinusoid capillarization or loss of metabolic zonation are common. A sustained virological response (SVR) may halt fibrosis deposition in hepatitis C virus (HCV)-infected patients, but its impact on the other cirrhosis-associated lesions is unknown. The aim of this study was to assess the impact of an SVR on cirrhosis-related histopathological features. Paired pre- and posttreatment liver biopsies from 38 HCV patients with cirrhosis with an SVR were analyzed. Fibrosis was staged using the METAVIR scoring system, and the area of fibrosis was measured using morphometry. Ductular proliferation, metabolic zonation, sinusoid capillarization, and hepatic stellate cell activation were assessed by anti-cytokeratin-7, anti-glutamine synthetase (GS), anti-cytochrome P4502E1 (CYP2E1), anti-CD34, and anti α-smooth muscle actin (αSMA). After 61 months from an SVR, cirrhosis regression was observed in 61%, and the collagen content decreased in 89%. Although periportal and lobular necroinflammation vanished, portal inflammation persisted in 66%. Ductular proliferation decreased in 92%. Before treatment, metabolic zonation was lost, as shown by GS and CYP2E1, in 71% and 88%, respectively, with normalization in 79% and 73%, after an SVR. Conversely, no changes in sinusoidal capillarization were observed after treatment, as assessed by CD34 (P = 0.41) and αSMA (P = 0.95). Finally, no differences in all the immunohistochemical scores emerged whether or not cirrhosis persisted. CONCLUSION: Cirrhosis regression and decreased fibrosis are frequently observed among HCV patients with cirrhosis with an SVR. Despite ductular proliferation vanishing and lobular zonation restoration, portal inflammation and sinusoidal capillarization may not regress after viral eradication.

http://www.ncbi.nlm.nih.gov/pubmed/22271347

[Advocate1955]

That would be a question for your transplant hepatologist or for HectorSF.  Your liver is decompensated and failing, so we know that you need a transplant.  If you were able to treat with the new drugs, which aren't available yet, you may be able to cure your Hep C, but you would not be able to reverse the damage to your liver.  Once the liver has progressed to Cirrhosis, even compensated Cirrhosis, the damage to my understanding is irreversible.  Curing your Hep C could possibly stop further damage, but we already know that your liver is not functioning well and you will gradually become sicker and sicker.  In my honest opinion, the best path for you is to get listed for a transplant.  Once you are listed and have a transplant team monitoring you, if something becomes available to allow you to treat your Hep C, you will be one of the first on their list, but the bottom line is that you will still need a transplant to survive.
So happy to hear that Griz's friend will be your care provider for the assessments and classes.  Another big step in the process accomplished!
Take care.
Advocate1955