Imkindly and her Husbands Story : Waiting on the Transplant List

Thank you so much for sharing your story with us. When I first read
your email, anger just engulfed my whole being. The pain, and
suffering you both had to endure is inexcusable. Then while all this
was unfolding, you both still had to deal with finding out your
husband had Hepatitis C.

Imkindly and her Husbands Story

(Followed With Our Questions)

My husband went to the hospital in August 2000 for what was supposed to be a 'simple' percutaneous lithotripsy operation. (He had a huge "staghorn" kidney stone). They were supposed to go in through his back....bust up the large stone....and vacuum out the pieces.) It was supposed to be a 2 day stay in the hospital.
Well everything went wrong.
We were at a very small local hospital, where I don't think they really knew what they were doing. My husband went into septic shock, spent two weeks trying to recover (most of that time was in ICU). He gained 44 pounds during that 2 weeks. (WATER WEIGHT). The doctors guessed all kinds of things---heart failure?, no...pancreatitis?, no...blood clot somewhere?, no...gallbladder?, no...
Meanwhile they gave him massive antibiotics and two blood transfusions, and sent him home. He has never been well since.
After 3 months of dealing with the local gastroenterologist...he told us that my husbnand's liver was shutting down...we finally got an appt. with a hepatologist 130 miles from here.
We had out first appt. with the hepatologist in November 2000. He did a CT Scan, and told us that my husband's kidney, liver and pancreas had been perforated with fragments of kidney stone. (This is also what was causing all the infections (blood poisoning----septic shock).
He compared it with someone being shot with "buckshot". Little fragments of stone had flown everywhere.
He (hepatologist) gave us another surprise. He said that my husband had Hepatitis C. We were totally unaware of hepatitis c......my husband hadn't been sick or feeling ill or anything (before the kidney stone operation).
As a final diagnosis----he said that my husband's liver had been "insulted" by the fragments and infections, and was full of scar tissue---decompensated cirrhosis.
He said that a "normal" liver could have withstood the "insult" of all this.....but that my husband's liver was "vulnerable" because of the hepatitis C, and had decided to shut down.
He recommended that my husband get evaluated for a liver transplant right away.
In February 2001, my husband was accepted onto the liver transplant waiting list.

I can't help but get upset over all of this----and from Aug.2000 to Nov. 2000, we dealt with so much misdiagnosis --- in hindsight (after reading alot now!)--- I could kick myself for not being aware of hep c.......not being aware of what was going on when my husband suddenly gained 44 pounds and broke out in pink spots (Ascites and Spider Nevi).....not being aware of much of anything (to do with livers), until it was out of control.

My husband has 10% liver function now. Things have progressed in the past several months (since we began waiting for a transplant) and he is very sick. (Massive ascites, an abdomenal hernia, an umbilical hernia, mild encephalopathy, thrombocytopenia, and so far two episodes of spontaneous peritonitis.) He's been in and out of the hospital a lot.
 

(The following questions were sent by email to imkindly. This as you might imagine  is a very difficult way to do an interview. As I would of loved to respond to her every answer. She has been through so much, and she is still  fighting on her husbands behalf. She went to great lengths to answer  our questions. All because she wanted to help anyone who might be reading this interview. Each time I read her story, and answers to our questions, I become more angry. SO many mistakes, each one putting her husband in more and more danger.  She is a brave woman, and a exceptional supporter to all of us.)

As for your questions:
No one has ever told us his genotype or viral load.
The liver damage he suffered was mostly caused (according to the hepatologist) by the perforation (of the kidney stones) and mainly the "insult" of all the blood poisoning.
And he has never gone through any treatment for hep c. (I did inquire about it---and they told me that it would be life-threatening in his condition.)

Right now, we are just praying that this beeper will hurry up and beep (the beeper the transplant team gave us).
He needs a new liver. Badly.
 

You mentioned in your story that your husband never had any real symptoms before the operation. Then you would say your husband was a healthy man before the operation?

Very healthy. Handsome, in good shape, and working full time. We had just bought a house in July 2000. Everything was going good.
Then he had a pain in his back and went to the local MD. The local MD sent him to the local Urologist. The Urologist said he had a large kidney stone, and recommended a "percutaneous lithotripsy" to remove it.
We scheduled the operation for August 2000. (No big rush---we scheduled it for 2 weeks away, when it would be convenient for my husband to take 2 days off work.)
DAY ONE- The operation was scheduled for 6PM that night. They told me that it would take about an hour.  I waited until midnight, before the urologist appeared in the waiting room and told me that they were going to "incubate" my husband in Intensive Care. He wasn't "waking up" like he should. Something was wrong.
I might add that I spent the night that night, but the Urologist went home! He said my husband was in good hands in ICU, and that he'd "see me tomorrow."
DAY TWO- The next day my husband did wake up. They moved him to a normal room. He didn't look right. He couldn't get out of bed (had catheters), but everyone said he was ok, just "recovering". He wouldn't eat. Only nurses came in that day. No doctors. I spent the night that night too.
DAY THREE- The next day (we should have been home by then) my husband could finally sit up. He still didn't look right, but he finally ate some jello, and the doctor told me to go home and get some rest, that he was "going to be fine". So I went home that third night.
DAY FOUR- I showed up very early the next morning, to find my husband being rushed back to ICU. They said his lungs were filling with fluid and that he was "drowning". No one knew why.
I wasn't allowed into the ICU that whole day! I spent that day meeting new doctors. The urologist had dropped our case. I met a gastroenterologist that told me my husband had heart failure. Later I met a cardiologist that told me NO, it's not heart failure. Then I met a gallbladder surgeon who told me he thought my husband had pancreatitis. They decided to starve my husband (standard procedure? for pancreatitis? No drinks or food.) My husband slipped into a coma.
DAY FIVE- I was making a lot of noise. Our Primary Care (normal MD) came to talk to me, and explained that the gastro was now saying maybe liver failure....but the gallbladder surgeon was still convinced it was pancreatitis. I was told they were going to continue giving him IV antibiotics, along with blood transfusions.....but that I had better "call the family". They didn't think he was going to make it.
DAY SIX- My wonderful in laws showed up and we drove to the urologists office to have a small showdown. (This man hadn't spoken to me since the night of the kidney stone operation.) He explained that there were risks involved in any operation (we had signed the form!), and he had put my husband in good hands.
DAY SEVEN THROUGH TWELVE- My husband gained 44 pounds. Even his eyes swelled. They taped cotton balls over his eyelids. He broke out in pink spots all over his chest and shoulders. They continued giving him IV antibiotics, IV diuretics, and blood transfusions.
DAY THIRTEEN- My husband came out of his coma, but didn't know who I was at first. Didn't seem to know anything. Didn't remember a kidney stone---nothing. He thought we were still in Corpus Christi! (He didn't remember moving into the new house.) The gastroenterologist ordered him dinner. (Stating once and for all--that it wasn't pancreatitis.)
DAY FOURTEEN- He was moved to a normal room. The gastroenterologist came to see us, sat down on the bed, and told us that he "believed" this was probably liver failure, and that he'd like for us to come see him (at his office), after my husband was released, and "we'd investigate this further."
DAY FIFTEEN- They sent my husband home.
His abdomen was huge. He had alot of pink spots on his skin. He said he couldn't see (his eyes had changed focus from what he'd been through.)
That week his left leg began to swell. He couldn't fit in pants. We went to the doctor, and he thought it was maybe a blood clot. We wasted another week with tests for blood clots. (No blood clot found.)
We scheduled an appt. with the local gastroenterologist (to "investigate this further"). He couldn't work us in until October.
Meanwhile, in September, my husband went into septic shock again.
He was hospitalized for a week (IV antibiotics), and sent home.
October came, and the local gastro did tests. He told us that my husband was in liver failure and all he could do was to "get his affairs in order." He proclaimed a death sentence right there in his office. Said my husband wasn't going to live till Christmas 2000. Nothing we could "do".

Did they at any point do a liver function test?

October 2000. And I asked for a copy.
AST  59 (high)
ALT  32
Alkaline Phosphatase 160 (high)
Bilirubin 1.8 (high)
Albumin 2.7 (low)

When they noticed the fluid build up, did they then start putting the pieces together, relating it at all to Hepatitis? Or liver damage?

NO. They tried to call it heart failure. Then they said it was just septic shock (and sudden swelling). They said the infection could be anywhere. They didn't know where. They gave me examples like a "toe" or a "tooth".
I was dealing with a SMALL local hospital that was scaring me to death.

Could you tell us a little bit about ascites?

I read about ascites on the internet.
I became very frightened in October 2000 and began reading everything I could find about liver failure, on the internet.
I had my husband's blood test results, so I did searches on each item. I found out about Albumin, and how low albumin can cause something called "ascites". I looked at my husband and figured out "ascites" for myself. (No doctor had used that word to me at that point.)
Ascites is edema (water build up) in the abdomen.
Albumin is a protein in the blood that "waterproofs" veins.
When Albumin is low...veins aren't 'waterproof'. Veins leak fluid (protein) into tissue. The fluid usually collects in the legs and abdomen.
I found a doctor and hospital in Houston (through the internet.) We got an appt. with a hepatologist in Houston Nov. 2000.
He confirmed that my husband had "massive ascites".

Many of our friends worry about the complications of ascites. What would be some warning signs , or what other complications can develop directly related to the ascites?

As ascites gets bigger and bigger, hernias can develop. (Tears in the abdomenal wall).
The intestine can come through those tears, and strangulate. Then you've got an emergency situation on your hands. The person gets clammy (cold sweat) and pale. A lot of pain in the abdomen. Then there's a sudden drop in blood pressure (makes a person dizzy or pass out).
(That's happened to us twice this year.) You go to the emergency room.

Also, the ascites fluid can become infected. (Chances for this go way up--if you have hernias too.) Infections happen quickly, and it's called "spontaneous peritonitis". We've had that happen twice this year too. If a person with ascites tells you that they are suddenly "cold"---take their temperature. Then take it again every few minutes. Never ignore a fever in a person with ascites! Fevers can fly up to 104 degrees in less than an hour. (That's why they call it "spontaneous")
Go to the emergency room. It's life-threatening and time counts.

How did they treat your husband’s ascites?

My husband still has ascites. It's huge. He looks like he's pregnant.
Plus---His abdomenal hernia is a large lump above his navel (looks the size of a grapefruit).  His umbilical hernia is in his navel. Looks like a large red tennis ball, stuck in his navel.

The cause of the ascites is low Albumin. The liver produces the albumin.
(To fix the problem---you need a new liver.)
Our instructions to keep this ascites under control are:
1. diuretics (water pills)- to try to get rid of the fluid build up
2. a low salt diet - to prevent an even bigger build up
3. Weigh my husband everyday. Any weight gain of 5 pounds or more, during any week---call the hepatologist. (So that he can adjust diuretics dosage).
4. No lifting anything that weighs more than 5 pounds. (That's to keep the hernias from getting bigger.)
5. Watch out for fevers. (Any fever means go to the emergency room.)

Could you explain thrombocytopenia to those of us who are not knowledgeable about it?

Thrombocytopenia is low platelets. Platelets are what enables your body to form a scab when you're cut. A person with low platelets doesn't form a scab as quickly as they should, so there's a risk of "bleeding out" (bleeding to death) if they're cut.
In short---Cirrhosis can cause portal hypertension. Portal hypertension can cause splenomegaly. Splenomegaly can cause Thrombocytopenia.

Could you help others to understand what decompensated cirrhosis is?

Cirrhosis = scar tissue in the liver.
"Decompensated cirrhosis" means that complications are appearing. (Complications like Ascites, or Encephalopathy, or Varices.)

What should a family with a loved one who has decompensated cirrhosis watch for, in the way of life threatening complications?

1. Thoroughly check out any medicine before you let them have it. Read labels. Lots of things contain alcohol. (A dentist gave my husband a mouthwash that really sent us on an "adventure"). No alcohol. Read cough and cold remedy labels. Our hepatologist won't let my husband have anything containing acetaminophen. When in doubt about a pill or product, call the hepatologist and ask.
2. Be the "food police". No salt. Read labels. Most canned goods and boxed products are full of salt. Salt makes ascites much worse fast.
3. Varices. Any bleeding is an emergency. Vomiting blood, passing blood, passing black stools----any of those, go to the emergency room.
4. Fevers. Go to the emergency room (they administer IV antibiotics). Time counts.
5. Encephalopathy. This can be anything from acting "drunk", staggering, confused, slurred speech, or just excessive sleepiness.
Lactulose is prescribed to help this. (But if a person is confused or acting "drunk"---they won't remember to take their Lactulose!)
Make sure they take it! Encephalopathy can lead to coma.

I am sure the wait for a new liver is a daily torture for the both of you, to say the least.  How long is the waiting list in your State?

BEFORE "MELD", we were told that since my husband's CTP score is 12, we could expect a transplant in 6 months to a year. (We've been on the waiting list 10 months so far.) So we had hopes that it could happen anytime.
However, our last visit to the hepatologist...he explained the new MELD scores. My husband's MELD is only an 8.
If he develops kidney failure, his score will go up.
The average MELD score that gets the next liver available is an 18.
As sick as my husband is, he is just an 8.

When you get the call, and we all hope it is soon. Have they described to you the whole transplant procedure?
 

Yes, we had to attend 6 "transplant education classes". Each class was 2 hours long. They covered a lot of material.

Could you tell us a little about it?
 

The classes were
1. Hospital Stay (the operation)
2. Infection / Rejection (after transplant)
3. Life and Death Issues (avoiding trouble after transplant)
4. Transplant Medications (after transplant)
5. Nutrition (after transplant)
6. Psychosocial Issues (waiting for a transplant)
I understand that not every transplant center holds these classes....but ours does and I'm glad.

We know you have a wonderful support forum online to help others with information about cirrhosis, and liver failure.  How difficult has it been for you learning so much now ?

When all of this began happening to us (confusion after the kidney stone operation), I did not have time to do any research. My mind was literally spinning. I was in "panic" mode.
I think without the internet----I would not have even known about "Ascites", or that we even needed a hepatologist. I would hate to think what would have happened, if we had stuck with our local gastroenterologist.
I'm pretty compulsive about learning all that I can now. I had a lot of web pages "bookmarked", and just two months ago I decided to put it all on a forum at Delphi.

Do you think knowing the complications makes it more difficult for you to cope with your husbands liver disease?

No. It has helped.
Example---I had read about spontaneous peritonitis BEFORE it happened the first time to my husband. One night he complained of being "cold". I took his temperature, it was 99.  I took his temperature again about 20 minutes later, and it was 102.  I called an ambulance. By the time we got him to the hospital it was 104.
They saved his life.
If I hadn't already had a clue about how spontaneous peritonitis works---I might have wasted precious time.
Information is power.

What can we do to help ?

We need to get rid of the "WAITING" for a donor organ.
Get everyone you know---to get everyone they know---to sign an organ donor card. There are enough organs...they just aren't being donated.
 

Thank you so much for sharing your story with us. We hope we will soon hear of your husband being called, and receiving his transplant. We all wait along with you, keeping you in our hearts with each day that passes.

Please visit our friends Web Pages, and Support Forum.

http://forums.delphiforums.com/liverfailure
http://www.expage.com/cirrhosis

The wait is to long for all those who are on the list. We have many friends who are waiting, while their health is declining. The fear they must face, wondering if the liver will come in time. We can only imagine how it must be like, to look across the room, knowing your spouse, or child might not make it in time. To feel so helpless, and not able to help them.  This is to much for any person to have to endure.

We all hold our breath, along with you. With hope in our hearts, and a prayer on our lips.
 

UPDATE: Imkindlys husband has received his new liver, please go to her site to read how he is doing  http://forums.delphiforums.com/liverfailure

We are all so happy for the both of you, we wish you both a wonderful life and a new beginning.

While reading this story, you will learn of one woman's persistence and endurance. She alone took control of her disease. How fortunate we are to share this story with all of you. We hope you come away from this story, feeling the same enthusiasm we felt while talking to Randi.

We would like to thank Randi for taking the time to share her story with us. I have wanted to ask her so many questions, when I learned of her story. We all have so many friends who are on the Transplant List, or who have cirrhosis. This story will give them so much hope. Randi has supported so many people over the years, her devotion to those do not go unnoticed. I have had the pleasure of talking her to in chat off and on over the years.

(Please read Randi’s story , followed by our questions).

I'm Randi and I have Hep. C, Cirrhosis, I'm on the Liver Transplant List at University of Colorado.
At time of diagnosis in 1993, I was 4th stage Cirrhosis. My first Gastroentologist said I had 5 to 10 years.

I was told I was too sick for treatment until 1998, when I discovered the internet and combo had just been approved. I told my Dr. that I needed to be proactive and insisted on trying something.

Spent 12 weeks on mono Interferon and 49 weeks on Interferon &; Ribavarin, completed treatment in Jan. 2000, and have been negative since. On 5/29/01 I was told that my liver was stable and I was being removed from active transplant waiting list and moved to Low Priority :).

My education, information &; support has come from my strong faith, my family, the internet, friends, books, and personal medical experiences since 1993. There are many facets to this disease but the worst ones are fear, misinformation, depression and lack of support.
I believe they will soon find a cure for Hep C, but in the meantime we have to learn how to survive, and take care of ourselves.

Your story is such an inspiration for
others. Have you ever heard of anyone else clearing the virus, and remaining
virus free?  Who also was in stage 4 cirrhosis?

Yes, I have a good friend who has been on the transplant list now for 6 years,
and he cleared Hepatitis a year ago, and now appears to be stable with normal
labs. 

Your treatment started with only interferon right? Did you respond to
interferon only? 

When I first did interferon in 1993 I did respond but was
taken off after 3 months because of depression and low blood platelets.  I
then relapsed.  In 1998. I was trying to convince my doctor, that I wasn't too sick
to try combo, and he finally agreed to start me out lst on interferon and see
if I could handle the side effects, and I responded.    He kept me on mono
for 12 weeks and then added Ribarvarin for 49 weeks.

Do you know in what week you responded to treatment? Did they do  regular
PCR'S at that time?
 

I didn't have a PCR until 8 weeks into mono treatment but I was negative at
that time.

We have friends who relapse while still on treatment. Did you ever relapse  while you were on treatment ?

No fortunately I haven't
 

I see you were taken of treatment the first time, and then relapsed.
Here is the question everyone wants to ask you, what is your genotype,
did they test for it?  

In 1993 they didn't believe in testing for genotype since my doctor, felt he
wouldn't treat me any different and Kaiser wouldn't pay for test.  I left
Kaiser in 1998 1/2 way through combo treatment and switched to a private
gastroentologist.  He tested me for genotype but since I had no viral load I
also didn't have a genotype. 
 

(This is the case with so many of us, they don't test for our Genotype. We then clear  the virus and never know what Genotype we had. Which in the end, might really matter if we relapse.) Please see our article on Genotypes from Hepatitis Magazine, at the bottom of this interview.

What was your viral load before treatment?  

Never had PCR taken until beginning treatment in 1998 and at that time it was
48,000..... but than again there wasn't suppose to be much liver left to be
inflamed.  My Dr. at the time said that it didn't matter if viral load was
2,000 or 7 million you either have hep c or you don't. Sorta like being a
little bit pregnant. lol

Many people worry when their liver function tests fluctuate on treatment.
Did your Alts and Asts ever go up and down on treatment ?      

They did a few times and they still do periodically but my Hepatologist said not to worry
and by next text they will be back to normal. 

Many people with cirrhosis have trouble with their platelets while on
treatment. Did you have any problems with this?  

 In 1993 my platelets dropped to 90,000 and the Drs. at Kaiser freaked as
they had a strict protocol then.  In 1998 they didn't worry until I reached
50,000, I got close to that but never under. 

Did you have trouble with depression while on treatment?

 In 1993 I was trying to Direct a Pre-school I owned.  Kept cutting back my
hours so I didn't have to run into any parents lol.    In 1998 I was
prepared: I sold my business and stopped working.  Was seeing a Psychiatrist
and was already on antidepressants. When things got really rough, like when I
was placed on the transplant waiting list, I sought therapy to help me cope.  


I have heard many times over, and over again. That when you have
cirrhosis, treatment is to difficult to tolerate.
What problems related to your cirrhosis, did you find this to be true, if
any ?

  
Well, I was painfully fatigued before treatment, during and presently so that
didn't change.  I did have problems with brain fog that turned into
encephalopathy that was scary, the meds at times made me nauseas, my mouth was
so dry I use to call it Velcro tongue and I had hard time sleeping.  But I
was able to be put on medicines that took care of those symptoms and/or side
effects so it was tolerable.

Do you think your cirrhosis will reverse itself to any measurable
degree? 
 

 I do think so, or at least I shouldn't get any worse than I am now.  I
know this is something being studied and I pray it comes true, and I believe
in miracles :)

What stage of cirrhosis are you in now, are there different stages of
cirrhosis?

According to my Hepatologist at the Transplant Center there are no stages in
Cirrhosis.  Again if you have scar tissue you have cirrhosis, if whatever
caused the cirrhosis is continued your liver will continue to scar until it
goes into liver failure.  If the inflammation is discontinued than your liver
should stabilize.   When you are placed on the transplant list you are given
a status #   1 being the sickest, 2a and 2b needs liver soon, and 3 which is
stable.  I guess you can sorta say there are 2 stages  Stable, and End
Stage Failure.


Randy at what percentage was your liver functioning before treatment ?

According to my Gastro at that time maybe 10%  I was told in 1993 I had 5 to
10 years until needing a transplant.


When was your last biopsy? Will you be having another one?

My last biopsy was last summer and only done because Dr. and me wanted to see
if there had been any noticeable difference after responding.  I still showed
Cirrhosis...
Probably won't have anymore biopsies unless they start testing meds to make
cirrhosis reverse that I can take place in. 


Do you know if your liver is functioning at a higher degree now?  

All my labs are stable now accept the GGT and ALP they are elevated and I'm
generally feeling better more clear headed.  Still have problems with fatigue
and depression and aching but think that is just me lol and am getting them
under control. 


What is the chance you will still need a liver transplant?  

According to Transplant Center 10% chance, right now Dr. is more concerned
with the risk of Liver Cancer. 

We hope you never hear the word cancer in your lifetime.  I am sure your faith will play a  role in keeping you strong. You will remain in our hearts and thoughts.

Would you say you are cured? That's a big word I know, I bet you
asked your doctor the same thing. 

Well, I usually tell people I'm in remission, but according to my Dr., he
feels that if you stay a responder for more than 6 months post treatment you
are most likely cured.  I've learned though that any day can be my last for
whatever reason so I enjoy what today brings and not worry about the future. 


Randi if you still have cirrhosis, you still have scaring of the liver.
I have read about new medications for cirrhosis , are there any
that could be available for you?

As of last Nov., no nothing that was available for clinical studies.  Since
my Dr. Gregory Everson is head of University of CO I know I'll be notified if
something becomes available.  He was hoping maybe 6 months from now. 
 

Do you feel better now then you did in 1993 when we were first
diagnosed?

I feel alot better and smarter lol.  In 1993 I knew nothing the Drs. didn't
know nothing and I wasn't online until 1998.   I really didn't understand
what was happening and lived in denial for about 5 years each day feeling
lazier and lazier when it came to doing stuff with my kids.  Than I'd go to
the Dr. and he'd tell me again how sick I was so I'd go home sad than push it
all aside until next appt.  I really felt much better when I came online in
1998 just prior to starting treatment, I finally understood what was going
on. At that time I started attending church also so I no longer felt I had
to worry it was out of my hands.  I also got involved with helping give
support to others which I really enjoyed and it gave me the support and
friendships I needed so much.  My best friends are heppers I met online :).  
 

How often are you monitored now by your physician ?

My last appt. was last Nov., and he said come back in a year which even
surprised me.  He said my primary can monitor me now and if I get sicker call
to come in earlier.  I see my primary ever 1 to 2 months usually anyway. 

To think you cleared this virus only because you insisted on treatment.
What advice would you give those with stage four cirrhosis, who might be
thinking of treatment?

Try it !!!!!    What do you have to lose?  If you don't try treatment it
can't possibly work and there is no other way you can stop the progression. 
You might not need that transplant if it works and worse comes to worse and
your transplanted you won't have to do treatment with your new liver.     If
it doesn't work you're where you are now no worse off and probably at least
slowed down the progression.   If your Dr. says NO talk him into it or get
2nd opinion.  Unless you have a medical reason that you can't do treatment
than your Dr. is probably right.

Many people worry about living with cirrhosis. Has
living with cirrhosis made for a difficult life? 

Well, one thing of course is the fact that many people don't believe you;re
really sick, so some of them expect a lot more of me than I'm willing to give.
Convincing my family I wasn't lazy was a big one and finally happened when I
was accepted on the transplant list.  Figured if I was sick enough for new
liver I must be sick lol.  I know I'm too fatigued to work anymore but wish I
felt well enough on a daily basis so that I can volunteer places and know
that I'll show up. I'm signed up to help the Organ Donor Awareness Council in
CO but haven't shown up much.  I guess just adjusting to your limitations
and learning to accept them.

In closing do you have any advice for us, about living with HCV ?

First you need to keep a positive attitude and good sense of humor.  Educate
yourself, be involved in your own medical treatment.  Join support groups
online and/or off and talk to others who are going through the same thing. 
Drink lots of water and get lots of rest.  Live one day at a time, and enjoy
today and believe

 
What good advice Randi, a positive attitude is one of many traits you have been blessed with. We are very confident your story will give the strength  others might need,  to seek out treatment. Or to even ask their physicians if they might be a candidate for it. We must be educated consumers when it comes to our own health. After all their is a lot at stake, it could mean the difference between life and death. We all want to thank Randi again, for letting us learn from her. Randi continues to support others with HCV. Please go and visit her site. I am sure she would be very willing to answer your follow up questions.

http://groups.yahoo.com/group/HepRandiSupportForHepatitis

This in on the bottom of Randi's posts............

Give your problems to God he's up all night anyway

We are so fortunate to have Hermit’s interview on our site. Once again one of our friends found the determination to go against their Doctors better advice.

Not all Genotypes 1a or 1b are able to clear the virus. Those with cirrhosis seem to even have a more difficult time. But as you can see it has been done.

All of us would like to thank Hermit for sharing his story with us. We are always in search of incredible stories like these.

The sad fact remains there are not enough stories published on the Internet or in the media relating to our disease. We think it's beneficial to experience first hand how the outcome might correlate with where we are in our own battle with HCV.

We all know it is so difficult to read the medical abstracts and then try to comprehend where we fit in. We hope all those who read this story will gain the knowledge needed to determine if they might or might not be a candidate treatment.

While reading our message boards I found Hermits story. I emailed him right away and asked if he would let us ask him a few questions about his therapy. He was so very gracious and replied immediately.  We can't thank him enough for sharing his story with us. I know in our very own forum we have more then a few people on treatment who also have cirrhosis. This story will give them hope, and might even answer some of their questions. Thank you so much Hermit for doing this for us, we appreciate your time and wisdom.

I was 1a & 1b, had and have cirrhosis and cleared on the old combo and have been negative two years post treatment

Well its like this; had I not treated when I did -started combo 4-24-98- I would be end stage or worse by now. Because all 3 gastros I saw before treatment agreed that with luck and clean living I would be going end stage in 5yrs without treatment but all 3 also agreed I was too far along for treatment to do any good. One agreed to treat me but I was told to only expect to lower my viral load and maybe buy some time. Well I proved them all wrong.

However I still have fatigue, muscle and joint pain, edema, cirrhosis and on and on, but the ongoing damage from hcv has stopped. Some of this may be damage caused by the virus; some by treatment and some by the cirrhosis.

I also wonder if there is not another disease lurking -TTV or something- that has yet to be discovered. But all in all people with cirrhosis can treat with positive results. I would do all 79wks over again because even though I have problems I am not end stage and I did buy some time to wait for new drugs that reverse fibrosis and maybe become a lab rat again testing them. Who knows, I may live long enough to become and older fart.

Hermit

I knew since 1988 something was wrong and had seen all sorts of specialist who all said they could find nothing wrong with me. On 8-16-97 I asked for the test for hep c. At first the Doc laughed at me and I told him about the army risks- air guns- vaccines etc and the fact I was transfused in 74 with 7 units whole and 2 of a clotting factor- and he then agreed to order the test. When he called me two days later he said I was the first in 11 years of practice dx'ed themselves correctly………..

When you first learned you had HCV, did you also find out you had cirrhosis ?

NO

Was 1998 the year you had your first biopsy, and have you had any others since then ?

NO and the biopsy was late 97….

How did you and your family deal with the fact you not only had HCV, but also cirrhosis ?

I cried because by the time I had educated myself enough to make the dx, the family was in denial…….

Hermit our families often have a hard time excepting the fact we have a chronic illness. Our symptoms are not always apparent to them. We don't always let them know how ill we feel at times. I think we protect them, and being in denial is the only way they can cope. Finding out you have HCV is hard enough, it can be a very lonely disease for most of us.

Could you tell us what dose of interferon and Ribavarin you started out with ?

Scrip was for 3million units 3xweek intron A and 1200 mg riba daily. I did 237 injections and 3300+caps. It was rare for me not to do the 3mil units unless I was feeling extra bad; usually I did 3.5 to 5 mil units per injection.

Did you remain on the same dose through out treatment? Or did they need to adjust it because of low platelets or other side effects from treatment ?

No adjustments were made while I was on treatment.

To have both genotypes seems as if you had so much stacked up against you, plus also having cirrhosis. Did you ever know your viral load, I know people reading this interview will wonder if it was also high ?

My viral load was 8.6 million male 50+ acquired by a transfusion.

Do you know in what month or week you cleared the virus, and did you ever have a break through ? ( for our readers....this is when the virus returns during treatment)

First pcr was done at the 6mo mark and I was clear down to (less then) <600 and no more until 6mo post so if I had a breakthrough I was not aware of it.

Would you happen to know any of the results of your blood tests while on treatment ?

The only feedback I had was they looked good..

You were on treatment for 79 weeks, when did you feel the worse side effects from treatment ? Would you say it was in the beginning , or near the end of treatment? I know for some of our friends who have cirrhosis, treatment can be much harder to tolerate.

The first 6months were easy and from there on they got worse every day; I lost 1/3 of my starting weight…..

Did you ever become sick with any colds, or flu while on treatment? (if so did it seem to take longer to get over them?) Or do you find this to be a normal problem with people who have cirrhosis?

No, I was a hermit

 Did you ever have any lung problems while on treatment, we seem to hear so much about breathing problems.

Yes, lungs full of white glue I could not expel; cleared in a matter of days after finishing

We have all experienced certain side effects from treatment. Many of us are afflicted with a rash from Ribavarin, or we are not able to eat , sleep or even concentrate at times. Did you have any problems just mentioned, and did you find any ways to deal with them ?

All the above. I had skin problems for years before. Claritin helped with the rash and breathing; did not get it until 9mo in treatment

Did your fatigue improve after treatment at all ? Or any symptoms relating to cirrhosis?

No , not much has changed except for the skin problems……

Did you know the grade of cirrhosis before you started treatment?

My biopsy was done 12-24-97 using the laparoscopic method due to possible bleeding problems, and 5 plugs were taken. It was not staged but I had fibrosis, necrosis, nodes and infiltrated throughout the liver. From what I read and taking into account the size of the portal vein and varices, edema it is and was a 2 1/2 to 3.  My Doc thinks I don't need to know most of the time but he says since I have cirrhosis he wants to do and has tested AFP and liver panels every 6mo and a dual phase spiral ct scan every 9mo.

How are your liver function tests now ? Have they approved, or do they remain about the same ?

Always were normal and remain so except for bilirubin which is and was always high

Bilirubin

is a yellow pigment formed as a breakdown product of red blood cell hemoglobin. The spleen, which destroys old red cells, releases "unconjugated" bilirubin into the blood, where it circulates in the blood bound to albumin . The liver efficiently takes up bilirubin and chemically modifies it to "conjugated," or water-solube, bilirubin that can be excreted into bile. Increased production or decreased clearance of bilirubin results in jaundice, a yellow pigmentation of the skin and eyes from bilirubin accumulation.

What medical problems do you still find yourself with after treatment?

I can't do much of anything that takes more than 15min and if I do it takes days or more to recover. many naps daily dry eyes mouth also

How did your Doctors respond when you not only cleared the virus, but remained cleared?

Now they knew I would.... but admit I'm a rare bird.

What advice would you give any of us with cirrhosis, or who might be contemplating treatment?

You will never know unless you try and even if the treatment fails you , you may buy more time; if you already have cirrhosis what do you have to lose……..

I agree with you Hermit, give it all you have !

We all wonder how you deal daily with having cirrhosis, could you enlighten us with any insight on what a typical day might be like for you?

I get out of bed ever day and do what I can , I have a garden and it helps keep me sane….

We know when we are afflicted with a chronic disease it changes our lives forever. Do you think it has changed your prospective on life, if so, for better or worse?

Better; have stopped and smelled the roses….

OCTOBER 20 2002 Update

Here is an update ! Hermit has just received news and after three years he still free of the virus. We all want to tell you congratulations, and we are all so very happy for you.

Once again Hermit, we can’t thank you enough for sharing all your wisdom and courage with us. There are so many people with HCV and cirrhosis who will more then appreciate your story.

You might remember when you were new to our disease and searching for information. Or even searching for others, who might have the same medical scenario as yourself.

This story might become instrumental in their search for personal achievements to over come our disease. I am sure if they are left with one thing, it is the assurance others have fought our battle and won. Not to mention the knowledge of what it might take to do it.  It's people like yourself who take the time to educate us that make the real difference. I know this took time out of your day to answer these questions. I know I am not the only one thanking you right now. So from all of us, thank you so much for being a part of our Web Site.

Here is a lovely picture of Hermits garden. He is so right, stop and smell the roses !!

You might want to read  our  Articles and Research on cirrhosis.

Also information on  Physical symptoms of liver disease, Varices,  Itching, Encephalopathy, Ascites .

We know it’s a very personal choice rather to treat our disease or to wait. Many times it can consume us to the point of pure madness.

It certainly takes a strong individual to decide to wait for better treatments.

It could even be more difficult to make such a choice against our Doctors advice. We at least have the luxury in today’s world to seek out another opinion.

While reading Sue’s story you may wonder how she can safely make such a decision. One thing Sue is very knowledgeable about is the fact our disease progresses very slowly.

She is very careful about her diet, and her lifestyle. We know drinking alcohol surely would put anyone with Hepatitis C at risk.

What we also know is there are different types of fibrosers, such as "rapid fibrosers," "intermediate fibrosers,"
and "slow fibrosers" please see the article

We might wonder then, what if we are a slow fibroser ? Could we repeat our biopsies every three years? Depending on what the results were from our first biopsy? Could we discuss this with our Doctors and see if this is even an option? Or are we even capable of making these decisions?

We also must remember for most of us HCV is not life-threatening.

Please see the article

(Hepatitis C Is Not Life-Threatening for Most Infected People in US).

We do know treating HCV can reverse fibrosis, which then in turn will prevent cirrhosis please see

(The Role of Antiviral Therapy in the Natural History of Hepatitis C Fibrosis).

Still are we really well informed? Do we have the time to DARE wait?

These are questions only your Doctors can answer, they along with you will make the final determinations. It is an individual decision, hopeful one that is based on research, and a clear understanding of our disease.

The biggest question of all still remains in many of our minds, do we rush to treatment?

After reading Sues interview along with our articles, we hope you pause and question if treatment is the right choice for you. Or do you really have time to wait?

In May of 1999 I went to see a doctor because I was having "female" problems. My family doctor ran blood tests and did a physical exam. He referred me to a gynecologist. So off I went. After another exam this doctor decided that I needed to have a hysterectomy. I had large fibroid cysts that were causing a lot of discomfort.

For the hysterectomy I had to donate my own blood through the Red Cross just in case it was needed during the surgery. A few days after, I received a letter saying that I have hepatitis c, please do not donate blood again and that I should contact my doctor. I had no idea what hepatitis c was. I had worked in the medical community before and was very familiar with hep a and hep b but what the heck was hep c?! I immediately called my gynecologist's office and told them about the letter. Their response was "oh, yes, we received that information but your blood is still safe for you to use." Period. I hung up the phone and pulled out my Merck Manual to look up hepatitis c. It wasn't in there. All I could find was info on something called hepatitis non-a non-b. It sounded close so I kept reading. I read that anthesia could cause immediate liver failure so I called up the hospital and doctor's office and cancelled my surgery. Mind you, this is all in one afternoon. The more I read, the more frightened I became. I called my mother who was on vacation at the time with her sister (who happens to be a nurse) and cried and cried and cried. I wasn't ready to die yet, I was afraid, I was confused, I felt so alone but I did not want to die yet!

I received several calls from my gynecologist that evening. He finally convinced me to meet him the next morning to talk about this. He explained that little was known about hepatitis c. He reassured me that I wasn't going to die in the immediate future from hepatitis and that I really needed to have this hysterectomy. He personally arranged for my liver biopsy to be performed while he was doing the hysterectomy. I had the operation and biopsy the very next day. Of course, I met with the anthetisit first and had her explain to me in detail that what they use today in surgery is not processed by your liver and that there was no chance of liver failure during this surgery.

After my surgery I spent every free moment researching hepatitis c. I talked to my aunt the nurse, I read every book, pamphlet, news article that I could get my hands on. My husband asked around. (By the way, he was tested and is negative) Everything I found sounded like a death sentence.

I went to work one day and got online. I found a whole new world of information and, more importantly, people to talk to who had this, too! I found a chat room and received so much information and support and encouragement. I was truly lost until that point. I learned from them that people live a very, very long time with hepatitis. I learned what to ask my doctor. I learned where to go to find out more information. And I learned that the current medical treatment was making people very, very sick.

I had a follow-up visit with my gynecologist before I was able to see the local hep doctor (and I thank God each and every day for this). My gynecologist had received my biopsy report because he was the attending physician during my surgery. He read the report to me word for word and then explained what it meant. I had mild fibrosis that they were grading as stage 2. My bile portals were involved. No cirrhosis. The doctor told me that they even physically looked at my liver during the surgery and it looked good still. He told me that I easily had 1o years before I needed to seriously consider treatment. He knew what was available and that it was rough and odds of a sustained response were still very low. I left his office armed with more knowledge and less fear.

Then off to the gastro doctor. I had to sit and wait quite awhile before I was called in. I pictured all of the people that I had talked to in chat sitting there with me (even though I had no idea what they really looked like). It gave me that little extra support that I needed to get through that moment. I had my list of questions to ask. Then it was finally my turn..........
This hurried man comes briskly into the room. He tells me to lay down and presses on my upper right side. I winced. He said "oh, does that hurt?" I replied that it did, I had just had a hysterectomy 2 weeks ago. This was news to him. That made me nervous. Then he said that we should schedule a biopsy. I informed him that one had already been done. He got upset. He got upset with me! I had no idea why he didn't have the reports. So we schedule for the following week so he can get the reports. At this point I am dumbfounded. This is the person that I am suppose to trust with my health and life? I was brought up that doctors are not to be questioned. They are superior, they always know what is best. So I went back the next week.
I sit and wait for the busy doctor. Finally he rushes in and says that he will get me all set up for treatment. He can "cure" me. Honest to goodness, those were his words. Right then and there I knew there was a problem here. I had learned much to much to know that there wasn't anything even close to a cure for hepatitis c. The most I could hope for was the virus to become undetectable for a lengthy period of time. So I told the doctor what I had learned. He just looked at me for a moment. So then I proceeded to ask him my list of questions: what was my genotype? " 1b" what was my viral load? " 100,000 " what will the side effects be from treatment? " Go talk to the nurse who handles this." I then told him what my gynecologist told me. That I had time to wait. That was the final straw for my poor harried, busy, rushed doctor. He blew his top! He said that I had NO time to wait. I had better get things arranged for treatment with his nurse. And that was the end of our session. I dutifully plodded down the hall to the nurse that handled all the hepatitis c cases in the office. She told me that they were getting in dozens of new cases each week. She also remarked how very low my viral load is compared to what she usually sees. I asked her all my questions. She did have more info for me but glossed over the side effects of treatment. She did explain that she gave an instruction class on how to inject the medicine and that my first shot would be done in the office so that they could see how I would react. I set up the next appointment and went home. I made an appointment to see my original family doctor. I met with him and told him what was going on. I explained that I didn't think I could get along with the hep doctor and did not think that treatment was the answer for me at that time. He tells me without treatment I will die. So I leave there in tears.
Another death sentence. I called my sweet mother. Her response was " honey, we all die." Slap in the face reality. I woke up at that moment. Yes, everyone dies, there is no choice. The choice is in living and I am the one that should make that choice and any decisions that involve what my life will be like.

I knew that interferon did work in a few cases. I also knew that the year of hell that most people go through was more than I wanted to pay at this point. I know that interferon can cause permanent damage to your thyroid, your sight, your hearing, severe depression, and they are not sure what else in the long term. I knew more than anything else though that I did not have to just blindly trust a person because they are a doctor and think that I should do something because that is what they were taught you do in this situation.

I never went back to the hep doctor. I wrote his nurse explaining to her that at this time I am choosing not to pursue treatment and thanked her for her kindness and help. I never heard from them again.

I spent the next several months researching alternative treatment. I read about diets/foods, supplemental vitamins, herbs, minerals, water. I looked into spiritual issues, psychological view points, and benefits of physical activity. I read about visualization and affirmations. I read about death and dying. I read everything I could find on hepatitis c. I came up with my own plan. Following it is another story :)

Today I feel good. I work full time. Have a small farm with chickens and two dogs. I get tired but what 41 year old woman doesn't after a full day at work, 2 loads of laundry, chasing the chickens, cooking supper and doing dishes? :)

It hasn't been easy. Sometimes I still feel the fear trying to creep back in. I do not tell everyone that I have hepatitis c. There is still a lot of ignorance and misconceptions. I live my life each day grateful to God that I have been so blessed.

I know that I have made the right decision for me - today. Who knows what tomorrow will hold. I pray that the real "cure" or a treatment that works without half killing you is found. I love my friends that feel they have to try everything available including interferon. I understand. I also understand that treatment with interferon isn't the only answer. :)
 

Sue thank you so much for taking time to answer all our questions. There are so many people who also have made the choice to wait for better treatments.

My family was extremely supportive.  My husband had heard from a co-worker how difficult treatment was, my aunt, the nurse, suggested that I use interferon only as a last resort if I really had to, the rest of my family just made sure that I was comfortable with my decision and knew that it was an informed decision.
 

I am not living in fear anymore.  I still feel that not treating with the current medical treatment is the right decision for me.  I hear of more and more clearing the virus while on treatment but I also continue to hear about those that are permanently affected negatively by treatment and have no response.  When I hear of someone with my genotype becoming undetectable, sure, it makes me pause but I know in my heart that I have done what is best for me.

Do you feel any symptoms from HCV other then fatigue ?

It's hard to say.  I have a very active life.  It is easy to blame things on HCV instead of the fact that I am getting older.  I do experience some hip pain, muscles and joint soreness, headaches, and a few other minor aches.  It is hard to say if this is from HCV or something else.  Fatigue is my only real symptom.
 

I have been told numerous times by people that they wished they had waited.  So many people think that they do not have a choice.  Their doctor says that they need treatment so they do it.  It is normal in our society to follow our doctors and doctors follow what is currently available and what they were taught to use.  So, yes, my decision has been reaffirmed by many factors and that is one of them.
 

When you hear a friend has had a sustained response to treatment do you ever think of going on treatment? Or do you know you have made the right choice?

It has crossed my mind to reconsider treatment once.  A friend is currently on treatment, has my same genotype and is currently undetectable.  Her side effects from treatment have been very minimal.  She made me wonder for a minute.  Then I talked to the person that went through a year of treatment, was undetectable for a couple years and now the virus is back in full force.  That person wondered why they put themselves through all that in the first place.  Until more progress is made in finding a treatment that really works and isn't so harmful I am staying with my choice of not treating with drugs.
 

Unfortunately, I lost my health insurance soon after my diagnosis.  I do not see a specialist at this time.  My regular family doctor will run the blood tests that I request/require.  I have only been once in the last year.  I am due to go again soon.
 

Absolutely!  When I hear of a new trial being started I am all ears.  I try to keep informed of the latest studies and reports regarding hepatitis c and treatment.
 

I have noticed that there seems to be a better success rate for peg.  But I have also noticed that people still are experiencing serious side effects.

Fibrosis is livable.  Permanent damage from treatment is a reality.  I have heard of too much thyroid damage and kidney damage and permanent depression to make reversing mild fibrosis worth such risks.

I will have another biopsy probably in late 2003 or early 2004.  It will have been 5 years since my first biopsy and will give a good indication how quickly damage is progressing.  If the fibrosis has advanced and there are still no new treatments available that are not interferon based I will still choice not to do treatment.  
 

When we read over the natural history of HCV, only 20 percent or so progress to cirrhosis. Many of those drank, or acquired HCV through blood transfusions, which you know in many cases can cause our disease to progress at a much faster rate. Do you think many of us confuse those statistics with ourselves? And this is when we begin to panic, and rush to a decision towards treatment?

Absolutely.  It is normal for us to think the worst.  It is so scary at first.  The first reaction most people have is get this virus out of me now.  I believe that if more people really researched HCV and the current treatment available a lot fewer people would be doing treatment right now.

My belief is that a surgeon is trained to operate so that is what they want to do, cut it out.  A psychiatrist is trained to do therapy and that is what they do, analysis.  The medical community is trained to give drugs to treat so that is what they want to do.  The doctors are just doing what they are taught.   I do believe that treatment is given to people that could afford to wait until a more friendly treatment is available.

I changed my diet after extensive research.  I first went totally vegetarian but now I do eat some fish and venison.  I include fresh fruits and vegetables in my diet daily and other foods that have been found to be wonderful for the liver and kidneys.  I took up yoga for my muscles and joints.  I take Milk Thistle and a couple vitamin supplements daily.  More than anything I keep my attitude healthy and happy.

Yes.  Lately, more and more doctors are coming around to alternative treatments.  My gynecologist knew all about the herbs that I was taking and encouraged me to keep doing so.  I have also heard a few people that are currently on treatment that are taking Milk Thistle with their doctors permission.  This is progress.

For a long time, I felt very alone in my decision.  I did get a lot of pressure and questions from people that had done treatment or were currently on treatment at first.  My decision to not treat was such a well-informed, researched decision that most understand now and do not try to push.  I do still get excited though when I meet someone that has also decided not to treat.  

I had to laugh when I read that question.  Passive is not a word that I nor anyone that knows me would use to describe me.  I have very aggressively pursued knowledge and understanding of HCV and treatment. I made lists, long lists of the pros and cons of both sides of doing treatment and not doing treatment.  The longest list won.  I am not living in denial.  I know that this virus will not just disappear.  I also know that I can live a good full life with this virus until a really good treatment is found.
 

I printed out Bonnies entire section from the Web site!  It is excellent information.  I read books by Dr. Weil that I find very helpful.  Dr. Melissa Palmers Guide to Hepatitis and Liver Disease is an excellent source of information to help understand this virus and liver disease.  I have been to just about every website available on alternative health care.  Just have to be careful and recheck all information that you find.  

Yes and no.  I don't always think I have HCV.  It is part of my life though.  I drink water all day long now because I have HCV.  I am quitting smoking because I have HCV.  I make sure I rest now because I have HCV.  So this is part of my every day life but it isn't a negative or downer for me.
 

Do you have any fears about HCV, if so, how have your learned to calm them?

Yes, I have fears.  I know that HCV doesn't just affect your liver.  I worry about my kidneys.  I make sure that I am doing what I think is proper for me as far as diet and supplements.  If I find myself thinking thoughts that scare me or make me anxious about my virus I practice deep breathing and try to figure out is causing this moment of anxiety and address that.

I started living when I finally came to terms with my diagnosis.  I recognize what is truly important in my life now.  Only positive things have come from me knowing that I have HCV.  I have met wonderful people that I would not have known otherwise.  I am able to laugh, love and forgive much more easily today than before I was diagnosed.  I took a risk and bought my dream house 2 months after I was diagnosed, which I would not have even considered doing before I was diagnosed.  It does sound odd but my life is fuller and better now that I know I have HCV.