When I emailed Charlie he wrote right back ! I don’t think he had any idea what he might be in for. Once he said he would do the interview, I emailed him a huge list of questions. I didn’t think I would hear back from him for a few days. He not only answered all my questions in the same day, he told me I could call him. He said the phone call was on him. He could of not been kinder, he made this interview possible.

I know some of the questions must have been hard for him to answer. But he never batted an eye, he just typed his heart out.

He is still doing interferon (Peg Intron) so I know he must be feeling those side effects.   His interview will enlighten all that read it.

While I was going over it, I just could not believe what he has been through. But what I noticed most was how he treated it like no big deal. He just seemed to dig in his heals and fight through all the problems that arose. He has a zest for life, one I find hard to match. He has a wonderful wife who stood right by his side.

If anything after you read this interview you will walk away feeling a new appreciation for each new waking day.

Thank you Charlie for taking the time to help us do this interview. You have made the wait so much easier for our friends.  We all appreciate your help so very much. Thank you for being our mentor and a part of Janis and Friends.

I called Charlie this morning and learned the importance of preventive care before and after a Transplant. He explained to me how you must keep yourself in tip top shape. I never thought dental care was a part of this. He said you should make sure you see a dentist on a regular basis. You wouldn't want any infections to occur before or after you have been transplanted. What happens in that infections can cause a rejection. Also he informed me how important it is during your evaluation that the transplant team is assured you are taking care of yourself. They go by some pretty strict guidelines ,as they should. After all, if you are using a liver someone else could use ,you better be ready to take care of it. 

What I also found astounding was his relationship with his doctors. He once received a call about a possible liver , but his doctors told him it was not the most suitable liver  for him. They let him make the choice  rather to use it or not. He opted  not to , and ended up receiving a liver from a much younger healthier donor. 

 I also asked him about physical symptoms of liver failure. I thought he must of had some pretty bad bleeds to be on the transplant list. But he said he didn't,  what he did have was a problem with itching, and he did have a build up of  fluid, but never needed to be tapped. What was apparent was his platelets, they were a large indicator he needed a new liver, and fast. Not everyone has the classic symptoms of liver failure. For Charlie,  his blood work confirmed  he was in serious trouble.

We also chatted a little bit about Vets. He told me how in the service they gave the soldiers these air-gun injections. He said the blood was running down everyone's arms, but they used the same gun on all of them. I find it a crime that most of the public and the government contribute  IV use for  so  many cases of HCV in the military.

Charlie is an incredible man , he lives each day to the fullest. He knows HCV is a very serious disease, just not for him but for all of us. He feels treatment is necessary to abate this disease. I think both us have a hard time how lightly treatment is taken. Many people think, " Well maybe I will treat, or maybe not " I feel they just might not be informed enough to know its not a choice that should be taken lightly. For Charlie it bought him ten years, only because his doctor was up on things back in 1990.  Only if we could all have hindsight into how fast we might progress,  but we don't.  Educating ourselves is the only way we can make the right decision  about treatment. In Charlie's case he had the right doctors to care for him.  The only reason is because he searched them out. He took control of his disease, and in the end he is not only winning the battle, but he is winning the war.

 Here is Charlie’s Story followed by his interview.

Well, I'm 52, and retired   USARMY......and believe I contracted hepatitis C on active duty....I had a whole blood transfusion in 1969. They first discovered infection in 1990. I then did 6 months of the old interferon alpha 2b, 3 times a week.   I was in partial remission which got me through for 10 more years until my transplant on 7/3/ 01, at Jackson Memorial in Miami. I have been married for 29 years . I am still doing low dose peg to keep my number's good.....(I started the same time as Patty, and I'm still doing it). One year next month...... I still have good days and bad days , however, the good days out number the bad ones now. Life is great and I would do it again when this one fails if I am that fortunate.

In 1969 you had a blood transfusion, but your HCV was not discovered until 1990. When did you start to feel symptoms of HCV ?

I had no symptoms of HCV in 1990. I was donating blood to the Red Cross in late 1989.  The Red Cross just started to test for non a non b hepatitis, which in reality is Hepatitis C. My test came back with elevated LFT's. They told me that I could not donate blood anymore and should see my current doctor.. I went to the Navy Hospital in Orlando.  A Gastro Doc named Commander Epstein, now practicing as a civilian in Syracuse, NY, did a series of tests to confirm Hepatitis C and put me on 6 months of alpha 2b, 3 shots per week. He was a very good Doc and anyone in the Syracuse area certainly have a good one in him. 

Were your enzyme’s elevated at that time you were diagnosed ?

Yes , very elevated......above 300 on each of the LFT's

Did they give you a biopsy at that time ? If so what were the results ?

Yes, HepC put me in the hospital and the Navy did the biopsy.  Had to stay in for two days. Now when I get a biopsy, 12 years later, it’s in and out in three hours, although they have to give me platelets first now...... I had early cirrhosis.

By doing interferon in 1990 do you feel it slowed things down and bought you some time

Definitely bought me the 11 years which were good years, none the less.. During that treatment,

 I used to go to the gym and work out every day at the Base.

When you went on treatment in 1990 did you also go on  Ribavirin ?

There was no Ribavirin in 1990. Just mono- therapy

Why did they only keep you on treatment for six months and not a year?

Six months was the protocol they were using, and quite frankly, you have to remember that it was a Military hospital and they never have enough money in the budget...Especially for retirees.

During this time did they ever bring up the fact you might need a transplant ?

Yes, at the end of the treatment, he gave me a referral to Univ. of Florida Transplant Center in Gainesville. They gave me the once over in a very lengthy checkup. Since I was not in too bad of shape after the treatment, and my numbers were down in the good range, they just scheduled me for a follow up in two years. I wasn't sick enough yet and I don't think they wanted to kill me before my time. After all, 1990 was very early in the beginning years for successful transplant. They never mentioned the option of transplant at that time....I was only 40.....Scary!!!!

Did you have any other health problems other then liver disease that could of affected your transplant ?

No, I was in great shape......Still hitting the gym every day then and working out with active duty troops. I really was in my prime.

When you went for your pre-evaluation how long did take, and what kinds of tests were you given

Well, long story but I'll shorten it. I had been going to Gainesville through the 90's as if that was to be my transplant hospital . Got to know all the docs and staff.  By 2000, my numbers starting going up again. In the middle of 2000, I went to Gainesville for a three day evaluation ..All the tests: heart, lungs, 28 vials of blood, psycho, pharmacist, and dental.......etc.....Well, the transplant Doc said I was a 'go' and they would be able to list me as a 3b or 4. He even said that I would not have to wait very long because of my blood type. We were on our last day and were in the financial office.  The accountant said that our insurance would not pay for the transplant at Shands (Gainesville) since my insurance company had a contract with Jackson Memorial in Miami.....Nice of them to tell me at that time, Huh!! Anyway it was back home to Melbourne and my local Gastro Doc had to get all my paperwork together, again, and submit everything to Jackson and schedule me for an evaluation. All this time I am getting sicker. Fortunately my Gastro Doc was a personal friend with my transplant Hepatologist in Miami.  They got me down there for another evaluation in less than three weeks after Gainesville.....I passed with flying colors and they listed me as 2b,

How long did you have to wait before you knew you were a candidate for a liver transplant ?

I am AB pos, so in less than 34 days from the completion of evaluation.

What do they consider a match ? Would it be the same blood type or body type ?

My blood type can accept any organ and be successful. I was fortunate that I got a perfect match, another AB pos.  Also, organ size is very important, actually I think I got an extra large liver. I'm very fortunate though, it works great.

Do you remember how long you waited once they put you on the TP list ?

Waited just 33 days.

They called at 1:00pm  in the afternoon and put us on standby.  We already had our bags packed.. Put the dogs in the kennel and made a couple of calls and waited. At 4:15 they called back and said it was a 'go'. We left the house and arrived at the hospital at 8:15 pm. They took me right up to the transplant ward and the gave me suppositories and something to drink to clean me completely out. Then they shaved me from head to toe, not a hair left on my body. Then I got a sedative. I woke up at 6:15 am and they had come for me. My wife was at my side through everything. They wheeled me to the elevator and down to the transplant operating rooms. My wife kissed me good-by, and in I went. Thirteen hours later I was in the intensive care recovery room.  Although I lost count of time completely////// I just know when I woke up with IV's and tubes coming out of practically every limb and both sides of my neck....with a breathing tube that is the most frightening thing of all. When I finally looked up I saw my wife standing there with a Priest, I thought for sure it was the end. Then the pain hit me. The nurse about wore out the hinges to the morphine cabinet door keeping me comfortable for the next 2 days.

Where there any complications during the operation?

I think there was a small one (I have the transcript of my complete surgery....everything that was said)......They had to do an Inferenal Graft and snake it behind my stomach because they had a problem reinfusing my new liver with blood......No big deal though....I'm fine.......Funny reading about it though!!!!

Did any infections occur within the first couple weeks ?

I had no infections at all......even now after over 14 months. I still wear a mask now if I go into a hospital or to a lab to have blood drawn, anywhere where there are going to be sick people. I don't push my luck, keep liquid hand cleaner in my pocket all the time and if anyone starts coughing near me when we are out I run like hell to get away. Never know it could be TB or something else nasty.

How long was your hospital stay ?

In the hospital for 6 days, and then into a condo right across the street for the next two months.  Had to be close just in case and was getting blood work every day or so and seeing the Docs every couple a days. Also, they stretch the tests and blood work out as time goes by and your numbers fall into the right column. I also had to do six treatments over the next three months of an IV Infusion with a drug called Cytogam. It is the protocol at Jackson and prevents a life-threatening disease called CytoMeglovirus. In the early days of transplant this thing killed many people.

I know rejection is one biggest concerns for patients and doctors, did you have any problem with rejection?

I had a rejection at ten months post transplant and was back in the hospital in Miami for 8 days. They put me back on a heavy dose of steroids to counteract the rejection. The steroids are a real tough drug to deal with at heavy doses but they do work.. I used to see bugs on  the ceiling and smoke coming out of the walls .HAHA  Not funny at the time, though. Anyway, I survived and even though I did nothing to cause the rejection ,I really felt guilty about it. Rejection happens to practically all transplant patients at least once in the first few months or within one year. Basically, they catch it early enough and they just adjust your meds.....no problem. In my case, since it was taking my local lab almost ten days to get my test results to Miami ,by the time they saw what was happening it was too late to correct it from home. .Now, I just get my blood drawn locally and the lab Fed-X 's it overnight to my lab in Miami.. They get the results the next day and no more problems......I hope!!! I have a standing order at my local lab for all my tests and can go in and have a complete set done anytime I feel it necessary to have Miami look at them. Its a good security blanket feeling. Also, all my Docs and myself get copies of these blood tests every time I have them done. Makes things easy and a lot less chance of one hand not knowing what the other is doing, so to speak.

(Charlie told me he will never understand why people can't  get copies of all their blood work, he feels their is no excuse for it. After all as he said....if all the insurance companies can get copies of your blood work, then anyone with a life threating disease should be able to )  it should never be a problem , demand all copies !

Is rejection always a concern, even now ?

Rejection is always a concern ,but you just have to live and not dwell on it.....I know very well what the signs are and I am very aware of what my own body tells me.

How many medications do you take each day to ward off rejection ?

I'm on my basic maintenance dose now....2 mg of Prograf.....1 mg of Rapamune....  Bactrum.....and Pepsid if I need it. Don't forget I still do peg every week......for that I can have up to 2000 mg of Tylenol a day if I need it.....Usually one 325mg  before the shot and bed and maybe a couple during the week is all I use anyway.

Will you have to take them for the rest of your life?

My Doc tells me that a day may come soon when I may not have to take any more immunosuppressant,,,,,but it isn't there for me yet. That’s what the problem is with the HepC.....my maintenance drugs suppress my immune system to the point that my body cannot assist the peg in doing its proper job....It keeps the numbers in check though.

Side effects from everything.....You find it impossible to tell which drug is doing what to you. It is not really bad now except for the peg a day or so every week. I have lost some vision and have to use hearing aids now if I really want to hear properly. I don't know for sure what caused these sides, but I have my suspicion it is the Peg and Riba.

The survival rate after liver transplant overall is approximately 80% at one year, and 70% at five years. The odds for hepatitis C are approximately the same as for the average liver transplant for another reason. The longest reported survival rate was 25 years.

How do you feel about the reported survival rates on liver transplants, its been 12 years for you but they say it is 5 to 7 years why is that ?

Well Tina , Its only been 14 months for me since my transplant, however I just don't dwell on the stats. I live my life to the fullest every day and face each new week as it comes. Yes...I would be most grateful to get 5-7 years from this liver but that is just not in my hands. If you let the numbers get to you than you'll find that your life will not be very pleasant at all, and "QUALITY OF LIFE" for me does not include worrying 24 hours a day.

I wish it was 12 years my friend. You brought up a very important point about survival rates and hospitals when we talked. You mentioned that at the VA the survival rate was much lower, something like 55 percent in the first year. Those numbers can change with each hospital. One of your first questions you should ask your transplant team is  What are the organ and patient survival rates for my type of transplant at this hospital?

Did the thought of not being transplanted ever enter your mind ?

Certainly in the beginning, during my first evaluation I didn't think I could handle it. Then my local gastro described to me how I would probably die if I didn't get it and it did not sound very pleasant to say the least.....Also my Wife was not ready to let me go so I was out-voted I think

After your transplant how often did you need to see your doctors ?

Now, at 14 months post transplant , I see my TX docs every 4 months , blood work every month  local gastro every 2 months , dentist every 6 months , dermatologist every 6 months.....I'm trying to get on vacation now that I have some time of my own. Also I see my VA Doc every three months for my meds.......Enough Docs HUH????

They say a liver transplant cost over 300.000.00 dollars being a Vet were all costs covered ?

The VA didn't have a thing to do with my transplant.  I went private all the way with my Wife's insurance. I never received a complete breakdown of all the costs, however I believe your figure of $300K probably is in the ballpark if all the meds  and other expenses are included . Might be closer to $250K....

You were transplanted at Jackson Memorial in Miami is that a hospital for vets ?

No, Jackson is a public hospital , however there is a VA hospital two blocks away. The  VA had nothing to do with my transplant. Sometime, if you remind me, I'll tell you the story of my evaluation at the VA. I just can't deal with THAT story right now.

All I can say is that Jackson Memorial Hospital, and the transplant Docs and Staff, are  undoubtedly one of the best in the world.....My wife and I have a great rapport with them,  and they treat us like a 'partner' and family in my healthcare. My Hepatologist , Dr Guy Neff is one of the leading experts in HepC and Liver transplants in the world. He is a really good friend to me, more that one of my Doctors. No chip on his shoulder at all.   

(If anyone is from Florida it seems Charlie's Doctor might be a good choice !)

I was transplanted on 7/3/01 and I started treatment in October 2001 because the HepC came back with a vengeance. I started the same time as Patty.

Both my Hepatologist in Miami and my local Gastro Doc say that I will be doing TX for the foreseeable future until the next best thing comes along .They say they have to protect my new liver at all costs. Makes sense to me.

Are you on any type of diet now, or what has changed in your day to day life? Any preventive health measures?

No special diet although I eat very little red meat now.  I eat chicken and fish...but no shellfish of any kind.  From the period right after the transplant for about 4 months , some of the medications turn you into a Diabetic. I actually had to do insulin injections several times a day for many weeks. With the peg shots,  the insulin, then add Procrit for the low RBC and then Neupogen for the low WBC I was quickly turning into a pin-cushion. Fortunately, I'm really OK now, and pretty much I can eat whatever I want .No more Diabetes. I believe the constant exercise  has a strong bearing on my health. Just have to push yourself if you want the QUALITY of life. My transplant Docs want me to be a little heavy just in case I would have to go back in for another rejection, they want some meat on my bones so I could withstand the trauma . I'm 5"10' and 203 and I walk and jog practically every morning for 3 miles....I'm outside every morning by 5:45 and get it in before the sun comes up because I have to avoid the sun as much as possible. It does not agree with some of my medications and also I have to be careful of skin cancer because of my immune-system!

Will they do another  biopsy  ? Or do they go by your liver function tests ?

Because my platelets are running around 50-60 now because of the peg,,,,..They will only do a biopsy on me if they suspect rejection and then they would give me several units of platelets in a IV drip first to improve my clotting factor....They don't want me bleeding to death from a biopsy.

My only support group has been Delphi......And my family....

My wife has been the greatest.  I never would have made it without her love and support.

Tell us about your good and bad days or how your life has changed after being transplanted

The good days eventually out number the bad as the weeks and months go by...Like I said before,  just live and enjoy every day. When I have 5 or more good days a week now I consider it a great week.....Never have seven but sometimes six. The peg just doesn't let go.

We know there are people out there getting ready to go to their pre-evaluations or even waiting for their new liver. What advice would you give them ?

Tough question ....All I can do is relate to my own situation and just say don't give up. Life is very precious and even with all that I, and every other transplant patient goes through, most of us would do it all over again just to live another day.

You may wish to also see our Transplants section of our web site. Also our Informative Links  have some great sources on Liver Transplants.