Jul 12, 2016
I have been asked to post my own story with hepatitis and liver disease. I will try to make this brief as there have been so many ups and downs over the last number of years and tons of experiences as does everyone dealing with with HCV and liver disease.
I was infected as best as I can figure to HCV & HBC about 40 years ago. In May 2007 found out I had a low platelet count while preparing for an unrelated minor surgery. This was the first time ever that my blood levels were abnormal. Meaning my platelet count was below 100,000. Then I had a biopsy performed which confirmed that I had cirrhosis. Throw in portal hypertension and mild varices while you’re at it. ;-)
I then tried Hep C treatment in May of 2008 with peg-IFN & RBV but was a null-responder and my platelet count dropped to under 20,000. So I stopped. This is when I first started working with both my current Gastro and my great hepatologist at the local Liver Transplant Center. I still was compensated and felt fine.
In the Summer of 2009 I developed a very rare cancer in my foot. No one had ever seen it before. My doctor had only read about the few hundred cases ever recorded. But luckily I lucked out and had a great Orthopedic cancer surgeon who cut all the cancer out of the bottom of my foot. My foot was like new just 6 months post surgery and to this day….BUT the anesthesia from the surgery had caused my cirrhosis to decompensate. I had really terrible ascites, couldn't breathe or eat because there was no more room in my abdomen. Feet and lower legs bloated and did even look like a part of me. Then I started have hepatic encephalopathy. One day I was at the hospital as usual and was lost. I didn't know where I was or why. Really scary. Since decompensating I have been taking all the usual drugs for the complications of cirrhosis. Diuretics, lactulose, Xifaxan, Nadolol, etc. Once the right dosages got dialed in I felt so much better.
I became unable to work any longer, as just getting to work felt like climbing Mt. Everest. Horrible fatigue, couldn't remember what I was doing, if I had done something or not, could sleep as my body clock was off from the HE. My MELD score at the time was only 18-19 so there was no way I was going to get a transplant anytime soon. I was kinda hoping my liver would fail so I could get a transplant and start feeling better and stop being disabled. Well in two years my wish came true in a way that I was unprepared for.
In May of 2011 I had an MRI as the last test I need to join a special study to try the new protease inhibitors even though I was decompensated. Well on June 1st I received a phone message from my hepatologist. She never calls me we always communicate via email. I knew something was wrong but was afraid to guess what it could be. We connect up later that day. After saying "Hi, what has you calling me?" She said I had liver cancer after finding a 1.4 cm tumor in my left lobe. Needless to say I was in shock. I made it through the call being logical and asking about what this means and what is next. After I hung up I starting crying and felt like nothing mattered any more. Pay my bills? Why? I’ll be dead soon anyway. So I was in shock on and off for a month or two before picking myself back up and saying I will carry on as best I can no matter what happens.
I had to wait 6 months for my tumor to grow to 2.0 cm so I could be my MELD exception points. That was a very scary time. Who else waits for their tumor to grow??? !It felt crazy but I know that was my only chance, as I would never get a transplant here in Northern California where you have to have a MELD score of at least 34 to even hope to get a transplant. My doctor told me if I didn't wait for the tumor to grow chances would be very high that the cancer would kill me before ever getting close to a transplant. Sobering, but I new she was right.
So on December 12, 2011 after my tumor had grown to 2.4 cm I had a TACE-DEB (Doxorubicin) procedure. A month later an MRI showed the tumor to be completely obliterated. 100% gone! I was really to celebrate...just one thing...they also found another tumor in my right lobe. Can't a guy get a break? I guess not. So they setup another $64k TACE-DEB procedure for Feb 22. I thought I knew what to expect since I had already done one treatment. Wrong. The first procedure was easy I was awake the whole time and watched it all on the monitors along with the doctors as they inserted the various catheters and moved right into my liver and next to the ugly tumor and its feeding arteries. After the procedure I stayed up all night in my hospital bed and watched music videos on my laptop and drank ice cold cranberry juice and ate cherry popsicles. And of course all the while I am floating on a cloud of morphine.
(I thought this was gonna be brief!) Ok. Ok here we go...
So for TACE-DEB #2 I walk in the OR and see it is all the same team that worked on my first tumor. I thanked them for killing my first tumor and said "let do it again”. Then the surgeon asked if he could talk to me. "Sure" I said. He said they may not be able to get to this tumor because of an abnormality I have in the structure of my arteries. I told him to do your best, whatever you have to do. Just don't kill me, please. He laughed. So there I was getting preped and before they even cut my femoral artery. Wham, I am out like a light.
Later on I do remember someone coming close to my ear and saying they got the tumor though. When I woke up I was in more pain then I had ever experienced. I thought kidney stones could be bad. This was about 4x as bad. I was hoping to pass out. I couldn’t stand it. Usually I am mild mannered but I was begging my nurse to give me something, anything! She gave me a few shots of morphine. It may as will have been water. Nothing! Didn't touch the pain. I was writhing around like a mad man in pain. It was so excruciating. Finally they hooked me up to those morphine pumps that beeps every 10 minutes so you can get another dose. I kept hitting the button until I was semi-conscious but I could still hear it go off so I would lift my hand and punched the button again until I passed out. The next morning I wake up and I am being strangled by the oxygen line which is on my left side behind me and all of the IVs on my right. (Can you tell I hated my nurse and will never, ever have her "take care" (abuse me) again? NEVER!). One last lovely experience was when the nurse says "well you have to get really to leave now". I can't even sit up and you want me to walk? She say "get your clothes on now". So I go to the side of the bed it takes me 20 minutes just to take of the hospital gown. Then I try to put my leg in my pants. Splat I am down on the floor naked and can't get up. Great. What next? Well of course my nurse it no where to be found. Finally another nurse comes by and asks what I am doing. I say "I'm searching for spare change!" “What do you think I'm doing”? “Nurse Ratched asked me to get dress 'cause I have to leave”. “I told her I could do it, but she ignored me.” Anyway I finally escaped from "the asylum" (i.e. recovery room) and it took about two weeks to recover from the procedure. Dilaudid got me through the pain.
A month later and I learned that my 2nd tumor had been totally obliterated too. YES! What a great Interventional Radiology team I have.
I am now tumor free for the first time since last June and loving it!!!
I go back for my next 3 month MRI is June.
After that I should have about 6 months to wait for my transplant as I will have a MELD score of 34 in December and 37 in March of 2013.
So I think I am gonna make it. I had my doubts before. But the closer I get to transplant the less time there is for my cancer to get out of control and kill me.
I know I am one of the lucky ones. I have to close friends that both had MELD scores over 40 before there got there life saving transplants. And what they went through makes my problems look minor. I visit pre and post transplant patients at the transplant center on a regular basis so my now I have meet probably between 100 - 200 liver transplant patients.
I am also a volunteer Ambassador for the California Transplant Donor Network (CTDN) and sign up donors and speak to various groups about the need for donors so we can relieve some of the horrible suffering and deaths that happen because the waits are so long.
So that is part of my story anyway.