Posted 4/16/2012 4:53 PM (GMT 0)
C-Shea, it's important that you get sleep and rest whenever you can. You seem to be steering the ship, so you need to take care of YOU--otherwise the ship sinks.
To summarize: I was diagnosed with hep C in '93. I know that I contracted it during a brief involvement with IV drugs in '68 and '69. I tried interferon injections, which was the only treatment available at that time. My white count went too low so I was taken off treatment--twice. Aside from fatigue, I felt okay. I was working FT and changed to PT to conserve energy. This is when my marriage fell apart, after less than 5 yrs.
In 2002, I was having pain in my left knee. I thought I might need a knee replacement. However, x-rays of my hips showed osteonecrosis. This is a disease in which the bone literally disintegrates, in this case the femoral head, and implodes into itself. The biggest risk factors are heavy alcohol use and prednisone use. At that point, I'd only had 2 prednisone capsules in the 70s for neck pain...and had been completely sober for 7 yrs. So I don't know. The rt. hip also had it, but not as bad. By the time I had the left hip replaced, the pelvis was sitting on the thigh bone--very painful. Three weeks after replacement, x-rays showed that the "cup" (acetabulum replacement) had slipped out of place, so they had to redo the hip. I awoke to find myself in a spica or body cast, from the breast bone down through my foot on the left and to just above the knee on the rt. I was in that for 3 weeks and it was miserable. (But I did stop smoking.) I was in the hosp. all that time. Then they took me out of that and put me in locked steel hip and leg braces for 3 weeks. Nine months after the left replacement, I had the rt. one done. Both hips had to be revised down the road, due to dislocation (bad surgery to begin with.) I was living alone at that point (and ever since) and had to pay someone to grocery shop for me, do laundry, etc.
In 2005, I was having regular abdominal CT scans once a year, due to the hep C. They had all been okay until then. I was found to have a HUGE hepatocellular carcinoma (HCC) that took up the entire rt. lobe and had metastasized into the inferior vena cava. This was all one tumor, though. Shands, where I had been diagnosed and where I'd had the hip replacements done (as I had no insurance, working PT) told me basically, "So sorry. There's nothing we can do for you." Right at that time, I received SSD and Medicare based on my hip issues and hep C, so I contacted Mayo Clinic and they literally saved my life. First, they shrunk the tumor with chemoembolization. This brought the tumor back into the rt. lobe and down from 12.5 x 11.5 cm to about 11 x 8 cm. I was told there was a new study drug for attacking liver tumors and I signed up for it. I was #2 in the study. At this point, I had nothing to lose. Regular systemic chemo does not work for liver cancers. Having hep C puts one at high risk for HCC. Fortunately, it worked for me, killing the tumor....but also killing the rt. lobe. In the meanwhile, my left hip was dislocating every half-hour...any movement at all would cause this. While the Mayo orthopaedic surgeon was reluctant to do a revision, due to the cancer, he decided to do it based on how well the tumor was responding to treatment. So I had the 2nd revision of the left hip in '07 (and it hasn't bothered me since then.)
It takes several months to see how much the TheraSphere has really worked, so it was in that period of time that I had the above revision and recuperation. When scans showed death of the tumor and rt. lobe, Mayo removed the entire rt. lobe of my liver. None of the testing showed that it had spread anywhere else (I still get scans checking on this.) Biopsy showed that the left lobe was cirrhotic. A couple of months after having the rt. lobe removed, I developed an incisional hernia in the midriff, which was repaired with a biodegradable mesh. It only held up for 2 mos. When removing the rt. lobe, the surgeon performed a Mercedes cut, which is the same one used for transplant (like an upside down smiley face, from one side to the other, with an incision from the breastbone down to the horizontal incision.) So I had a revision of that hernia. After both these repairs, I had problems with drains. They were in for at least a month each time and kept clogging up or having one problem or another.
All was well for nearly 4 yrs. I was having blood work done about every 3 mos., as well as scans, and then every 6 mos. I had a revision of my rt. hip during that time, as it had also started dislocating.
In March of last year, a new HCC was seen on the left lobe. It was then that I was told I would need a transplant. My liver enzymes and AFP level had been steadily rising before this, but they were just watching it.
So I began the pre-transplant evaluation at Mayo. They are very thorough and it took about 6 wks. I was listed for a liver transplant on July 18th, 2011. During this period of time, I had a chemoembolization to shrink the tumor when it grew to 4.9 cm. They will not transplant if a single tumor is 5 cm or more (which is why I couldn't get transplanted with the rt. lobe HCC.) As you see in my siggy, I received a transplant Oct. 27th, 2011. The mesh from hernia repair had stretched out and was removed and replaced. I've had a number of problems since then, including an opening of the incision in the midriff which just wouldn't heal. Then the mesh from hernia repair was coming through this opening. They opened me up again on March 14th, '12. They removed the mesh, cleaned out that space, and put in a new mesh. The staples are now out and that incision site looks great (and that was the 5th time the midriff had been cut in the same place.)
However, since nothing is ever easy with me, a couple of days after I was discharged (was in hospital 8 days), my legs really blew up--including feet and ankles--as well as belly. I then developed huge blisters around both ankles, the feet, and on my shin. The ones on the left were water blisters. The ones on the right were blood blisters and I was draining a lot of blood. I was having Home Health nurses during this time, but they weren't sure what was going on. I finally saw the surgeon and she said it's a hematoma of the rt. shin (blood clot) which has been there awhile and which they are now trying to remove. I am also scheduled for a paracentesis tomorrow to get the fluid out of my abdomen. They feel that it is between the mesh and the skin, though, and not in the abdominal cavity.
Sorry this is so long, but there's just no way to shorten it with all that's gone on. And I'm sure there is stuff I've left out. Since I am nearly 6 mos. out from transplant, Mayo has scheduled me for a battery of tests and consults, beginning April 26th. They are basically doing all the stuff that was done prior to transplant.
If we ever get these problems under control, I will be put on hep C treatment, most likely the new, 3-drug one.
The point of all this is to let people know that hep C is nothing to be complacent about. If you don't do treatment, or don't respond to treatment, there's a strong possibility of HCC, cirrhosis, and ESLD appearing.
Hugs,
Connie