January, 1998
I was diagnosed with Hepatitis C on January 28, 1998 completely by accident, through a positive TB skin test. The military infectious disease control people wanted to treat me for the possible infection of TB, so they ran a liver panel blood test to see if I could tolerate the TB medicine - INH. It turned out that I couldn't take the TB INH treatment regime because I had elevated liver enzymes, and with further testing was found to be positive for hepatitis C which the military doctor's at the time told me - "It's no big deal".
April - May, 1998
After asking a lot of questions, hooking up to the internet, and reading volumes of data and material, I insisted that my doctors run a full set of blood tests. So on April 22, 1998 the doctor's finally agreed with me, and my RNA Quantitive (viral load) came back at over 3.5 million particles per unit, and the liver panel showed high ALT/s and AST/s, with active hepatitis.
The biopsy that I had on May 12, 1998 showed active chronic Hepatitis C, with liver damage of portal bridging fibrosis, which according to the "Living With Hepatitis C, a Survivors Guide" provided through a grant from Amgen, and written by Gregory T. Everson, M.D., and Hedy Weinberg, says I am in Intermediate stage III of a IV stage possible terminal illness.
January - September, 1998
My battle with the disease almost seemed minor compared to the battle with the medical systems, military and civilian. I did not meet the present criteria for treatment, they thought I was too far advanced, I had never taken this medicine before so I was considered "naive", my viral count was too high, because I was a naive patient, I was not eligible for study groups . . . etc . . .
Struggling with this illness and its now physical ramifications, the realization that I might not fare as well I wanted to, realizing that I was no longer bullet proof and invisible, I found myself having to make some real hard choices. Did I want to bury my head in the sand, or get educated, get informed and get REAL HELP!
So by now, coming face to face with all this ignorance, stupidity, arrogance, and intolerance, I fired all my doctors - one of whom told me that my Rheumatoid Arthritis and Fibromyalgia would disappear if the hepatitis did, a second high ranking gastroenterologist who insisted I was some sort of drug addict, or had recieved my gift by means of sleeping with every person on the planet, . . . I found a decent civilian doctor in Savannah, GA who agreed to treat me, and give me a prescription for the Rebetron that I needed to at least try to halt the virus, and prevent any further damage to my liver, even though he felt I would not do well on the treatment. By now, my viral count had risen to over 16 million particles per unit.
September, 1998
My blood tests by September showed that my viral count skyrocketed to over 26 million particles. The doctor was incredulous at the amount of virus present. He insisted "it must be a mistake". Together he and I decided that I would start the combination therapy of Interferon/Ribavirin on September 14, 1998 because my disease had progressed so fast, and I was willing to undertake the treatment. He insisted that I quit college, and my job to see how I fared thru the first few months.
I've found that all statistics say that the combination therapy of Interferon/Ribavirin (Rebetron by Schering-Plough) has shown about 37%-50% success rate so far while the patient is on the treatment. When the medicine is stopped is anybody's guess at how long the remission will last. All the statistics to date show that virturally all patients usually relapse within 2 - 5 years of treatment, usually sooner, however, treatment has just begun in the last few years so a lot is still unknown about this disease or the medicine itself. There are new studies being lauched all the time, and new study groups forming, and new medicines being worked on in research labs as we speak!
October 1998
The first night of therapy was truly absolute "Hell". Raging fevers spiking to 104 degrees, sweats, chills, runs, achiness like I'd never imagined, my skin was on fire, I truly thought I was going to die, and at one point even insisted the my husband just put me out of my misery. I had made the mistake of taking my first shot in the doctors office at about 10:00 am that September 14th morning, and by 6:00 that night was not a happy camper. By about 4:00 that morning, I drifted off into exhaustion thinking I could never do that again. But feeling like I had no choice, and wanting to be in remission, two days later (after most of that time spent in bed), at about 7:00 that night I managed to inject myself again. To say that it wasn't as bad as the earlier shot would be to not be able to explain the excrutiating pain I felt thru that night as well. The drug company and doctors were right as to the side effects lessening, but never to the degree they said it would.
During this ordeal in September, my father had had a quadruple bypass that had failed, and since my treatment had been so bad in Georgia, we decided to try to come north near my family and see if I could get a little better medical treatment. By this time, the depression was gradually taking over my life. And chemically caused depression is quite a unique disease all on its own. Its such a gradual thing, taking over your very existance, you don't even know the difference until its quite too late.
November, 1998
We arrived in New York State on November 10th, after 3 days of driving, since I could only manage 400 miles a day. We had two vehicles and I had to drive one of them, with our two dogs, cat and parrot. I think I cried non-stop the whole way. My poor animals were completely terrorized by the lunatic at the wheel! I had often wondered by that time what it would feel like . . . not to feel anything anymore. The depression had taken hold.
The medical staff at the new clinic were not sure what to do with me when we got here. They had never seen anyone with hepatitis (that they knew of), or anyone on Rebetron. The pharmacy here was wonderful. They got my medicine in, in a timely manner, and didn't seem to balk at the absorbidant price of it. They filled all my prescriptions for rash cremes, salves, aveeno, tylenol, zantac and motrin quite cheerfully. The doctors however were quite a different matter, and I didn't get to see a gastroenterologist until January. I did however have my medicine, and I thought that was all I needed.
December, 1998
My constant companion by now was . . . you guessed it-Depression. The fog that I was in, (cotton-head) caused by the medicine even kept me from seeing it clearly. I just thought I was going insane! Looking back, I truly don't know how I even functioned on a day to day basis. Every aspect of my life suffered. I was frightened, confused, guilty, incapacitated, and completely useless, unable to hardly take care of my self, let alone my house, or family. I didn't understand what was happening to me, and no one around me seemed to be able to offer any suggestions that made sense. I hurt all the time, I couldn't sleep, I couldn't eat. I just moved my feet one in front of the other in a familiar habit and tried to pretend I was ok. I didn't know what else to do. The helplessness on the faces of my family and friends was intolerable to me! I hated feeling like I had put it there! Guilt and Depression were now running hand in hand.
January, 1999
Well, the new Gastro told me "You're in remission on medication", and my viral counts were coming up "non-detectable" (under 200,000 particles, and my liver panel enzymes are now normalized). The only real blood work problems was the critical lowering of White Blood Cell count from the Interferon. The normal range is about 6,000 - 10,000. If it drops below 2,000 then I was to come off the medicine, or lower them drastically until my immune systems recouperated. The Red Blood Cell count was now also lower than normal, (caused by the Ribavirin which can cause hemolytic anemia) but was staying fairly static. So the decision was for me to stay on the Rebetron for the full year and then think about longer if I could tolerate it.
The side effects were still quite debilitating for me, but didn't seem to trouble the doctors at all. I'm sure if they were experiencing what I was, it might have been a little different story. The management was still - tylenol (which itself is quite toxic to the liver) on shot night, and plenty of rest, fluids and nutrition. The creams and salves were flowing freely due to the terrible rashes I was now getting. On my eyelids, elbows and right leg. They even biopsied several sites to see what the cause was . . . and no specific idiology was ever revealed. The rashes on my eyes were so bad that they could force my eyes shut overnight with the swelling and redness. My hair was falling out quite readily, and breaking off the rest of the time. My waist long hair had begun to become very short. To combat the "haircut shock", I had my neice begin trimming what was left to try to become accustomed to it. And altho I had been asking for several weeks now to see some sort of therapist or psychiatrist, that I was going over the edge . . . nothing was happening there, except that Guilt and Depression were choking me.
February, 1999
After 6 months on the medication, the symptoms had leveled out somewhat. The rashes continued, the fatigue was still debilitating, but I try to take vitamins, eat well, try to rest at least two hours a day, and try to move around for at least 1/2 hour a day. I guess I had gotten "used to" having the flu all the time.
March, 1999
I managed to finally get to see a therapist(social worker), after I hit bottom in front of a health care worker at the clinic. I was then referred to hospice because the military would not see family members, so I had to find help outside the system (again). I guess they realized I was not doing very well, so I was at least written the referral I needed to help aleviate the terrible stress and depression I was feeling. Hospice referred me to a local licenced therapist who turned out to be the best thing that happened to me in a long time. She validated me, and my illness for the first time throughout that whole year, and helped me to recognize the symptoms of depression, and I found I was not "insane", just the victim of some horrible toxic medicine, and a lot of medical people who were just basically incapable of helping me, probably due to their own feelings of inadaquecy, and lack of education about hepatitis and its effects.
I managed to pull myself together somewhat, get better educated about my disease, make a concerted effort to reach out to other people like me, and try to talk to my family about what I was experiencing without feeling guilty. I also started a support group and found many other people like me, who had been hiding in dark places unable to find any answers. I found a Schering representative who helped me with all sorts of information, and tons of toys, pamphlets, books and the like that I spread all over the Watertown, NY area.
April, 1999
HYPOTHYROIDISM (*Hashimoto's Disease) is the new disease of the month. I was diagnosed with it April 9 over the phone (by a military GP whom I fired the next day for using bad judgement by dumping it on my lap over the phone, and basic using inappropriate behaviour, (never mind a terrible bedside manner).
The medicine for this one is called a Synthroid (*Levothyroxine). Apparently hypothyroidism is also an auto-immune disease, like the Rheumatoid Arthritis, and can be controlled by the synthroid. They just have to get the hormone regulated, which was no easy task. The symptoms are similar to the hepatitis, and the medicine, and the arthritis, so short of a specific blood test called a TSH . . . there was no way of knowing until I started complaining quite arduously of not being able to get up off the couch, and the muscle pain, feeling cold all the time, and terrible fatigue even though I was supposedly in remission from the Hepatitis, and hadn't felt that bad in a few months. So now it was baack for more blood work weekly to try to regulate this medicine. I also had to cut back on the the Rebetron to half doses due to my immune system numbers dropping below 2000. The Red blood cells, platelets and hemoglobin had also been dropping gradually over the last few weeks.
May 4, 1999
My dosage of the thyroid medicine had been doubled now due to the fact my thyroid was still not working. After many calls to Schering, my doctors, research on line and questions to many thyroid links and foundations, I'm now of the understanding that the Interferon probably caused my thyroid to stop working, and cause the Hashimoto's disease. Since its only been about a month, my gastro and I decided today that since I'm already borderline WBC and RBC, with this thyroid problem, not to mention the ongoing depression, that its probably a good idea to stop the rebetron combination therapy. She's very concerned however due to the fact that if my thyroid does start working again, and I'm taking mega doses of the synthroid . . . it could kick me into HYPERTHYROIDISM (which is another disease) so I'd have to be monitored with weekly blood tests to ensure this doesn't happen.
But . . . the decision that day was to stop the combination therapy. The best decision I ever made was to go on the rebetron. The best decision I ever made was to come off the rebetron.
By May 10th, I was feeling like 10 Million Bucks! I could not believe the difference! That complete overwhelming invasive horrible depression had miraculously lifted, and I COULD SEE! I felt happiness, joy, gladness, sadness, anger, and all the other emotions in a real way again. I stopped hurting. I fell asleep. I started eating because the food started tasting like food again. I could smell things again. I could concentrate on a sentence in a book and actually absorb the thing, and continue reading. My attention span REGREW to longer than 26 seconds! It was amazing.
June, 1999
The Rheumatoid Arthritis came back. Apparently the Doctors were wrong again! My joints began to hurt again about the second week in June. The new Doctor (GP) prescribed motrin and ranitidine for the pain, and stomach upset. The rashes have completely cleared up. My hair has stopped falling out and breaking, but by now is almost as short as my military husband's. My eyes are clear, my head is clearer, and my will is to live, and live well. I started a support group several months back to try to combat the lack of information in the area, and my own feeling of uselessness in the face of this disease. I found many people suffering the effects of all sorts of hepatitis's, and do my damnest to try to educate the public as much as I can. I've even given classes to the local hospital workers on the effects of Hepatitis and the treatment options. Very cathardic. Very helpful. God blessed me with this disease so I could help raise awareness!
July - August, 1999
I'll update this page as the need arises. For now, suffice to say, I'm still in remission. July 29th blood tests came back <2000 particles (non-detactable), and my Alt/Ast ratio is 13/19. The lowest its ever been. The synthroid is now leveled out and I'm using .1 mg levothyroxine, and my thyroid test is normal for the first time again at 2.65. I take the 800 mg motrin, and ranitidine for the arthritis when I absolutely have to, because the care of my liver is now first and foremost. My hair has started growing in now is but is growing in with a lot of white, so I'm looking much more "mature" these days! I'm still seeing my therapist, and will continue to, for its wonderful to be able to let it out. I don't feel like I have to do it alone anymore.
The support group is going strong. We have had great speakers so far, and are looking forward to more in the future. I continue to get educated and try to pass that along as best as I can. With the help of an oncology nurse practitioner who works for Schering-Plough out of New York City, who gives me materials, pamphlets, slides and moral support (and understands that I WILL NOT take any money from her/Schering or any other drug company, nor are they welcome in our group except to listen or offer materials only), I've given a wonderful seminar for clinical and public groups to help them be "Hepatitis Aware", and am in the process of meeting with our local public health department to set up a seminar for clinicians and get them all the information and pamphlets and materials I can get them to get out to the public, and those getting diagnosed with no place to go after the diagnosis.
Autumn, 1999
My health up to now has been not ideal, but fairly consistent. The Rheumatoid Arthritis and fibromyalgia is constant, but the hepatitis seems to be still in remission. The thyroid problems seem to be taken care of by the levothyroxin, and the headaches have ceased since I stopped gorging on chocolate! I am due for a PCR, CBC, Thyroid (blood work) in about a week, so I am hoping for the best. I've had absolutely NO problems with depression since coming off the Rebetron, but continue to see my therapist monthly on "spec", and we continue to discuss what the outcome will be - when - I come out of remission. I'm still not working, taking the time to heal, recoup, and just enjoy my time, cooking, doing crafts, sewing, making ornaments, refinishing dressers and bookcases . . . my husband seems happy with the deal, so we'll keep it static for now!
December 1999
Still in remission. Last PCR stated 'Under 200,000', so I guess I'm still doing ok. Personally I think 200,000 particles is a lot of particles, but if they think I'm in remission, and my liver function tests are still low-normal . . . so be it! The migraines have come on a lot more. My doc has prescribed Imitrex (by GlaxoWellcome) and Fioricet for pain, if the Imitrex doesn't work. I tried the Imitrex today - two 25mg tabs within 4 hours, and the second one did the trick. Also have a wicked case of sebhoreic dermatitis, for which he's prescribed Sebutone, a shampoo, and that as well seems to have done the trick. Just can't figure out if all these things happening are a result of the disease, the medications, or just that I'm getting OLD! HA!
We are heading to Georgia and Florida for the holidays, so ya'll have a wonderful blessed chrismas season, and I'll see you all in 2000! Keep Fighting!
August 2000
We are moving back to Fort Stewart, GA. where we started off this whole mess. My blood works are consistantly in the normal range, with the PCR's coming back non-detectable. Its amazing to me that my God saw fit to allow me to get better while so many others are not. My support group will be facilitated by one of the founding members while I'm away, and hopefully, I'll return to help again.
August 2001
My blood work continues to be 'normal'. My gastroenterologist in Savannah says that the time frame that has elapsed for me in remission tells him that by the next blood work in December 2001 - he'll consider me cured. I asked him not to use the "C" word, this disease and treatment are still in such early stages, that I'm not sure the outcome is that 'stable'. For now, I continue to feel better by the month. I've taken up yoga, for muscle strengthening as the rebetron did deplete my muscle mass and strength. And oddly enough, I still feel the 'cotton' in my head on occasion, that telling me that medication has some pretty far-reaching effects. The anger that I felt/feel is still quite evident, but not so devastating now. And that may just be because I'm one of the very fortunate ones to be in remission, and at least give my liver a chance to run 'normally' for a while.
Please Remember:
This disease is about us. Not the drug companies. Not the CDC. Not the government's. We've got to educate the public and disperse the stigma. We are not dispensible. We will not go away.
Just a Note:
Hepatitis victims were reported to the county health department by the laboratories, they were tested, and usually sent on their way, not being treated for one reason or another. Anyone wanting support or a doctor had to travel to other cities from 60 to 120 miles away, and I found one "support" group in the nearest city seriously lacking in any type of support as it seemed to be run by a drug company representative, not the people who were actually suffering from the disease.
So anyone interested in attending or helping with the support group here in the Upstate New York area, please contact the Samaritan Health Center for more information, or email me and I'll get you in touch with the current facilitator, as I have once again relocated back to Georgia with my military spouse!
When I came to Northern NY, I found that the services and support in this area were virtually non-existant, both for Hepatitis and Thyroid Disease, and there is/was a real need for both. After an article was printed in our local paper on Hepatitis, tainted blood, and our plight in general, my phone number and intentions of starting a support group was given and I quite a few people call me. Their stories all seemed to be the same as mine . . . The information available was fairly outdated, confusing and non-commital.
© 1997 kdwhite@webhart.net