HCV Positive

This blog is a journal recording my personal experiences with Hepatitis C.

Location: United Kingdom

I have hepatitis c, genotype 1b and started 48 weeks combination treatment, pegylated interferon alpha 2b and ribavirin in August 05. Unfortunately due to intolerance, treatment was withdrawn after only 2 weeks. I am not sure at present what the future holds.

Monday, September 12, 2005

Treatment withdrawn

It's a long time since I've been up to blogging. Unfortunately my treatment did not go very well and I was taken off medication after only 2 interferon injections and 10 days of ribavirin. It has been almost 6 weeks since I stopped tx and I'm just getting a little strength back.

I have been watching the forum and have received lots of support from there, as well as from other bloggers, and my gratitude for that is immense. I have been unable to concentrate enough to follow blogs, but hopefully will get round to catching up with these soon too. I do hope all of you are faring well and I look forward to hearing your news, as well as visiting the new hepatitis c blogs I've heard about on the forum.

I really don't know where to start this post. I'm still not sure just what happened to me and I'm still confused. I have decided that I need to record somewhere what has been going on, and my blog seems to be the ideal place. I apologise to readers as this is a long blog and may be difficult to follow at times.

I also want to stress to others who may be preparing to undertake treatment, that my consultant explained that I come in a very narrow margin of about 3%, who suffer extreme reactions to the treatment. In contrast, as I've mentioned in previous posts, my partner worked full time whilst on treatment and did not have any of the side effects I describe herein. The chances of you having the same reaction as myself are very slim indeed.

After my last post I went to the hospital attenders clinic as my nurse advised, she apologised that she wouldn't be able to see me as she was running her clinic. At the hospital I was examined by a doctor and given antibiotics and an inhaler for asthma which I'd had as a child.

I asked this doctor about my blood test results from the day I started tx, she told me they were ok, ALT's 55, nothing significant. She gave me the results no problem, not asking me to sign any forms to manage my records as my nurse had said to me previously. My viral load and HIV, Hep B tests were not mentioned and in my confusion I did not enquire. She told me they didn't test for AST's, she also told me if you became anaemic on treatment they gave you a blood transfusion and continued tx.

A couple of days later it was clear things were not improving and my condition was deteriorating, difficulty breathing, multiple panic attacks, at least I think that's what they were/are. I spoke to my nurse again who was busy, this time running a class, so couldn't see me. She told me to ring my consultant's secretary and ask her to get me an appt at the hospital attenders clinic. I rang the secretary who gave me the number to arrange this myself which I did, and which seemed like a mega chore at the time.

I saw another doctor and I was taken off the antibiotics and inhaler and given something to stop me feeling nauseous, which I didn't take, some zopiclone to help me sleep as the insomnia increased, and I think it was on this occasion I was given 5 x 2mg valium tabs. Some blood tests were also taken. My nurse spoke to me on the phone later and encouraged me to continue with tx, explaining that things may settle down after the initial dose. I had not suggested stopping, but had asked were my symptoms usual as they were very severe.

I took my second injection, and was up and down. Feeling ok for perhaps 20-30 minutes at a time. Strangely, I couldn't smoke, even though I was desparate for a fix of nicotine, one drag on a cigarette had devastating effects. I was weak, I wasn't eating, I didn't have any foods in that I could face, I didn't have enough support in place, everthing was falling apart. People who pledged support were not available, but it was clear I needed more than a visit and a chat, I needed intense nursing.

After speaking to my nurse again on the phone, and again advised she was busy running her clinic so couldn't see me, I returned to the hospital attenders clinic for a 3rd time. This time my nurse popped into the waiting room whilst I was waiting to be seen by the doctor. She asked me if I wanted to stop treatment, I could not lift my head or think straight, let alone make a decision as serious as that on the spot like that. No way was I going to make that choice, I wanted support to enable me to continue. I asked her if I was really expected to cope with these symptoms at home and she told me I would not be admitted into hospital. In the end she said I think you should stop the treatment as it is clear it is having a very severe effect.

I saw a different doctor again, this time he took blood tests, I lay in the consultancy room for a couple of hours breaking down and sobbing until the results came through. I told him my nurse thought I should stop tx, he told me my bloods had come back on the low side of normal and so were ok. I asked how they compared to the results from the last tests and he said he didn't know as he hadn't compared them. I was too distressed to insist he did this. I asked were my symptoms all a result of anxiety, (somebody had mentioned anxiety somewhere along the line), he said, well you appear to be having side effects from the treatment and I was sent home, that was it. No counselling or anything.

I slept badly that night, waking regularly with a violent jolt which seemed to come from the base of my skull and upper chest/throat region, accompanied by tremors and difficulty moving. The next morning I woke up with by now, a familiar pattern of a heavy weight in the centre of my chest, weakness down the left side of my body, including face, arm and leg, waves of involuntary muscle tension, laboured breathing, shaking and tremors, jaw clenching, waves of a sensation like hormones or chemicals being released into my chest and abdomen and afraid I would collapse. I was alone, my partner was at work, I rang an ambulance and was taken to A and E.

The doctor I saw there was very sympathetic, he told me these interferons can really wipe you out. He took more blood tests, I told him I'd recently had these done twice but they had not been compared, he told me he would be comparing all three tests. This was now Wednesday morning, I had taken my second injection the previous Thursday.

This doctor gave me a saline injection as I'd not eaten properly since Sunday, he also organised a chest xray which appeared ok. I was not sure what to make of this as breathing and chest pain were significant and I had had 4 chest examinations by 4 different doctors which all appeared to contradict each other. I also had diarrhoea.

The blood results came back showing that I had been steadily becoming anaemic, he recommended I was admitted into hospital for observation. He called down the last doctor I had seen at attenders clinic, who did various tests on reflexes, follow my finger with your eyes sort of stuff , looked at my throat and tongue which by now was covered in the thrush he'd missed the day before. I stayed in hospital from Wednesday morning to Thursday evening and began to eat a little.

My sister, who had been away on holiday, came to see me in hospital, she rang my nurse while I was there, my nurse came over to the ward with a student. She advised me to get help from my gp to manage my anxiety, the student gave me a patronising, unnaturally long fixed smile and told me there was lots of stuff I could do to manage these symptoms, like he was some expert. I just turned away and cried I felt he was so patronising, I wanted to scream, get out of my room you moron. So noone was talking side effects any more, it was anxiety, I'm not sure when this subtle cross over happened.

My nurse spoke about all the support they could put into place should I resume tx at a later date, I couldn't make head nor tail of all this, I just wondered where it had been this time around??!!? She mentioned perhaps putting me on a course of antidepressants for 6 weeks before resuming treatment next time round.

One of the consultants who had seen me when I had malaria 5 years previously, visited me before I was discharged. (I haven't mentioned my own consultant had been on holiday since I began my tx). He told me that my biopsy from 5 years ago had been very good, showing only mild inflammation, he felt now it would be wise to have the second biopsy after I felt well enough, then, if the my liver was stable I could perhaps wait another 4 or 5 years in the hope of better tx becoming available, or if my liver had deteriorated I may be more motivated to resume tx if it were a matter of life or death.

All I could think of at that point is that I now understand why some people with cancer refuse chemotherapy, preferring to spend their last days with some sort of quality to their lives. The parting shot with this consultant was when his junior doctor mentioned that my T4's were high, he said he didn't want to mess about with these just now as it was probably best to just let things settle.

Another doctor then came to see me, the one I'd seen the second time at the attenders clinic and he arranged medications for me to take home. Some stuff for the thrush which was now so bad that when I took it I could feel the thrush all the way down my gullet to what I presume was the entrance to my stomach. Paracetamol and codiene for pain, and quinine tablets for the horrid snake leg symptoms I was having from my groin down to my feet, which never really developed into full blown cramp but kept me awake at night and were just bad enough to make my big toe curl up. The quinine didn't really relieve these symptoms.

I never took the codiene due to developing breathing problems with these in the past. I was never asked about this so just took them home. I had had a little time to consider what the consultant had said about high T4's and mentioned this to the doc, he looked at me and said, I think you do too much of this, and tapped his forehead with his index finger. I had no reply, it was true I do think a lot, especially when I do not get clear answers. I still wasn't clear what had happened to me, was this intolerance to interferon or ribaviron, or was this now anxiety? If it was anxiety, I had never had it like this before.

I was offered more valium and foolishly declined these as I was afraid at that point I just couldn't take any more pills, I really didn't think my body could cope with anything else. Also I still had 2 valium tablets left at home which I though would do in an emergency. As soon as I got home I felt I needed these, I also realised that if I didn't get a supply quickly I may be in dire straits over the approaching weekend. I rang through to the ward and asked the staff nurse who had given me my farewell pack of meds if they could organise these to be dispensed and my partner would pick them up. No, I did feel such a nuisance.

I rang my own gp the next day, friday, and asked for a home visit which I got. I could only briefly explain what had been happening as I was so weak and going light headed everytime I spoke for any legnth of time. She called to my home but I couldn't really relate all that had happened, I was too weak to speak much. She prescribed more valium for me, she asked me the name of a plant I have growing by my front door, when I told her the name, she said, you will be strong like this plant.

That is enough for now, there is much more to log, another overnight hospital stay, a merry go round of locum doctors, antidepressants. Watch this space.....