3 May 2014 - Cured!

On 25th April I went for my final blood tests. Yesterday I called the hospital and got the results - no virus detected. I am cured. Or at least I have achieved a "sustained virologic response", aka SVR. 99% of people who have SVR three months post treatment are cured, though there is a small chance that the virus is hiding out somewhere. I'm not thinking about that though. I'm cured!

Next week I have a follow up appointment with the hospital. Then they'll have me back in a year for more blood tests just in case. My liver is in good shape, so I won't need to be monitored. That's it - my time with hepatitis C over.

Recovering from the treatment has been no picnic. Physically, I feel good. I have energy. I look younger, my eyes are bright and clear and aren't puffy any more (I had thought that was just a feature of my face).

My brain is mullered though (for those not familiar with that slang term, it roughly means beaten and battered.) Coming off the antidepressants is proving very hard. My brain feels weird; like I have tinnitus inside my head, it feels blank and taught. I am finding it very difficult to concentrate. Any work where I need to do anything new takes me hours. It's been over three months I've slowly been reducing my antidepressant dose, and I'm still only down to 15mg a day (from 40 on treatment) and I can really feel it, all the time, every day. I thought if I reduced it slowly it would be imperceptible.

I'm also very impatient. I feel I only have time for my big ambitions: my writing, my drawing. This morning I was disabled by confusion, there's a parcel at the post office that I need to pick up and that means I can't draw and arghh! I am very much looking forward to regaining some perspective. It makes a big difference though, knowing that my pulped brain isn't because the virus is hiding out there preparing for a counter attack. I will recover from the anti-depressants and feel normal again.

Mum nearly cried on the phone when I told her the good news. The women at work, who have looked after me through treatment, reacted the same way. I am happy. My heart feels big and warm. I am grateful. The shadow over my life is gone. It's good that this story is over, and has a happy ending.

31 January 2014 - Finished!

Well I did it. 48 weeks of triple therapy done.

I made it through without needing to take any sick leave. I work a three day week, I couldn't have worked full time, but three days was manageable.

My last viral load on treatment, taken at week 44, was undetectable. Still undetectable! Makes me want to do a little dance. Phew. It's all gone well.

By the end of treatment I was anaemic, neutropenic and something else who's name I can't remember.  No reason to think they shouldn't all recover now that treatment has stopped. My thyroid has made it through intact, for which I am very grateful.

I'm tired and low on energy. My motivation had got very low, I was living on ready meals and washing up twice a week by the end of treatment. I don't think I'd have managed without the anti-depressants keeping me stable.

Just the wait now - 12 weeks to find out if I'm clear. That's the end of April. Wish me luck!

42. 11 October 2013 - Two thirds through. Kidney impairment.

I finished week 32 today!

At the last lot of blood tests (Monday this week), my eGFR (estimated glomerular filtration rate), which approximates kidney function, was down one point down to 73, from 74 two weeks ago. Normal is above 90, and for the first few months of treatment, it didn't drop below 88, then suddenly it dropped to 76, 74, 73. It seems to have stabilised, so no crisis, I think.

I asked the nurse about it at the hospital. I wasn't all that convinced by her answer, but I don't think that the research has been done. She said that it was because the ribavirin had built up to such a level that my body was having trouble clearing it, and that if I had a normal liver it would clear it no problems, but because of my liver condition it can't cope with the amount of ribavirin. Well that sounds like nonsense to me since my liver had very little damage before I started treatment, my liver enzymes have shown as normal ever since I started treatment, and at an appointment I had with an osteopath a couple of weeks ago he said my liver was not inflamed at all, after giving it a good squish. And also, because in the study I found they said kidney impairment had not been a problem with dual therapy - it was a new issue with the triple therapy - so it must be something to do with the boceprevir, not just the ribavirin. So... But the bit I trusted was that she said that in their experience, they can address it by reducing someone's ribavirin dose, which I'd be fine with if it's necessary, as I'm still on 1000mg. 

She said it wasn't damaging my kidneys. But I wonder how they know? From the research I found online, kidney problems were not noted as a side effect to the boceprevir or telaprevir during the trial phase, but have been found to be a side effect now that the drugs are being used. Because it wasn't noted as a side-effect during the trials it hasn't been fully investigated and they don't have much data on it. But in the study abstract (http://www.ncbi.nlm.nih.gov/pubmed/23813604) it says that there were instances of kidney failure in the French early access program. Another thing is that it's pretty difficult to tell how damaged kidneys are from general blood tests, they normally work well until they are really quite damaged and then the function drops off quite sharply (this is my understanding - I'm not a doctor); they don't heal like livers do either.

You are going to think that I'm mad, but there's another thing that could be skewing the blood test results. eGFR, the test they use, measures the amount of creatinine in the blood. My understanding (based on wikipedia) is that creatinine is released at a fairly standard rate as a natural bi-product of normal muscle processes, creatinine is a breakdown product of creatine phosphate, which is found in muscle. So they can estimate how well your kidneys are filtering and clearing toxins by the amount of creatinine in your blood. But the calculation isn't accurate for people who have unusual muscle mass for their height, weight, age and gender - the examples given are because they are missing a limb or are suffering from a muscle wasting disease - and this is where you are going to think I'm mad; I've been doing weights a couple of times a week, the whole point of which is to cause muscle damage (by over stressing the muscle a bit) to stimulate muscle growth - so that will mean I've got more creatinine in my blood than would be expected. I asked the nurse about this. She said it "shouldn't have an impact", I think maybe she just wasn't really thinking about it in that way or prepared for the question. My eGFR results started to drop almost exactly when I started doing more weights...

Anyway - I can't do much except be as kind on my kidneys as I can be, and if it gets any worse they can address it by reducing my ribavirin dose.

So I am instigating "Operation Kidney Assist" - (I know, silly and overblown, but I find it easier to over-engage). This means:

- no vitamins or any unnecessary pills

- body brushing on my four weekly non-work days (I can't get up in time on work days)

- having hot water with a slice of lemon in first thing in the morning on non-work days

- having asparagus at least once a week

- drinking even more water, at least 3L a day

- trying to avoid sugar.

I have more blood tests in two weeks time, so I'll keep it up until then and see how it goes.

The hospital got my prescription wrong again - they hadn't prescribed me any Boceprevir, forgetting that I was a prior non-responder so should be prescribed it until week 48. It doesn't fill one with confidence. I was so tempted not to say anything - it would be lovely to stop taking them. I'm on the full dose for the duration though. Am going to do everything I can!

41. 14 September 2013 - The end of week 28 - break from blogging

It was the end of week 28 yesterday.

So far, it's going as well as can be hoped. I was still undetectable at week 24, halfway, so now it's just the long slog to the end.

I'm still neutropenic, so they've increased my Lenograstim dose to every five days, rather than once a week.

Apart from that, my blood tests are all ok. I'm a little bit anaemic, my platelets have dropped but not to dangerous levels, my liver function tests are all normal. My eGFR (kidney function) has dropped a bit, but at the moment it's not a problem.

The main battle is psychological. I am out of steam, and have difficulty motivating myself to do anything. The more I do the better I feel, but I am, more and more, acting based on emotion rather than what is rational. Rationality seems a long way away. So, I have become pretty short-term-ist - I do what needs doing that day, and what will give me instant positive feedback, otherwise I sleep.

Which is why I've not been posting here. I don't feel the need to come and express my feelings, as treatment is now mundane. I'm not frightened anymore, just tired. I get no feedback from this blog. And it's also pretty much defunct; I expect that we are the last group who will do this triple therapy; in 12 months time there will be interferon free treatment regimes. Do those instead!

A couple of things - throw out anything that you could possibly re-infect yourself from. Change your toothbrush, razors etc. regularly. In the last couple of weeks I have accidentally stabbed myself with an old craft knife and, stupidly, used an old pin to get out an ingrowing hair. I can't believe I have risked my treatment success by exposing myself to possible reinfection. If my brain worked, I wouldn't have done, but it doesn't - I live in a fog.

Secondly - exercise!

I will post again eventually, maybe when treatment is over and I know the outcome, maybe before then.

To anyone else going through this - I cyber-squeeze your hand to say yes, it's hard, you are doing so well, thank you for sharing it with me.

40. 28 July 2013 - Week 22, keeping on keeping on...

I saw my GP on Friday. The plan for keeping me going is to get some extra support, but not adjust the anti-depressants:

- 10 weeks talking therapy sessions;- set milestones and put 'rewards' in place for reaching them; 
- get a personal trainer to see once every 4 weeks, again, to help keep me motivated regarding nutrition and exercise. 

I feel it's a good plan. If it gets me through the next 10 weeks, then that's 10 more done!


Two other discoveries - putting a little bit of vaseline over the crack in my nostril is allowing it to heal, which is great as that had been sore for months. It's fine to cover your head in Aveeno moisturising lotion for itch relief. It makes pretty good conditioner.

My hgb is still 11.9 (i.e. i'm a little bit anaemic) , and my neutrophils are up to 0.85. The rest of my blood results are normal, so my meds are staying as they are. I'm still on 1000mg ribavirin and 1800mcg interferon, and taking lenograstim once a week.

I took my Boceprevir two hours late this morning. I turned my phone alarm off without waking up. So there was nearly 10 hours between two doses. It's the first time I've taken a dose late, so I think it shouldn't matter too much... nothing I can do about it now.

39. 23 July 2013 - Week 21

There haven't been any dramatic changes over the past few weeks, a gentle worsening in how I feel.

One thing, as you can tell, is that I'm much less communicative. I can't think of what to say. I feel dull. It's not a big deal, it just means that I don't really enjoy conversation or writing, it takes a lot of concentration and energy, and even then I'm not very good at it. So I'm getting so that, on balance, I tend not to call/write/speak.

Work is taking me much longer than usual, because I keep forgetting what I'm doing. And also I'm making more mistakes, because I can't hold a complex concept in my mind. So I have to work by trial and error in little pieces. Still I am making progress. I started working from home, to try and keep up. In some ways I feel useful and on top of things, and on the other I feel exhausted and overwhelmed.

There's been a heat wave here in the UK. I pretty much have to hide from the sun. Just 15 minutes strong sunlight gives me a rash, even with factor 50 suncream on. That's less time than it takes to walk to the shop back. 

I'm much less motivated now about my treatment as well. I don't keep up with my stickers, I'm into the swing of taking the medication now. So far I think I've missed a couple of Ribavirin doses, but that's it. It's just little things like; I moisturise my skin less often than before, and I don't floss my teeth everyday to keep them meticulously clean. Partly it's because I think I'm tolerating the medication a bit better, now that I'm on the Lenograstim and that's keeping up my white blood cell count (to some extent). On the other hand it's because I've lost the drive to do much really, including exercise. 

To keep me going at work during the longer days that I've been working (I'm really busy at the moment) I've been eating sweet things: biscuits, ice cream, cake. Unsurprisingly, I've put on about a stone in weight. I'm not happy about this, I feel unattractive, which isn't helping my confidence.  I am worried that my boyfriend will go off me, not because I've put on weight, but because I'm no fun. On the other hand, not feeling good in myself doesn't help. But I, so far, show no signs of tackling it. I don't want to deprive myself of one of the few things that is a pleasure that I can do.

Feeling sorry for myself? I am a bit, definitely. Just coming up to halfway, three weeks until I get there. It seems like such a long time to go till the end of February.

I'm seeing my GP on Friday, as a first step to trying to get some support in place to keep me going to the end of treatment. I'll raise it with the nurse at the hospital as well.

Something that my boyfriend suggested, which I think is a really good idea (I haven't got round to it yet) is to set up rewards for reaching certain waymarks. For example, when I get to 24 weeks, we're going out to dinner.  I think I should plan a treat for every four weeks I get through, up until the end of treatment.

I planned the start of treatment and my preparation for treatment meticulously. But I haven't planned the end of treatment, or what I'm going to do after treatment. And I think that would really motivate  If I could lay out plans fair things I want to do afterwards; reducing my antidepressant dose, starting do more exercise. And also I feel like I want a proper holiday booked for after treatment finishes. Two weeks in Spain; learning Spanish, exploring… a real adventure.

That's me. I hope you're doing well.

38. 2 July 2013 - into the twilight zone

Hi, it's been a while since I've been blogging. There have been a few reasons for this:

Firstly, it's because I've been either busy or asleep. A couple of weeks ago I had a massage, which was lovely, nurturing, but it made me feel just how tired I've got. For days afterwards I didn't feel like doing anything. And then I started to feel more ill, more down, more short of energy, which was miserable.

I don't know what happened, but something inspired me to go for a swim. It made such a difference to how I felt, that ever since I've been trying to do as much exercise as I can. It wears me out though. This is another reason I have not been been blogging. i've been too tired.

I've found the solution to the swimming rash, is to cover myself in Aveeno before I go in, and then shower twice when I get out, once with anti-chlorine wash and once with Aveeno shower oil, and then cover myself in Aveeno lotion.

I've been acting unlike me. Spending a fortune on the things that I want, rather than waiting to save up. I bought some software to learn Spanish. I've upgraded my drawing software. I'm doing the things that matter to me.

This last weekend we went to the Forest of Dean. It's just an hour's drive away from where we live, so that wasn't too stressful or tiring. We stayed in a B&B, but in a little lodge in the back garden; not much more than a bed, shower room, and a sink really, but we like to have our own front door when we go away.

On the Saturday we went cycling. We hired bikes from Pedalbikeaway, and cycled the family cycle trail round the woods. It was at such a glorious day, sunshine and a gentle breeze. It felt like the air in the woods was drinkable; cool, clear and full of oxygen.

We took it pretty easy for the weekend. Everything takes such a long time now. It took as until midday on the Friday to get packed up and out; making sure I had everything I needed: my medicine, clothes to keep the sun off my skin, sunblock, my snacks for eating with my drugs.

We cycled 16 miles on Saturday, and possibly a few more on detours when we went wrong. We weren't even cycling that slowly. All the work I've been doing in the gym, going swimming, meant that I could enjoy it. By the end of the day I was absolutely shattered though. I felt just as tired as when, many years ago, I did a sponsored 28 mile walk. But after showering, dinner and some stretching, I was okay. The next day we went to Tintern Abbey and sat in the shade and had a picnic. I was tired. I'm still tired now. But I can at least live my life, as well as do this treatment.

The second reason why this why haven't been blogging much is less positive. Everything is getting, well, weird really. When I sleep, I have strange and frightening dreams, and they follow me into the day. I feel isolated. I feel I'm never really awake, and never really asleep, I'm shifting into the twilight zone. That sounds a bit dramatic, but it is very strange feeling. I'm probably not sleeping well enough, but I'm already taking Sleepeaze two nights a week and valerian two nights a week, I don't want to take any more sleeping pills than that.

At work, I don't know how I'm doing. On the one hand, I know that personally I am doing brilliantly just to get there in the morning on time and spend the day positively working. But I seem to be completely unable to judge how much work I have got to do, whether I'm anywhere near meeting my deadlines. I just do the next task, and then at the end of the day go home. I have to blindly hope that things are going okay because my brain is so unclear, so blank, I can't see the bigger picture. But I'm also not bothered about it!