3rd Day Flu

On monday, the day after my injection, I felt good enough to go for lunch and do some shopping. When I got home though I was so tired I slept for 3 hours and have been very tired all week. I started to feel a bit shaky on wednesday night then ran out of paracetmol and had no urge to go out for more, so I decided on an early night and hopefully i'd feel better in time for work on thursday. I couldn't sleep though and was up during the night a few times feeling pretty bad. This is the 1st time i've had flu like 'sides' on the 3rd day and even on thursday I hadn't really recovered. I got some more paracetmol in the morning and phoned work to say I couldn't make it in that night. My boss was ok but this is the 1st night i've had off since I started this job and I want to keep on his good side without disclosing details about my health.

My concentration has been bad too and i've not felt motivated to do anything, though I do feel as though the anti-depressants are having a positive effect on my mood. I cant help feeling as though i'd like to crawl under a rock for the next 5 months or at least under a quilt. I know that this time is probably going to be full of highs and lows and i'm now positive that this is just a low that will lift.. this time last week I would have considered giving my drugs back to the hospital and stopping treatment, now i'll be damned if i've gone through the past 5 weeks for nothing.

The dizzy spells I was experiencing last week have eased slightly so hopefully this is my body adapting to the lowered haemaglobin. I also remember when I was last prescribed anti-depressants that without a 'mult-vitamin' each day I got a lot of coughs, cysts in my eyes and cold sores. I'm on a different antidepressant now but I dont want to take chances with lowered immune response so i've started taking a vitamin each day. I know i should have discussed this with my nurse first but i'll explain on wednesday and hopefully not incur her 'wrath'... :o)

On the subject of eyesight, i've had days where I felt as Jonathan described since starting treatment. Like my eyes feel too big for their sockets, very odd sensation that one. For me though, my focus gradually got worse. I was squinting while driving and reading and at times couldn't make out text on my pc. I went for an eyetest and confirmed on the health declaration my hepC status. The optician asked me a few questions, notably 'are you on treatment?' I hadn't really considered this until now as at that time I'd only just been diagnosed and treatment seemed a long way off. I was also confused by all the things that were happening to my body and wasn't sure what was related to hep C and what wasn't. I told my gp about these thing at the time only to be met by a 'blank look'. At the time the optician prescribed me glasses for reading which I now wear constantly at home but I do feel that my eyesight has worsened since then. After reading Paul's post on eyesight i've decided to go for an eyetest next week. One niggling thought in the back of my mind though..... what if it's just my AGE?!

I'm going to go out on monday and stock up on paracetmol, I dont want to get caught short again next week. I realised on thursday morning how beneficial it is in easing some of the 'sides'. I had been using it previously but more for the joint aches and headaches. I've used it more this week to keep my temperature down and subdue the 'flu' and it works well.

This post has been hard work tonight and may well be a bit 'scatty' but I have 'foggy head' so it'll have to do.

#6 tomorrow

Injection #5

Having taken on an extra shift at work, my injection was a bit later than normal tonight. I took Sue's advice, keeping the bevel pointed upwards, glad to report no repeat of the 'pin the tail on Alan' routine. The injection this week was actually harder to get out of the box and physically 'do' this week due to me being slightly worried about the same thing happening again. So i'm glad it's done, and since its number 5, I'm now in the 'teens' with regards to injections still to do. It's a minor milestone but at this early stage they all count. One thing I haven't been able to get over is the thought of injecting into my abdomen. I just have an aversion to doing it there but i'm fairly tall so hopefully I can stick with my thigh, my handy red patches serve as a map so I can use a new spot each time.

My mood has improved too, the weathers been nice this past few days and i've even ventured out in a short sleeved shirt, despite the bruise on my inner arm from my 'bloods'. I also noticed that my 'sharps' container now makes a healthy rattle when I shake it and that sounds good. I'm no longer a 'newbie' on here having got by the 1st month and dare I say it...my 'sides' do seem to be settling slightly. I don't get as many aches and pains as I did in the 1st few weeks and my concentration has improved. I just wish the dizzy spells would ease though, I had a few moments in work tonight when I suddenly felt a bit faint. I found sitting down drinking some water and taking deep breaths helps this but since my employer isn't aware of my status or that i'm on treatment, it's not always possible.

I've been wondering if anyone else has suffered from eyesight problems, not from treatment but as a symptom of HepC. I noticed over a short period, approx 6 months, that I was straining my eyes a lot trying to focus. It was getting worse and after an eye test I got my 1st pair of glasses, couldn't manage without them now. I also feel that my reaction to light has changed, in the dark for instance I cant see as clearly as before and in daylight my eyes tire quickly. I suppose i'm hoping that this will improve if treatment is successful.

Back on track

I had a phone call yesterday morning from my nurse with the news about my Haemaglobin, I've dropped but not significantly enough to need any action for now. I'm still having dizzy spells and looked a bit 'grey' the other night but i'm dealing with it better. I just have to stop what i'm doing occasionally, sit down and take some deep breaths. This seems to relieve it but i'm sure being a smoker doesn't make it any easier. I also discussed with my Nurse a drug called Epoetin, which someone pointed out was being used at another hospital in Scotland. It stimulates the body to produce more hb, thus reduce anaemia. Unfortunately its not being used here with hepc patients but my nurse is a member of a group which are pushing for it to be used in conjunction with combo treatment. She was interested to hear about this other hospital and she reckoned they are maybe running trials.

As for the anti-depressants.. another minor drama when my nurse asked me to come back in and see another doctor next friday. The thought of going through a another week with still no action being taken made me come to the decision to stop treatment. I explained to my nurse that I felt it would be too stressful and that I wasn't going take my Ribavirin or my injection on sunday. I had actually made my mind up on thursday that if I didn't get the help I was promised, I had no choice. Thankfully my nurse realised that I was completely serious about this and rang me back 10 minutes later to say she would personally hand in a letter from the hospital to my GP's office. I had a months supply of Citalopram in my hand within 2 hours of her call. This really made my day.. I don't know if my nurse reads this, but if so.. thanks for going out of your way to do that for me yesterday and for understanding why I was perhaps a bit abrupt. My mood has improved already, probably since I know i'll get some relief from the depression now.

Thanks for the comments about my photo on thursday night, I'm fortunate to have a great view across the city and photography is a passion of mine.

Sleepless in Glasgow.. 

Walk don't run..

Today I had my weekly hospital appointment and managed to speak to the psychiatrist briefly. He is happy to prescribe me an antidepressant as long as the liver specialist is ok with this, should be no problem and hopefully i'll get my prescription by friday. I had my app on tuesday canceled at short notice which left me feeling a bit fed up, but if anything I think treatment may teach me to be patient.

I'm beginning to realise i have to pace myself with things i want to do, sometimes the slightest physical effort leaves me dizzy and breathless. It seems to have been worse this week and my nurse commented today on how pale my skin was and that anaemia may be a problem. The consequence of this could mean a reduction in the amount of drugs i take and though the thought of less 'sides' is appealing, I want the treatment to work.

I collected my next lot of medication today, just when i was getting used to the empty plastic container in the fridge. I found it quite funny that my nurse mentioned that I should return any extra Ribavirin to the hospital. I have approx 200 tablets and with only 4 weeks gone it seemed a bit absurd to be reminding me of this just now. Perhaps the end of treatment is easier to see for my nurse than it is for me.

Injecton #4

Injection 4 last night for some reason was painful and took 3 attempts to get the needle in. I'm getting very frustrated that i dont seem to be getting anywhere in my attempts to get help for the depression i'm suffering. I'm wondering if anybody is taking me seriously when i tell them how bad i feel.

Back to work and 'riba-rash'?

Just got home from my 1st shift this week and all went fairly well. Still got this lingering sense that 'somethings about to happen', its hard to explain but i took a valerian tablet and that settled me for a bit. Gonna be working 3 shifts this week so my mind should be kept occupied.

I got a phone call from the nurse today concerning anti-depressants, since she is only covering for the week and the consultant is new, not met him yet, she would prefer that my own nurse spoke to the psychiatrist i saw on monday. I felt a bit fed up about this since the 'happy pills' take approx 4 weeks to build up in your system, so i wanted to start asap. I'll get by till monday though, get stuck in at work and i wont have time to dwell on anything.

As for the rash.. ok this is odd. I had a bath today and when i was getting dried i noticed this rash across my tummy, like lots of small red spots bunched together. I've started to use baby lotion on my face after shaving so i tried this on my tummy, lotion that is.. not shaving. Having just had a look when i got home the rash seems to have vanished.. not even a trace, either this baby lotion is damn good or it was just a reaction to the warm water.. but i'll keep an eye on it.

Hospital Appointment #3

After yesterdays 'rough time' I felt a bit better today. I still feel a bit anxious but the black cloud from yesterday is receding.

My nurse is on holiday this week so i saw a colleauge and explained about yesterday. I think i need to take something to stabilise my mood so we discussed anti-depressants and i'm now willing to give them ago. Despite the way i felt yesterday i am committed to seeing this through to the end. The benefits of having a normal life back far outweigh the problems of treatment.
I'll hopefully get a phone call before the end of the week to speak to my consultant about this, my nurse though says there should be no problems.

I got some numbers from my nurse concerning my blood counts, but they are results from the week i started treatment, 3 days after my 1st injection so i'm not sure how much they will tell. Admittedly i'm not too clued up on what these mean so any comments regarding these would be welcome:

Neutrophil - 2.7
Haemaglobin - 150
White Cell count - 6.7

My nurses opinion is that everythings fine so i'm not worried about these just curious as to what they mean.

As for the cycling.. that park ain't seen the last of me!!

Next time though i'll be more sensible, i'll follow Jonathans advice to get my excercise the day before my injection, and stop 'slacking' on my water intake.

Bad Day Part 2

I think an explanation about my earlier post is needed.. I did consider deleting it but I think its important to document how I felt.

I got up today feeling more down than I have since I started treatment. Its scary how quickly feeling a bit fed up can end up with me being very depressed. It seems to be the 2nd day after my injection that this is appears and today i've been wondering whether this will get progressively worse as treatment goes on. I'm now worried that as the levels of the drug in my system increase the depression wont lift a few days after the injection. After only 3 injections it feels a bit pathetic to consider giving up treatment, as I said before I'm very lucky to only need 6 months treatment with a high chance of a complete recovery.

I thought it would do me some good to get out of the house this afternoon so I decided to go for a cycle round the local park. I almost gave up and came back after I got halfway along the road and got very breathless. I decided to push on thinking the exercise would do me good and take my mind off feeling down. Eventually I got to the park after a couple of breaks to get my breath back. This was a bit worrying, i've never considered myself to be 'fit' but the effort it took just to get the park was tremendous. I'd set out a route to take round the park that I thought I could manage ok and wasn't too far, the plan being to do the same at least once a week. It would have been a good idea to check the weather before I left, as i got to about halfway round the park hailstones started to fall and it got very windy, so i stopped for yet another 5 minute break under a tree for some shelter. As i stood there thinking i wish i'd never left the house, the tears started to roll down my face. This took me by surprise, I must have been a pathetic sight but thankfully no-one was around. All i wanted to do was get home, leave the bike and find a taxi. I eventually got back on the bike and decided to push myself as hard as i could just to get home as quickly as possible.
By the time i got back i was soaked through, my body and head ached and i felt shaky, sick and breathless. I took a couple of paracetmol and wrapped myself in a blanket and lay on the sofa. I'd been out for less than an hour and had cycled approx a mile. I dozed for an hour and woke up still clutching my keys and phone. This was about 5pm and all i wanted was for it to be time for bed. I thought i'd write my blog but the earlier post was as much as i could face writing.

I find leaving my posts beneficial but i miss having a partner to share things with, but maybe thats a selfish thought... i wouldn't want to live with me right now. I've spent this evening on an rollercoaster of emotions, mostly thinking about my son who lost his fight against leukaemia in november 1999, and waiting for bedtime. I dont know how i'll feel about treatment by tomorrow but i do hope to continue. Its going to be difficult to do my injections if my emotions hit such a low every week, the physical 'sides' I can handle if the emotional ups and downs (mainly downs) weren't so bad.

Bad Day

Been very depressed today, going to discuss with the nurse tomorrow whether i can carry on treatment.

Injection #3

Since getting the sleeping pills from my 'gp', i prefer the term charlatan.. my mood over the past week has been much better. Injection number 3 passed with no problems and my app with the psychiatrist went well. I told him about the incident with my gp and he's going to write to him. We agreed that the lack of sleep is the most troublesome side i'm experiencing so he prescribed me more sleeping pills. I'm aware that its not a good idea to be on these things long term but my liver is the priority just now. I intend using them sensibly, alternate nights or not at all if not needed.

I'm glad to say i feel ok today, no flu symptoms but the mild ache in my back is still there. This doesn't seem any worse the day after my interferon and some mild stretching gives me some relief.

Have to give Nick a mention concerning his comments on sleeping tablets... had me in stitches yesterday, no 'strange' episodes like that.. so far!

I'll ask my nurse on wednesday about the 'rheumatoid factor' that Sue mentions in her comment, I must admit i thought the pain in my hip was because i needed a new chair so thanks for pointing me in the right direction.

Some good news..

After spending the day yesterday doing very little, i got a good nights sleep last night and got up today felling pretty good. I say pretty good, a mild backache and a my hip was pretty sore, though this tends to ease up once i start moving around. Until i read Wendy's posts from the last few days (link on right) I had no idea this was hepC related, and not surprisingly neither had my GP. Other than that no complaints.

I noticed this morning i had a message from the GI nurse, she's managed to get me an appointment to see the psychiatrist at the infectious diseases unit a bit quicker than she thought, its on monday!!

This news added to me having a good day and since tomorrow is injection number 3, i can look forward to 'checking another box'.

Doctors and Nurses

I had my second appointment with the GI nurse on wednesday and was able to discuss the attitude my GP had on monday. In his opinion, due to the sides i'm experiencing, i should "stop treatment immediately"... so there i was, explaining the consequences of not following the treatment through to the end, to my GP!!

Since i took a fair amount of preparation to start treatment, in terms of mental attitude and reorganising my life to fit around hospital appointments, I dont intend stopping treatment. Anyway back to my app on wednesday, when i explained what had happened my nurse rolled her eyes and said they've had problems with GPs before and perhaps i should see another doctor at my surgery. I'm mildy put off at the thought of explaining everything to another gp but needs must.

The good news is my liver functions are near normal, I suppose i'm a lucky as they've never been too elevated, but its good to know the drugs are working.
On the emotional side, one of the hospitals here has an infectious diseases unit who treat many other hepc patients. I dont think they have a counselling service for patients, but they do have a consultant psychiatrist who sees patients undergoing treatment, so my nurse is going to refer me. Could take 5 weeks for an app though.

I told the nurse about my sleeping problems and she was able to provide me with a short term supply of sleeping tablets (zopiclone). So i finally got a full 8 hours of chemically induced sleep on wednesday night.. it was better than 8 hours of chemically induced insomnia. It was good to get some sleep but of course the other side of the sleeping tablets is that you dont exactly wake up feelling refreshed, but maybe i'm splitting hairs now.

I've felt fairly good this week, despite being a bit listless I got my bike out yesterday, next step is getting it out of the house.. hmm..

Alan

hmm new to this but here goes..

Ok let's get the basics out of the way... I tested hepC+ almost 3 years ago and have recently started treatment. I have been inspired to keep this blog more as a journal for myself while undergoing treatment, if however, my experiences prove useful to anyone in a similiar situation.. well even better. This is not supposed to be a guide to treatment and its side effects, just my way of recording my thoughts through this time in my life.

I started my treatment on the 27th march 2005 and am receiving combined interferon and ribavirin therapy... this consists of tablets taken twice a day and a weekly self-injection of interferon alpha 2a.

Before i started treatment i discussed at some length with my nurse at the hospital the implications of treatment and the side effects i could possibly experience... these i'll go into in some depth at a later stage but suffice to say i've slept no more than 3 hours a night since starting treatment. I seem to have slipped into a fairly depressed state over the past weekend and while i'm aware that this is a major side effect of treatment.. its not much consolation when your lying in bed wide awake at 4 in the morning feeling hopeless. Will speak to nurse about these issues at my weekly check on wednesday.

Anyway i have to try to be positive.. i'm fortunate that the genotype that i have requires a 6 month course of treatment while others need a 48 week course.


I'm on week 2...

22 to go...


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