Diary of Hepatitis C Treatment Patient
Day One
10.30: First injection had to be done in front of the nurse so she was comfortable to let me do them myself.
This was done in the Clinic in Hull, I was told I had a couple of hours before anything would happen.
15 minutes after the injection, I started with flu like symptoms even worse than man flu ! Stomach cramps, pains in the arms and legs. Would I ever get home? Sweat?!? I thought I’d been in a Swedish sauna... I crashed onto the settee with a quilt over me and tried to sleep it off, but it was just like a bad dose of flu. I took the pills at 9pm (with food that I had to force down) the night was long and restless - sweating shivering and just feeling yucky......
Day 2
I’m still here so I’ll survive!
All the joints in my legs and feet were stiff and I had difficulty moving around. I was still having the sweats. Mid-day ‘ish’ I started to feel a bit better. I had something to eat and bang went my head. The pains came back and I’m feeling yucky again. Back to bed for another sleepless night, sweating and peeing almost on the hour, every hour.
Day 3
Restless night but I don’t feel too bad. Came out in a rash and my tongue is swollen, saw the GP and got some pills to sort it. I’m a bit fuzzy headed but better than I was, so fingers crossed, I might sleep tonight.
Keep looking this is only the start, im sure things will settle down as time goes on...
Day 4
Well here I am again. The rest of the week was ok. I just felt a little rough, which was only to be expected. I just need to sleep and let my body recover from the treatment.
Monday - again back at the clinic, bloods taken and I await the results. I’ll get them next week.
2nd injection -no flu symptoms this time. It just hit me like a bus. I needed to sleep it off. My head is all over the place and I feel like I’ve been on a boil wash. I had a very restless night, up and down. Coffee and a smoke keeps me going. I’m off food, so I’m just picking at things as and when. I can taste tea in my mouth though I haven’t had one! I’m eating with my pills - porridge (various flavours), and my forticip drinks to keep my vitamins up. I’m feeling tired so going to try and sleep. It’s a new day tomorrow. It must be working or I wouldn’t feel so bad.
Day 5
Well yesterday was ok (or so I thought). I went to do some gardening and whoosh! I wished I hadn’t. I didn’t realise I was so weak. After getting up and shoveling pills down me with a bowl of porridge I tried, but just felt washed out.
No appetite, but forced a ready meal down me (roast something dinner) could have been anything ha ha .
Feeling very weak and plodding on. I had a restless night - up and down. Coffee and cigarettes! Not the best combination, but hey I’d run out of custard creams... !
Thursday
I had to get myself together as I promised a client some support. There’s always someone worse off than yourself! Feeling drained, I did what was needed of me and it made me feel better that I’d helped someone else sort their problems out. I came home and still off food I’ve had to force myself to eat to keep me going. My head says yes, my body says slow down and sleep.
I’m going to try for a good nights sleep. I’m sure things will be better in the morning..
It’s good to know there are caring people at the end of a phone should I need anything. I know I’m not alone. Thank you B.P for your support. It is welcomed and needed. Things should start to settle down in a few days, when my body gets used to the treatment.
Monday
I got myself over to Hull for my appointment with the Hep C nurse and explained how I felt. It was no surprise to her as she sees it all the time. My body felt like it was giving up and closing down but I was fighting it with all my might. I have lost 3kg in 3 weeks so I’m on liquid feed forticip 3 times a day as I cannot face food. I have been forcing porridge down me though and picking at things as I fancy them.
I changed the times of my tablets to try and re-start my body clock. This unfortunately hasn't helped, so I’m going back to the normal times to coincide with my other pills. It’s like a meal in itself ha ha .. I had my injection later in the evening so I could try to sleep off the effects. This was slightly better but I didn’t sleep very well. Tuesday and Wednesday came and went. Between bed and the TV, (thanks for Sky) you can watch your favourites when you’re awake.
Well it’s Thursday and I’m feeling a little better today I got a few hours sleep. My head is clear so I’m going to make an effort and do some pottering about and catch up with general things. I might even brave the shops.. I’m sure things are going to get a bit easier once my body is used to the extra work its having to do..
Good Morning, it’s me again. Well, I got over the weekend without too many problems. Then it was the clinic again on Monday. The only concerns are my weight and sleep pattern, but apparently this is normal. I was prescribed a sleeping pill but it didn’t seem to work… I was up at 2.30, then every hour there after…it must have been a placebo lol...
Things are getting easier as the treatment goes along. I think my body is getting used to the Interferon and knows what to expect, so it is dealing with it in its own way. I’m feeling better but still very tired. Next week I’ll have my Hep C virus levels checked and they will be able to see if the treatment is effective. Fingers crossed. I’m sure it’s working or I wouldn’t feel so crap…
Good morning, sorry I didn’t add anything last week but I was in a pretty bad way. I had my bloods done and I’m waiting to see if the treatment is working. Fingers crossed. I’ve had my pain killers altered back to a stronger one as the Interferon causes pain to be increased. I had my injection last night and slept through until 5 this morning. I had a drink and went back to bed, and I’m now feeling ok “ish”. I must be over the worst. I’ll see how today goes and look forward. I’m still not eating but I’ve started to fancy odd things, so when I get the urge I try and eat it, anything is better than Forticip. Before I forget, I’ve done some research into how the treatment affects others and some just sail through it without feeling too bad. Lucky things. I think my other problems caused me to feel the way I do but it’s now getting easier...I’ll keep you posted.
Good morning to you all, what a week! I was all set to throw in the towel but I got a phone call from the Specialist Nurse. This lifted me and helped me realise I was feeling a little selfish. I am humbled by the treatment I receive and appreciate it. The Hep c viral load has gone down considerably. Phew! This has given me a lift and helped me to plod on with things. I am in Hull on Monday to see the Dr and the nurse it will be a treat to leave these 4 walls lol... I managed to eat some food yesterday. That did cheer me up as well I’m planning on doing some bits today as I don’t want to miss the crisp morning. Here’s to a good weekend ;-) see you all soon.
Good day to you all, sorry there hasn’t been any news for a while but things have been a bit up and down. The last Clinic visit showed my platelets as being low (this is to be expected) It’s made me very tired and weak all the time. All I can do is rest. Things in general don’t feel as bad now. I try to do a task each day to keep me sane... my tongue has swollen again and I’ve not eaten any solid food for over a week. I’ve got my liquid feed, so I won’t starve to death. I feel like a tomato plant lol .. I’m not back at the Clinic until 24th November, so I’ll get new blood results and be able to see the progress then. P.S I think I’ve cornered the market in Lucozade!! Thankyou for the support of all, it helps me keep going. I’ll update again next week. Stay well x
Hi all, sorry I haven’t updated for a while but I was in hospital for a while... my blood cells hit an all time low. The staff at Grimsby was marvelous but didn’t understand my condition; they did keep me alive though! I have had to stop my interferon but may be able to start again soon. Hull are having a meeting about me on Friday. I’m feeling very weak and limp, so to speak, but I’m not giving up yet - even though it’s crossed my mind to stop all treatment and let things take their course. I’m lucky to get the care I’m getting, so im pressing on and I’ll win the battle... Take care and bye for now x
Good morning, well! What an eventful time! I’ve been off the interferon for nearly 2 weeks now but still on the pills. I’m feeling as I did before I started the treatment, but I have got some energy back and I’m eating real food again. The consultant wants to re-start me on it this Friday though at a lower dose. I’m scared that it has the same effect knocking my blood cells for six.... I don’t think I can cope with it physically or mentally but I think I’m willing to try. I’ll let you know what happens…..
