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.
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.
posted by Alan at 11:30 PM
6 Comments:
Hi Alan,
It sounds as though you have a good nurse there. I made an incredible fuss about epooetin before I started treatment. It is used in the UK for cancer chemotherpy treatment but not for interferon treatment.
Did you know it is on the list of the 10 most expensive drugs available.
How far has your haemglobin dropped? Mione went from 15.5 before treatment and is currently sitting at 12.9.
Done any exercise this week?
Jonathan
Hi Jonathan,
I think I have been lucky with my nurse, very understanding and patient considering the restrictions of the nhs. She told me that epoetin was being used here for patients on dialysis with good results and if it means patients can have a better chance of success on combo, then it should be used for us too. It's good to know that there are nurses out there taking the time to form groups to push for new treatments on our behalf.
My hb has gone down to 13.0 so its not too bad. Hopefully it won't go down much more.
I haven't managed any exercise this
week, I took on 4 shifts over the weekend so i've been fairly active. Last one tonight and home for injection #5.
Stay well
Alan
Hi Alan,
I'm very glad that you've finally received appropriate attention for the depression you've been feeling, although somewhat shocked that it took a decision to stop treatment to actually get it! Your nurse sounds very good.
The ribavirin anemia here is treated with epoetin. The anemia must be quite severe before they treat though. I'm actually in a study monitoring tratment-induced anemia. Haven't been a great candidate for them... my hemoglobin has actually gone up on treatment (was around 125 on starting, now up around 135). No complaints there!
Great that you're feeling better!
Sue
Hi Alan,
It is truly staggering that you had so much hassle to get your ssri`s.
Your gp sounds like a complete usless t***.
Your nurse on the other hand is a star. I have my nurses mobile number and have access to her 24 hours a day - except when the footballs on.
If she gives the OK for ANY medication I phone my surgery and it is ready same day.
I didn`t realise how lucky I was till I read the experience of others like yourself.
Try not to dwell on it and hoping that the pills kick in ASAP.
Paul.
Hi Sue,
I think i've unfortunately been involved in a 'too many cooks..' scenario, each doctor not keen to go ahead with anything without the ok from another. I'm just glad its been taken care of now.
Stay well
Alan
Hi Paul,
Now if only my nurse liked football the world would be near-perfect!
Thankfully my nurse has in a way made up for my gp's attitude by being supportive and patient with me on the couple of occasions i've thought about chucking it all in. It's pretty clear that my nurse and others i've read about don't just 'switch off'at the end of their day. We'd all find this so much harder without their dedication.
Stay well
Alan
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