FEELING ANXIOUS...

[sugarandspice44]

Was at the hospital yesterday to see doc & bloods, 3 hrs later as I got in my front door the phone rang, it was the doc I'd see earlier saying she'd already had my bloods back & that my haemoglobin has dropped yet again & she thinks its the ribavirin that's doing it!! So I've now bn told to only take 1 of those a day instead of 3 & now got to see her in 2 wks time instead of 4 wks as originally planned!! Their saying that if haemoglobin dropped too much would need a blood transfusion & come off treatment altogether!! Not an option I want to think about!! So I'm OK but feeling quite low in mood, worrying about it all, I know that worrying isn't going to help matters, but sometimes things tend to get the better of us, gonna try & get out for a while tomorrow so I'm not sat around thinking too much, just thought I'd give you an update as you've taken the trouble to take an interest in me, hope your doing well still and bn making the most of the beautiful weather we've had, take care, lots of love, Julie x

[Sillysausage234]

Hiya Julie 🙋🏻‍♂️Sorry to hear your treatment is causing problems,don’t know anything about haemoglobin stuff I’m sure Lucien will come along soon,she had some trouble with ribivarin too,hope you do keep yourself busy and take your mind off worrying about it ,take care and stay strong your doing great 👍 x

[Hidden]

Hi hun same happened to my but other way round mine went two high over 150 I took 3 morning 2 night they told me to stop taking all them told me take 1 twice a day it’s soon went back to normal try not to worrie I’m shore you will be fine

[Phillipaussie]

I hear you Julie, I too had hospital Friday, met my hep nurse,sat down expecting to hear about the how's whys and most importantly the when I'm going to start my treatment, she began by saying my blood results are all they waiting on,then checked and they had in fact arrived,she then told me that I did not have a blood disorder that runs in my family,I have been tested all my life and had both my kids genetically fingerprinted, before they born...I had done everything to safeguard me and mine,a medical research now says that to test for Porphyria... Blood and urine need to be collected in the dark, light kills off the bit they look for...she then told me I do have not what my symptoms have indicated, but chronic Porphyria,that has lay dormant until I became ill. If I Start the proposed treatment it would end badly,so Off I go home with my inherited death sentence, cruched it over the weekend, on my own, no support for me,no one wants to know,today...after finally selecting a way to end it all I got a call from my nurse,who informed me that she had given me a wrong diagnosis,It was very nearly a waste of her time calling me,non the less,I'm here,I'm in remission, treatment starts 4 may, 8 weeks, fingers crossed.

More importantly,I hope things sort for you really soon,we are strangers but have a lot in common,or we wouldn't be on here,any time you want to chat,by all means go for it.if we can't help eachother, what's the point. Take care,wish you better,thanks for letting me read about your situation,hope mine makes a good read... Look forward to catch up when you can manage it. PHIL. X

[Sillysausage234 in reply to Phillipaussie]

Glad your feeling up to posting now phil and made up your turn is nearly here,8 weeks treatment is that the Maveret shuffle 😊hope it goes well,sure it will.

[Phillipaussie in reply to Sillysausage234]

Thanks Alan, they have told me its Harvoni, 8 weeks with 95% chance of clearing my hep. Still in the nightmare phase of all this but as you say I too hope it goes well.Getting a wrong diagnosis then being left to chew it over was the biggest shock. perhaps as we get closer to starting and with nothing else going wrong I may have a chance,cant wait till I can get on here with some good news,greatfull for everything as we all are. catch up soon and thanks for your feedback, little things mean a lot in times like these.

[Sillysausage234 in reply to Phillipaussie]

I hear harvoni is ok Phil 👍and you don’t need any news to come on here pal just having a chat with others helps the site all around enjoy your day.

[Lucien777]

Hi Julie, sorry I have been so rubbish at replying lately 🤔 just saw this post. Did they say if they will retest your bloods as well in two weeks? It was the same for me I had to have two weekly bloods instead of four all the way through treatment due to the haemoglobin dropping. Mine was 97, and had Ribavirin reduced to four a day, was on five a day before and had started out with six a day! So took ten tablets in total, only eight now lol. Mine dropped to 10.8 then two weeks later to 10.3 and then 9.7. I'm thinking that your haemoglobin will go back up due to reducing Ribavirin. I had mine reduced to four a day at Hb 97 and after two weeks had another blood test, which they didn't ring me about so I'm assuming that it has gone back up. There isn't much advice I can give on what to do to make it go back up, as it's not the same as iron deficiency anaemia, bit maybe try and eat lots of veggies, green ones and I have read somewhere that there was a study that omega 3 fish oil helps with Ribavirin induce aneamia, but obviously don't take my word for it. I was told not to take any supplements, but I have started eating the occasional mackerels in sunflower oil, which luckily I like anyway 😂😂😂. The reduction should have an effect quite quickly, and hopefully your heamoglobin drop can be reversed. Please let us know how it is going. They never told me that I might need a blood transfusion, but I think they just didn't want to scare me, because I researched it myself and knew that if it goes really low then you will need one, but at 10 you are still far off needing one. Hang in there and try and keep positive, it's a though treatment, but will all be worth it in the end 🙏🍀🍀🍀👍🌈🌈🌈🌈🤗xx

[Sillysausage234]

Hi lucien 🙋🏻‍♂️Youlle be joining Cathy in Portugal soon😎👙👠😊x