Treatment 😄

Hello 😘😘😘 hope everyone is well ❤️

Robbie had appt yesterday with gastro consultant - he can start treatment ASAP 😅😢😅😢😅😢 despite my begging him not to before Xmas - he still wants to get cracking (which is not surprising - I just wanted a stress free Xmas without worrying about side effects etc) - so he will start as soon as Liver Nurses can slot him in !!!!!!! Think it's the dac/sof/riba - not much said about 'post transplant' studies etc which is my worry 😓😓 so we shall see how it goes !!!!! Although I have told Rob if he does get poorly on it then he is moving out 😂😂😂😂 from being a very positive and optimistic person - our journey has made me very negative and pessimistic 😫😫 if something can go wrong it will do and it will happen to Rob - he has spent the last week itching everywhere and has some lovely bruises come up ??? They will check bloods before treatment starts but I have a sneaky feeling his Billi will be raised and platelets low - so we shall see 😘😘😘😘😘😘

[Tatjana]

Hi Robswife, I wish that Rob does not start the treatment before Christmas but, if he insists, meet him halfway and ask him to wait until say Sunday 20th December. Please if you have not done so, go to Boots the Chemist and buy a tablet box which gives the days of the week am and pm - you just click on the day am or pm and it automatically open and clicks shut! Remember the day he starts the treatment - it makes life so much easier. xx

[RodeoJoe]

You gotta put Xmas to one side when it comes to health. The sooner the better IMHO

Good Luck!

[Hidden in reply to RodeoJoe]

It may seem trivial to others but if you knew our story you would understand why !!!! My son- niece and nephew have not had a 'normal' Christmas for 3 years (as everything has centred around rob being ill) - because of all the crap we have had to deal with I now have extreme anxiety and depression - as we have learnt - it is the 'carers' that deal with all the emotional side of things - the patient is asleep and totally oblivious to all going on around them - I remember the bleeding mouth/ulcers/itching/confusion/riba rage !!!!!! As if it were yesterday - I am sure a few weeks wouldn't make that much difference and if it did then they should have started treatment a lot earlier instead of waiting for liver to get poorly again 😢😢😢

[RodeoJoe in reply to Hidden]

Sure, makes complete sense.

[rickyrocket1]

hi hope it goes fine as it should im on the same combinAtion i had my 2 weekly bloads done and the viral load has dropped to 180000 so big drom in first 2 weeks so go for it im geno 3a hope all goes well

[Hidden in reply to rickyrocket1]

Wow that's brilliant Ricky xxxxxx robs geno 3 too 😅😅 - have you had transplant ?? (Sorry can't remember) - I know people will think I am making a fuss about nothing but like the Consultant said 'some not 1000's have been treated post transplant so it is relatively new' which translates to me - they don't really know what effect it will have on a transplanted liver that is slightly damaged and someone that is still taking a big dose of tacrolimus (immunosuppressant/anti rejection drug) - I hope he sails through it without any problems but knowing our luck 🙄🙄🙄 something will happen xxx hope you continue to feel good 😘😘😘😘

[rickyrocket1]

no im just gonna go through the vetting as such when ive finished the treatment they have put me on the list for transplant but apparantly you have to go through a lot of tests ??

[Hidden in reply to rickyrocket1]

Yeah - rob had a few days at Kings where they did lots of tests and I had to attend a 'talk' - was fairly basic - blood tests/scans/breathing tests and he had to have an angiogram to look at his arteries and heart - then they have meeting at end of the week where they discuss and decide whether to put you on list etc - sometimes they say 'you don't need to be listed yet' or similar - they will give reasons for what they are doing and they also look at 'quality of life' - which I like 😄😄 because you may not be the most poorliest patient but if your quality of life is crap (bad HE - confusion etc) then you can be listed with that in mind also - hopefully if needed they will list you ASAP and without the HCV you have a really good recovery ❤️❤️❤️❤️ xxxx

[rickyrocket1 in reply to Hidden]

thank you hope so

[dizzime]

Hi there--(As I have posted before) I was geno type 3 post transplant (06/08/13) and started the new treatment 01.04.15.--I had hardly any side affects (just a bit tired) and was clear after 4 weeks. Still clear after the 12 week and 24 week check. ALT dropped from over 300 to 40 and after a recent blood test -37. I know you have been through a lot but I couldnt wait to get the treatment and wouldn't have put it off. Only yourself and Rob knows what to do. Good luck whatever you decide. Merry Christmas and an even happier new year. x

[Hidden in reply to dizzime]

Wow that's brill 😘😘😘 well done you xxxxx sorry to ask questions - but why was ALT high ?? Before treatment ?? Had hep c started on new liver ?? Xx did you have any probs post transplant with anything ??? Xxxxxx

[dizzime]

Hi there--After the transplant I started rejecting in the October 2013, they did biopsys and they said I was tricky !!--They couldnt tell whether it was rejection or the Hep c which had started attacking my new Liver (the new liver was Hepc c free) They put me on a high dose of Prenisalone (drip) then tablets, this helped a bit. Also changed my Tacrolimus to Sirolimus. I was in and out of Leeds a few times with this and also then the Pred made me diabetic so in again with that while they sorted my insulin out. In total I had 5 biopsys after the transplant the last one going a bit wrong, basically everything that could go wrong except dead lol. ie blood tranfusions, internal bleed, going for emergancy op to glue and bead the bleeding internally, well I thought they were pushing it as I signed the form. Any way they put my MMF back up and I am still on a lot of meds considering it is now 2 years 4 months later. I keep asking if I can come of the Pred but they are still worrying about rejection. I personally think it was the HEP C not rejection but there you go. I am still mithering to get off the Pred to try and stop the diabetes. I now have a hernia where my scar is and I am back at Leeds in January for that, but they have told me that I cant have the operation while on Sirolimus so I have either to come off that or change back to the tac. Hey ho there's always something to look forward too ha ha ha. The good thing is though, since I've been cured of the Hep C all my blood tests are great and I am feeling sooooo much better. Other than that everything has been fine, i've been on holdays abroad, been camping, moved house and generally loving life. I hope all goes well for Rob with the treatment and in his and your life ahead. good luck with it all and keep positive and keep smiling. xx Ruth

[Hidden in reply to dizzime]

Wow 😘😘😘 sounds like you have had about as much luck as us 😂😂😂😂 so pleased your feeling much better 😘😘😘😘😘 see I have a theory that the interferon caused robs diabetes as its not usual to because a insulin dependent diabetic overnight ??? I hope yours goes - that would be wonderful 😄😄😄 we shall see what happens 🙄🙄🙄 can't be much worse that the other stuff 😅😅😅😅 xxx

[dizzime in reply to Hidden]

Yep determined to get rid of it, I started reading up a lot on diabetes and got my insulin change to a fast acting insulin-Humolog during the day and Lantus at night. I followed the low carb high fat diet and got my Humolog down from 105 units per day to 10 - 15 units per day. and now 9 units of lantus at night, I am not quite as severe with my diet now and managing it really well. I am hoping that once I am off the Pred I will watch my carbs again and hopefully be able to control it with diet only or maybe just the night dose of Lantus. Here's hoping xx