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I agree Inspector Gaj
– The Gall bladder, complex digestion & bile issues beyond my knowledge seem to be the most likely suspects and symptoms do appear to be worse after eating and for me, at night.
Officer Girl.
Good morning Countless
The answes to your questions are no and no.
The best support I have had during the past year are from the good people of this forum, a few on the UK forum, MonkMed and Dr Freeman.
Over time I have been lucky to have found a few kind & supportive people within the UK NHS among the ‘less supportive’ – There are some amazing people out there, but you need to seek them out. Unfortunately I cannot name them, but they include a patient advocate medic, my GP, a lovely specialist nurse at 5+ months in, an awesome IV spec. nurse and some extremely pro-active Drs in the health system who are sticking their necks out to help HepC patients here in the UK.
In a personal sense not really and at work, none, not possible.
I have learned over this journey that the best people to support you are those who are walking or have walked in your shoes. At 12 weeks post treatment, I am very glad I limited who I told. Apart from anything else, HepC is a complex condition and naturally many people don’t understand the ins and outs. Many don’t understand how ill you can feel when you are seemigly ok and it can be labourious trying to explain. I told 2 people, one started out supportive and then stopped asking and changed the subject, the other supportive but didn’t like to talk about it. There is one more person, who I will lose soon and I find hard to talk about, they went untreated for years due to medical / admin errors / lack of knowledge and bureacratic restrictions mainly, and are losing their battle. Devastating.
As I have stated in my blog update this morning, this is the best place you can be for advise and support, that is my truly honest advise from my experience over the past nearly 3 years since diagnosis, the last year here and from the bottom of my heart.
LG
Dear all,
Sitting here trying to keep busy, waiting on my SVR12 result to come back from the lab.
Since I started tx early Jan until now, some weeks flew by and some weeks dragged. Post tx went quite quickly for the first 10 weeks, but the last fortnight has been on go slow – and these last few days are positively crawling!
I’ve been catching up with all the newer folk and reading some old posts remembering those early birds fondly, as someone else said, every SVR has been a joy and triumph to me and the few relapses I feel from the bottom of my heart.
Whatever the outcome for me personaly, I would like to wish everyone here my best wishes for good health, especially those who have had to take on another treatment.
You are all in the best possible place to beat this damn virus
I am so much better physically and mentally since embarking on this journey and so grateful to Tim, Dr Debasis at MonkMed, Dr Freeman & Fix HepC, Greg J for starting something good and all of the generic rebels here who have shared their advise, support, friendship, empathy and good humour throughout the ups and downs, without you all I would have surely gone mad! You are all awesome! Words cannot express …
Well, I wasn’t going to write a speech ha ha but, sitting here over my morning coffee, waiting for my results and reading a few old posts along with latest news, has kind of made me remember the past year and got me all teary !
I just want to send my warmest wishes and BIG
and admiration to you all LG
I’m pleased to tell you, Nadia and dointime are both clear
I miss dt on here actually. Lovely person and Nadia too, the UK trailblazer along with Dan , who is now also clear
I remember those days Kevin, Glad to hear you’re doing well and dancing like James Brown too
Things have changed for the better so much since those uncertain and exciting days offering hope…
Just awesome .I’m waiting on my SVR 12 results, Hope my next treatment is at the dentist, like you
My best wishes to you from Blighty.
LG
Don’t start me off getting teary again now Fitz !
Wow – Some very in depth reports there! Thank-you Dr F.
Am I right in seeing that Sofo/DAC has a tiny edge over Sofo/Led (ie 1%) for GT1s?
I tend to phase out with graphs a bit
It’s a toughie Countless isn’t it, especially when you are still in shock from diagnosis.
When self-employed it’s extremely hard to be off sick.I’m sure once you’re on treatment, you will feel improved and will be able to deal with looking for new work and all that comes with it better. I was a big time hermit after diagnosis, mostly my communication was just the good folk here, also SE and managed to keep working throughout with fake smiley face! I’d get out of bed some days, work, and then go straight back to bed immediately after, as time went on, on treatment, things slowly improved and now, 12 weeks post treatment I am slowly starting to engage with the world once again. Thankfully.
I also felt like I needed to rest and help my body heal during treatment, I hope you can find some work that isn’t too physically taxing? but really, work was very physically doable during treatment. The good thing was, that working really took my mind of it all, prior to treating, during and after
Wishing you all the very best to get started soon with treatment and find something suitable to keep the pennies coming in.
LG
Why thank-you Fitz
We shoxuld start a ‘Mutual Appreciation Society’ ……..Oh, wait a minute ………
So much appreciation for the good people here.
Big to you and all.
May I be the first to congratulate you HG?
Fan-flppin-tastic!My warmest congratulations to you, delighted to read this good news
LG
Hot Dawg !!
– Love Ariel’s little expressions ! and loving all the good news I’m reading Fitz
Hi again Countless,
Just thought I’d add, that I was on treatment for 26.5 weeks in total and didn’t have any eye issues. I’m a very small build too and took 3 medicines for the last 4 weeks, I was prone to tiredness and would nearly pass-out when I needed to sleep, but nothing more. Amazing really I had insomnia pre treatment, so this was also a bonus, In fact, I was nervous about stopping the medicines if anything! I used to get ‘ eye ache’ pre treatment and that has now completely gone.
My Doc told me inflammation can cause alot of issues, when you start taking the medicines they reduce inflammation within a few weeks and so many feel much better quite soon into the treatment because of this.
I was warned that the first week, I may feel midly fluish and was nervous about that, but it never came. I did get a chest infection mid treatment, but I have always been prone to these and we were mid winter in the UK and many people without the virus had chest infections and flu around here.
I found the first month I improved so much and got a spring in my step (previously suffered joint pain) , then as I say a chest infection, antobiotics cleared this up, then the rest if my treatment a gradual improvement, especially noticable was my improvement in mood and I slowly started to engage in life again after being totally withdrawn from life for the last few years.
My feeling is, any side effects are much less severe than having the virus attacking your system all round, untreated things could and most likely will, get worse.
I am so grateful to the good people here, I am waiting on my 12 weeks post tx results, even if I were to relapse, I am SO much better than those dark days pre treatment and my liver function is all within range and fibrosis has gone from 8.7 pre treatment to 4.7 – 5.7 at end of treatment, there’s no doubt I am also a much happier person all round too.
I hope this info gives you the short version of how the treatment has been for me, there is much reading in patient experience here, and can take some time to get through
Best wishes, LG
