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Hi LG,

Partly because of being encouraged by your success, I complained to my bloods service about my recently painful and bruised arm. I asked them if they could supply a butterfly system instead next time. They've responded. Yes they can!!!

I just had to come on and tell you because I am so stunned at actually getting a positive response instead of a look that implies I must be a two-headed Martian to ask for something non-standard. I guess that reflects my sorry experience up until now. I'm all unsettled and a bit excited that it actually worked.

The formula for success:
REQUEST. COMPLAIN. REPORT.

dt

Yay - Good for you DT - I mean, why should be made to feel 'difficult' when we know we need a butterfly needle - I mean, we are of a certain age, I'm sure we've worked out such a simple thing after some (bad) experience. So will that be on your notes now?

On Twitter, I get alot of medical conference, think-tank, nursing news etc latest - There has been one article recently, "Do patients that complain get a better deal" - The answer was a resounding 'Yes' - This from medical staff. They said it was easy to forget people/things unless patients brought things to their attention. I can understand that, they must be so busy, but the point is, they are aware and some opinions even seem to welcome it to help improve things.

Happy I encouraged you in the right direction - and do let me know next bloods if they remember !

LG

This was a private bloods service so there's no 'notes' as such, but apparently I just have to say on the 'special requests' part of the form when putting in my order that I want a butterfly. If it doesn't arrive in the kit then I'm on the phone to them asap. They know that I can just walk away if I'm not happy

As far as the NHS hospital goes, I don't think they wrote it on my notes but I've never had any trouble with them - as far as bloods go anyway. I just ask for a blue butterfly on the day and it's done. All the bloods nurses there have been lovely. It is just a terrible shame that the service is so patchy within the NHS and even within this clinic. I tend to watch my step. It wouldn't be the first time that 'lovely and helpful' has turned on a dime into 'gestapo headquarters'. They know that I can't just walk away if I'm not happy.

dt

Well dt, all these can contribute to an easier time of it with a little effort. My last 'bruise' was about 12" long by 4" wide - black and yellow, with a spectacular lump in the middle on the vein where they drew blood around the size of a gob-stopper - and it hurt like hell for 2 weeks - So although I dealt with it at the time, although not without some anxiety, I didn't really fancy that option the next time round I must say ! We can but try

OMG - you sure that wasn't an appendectomy or a kidney removal or something? Well, on your arm I guess not, but ..... you never know.

I was also not fancying another round of bloods after my sore, bruised arm, so it was with considerable relief that I learned that the bloods service supplied butterflys on request. I'm a bit annoyed that they don't actually tell you there's a choice, they just send out the standard crappy kit and it's only then that you discover it's crappy. Maybe they are trying to get rid of a backlog of cheap crappy ones, who knows. Otherwise it's a really good service so I didn't want to have to go try another place.

By the way, I agree with your observation that the hospital minions with the least authority tend to be the nicest and most obliging. As you go up the chain of authority the gestapo numbers seem to increase. Just don't get on the wrong side of your specialist hepC nurse. Contrary to popular practice, I find it better to see a different one each time if possible. Lessens the odds of getting stuck with a 'Queen Jobsworth'. As you say, we can but try.

dt

Not good news this end, VL still detected - 68 at week 7ish (day 46)
It's steadily decreasing, but slowly.
All LFTs normal

Mean corpus haemoglobin (MCH) up a small amount.

Feeling rather down and still suffering sinusis, headaches (even after paracetamol) , blocked nose, teeth ache, tinitis and loss of appetite.

Has anyone else been detected at this stage at this kind of amount?
Looks like I'm in a small minority.
Looking at the figures, I hope to be UND at week 8, it's been going down at around 100 ish a week since week3. Thank God no NHS 8 week restriction. Will need to ask all Drs advice and decide what to to this weekend.

I wish you had the UND I won't lie
But I do know that these meds can suddenly show at EOT this UND we want
I was counselled going in as a peginf relapser we are all hung up on an old four week test that used to be crucial
I learned all this stuff after I was popped on peginf for no reason with a VL of around 400,000 and no fibroscan even blah blah
I was VERY inquisitive re these DAAs because of my disgusting past experience in fact almost too scared to even start anything ever again
The good oil was that these can clear at any time
My specialist tells me that it can be a week or even bammm at EOT
I was also told I could always extend if I felt like it was better for my SVR especially with the risk of mutants from peginf
I think you will come back with an UND soon
Possibly at week 8, if not ask about extending tx if you feel anxious it's worth it. Emilio did a longer tx due to the issues that I mention re peginf and he is still SVR
Keep me posted
Keep at it and stay warm and chillax
I have a personal opinion that stress is a tx hazard but I am no doctor
I suffer anxiety so I am right onto any stress and just chuck it out
Thinking of you hunny
Love and hugs
Ariel

Babe, forgot to add, before this my VL was only 240,00O and I didn't get UND til day 40.....
So you are winning

Hi LG
I really understand your disappointment and if it were me I would feel discouraged also. But guess what! Your next VL bloods will be awesome UND! Keep the hope and maintain the dream. Hang in there chicky. So far I don't think I have read of anyone on the forum who has not achieved UND.

Hi LG,
I know how are you feeling!
Waiting the first UND is, for some of us, hard. Mine came only in 8.5 week but it came finally.
I know that you will win and at approx 8 wks the UND will be yours. With this new DAA tx odds are on your side.

Did you check your D and B12 vitamins? Mine were low so from half tx I took these vitamins. I am sure that helps!

Wish you UND soon!

pat1 wrote: Hi LG
I really understand your disappointment and if it were me I would feel discouraged also. But guess what! Your next VL bloods will be awesome UND! Keep the hope and maintain the dream. Hang in there chicky. So far I don't think I have read of anyone on the forum who has not achieved UND.

Hey London
like Pat said I too know that disappointment at the 4 week mark my VL was still detectable and since then I have not had another VL done until my treatment ended on the 24th of this month. There was nothing more I wanted to see than UND especially after so many here are UND at the 4 week mark. so like you Im feeling a little deflated and anxious.

If it turns out post tx that this wretched virus is still hanging around then I will treat again until such time I do get rid of it, its good to have those options for us. Im going to have my fingers and toes crossed for our next VL to come back with the magic UND

Looking at what your results are up until this point the medication is doing its job and you still have 5 weeks to go to slay.

Thank-you all
It looks like I'll be extending treatment.
Working around a few ideas this weekend.

It's worth it and when you get to UND I found (and it's only been a few days) that my mental state changed dramatically
I'm sick all damned night but my mind is clear as
I would overtreat if I had any worries myself
Go for it girl
It's within reach for sure

Thx Ariel

The concern could be natural resistant genes, malabsorption or fibroscore closer to or actually F4.
Have never trusted that last fibroscan, but my requests don't reach the powers that be's ears.
As it stands I am am a slow responder and one of the 1-3% who don't respond like everyone else
Next VL test is 10 weeks, I'd rather have one at 9 , but hey ho Need to see what results do and I feel, try to get a gene test for mutants! not sure how to go about it. I have an MRI nxt weekend, maybe that could throw some light on the subject.
Wary of collecting more 'mutants' !
Looks like I'll deffo be doing 6 months, not 3 .

BIG 2 all.

Hi LG,

Do not despair. It is well known and studied that some people have baseline NS5A RAVs. If you look back at the Gilead studies, the people who had those RAVs and were not cirrhotic still had 100% success rates with 24 weeks tx. If you were cirrhotic it would show up in your blood tests so I don't see that you can be, false fibroscan notwithstanding, but you probably want to get another fibroscan anyway, just for reassurance.

As far as the gene test goes (do you mean a test for RAVs?) I'd say to take your doc's advice, but I can't see how it would be helpful at this time. Everybody who takes an NS5A inhibitor (led and dac) and is not UND will probably have NS5A RAVs present. The challenge, not just for you but for everybody) is to put down for good those last RAVs that are hanging on. For non-cirrhotics, 24 weeks will do it.

dt