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How fantastic is that! Bloods done at last and results soon on their way. You must be very relieved. It’s no joke when you are in the dark about what might be happening in your body after starting the meds.
I do hope it goes smoothly for you from now on. Well, you have that patient advocate now if it doesn’t. I didn’t even know there were such people but I’m happy to learn about it.
This whole saga that you’ve been through makes me thing once more about all those who maybe don’t have the where-with-all to make it through the system and get what they need. Maybe they are not so smart. Maybe they can’t express themselves so well. Maybe they don’t have the confidence, or the persistence. Maybe, maybe, maybe. I’d lay bets that for every one that makes it through there’s a whole lot more littered by the wayside who got lost or gave up. I don’t even wonder what happens to them because I know. They simply don’t get the medical care that they need. That’s one way to save money. So much for a civilized society protecting the vulnerable. Quite the opposite. You better be really strong or have somebody really strong on your side, or you’ll be trampled underfoot.
dt
Though another possibility is that I feel like crap and don’t respond like many others partly because I perhaps have Post Interferon Syndrome. That’s the next thing I’m going to investigate after treatment is over…
I know what you are saying Phoenix. I’ve also seen how some people pick up very fast after they start tx but that’s not happened to me. On riba I didn’t expect to feel better and I didn’t, but even without the riba the fatigue hasn’t lifted much.
So my line of thinking at this point is to wait and finish the meds. Give it a few months to recover and then take stock. Presuming a successful tx, if I’m still dragging ass then that’s one cause eliminated and investigations will begin on what is still wrong. I’ll be looking at throid function, gluten/food intolerances, general diet and exercise lifestyle and anything else that might be affecting me. I am also post interferon. I read an article posted here a while ago which made the point that people with hepC tend to accept their fatigue more readily than others ( because they believe it is hepC related and there’s nothing they can do about it). Well, I’ve had enough. If mine doesn’t go after SVR, I’m not stopping till I find the reason why.
dt
Queen Jobsworth
I love it!
I see you got some big guns on your side this time LG. Good for you.
It’s soooo regrettable that it has been necessary.dt
Mike,
I just want to say a one time big Thank You for all your entertaining posts which somehow manage to introduce a ray of sunshine into some dark posts and make me smile. I am also fascinated by your caricatures on various quirks of American culture. Hilarious.
dtThe secret to finding a good Hep GP is to look for a gay HIV expert.
Very good suggestion FF.
Made me think of this. Some hospital departments in the UK dealing with hepC are ‘Infectious Diseases’. Others are ‘Gastroenterology’. I’m taking a guess here based on my own limited experience but I think that the Infectious Diseases departments might be better with bloods and also at dealing with the stigma attached to HIV and HCV. So possibly a less harrowing experience. Worth a try anyway.
dtMy concern is that our age group, especially those who have a medical history of a chronic condition, will not be able to get affordable insurance, so where will that leave us?
On the subject of insurance in the UK, firstly as you say LG, we all have to pay into the NHS. There is no opt-out. So money for any private insurance has to be found on top of that. Next, even if you are healthy with no existing medical conditions, private health insurance without the cost of drugs that are self-administered at home – will cost you. Most insurances are designed so that you can get the basics only, or you can pay for each service on top of that. To make it affordable for many, you have to choose a high excess (copay), a low allowance for out-patient services, a wait time of several weeks to see if the NHS can do it first, etc. etc. to the point where you end up with something not much better than being on the NHS anyway.
So, those on the basic package will only benefit if they have a truly unforeseen medical disaster which requires hospitalization, or they develop a serious condition like cancer. And they’ll still have the big excess to pay every year of the illness.
In other words, private medical insurance in the UK is not really the answer to your medical requirements unless you can pay for the deluxe package. An alternative for day-to-day needs is a private GP who will also cost you an arm and a leg but will get the job done for you on an a-la-carte basis in a way that your NHS GP won’t. Either way you’ll have to pay for your own meds unless your NHS GP will agree to convert your private prescription into an NHS prescription. I’ve heard reports that some NHS GPs are refusing to do this on grounds of various ridiculous excuses.
I’ve looked into all this, believe me, and talked to a lot of others who are likewise wondering as they get older what their options are when it comes to getting the medical care they might need. Conclusion – if you don’t have a lot of dosh, god help you.
dt
I am really speechless to hear this LG. I remember on that day it was bone-freezingly cold and I spent the whole day indoors. I thought about you having to travel to get your bloods done in that awful cold while feeling sick and miserable, but I figured at least you were getting them done properly in a good place. I find it beyond the pale that they turned you away.
The trouble you had after getting them done at the GP is, IMHO not acceptable. I actually had, for the first time, a lump on my arm from recent bloods and I can confirm that it was from a needle that was too big and there were 5 large tubes to be filled. Thankfully I had drunk my pint of water beforehand so the blood came out ok, but I didn’t expect the lumpy bruised arm afterwards. This particular blood service does not use butterflys so I couldn’t get the small blue one, which always works fine for me.
Jeez, I don’t know what you do now. This really is a sad indictment on the quality of the services available in the UK.
dtMasculinist fallacy?
No, that would be Patronizing Masculinist Fallacy.
dt18 February 2016 at 4:37 am in reply to: Tonights Newsnight UK Feature Meds, Access, Generics #12145LG – I meant the woman who was on before that patient with the bottles, just mentioning India.
Also, I don’t think that was an SVR12 report I think it was an EOT report, but who’s quibbling it was a good call.18 February 2016 at 4:09 am in reply to: Tonights Newsnight UK Feature Meds, Access, Generics #12140…………Or maybe the lovely Virginia was just smiling for the cameras and lying through her teeth. (Sigh)
You couldn’t be in the pharmaceutical industry and be that clueless, could you.
dt18 February 2016 at 3:41 am in reply to: Tonights Newsnight UK Feature Meds, Access, Generics #12138So the time has come. FixhepC on the Beeb. Can’t get any more mainstream than that. Anybody who doesn’t know about it now must be wearing an eyemask and ear muffs. Cheaper drugs in India were also mentioned, actually whispered about quickly in passing.
That bitch at the end, Virginia Acha of the Association of the British Pharmaceutical Industry actually had the gall to say that if she had hepC she would get her drugs via the proper NHS sources only, because she “knows what can happen” via less legitimate sources. Which proved to me right there that she had no clue what she was talking about. I’d like to see her with her liver rotting away waiting for the NHS to come across with the meds, swooning at talk of the buyers club. Oh yeah? I think not.
Well, that was a big day, that was.
dtI do think you can mistakenly overstimulate your immune system when you have hep and suffer for it.
Liver fibrosis is not directly caused by the hepC virus. It is caused by inflammation set up by the immune system in response to the virus. So paradoxically, your Viral Load number bears no direct relationship to the progression of your liver damage, and trying to ramp up your immune response could be counter-productive.
A much better approach to protecting your liver (while not on tx) is the use of natural anti-inflammatories, for example like cooking with turmeric.
dt
Just what I needed to start my day feeling homicidal. But that won’t do anybody any good.
What will do good is to bring this shit into the light of day. Thank heavens it is happening!
dtSo here we have it again. The hepC cure is $900 in India, on the news. I can understand if a lot of people have not heard of fixhepc, but is there really anybody in a first world country who still has not heard that the cure is $900 in India?
So where are the fleets of medical charter flights going out to India? I am at a loss to understand it.
dtVororo – I found your post just fascinating. No I didn’t know all that, but what your French girlfriend says makes sense to me.
Makes me wonder if we Brits are collectively under the spell of Stockholm Syndrome with regards to the NHS.
https://en.wikipedia.org/wiki/Stockholm_syndromedt
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