- This topic has 32 replies, 11 voices, and was last updated 8 years ago by
.
-
Hi, my name is Nadia and I am sitting here in London on this fairly sunny morning feeling excited like a kid waiting for the doorbell to ring. I have been tracking that special parcel for days and it is due imminently.
I hope I am posting this in the right place. This is the first time. Before I say more I want to thank all you wonderful people on here for being so inspirational. Your stories and support to one another has really moved me to tears at times and made me feel this world does stand a chance with you guys in it!!! To you Dr. Freeman a huge thank you. I have not spoken with you but have spoken to some of the other wonderful people working with you. You are all a breath of fresh air in these rather fucked up times!
My story goes pretty much the same as many others on here. I know we all came to the same place maybe in a variety of ways but the end result is living with Hep C. I was diagnosed in about 1995 but have no idea how long I had it before then. I remember the day of my results all too clearly! I was in hospital with my son who was very sick and I thought he was going to die! He has cerebral palsy and is pretty severely disabled by it. He has no speech and cannot use his limbs. Basically none of his motor system works for him, but his mind works super well and he has to tolerate so much crap from his body that when I moan and bitch I suddenly think of him and it kinda stops me in my tracks. Actually he would probably beg to differ and tell you I continually bitch and moan!!!
Not true not true!!! Well maybe a little haha!!!I have been attending the Royal Free hospital and like others was seeing Professor Dusheiko. It has been a long slow journey with one try of treatment with Peg Interferon and Ribavirin which failed. It was not a treatment I would wish to try again it just felt totally wrong in every way both physically and emotionally!
Last year maybe a little longer even, I was looking online and found this website. I was reading about people traveling to India for generics and it was a revelation that this was even possible. My partner and I discussed it but caring for our son has to come first and getting away has not been the easiest thing in 30 years. (see moaning again already!) I asked the new consultant who had taken over at the Royal Free if they would monitor those patients who went to India and purchased the generics. He told me the Trust had advised against doing this and they felt it was all too easy for patients to end up with fake drugs. Whilst interested in what was happening they clearly did not want any involvement at that time. Anyway not long after finding this site I started to feel unwell and was diagnosed with atrial fibrillation which is an erratic heart beat. I basically got sidetracked till recently. My how things have moved on!!!! So here I am waiting for my meds……have hopefully set up my GP to monitor me and do my blood tests and I know there are other wonderful people to call on.
I apologize if I have rambled on too much but thank you all for showing me and others the way to taking control of our health and to those who have made this possible. I think the word ‘awesome’ gets overused but you Dr Freeman and others are so very very awesome!!!
I will be back once I have started this first 12 weeks. Now I had better go help my son get up for another day. At least it is a beautiful day in so many ways. Thanks again to anyone reading this.
Nadia
Diagnosed Hep C genotype 1b early 1990’s. Treated 1998 peg Interferon/Riba non responder
( Meds stopped after 4 or 5 months.
Fibroscan April 2013- 7.3kPa repeated May 2015- 5.8kPa mild scaring
May 2015 ALT 59 AST 56
21/7/2016 ALT 36 AST 44 BIL14
VL 939000
thanks FixhepC +Monkmed started Sof/Led 16/8/2016.
)
OCT 3 AST33 VL UND
OCT 11 ALT 29 AST 36 VL UND
NOV 10 ALT 27 AST 37 VL UND
JAN 30 2017 ALT 23 AST 29 VL UND
SVR12 ALT 23 AST 27 VL UND!!
SVR 24 UND!!!TY EVERYONE!Hello Nadia and welcome
wishing you all the best for your Tx journey
pat1 wrote:Hello Nadia and welcome
wishing you all the best for your Tx journeyThanks Pat1 for your kind words.
Diagnosed Hep C genotype 1b early 1990’s. Treated 1998 peg Interferon/Riba non responder
( Meds stopped after 4 or 5 months.
Fibroscan April 2013- 7.3kPa repeated May 2015- 5.8kPa mild scaring
May 2015 ALT 59 AST 56
21/7/2016 ALT 36 AST 44 BIL14
VL 939000
thanks FixhepC +Monkmed started Sof/Led 16/8/2016.)
OCT 3 AST33 VL UND
OCT 11 ALT 29 AST 36 VL UND
NOV 10 ALT 27 AST 37 VL UND
JAN 30 2017 ALT 23 AST 29 VL UND
SVR12 ALT 23 AST 27 VL UND!!
SVR 24 UND!!!TY EVERYONE!Hey Nads – So pleased you found your way here
I used to be under Prof Dusheiko at the RF, lovely man & great Doc. The day before my next appointment, he emailed me personally to apologise that I wouldn’t be seeing him any more, I was upset as I felt supported by him and had asked my GP to refer me to the RF because of the Prof being there.
Like you, I was reallocated to a Dr T , is that the one you saw? What a waste of my time, travel costs & hope. He blithely lectured me on how I shouldn’t expect to get treated before those with cirrhosis (This after stating a few mins previously that they had now treated all those with cirrhosis), I was suffering with some symptoms, possibly similar to yours and he refused all diagnostics, refused to even do any basic checks etc and said a pulsating feeling under centre ribcage was nothing to do with my liver and to see my GP. Later I had a new LiverMultiScan which showed my worst fibrosis in this area. He told me I could wait for treatment. I told him this was no good and I would consider taking the new generic medicines. He said I would have to pay privately for all consultations and all blood tests (thousands of £) IF any Dr would do this and he very much doubted and anyway they were all too busy.
Having waited for that appointment in hope of addressing my rather severe symptoms, I left angry and depressed, my ‘consultation’ was just a lecture on how selfish I was, how I wouldn’t be treated any time soon and how I was ‘fine’ and didn’t need any diagnostics, this had a negative effect on my mental and therefore physical health.
Prof D suggested I ‘push’ for treatment and request an Ultrasound scan which I did, Dr T reluctantly agreed to the latter. My next appointment came around, but as he had said I couldn’t hope for any treatment until very earliest June 2016 and he couldn’t guarantee that, I cancelled through the Royal Free telephone appointment thing. Dr T then wrote to my GP telling him I hadn’t shown up. So that’s on my records . This can prevent future treatment, if you are listed as a no show. The Royal Free have apologised and suggested I take it up with PALS, but at the time I was trying to avoid stressful negative influences, so didn’t but may well do that now out of principle.
Anyway, pleased to say I treated with generic medicines via MonkMed / Redemption and am currently waiting for post treatment tests.
Do you now have monitoring? I can highly recommend MonkMeds Dr Debasis, he has been a tower of strength to me and extremely helpful throughout my treatment, but he can’t order expensive Viral Load tests on NHS more’s the pity.
If you need any advise re monitoring, GP support etc please do not hesitate to PM me.
Meanwhile, I wish you the very best for your treatment and regaining good health
I’m sure you will start to feel better very soon
LG
Hi LG how lovely to hear from you. I feel like I know you a little already. I spent 2 weeks reading the wonderful posts on this site and yours were particularly informative, and both moving and sometimes humorous to read.
I think the consultant I saw was the same one as you. I just felt he was sitting there hoping to ward of any awkard questions, especially requests for any treatment. When I told him about feeling really tired all the time totally lacking in energy, he remarked that everyone gets tired. Yes that is true but the exhaustion many of us feel is not the norm! If you have the strength you should make a complaint via PALS. That is terrible that someone feels the only choice they have is to leave the much needed support of a hospital whose care they were supposedly under as a result of an experience like yours. Yes I fear the Prof going is a massive loss to the patients and other young doctors to learn from. Arrogance is not an attractive characteristic!
I hope my GP will monitor me as she agreed to do but you can never be sure about other influences in a large practice. She was great about getting me my VL and blood tests these past weeks, its just a case of how many she will be willing to put through. I had a consultation with Dr Debasis he was fantastic as everyone I have had dealings with so far. I couldn’t believe how fast and how smooth everything went from applying for Redemption Trials to the gift of better health arriving at the door!!!!
I think it is all thanks to you and others on here who have ironed out all the little issues with those running it. I feel so very lucky to be here LG.Will certainly take you up on yer offer of sending you a PM later if that’s ok. Oh and thank you for helping set up all the music. Some I have not heard for a long time brings back memories!!!
Love you and leave you now before this becomes a book!
Diagnosed Hep C genotype 1b early 1990’s. Treated 1998 peg Interferon/Riba non responder
( Meds stopped after 4 or 5 months.
Fibroscan April 2013- 7.3kPa repeated May 2015- 5.8kPa mild scaring
May 2015 ALT 59 AST 56
21/7/2016 ALT 36 AST 44 BIL14
VL 939000
thanks FixhepC +Monkmed started Sof/Led 16/8/2016.)
OCT 3 AST33 VL UND
OCT 11 ALT 29 AST 36 VL UND
NOV 10 ALT 27 AST 37 VL UND
JAN 30 2017 ALT 23 AST 29 VL UND
SVR12 ALT 23 AST 27 VL UND!!
SVR 24 UND!!!TY EVERYONE!Welcome to the forum,Nads
You have come to the right place and I hope your Tx journey is a smooth and successful one
Thank – you nads
almost got teary then ! So pleased you’re getting treated. I have found it is often helpful to mention to GPs that you are aware of the cost of the tests, followed by giving them a reason to do them. My GP likes this anyway. He’s also quite happy to request ultrasound at the hospital too.
Anyway, do seek advise re anything from Dr Debasis, he cares about every little symptom as has quite a refreshing holistic attitude. I still talk to him regularly now regarding supplement support now I am post tx and intendt to keep him on as my Dr for as long as I can to back up my NHS as a second unbiased & caring professional opinion. (actually the other way around!) ? Dr Freeman has also been very helpful regarding my slower response and my 3rd med. Luckily, I now have a really lovely supportive nurse here in the UK too
but things have improved dramatically since Jan 2016, thankfully !Are you taking Vit B12 and Vit D? These are recommended as fine on treatment.
Have your meds arrived yet? I remember the nervous excitement so well ! UK Debs fand I were having a little race ha ha Debs is now SVR 16 – Fantastic news
Looking forward to following your journey, you know where I am
Hi Beaches thank you lovely to meet you.
Yes LG they literally just arrived and Dr Debasis was on the phone in a flash. As you say refreshing especially considering all the people they are keeping an eye on. We have become too used to people feeling rushed under pressure and having their ‘hands tied’! Have heard this expression too often.
So good to read how well you are all doing and I hope that those who have not yet seen it happen for them will real soon.
I am feeling so blown away by how quickly this has all happened. Got to go and get an appointment with GP and put a few things in place to keep an eye on other meds then I can take that first tablet. Excited and apprehensive I am sure many of you know that one!!!!
Will keep you updated. Love to you all.
Diagnosed Hep C genotype 1b early 1990’s. Treated 1998 peg Interferon/Riba non responder
( Meds stopped after 4 or 5 months.
Fibroscan April 2013- 7.3kPa repeated May 2015- 5.8kPa mild scaring
May 2015 ALT 59 AST 56
21/7/2016 ALT 36 AST 44 BIL14
VL 939000
thanks FixhepC +Monkmed started Sof/Led 16/8/2016.)
OCT 3 AST33 VL UND
OCT 11 ALT 29 AST 36 VL UND
NOV 10 ALT 27 AST 37 VL UND
JAN 30 2017 ALT 23 AST 29 VL UND
SVR12 ALT 23 AST 27 VL UND!!
SVR 24 UND!!!TY EVERYONE!Welcome Nads Thankyou for sharing some of your story so far with us all. You have had some similar experiences to some other people here and will find help as well with tx and beyond from forum members and the information here already available, as you have said. I hope you have an okay time on the meds everybody is different it seems in their sx. Some have almost none and others have some, I must say I have never seen anything to worry about on DAAs, and for me so far they’ve worked. I’m approaching my last test in around five weeks it’s the SVR24.
Greetings again from the other side of the globe,
Wishing you good health ahead
Splashes of happies from Ariel Thank you Ariel for your encouragement. The positivity that comes from everyone on this forum is incredible for all of us just starting on this journey. I can imagine each time you get your results your heart misses a few beats. Exciting and nerve wracking at the same time.
You are so spot on we have similarities yet all vary a little in the way this f****r of a virus has played out in our systems. The end game is to kick its butt. Now we have the opportunity and you are about to reach your goal Ariel.I have everything crossed for ya!!!
Your posts along with others have all been terrific to read and helped me to make my mind up that I had to give it a go!I love your profile pic can almost smell the surf just looking at it!!!
I hope to be right here with you when you get your last lot of results and here is wishing that they come back exactly as you desire SVR 24!!!!!!
bye for now.
Diagnosed Hep C genotype 1b early 1990’s. Treated 1998 peg Interferon/Riba non responder
( Meds stopped after 4 or 5 months.
Fibroscan April 2013- 7.3kPa repeated May 2015- 5.8kPa mild scaring
May 2015 ALT 59 AST 56
21/7/2016 ALT 36 AST 44 BIL14
VL 939000
thanks FixhepC +Monkmed started Sof/Led 16/8/2016.)
OCT 3 AST33 VL UND
OCT 11 ALT 29 AST 36 VL UND
NOV 10 ALT 27 AST 37 VL UND
JAN 30 2017 ALT 23 AST 29 VL UND
SVR12 ALT 23 AST 27 VL UND!!
SVR 24 UND!!!TY EVERYONE!Hi Nadia,
Welcome to the forum! Gawd! Interferon, I remember that hideous crap, thought I was gonna die!!!
Good luck with your journey! 
Hi CD wow its great to talk to you all on here. you are all so embracing that in itself is a great start to getting well! It sounds very hopeful to hear your AFib has diminished along with your asthma since ridding yourself of the hep.Thrilled for you and makes total sense to me. I have been questioning if there was any relation to suddenly aquiring AFib after having hep for 20+yrs
Yes CD my heart is supposedly good so I couldn’t really understand why I had suddenly gotten it. Just feel it is a bit of a bastard to get back into sinus rythm. Adds to the tiredness with the added crap of getting breathless just walking down the road. Sorry everyone for sounding like an old git
Too many meds plus the Warfarin, which I so don’t like the sound of longterm. I will so PM you soon to pick your brains on your way of dealing with it thank you so much for the offer. Talk soon and stay well!!!!!
Diagnosed Hep C genotype 1b early 1990’s. Treated 1998 peg Interferon/Riba non responder
( Meds stopped after 4 or 5 months.
Fibroscan April 2013- 7.3kPa repeated May 2015- 5.8kPa mild scaring
May 2015 ALT 59 AST 56
21/7/2016 ALT 36 AST 44 BIL14
VL 939000
thanks FixhepC +Monkmed started Sof/Led 16/8/2016.)
OCT 3 AST33 VL UND
OCT 11 ALT 29 AST 36 VL UND
NOV 10 ALT 27 AST 37 VL UND
JAN 30 2017 ALT 23 AST 29 VL UND
SVR12 ALT 23 AST 27 VL UND!!
SVR 24 UND!!!TY EVERYONE!Thanks Fretboard for your warm welcome! Yeah looking back thinking about the Interferon and Riba gives me the shivers!!!!!! BRRRRR. What a relief these other meds have come along sad so out of reach to many makes me mad like others on here have already muted many many times. Hope to meet you again on here soon.
Diagnosed Hep C genotype 1b early 1990’s. Treated 1998 peg Interferon/Riba non responder
( Meds stopped after 4 or 5 months.
Fibroscan April 2013- 7.3kPa repeated May 2015- 5.8kPa mild scaring
May 2015 ALT 59 AST 56
21/7/2016 ALT 36 AST 44 BIL14
VL 939000
thanks FixhepC +Monkmed started Sof/Led 16/8/2016.)
OCT 3 AST33 VL UND
OCT 11 ALT 29 AST 36 VL UND
NOV 10 ALT 27 AST 37 VL UND
JAN 30 2017 ALT 23 AST 29 VL UND
SVR12 ALT 23 AST 27 VL UND!!
SVR 24 UND!!!TY EVERYONE!
- You must be logged in to reply to this topic.