HCV Positive

This blog is a journal recording my personal experiences with Hepatitis C.

Name:
Location: United Kingdom

I have hepatitis c, genotype 1b and started 48 weeks combination treatment, pegylated interferon alpha 2b and ribavirin in August 05. Unfortunately due to intolerance, treatment was withdrawn after only 2 weeks. I am not sure at present what the future holds.

Sunday, October 22, 2006

NEW CONSULTANT NEW START


I went to see my new liver specialist, Dr Rachael Harry, 18 October 2006, immediately she dismissed my consultant, Dr Blahblah's claims about transplant and said she didn't think I needed to be assessed for liver transplant at this point from what she could see and from what little information she did have. I explained very briefly that I felt there were problems with my last consultant and she told me I would never have to see him again.

Dr Harry and I agreed we should start afresh from this point in time and she gave me a physical examination, palpating my abdomen and checking out the spider nevi, and arranged for a large array of blood tests and a ultrasound scan. The bloods were taken that day, the scan booked for 30 November and I will go back to see her, hopefully around December for the results, her secretary will write to me with the next appointment.

Dr Harry explained that although the ultrasound scan will not give a clear indication of inflammation, or damage progression, it would pick up cirrhosis if there was any. She suggested we wait for these results and then consider whether a biopsy would be the route to follow.

I mentioned the blood clotting problems alleged by Dr Blahblah, she said she had received no notification about that but would check my bloods for that too.

We discussed future combination therapy, she felt that as I had reacted so badly to the interferon the last time I tried treatment, she felt it was highly likely that I would have the same reaction if I tried again, even if we switched to another type of interferon. Again we agreed to look at the afore mentioned test results and consider what those reveal before we look at treatment, and although Dr Harry felt it was perhaps not the best thing for me to undertake treatment again, she did say that we would discuss it at that time and that she would take my wishes into account.

Wow! I have not been used to such reasonable and straight forward dialogue before. I immediately feel that I trust this woman and feel happy to be under her care. So that is a real load off my mind to say the very least.

I am going to try and move on from all the negative and damaging stuff that occurred with Dr Blahblah. I did draft a couple of letters to him regarding his claims, his care, asking for clarification on blood clotting issues etc., etc., but for now I have decided to just move forward for my own sake, so I deleted them without sending. If anyone reading this blog is interested, or concerned to avoid being under this man's care and attending a Manchester hospital, you may email me for his name.

There was lots of stuff I didn't ask Dr Harry because in sod's law style I felt quite unwell on the day of our appointment, fighting off one of those viral infections that are flying around everywhere at this time of the year. Next time I see her I would like to discuss where I would stand in regards to being considered for future new treatments should the Vertex VX-950 trials continue to meet their targets. I would like to clarify whether she would be able to administer VX-950 as a mono therapy in the face of my apparent interferon intolerance.

As far as I understand with these trials, there are 3 trials to consider. The first trials showed that 14 days VX-950 as a mono therapy significantly reduced the virus for nearly, if not all, the participants. Since then it is not clear whether further trials are in place to assess if the virus came back when treatment was stopped and/or to determine what dosage and for how long would ensure total clearance and SVR.

The second trial is to determine the efficiency of VX-950 in combination with Interferon and the third trial for VX-950 with both Interferon and Ribaviron. It appears that future treatments are looking to use VX-950 in combination with at least Interferon and that would not really help me, so I would like to hear much more about VX-950 as a mono therapy rather than a combination therapy.

Here's the link to the Vertex website for those who wish to read more about this current research with Telaprevir (VX-950), to give it its full title.

http://www.vpharm.com/hcvinfocenter.html

Apart from HCV I enjoyed a welcome sunny break with my friend Tina in Marbella, followed by a fabulous short break in Prague with my partner Dean. Apart from the sun, Marbella is same old, same old, but Prague was an architectural feast and I would recommend this destination for a short break to almost anyone.

I recently bought myself a new, digital camera and had ideas of sharing some of my photos on my blog, but my laptop has other ideas and will not recognise that my camera is plugged into it! I have tried rebooting the computer but it still doesn't recognise the camera, so what to do next? I'm not sure, I bumble my way through all this technical stuff, but maybe next time if I've sussed it out, I can show off my shot of a praying mantis sat on the gate by the swimming pool in Marbella or the medieval vistas taken from the Vltava river in Prague.

In the meantime and instead of the above, I have posted a picture of a part of the Rochdale Canal where Dean and I did a little cycling this summer. Lovely isn't it?

Before I sign off I would like to thank everyone who took the time to give reassurances when my consultant had filled my heart with fear with regards to liver transplant, your comments did help me to keep a balance, reduce my panic and put that madman's comments into some kind of realistic perspective, thank you so much.

8 Comments:

Blogger Jason Paul Tolmie said...

Hi MissPoppy:)

Wecome back from your hols. I am glad you had a great time:)

Can't wait to see your photos. Did your camera come with any software (disc) for installing onto your computer? I have a Mac and my camera was already compatible. I hope you find a way to show off your pics:) The Medieval Vistas sounds wonderful! Do Praying Mantis bite?

I am so glad you seem to have found a decent doctor. I bet you're so very relieved.
That mono-therapy sounds very promising! I have my fingers crossed that you are considered as a future participant.
Good luck with the new doc:)

Jasonx

9:38 PM  
Blogger carol said...

Good to see you posting such promising news Poppy.
Look forward to hearing more.

Carol

10:04 PM  
Anonymous Anonymous said...

I just love your Dr. Harry, she sounds fantastic, a perfect dose of what you need! Dr. Blahblah a soon to be distant memory, just as he should be. Hang in there. I'll keep my fingers crossed for the blood work. Take care of yourself. -Ample

11:59 PM  
Blogger johnboy said...

Hi Misspoppy...gla that you have found a more open and honest consultant to advise and help you through this..it does all sound very promising.....

2:46 AM  
Blogger nick said...

Hi Poppy

I met Rachel Harry at a Face It event. She seems really pleasant, and certainly knew her stuff. Let's hope that this is a new start and a chance to put some of these bad experiences behind you.

10:18 AM  
Blogger JoeBoy said...

Hello,
I came over from the Forum to read your BLOG. It looks like you are on a positive track to new and better things. Have faith in better tomorrows.

11:35 PM  
Blogger misspoppy said...

Hi Joeboy and thanks for your kind remarks. Your comment got me off my butt and updating my blog after being away for so long, so thanks for that too.
I look forward to meeting up with you on the forum.

Good wishes :-)

3:23 PM  
Blogger misspoppy said...

Jason, Carol, Ample, Johnboy and Nick

Guys! How did I miss that I hadn't replied to you all.

Thank you once again for all your much valued support.

Nick, Carol and Johnboy, if I don't see you guys at the NHCN conference on Saturday, I hope it all goes smoothly on every level. Happy Networking.

Jason and Ample I hope things are going well for you both in your post treatment phase :-)

10:51 PM  

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