Share your story

One of the best ways for people with health conditions to connect with each other it to share your story - the experience you've been through with your condition. That's what this blog section is for. There are 18 members in this community so far... let's make it a vibrant place where more people will want to join, ask questions, and provide support!

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  • Tallyho - an update ( part 1 is on ' a blog on blogs)

    Ok so where was I ? oh yes about to see if I could go on to the MATTIS TRIAL. also known for anyone interested as QRK202 stratum 2 .

    So last Monday the hospital phoned me and asked again would I be interested and indeed i was and so the next day i received the 30 page document telling me what this trial would involve. it would be a 7 month trial and the good news was that I would have a 1in 4 chance of getting the much wanted drug LUCENTIS which as i am a diabetic I am not entitled to have on the NHS as yet. The paper work was lengthy and I then last Thursday went to the hospital to meet with a doctor and 2 nurses armed with my 20 questions (literally).

    when I arriveed they were waiting for me as eager as I to get started with the tests etc that would be involved. My questions were answered and i was all ready to have the tests done to see if I was eligable to go on the trial. the only thing perhaps stopping me was the fact that I have a slight heart murmmer and a strange electrical pathway in my heart which makes me look on a ECG as if I am having a heart attack ( I kid you not) so i took all the paper work to show that my werid ECG is infact normal for me. I had done lots of other research and looked up the criteria as best I could to see if I could be ruled out on anything else and I seemed to be a perfect candidate.

    But then came the bombshell. The doctor then said ," mmm your glasses look like you have a pretty strong prescription for this trial you need to be -8 or less refraction on the study eye" . Well that was that, I knew my refraction was -11 and I showed her a copy my prescription which is also in my file. I then had a refraction test done just to check and sure enough it was -11. So my hope of getting LUCENTIS was gone. The dr then said would I like an injection of AVASTIN as I certainly needed one. I declined as I was just too upset and had driven to this appointment so I now have an appointment on Thursday for my 11 th injection of a drug which is yet to show any real signs of working.

    Any how on a plus note - yesterday I went to London to be a volunteer patient for some students learning to be optomotrists I really enjoy this because it gives me something positive to do. Incidently it was through the MDS that I found out about doing this through their ' get involved' page, for me it was just what i needed - to feel useful again to someone - thanks MDS.

    Your Tallyho

  • Hi tallyho,

    Thanks SO much for writing this blog! I want people to be able to see it from the main page... can you copy and paste it into a NEW blog? If you don't know how to do that let me know ;)

    Cheers,

    Lora

  • Dear Lora

    thanks for that and for reading it

    I am sooo computer illiterate infact the fact that I I have been able to post this correctly amazes me so can you do it please thanks.

    thanks from Tallyho

  • Hi tallyho,

    Not true - if you can sign up and use this HealthUnlocked site you aren't computer illiterate ;)

    If you are reading this, scroll up to the top and click 'Home' (below 'Macular Disease Society'). Then, in the middle of the home page below 'Welcome tallyho!' click 'Write a blog post'. There, you can put in the title of your post and paste there your blog.

    Hope this helps! Can't wait to see your post!

    Best wishes,

    Lora

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