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!

[tallyho]

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

[Hidden]

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

[tallyho]

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

[Hidden]

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