Sue B
Posted by

A Breakthrough!

Sue B
Posted by
13 Oct 2016

Don't always listen to the doctors......

Since my transplant in July 2013 I have had chronic gvhd. This has mainly affected my skin, particularly the mucous membranes. I had ulcers and blood blisters in my mouth and throat for about six weeks but although this was quite painful and the only thing I could eat was yogurt, it was shortlived. But my eyes were another thing entirely and this has been ongoing for over two years.

It started in February 2014 with a gritty sensation in my right eye, a bit like having an eyelash in my eye. I went to the GP and was given eye drops and referred to the local hospital, but the situation just got worse. I was given more drops and sent away. There were days when I spent hours pacing the room because of the pain. With all due respect, the local hospital did what they could, but they had never had a patient with gvhd, so didn't really know what to do and didn't have the facilities to deal with it I was eventually referred to Moorfields where they diagnosed ocular gvhd and was given more drops, including ciclosporine drops for the night time and vita pos ointment.

I did some research and asked them about having my lower tear ducts cauterised. They put in temporary punctal plugs at first which helped a bit, but they fell out after three weeks. I then had them cauterised which offered some relief. By 2015 I had progressed to the point where I could cope during the day by putting drops in about every twenty minutes, but after about seven o'clock in the evening my eyes would get worse. I couldn't go out as everywhere had air conditioning and my eyes would get red and sore.

I did some more research and asked about having the upper tear ducts cauterised (I didn't even know we had upper ducts lol). I was told by two doctors that it wasn't worth having them done, as only about 20% of the ocular fluid goes upwards. Well, in my book, 20% is 20% more than nothing, so I pushed for this, and finally had the done last Thursday. This has really made a BIG difference! It may only be 20% but it justs tips the balance in my favour. My eyes are no longer sore and although they will always be dry, the eyelids are now much less inflamed. I went out last night and got home at 10 o'clock and my eyes looked fine. I haven't been able to do that in years.

So....if anyone finds themselves in my position, you don't have to suffer. I'm certainly not advocating not taking the doctors' advice, but at the same time listen to your gut instinct. Never hand your health over to someone else entirely. You know your body better than anyone and if you feel that something is right for you, and it is safe to try, then try it. The worse case scenario is that it doesn't work in which case you are no worse off than before.

Above all, have faith in yourself. Keep trying things and never give up.

Comments

Eleanor Baggley
13.10.2016

This is great news, Sue! It's so good to hear that you've finally got some relief from your GVHD - I remember you talked about this in your video. I think your advice is spot on - you do know your body better than anyone else and it's important to listen to it. Thank you for sharing! All the best, Eleanor

21.06.2017

Hi Sue, your story is amazingly similar to mine! I was diagnosed with AML in December 2014. Had chemo and achieved remission in April 2015 but by August I had relapsed. I had a transplant in February 2016 and I'm still in remission but since the beginning of the year I've had chronic GVHD in my eyes and lungs. I'm in the process of trying out different treatment options. I've just started cyclosporine drops for my eyes and I'm hoping they'll make a difference soon. I do have punctal plugs in m lower lids, which have stayed in place so far.....

It's a long old slog isn't it?!  I'm a fellow Bloodwise Ambassador too and Andy suggested I look up your blogs. They're a few years old so I'd be interested to know how you are getting on now.   Best wishes, Jane Leahy