Beth@NIH 9: Blood, blood and more blood

I had to fast from 8pm and get up and go to the ward early with the last of my 24 hour urine collection. Phew!

Nutrition came and tested my body fat and then needed some more information about my food basically because they didn’t know what some things were. She said my diet was good and varied but they need to test further. I think they will come back and say my portion sizes are too large. I know what I need to do to loose weight and I am going to do it. Their plastic food objects are very bizarre though especially the burger!

Then they put an IV in and I drank vanilla milkshake for the mixed meal test. Then the nurse drew lots and lots of blood. She had to press on the vain each time as my blood wouldn’t come through. I didn’t feel too bad and three hours later when the test was finished I got up to go to the loo. As I was on the loo I felt faint and tried to get myself together and open the door to get back to bed. I passed out completely and hit my back on the metal grab rail and cried out for help.

I then did the lunch buffet which was wierd because the volunteers sat behind me to write notes and I would have preferred having a chat as it feels more like they are ‘watching you’ The oreo’s were yummy!

After lunch I went to opthalmology and got the works. First they tried to draw more blood for testing. Queue almost fainting again and the lady trying to give me amonia! I insisted on lying on the floor. She luckily got 2.5 vials which was enough to test. The geneticist was called Delphine and was from France she was lovely and said they test PAX6 first and work from there out. It can take 4-6 months for the results but I expected that. Then I did lots of eye charts for contrast, acuity and then for prescription lenses. They were very insistent about me needing a prescription even though they gave me migraines and made everything much more tiring. The tech was only following the Dr’s orders. I then went to see a lady who tested for dry eyes with orange, and green dye. I’ve never had green dye before it was a beautiful colour. Then they stuck paper in my eye to test for dry eye and despite the anaesthetic it was extremely unpleasant and the paper was stuck to my eye lids as my eyes were so dry. Yuck!

Then I went to see the Dr, he made me move rooms and when I got my cane out he said ‘You don’t need that we are only going round the corner.’ I ignored him and carried on. He then said he thought I would have better vision and again tried me for lenses. I was really struggling as he was pushing me to read letters I was straining to see e.g. when all circle letters look like an O because you can’t see the gap for the see or the little black bit on the Q. He was telling me to use both eyes as my nystagmus would be better. I said I couldn’t and he said ‘I have seen lots of people with aniridia, you are not the first and you can use both eyes!’ at which point I burst into tears. I only use my right eye as my left eye is significantly more impaired sight wise than my right eye. My nystagmus is consistently bad whatever I am looking at and it is one thing that really impacts on my vision as well as the photophobia. The Dr asked me what bothered me about my vision and I said nothing so he then asked what was the biggest thing which affected my vision and I said my photophobia and nystagmus. He said he recommended I get cataract surgery to improve my vision in both eyes and then get squint/nystagmus surgery to tighten the muscles around my eyes. I told him that’s something I didn’t want to do. Since I have less sight my quality of life has improved as I no longer get headaches and really bad eye strain from looking. I want to keep my eye as healthy as possible for as long as possible which is why my parents never got my squint operated on as it would only be cosmetic. This opinion has been confirmed by other Dr’s as I have got older. The risk of glaucoma or worsening my cornea’s just seem to outweigh the benefits. The way I see it is that I’ll probably get a few years of good vision and be back to this stage and I could have made my eyes a lot worse. I’m not against surgery and at some point I may have it but at this moment in time it is not for me. All the good Doctors I have seen have not recommended removing the cataract as it is around the edges. I don’t think it would improve my light sensitivity and I think that changing my null point and my squint at this stage in my life could be devastating for my ability to focus. Plus there is a chance it would just wander back. I was quite frustrated by the Dr I can see he was trying to help but that’s not what I wanted from him. I am letting them do all these tests to help people with aniridia and WAGR not because I want advice from an opthalmologist. I probably didn’t take it as well as I was so tired from my day and fainting etc.

After I ate Dr Han and her husband and their cute little son came to the ward. Her husband did my neuro exam. He was lovely and their son was very cute and gave me five. We talked about my headaches and that I could consider looking at a similar medication to imigran but different as it may have different side effects for me.

At 8pm we had to move wards as there was only one night nurse Mary. Mary put another IV in so we could use the first for flushing the glucose in the morning and the second so she could get blood at midnight for cortisol. I got a green bandage and we managed to get some good blood. I felt her take blood at midnight but was quickly off to sleep again.

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About Beth Dawes

I have no eye colour but I do have an iPad, a guide dog called Annie and a pink long cane.
This entry was posted in National Institute for Health WAGR study, Patients' tales and tagged . Bookmark the permalink.

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