Aniridia Network

I have a small pineal gland which is usually the case with people who have aniridia.

I have low vitamin D levels (probably because I live in England and I don’t go out in the sun much) I have some tablets to take and then I need to get my levels checked and take a supliment if they are fine.

One lot of cholestrol is high which is due to obesity, it’s strange as I don’t eat much fat but I have eaten more fat here. I also had a few high blood pressure readings but I think that is probably stress as at home they are usually perfect.

I have protein in my urine but apparently although it is high for their lab it is not high for other labs and the nephrologists aren’t concerned. Strange because it isn’t the protein which is related to obesity! But it is nothing to worry about.

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Subu, Dr Jee, Shannon, Me, Joan and Mark at NIH outside my room in the Metabolic Unit

Mary got me up at 5.30am to wee but unfortunately I lack the ability to do this on command so they had to wait until 8am! lol! I had to rest in bed until 7.30 when Shannon came to put the oxygen hood on. She said she tells the little kids they are going to ‘Go to space.’ It was a very boring test.

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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!

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I woke up bright and early and got a latte again. I had to lug over a huge bottle of urine for the end of my 1st 24 hour collection. I had to take it to the mall with me but luckily it was in a blue bag and I didn’t need to use it. I also brought over my washing as I had no clean clothes left.

I went to audiology who let me have a sleep and again my perfect ears came up trumps. I then went to the second half of neuropsychological testing which was more fun than the last as the test was practical. It was really interesting with my psychologist head on to see what an IQ measure for the blind ‘looked’ like.

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So Josiah took off all the glue from my head with something that reminded me of nail polish remover. My hair was soaked and horrible and all the stickers on my face had to come off too. While this was happening the nurse decided it would be a great time to come and take my vital signs. Having your blood pressure taken is just what you want at 6am when they are scrubbing your head to get the glue off! lol Then they wondered why I was in a hurry to get downstairs.

I was taken down and then I begged to go to the lodge and get a hair wash, a shower and some clean clothes as I felt awful on only 3 hours sleep (Josiah told me). They made me wee as I had started 24 urine collection. I escaped and had the most wondeful 3 hair washes and one conditioner and a looong shower. I then got a latte and a danish pastry for breakfast from ‘Bon au Pain’ as I’m not keen on the breakfast here. Bon au pain trainslates as ‘good of bread’ which makes no sense at all! I felt human and came back over to the ward so I could go to occupational therapy.

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P is for pictures

There is nothing like spending an hour in the MRI scanner trying to keep still and not being able to move to make you all achey. Apparently I had the wiggles on one set of pictures and I think that’s probably because I jumped at one point as I was dosing off and the machine started off again loudly! Anyway the good news is I do have a brain folks. 🙂

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On Saturday I got up and managed to chat to my parents and Graham on msn. I went over to the hospital cafeteria which was the only food place open. The pancakes were tasty but the bacon was too greasy.

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I got up early on Friday and headed over to the ward. I ordered my breakfast and the nurse asked for a phlebotomist to come and take my bloods this was at 8.15am. My breakfast arrived at 9am but I couldn’t eat it until I’d had my fasting bloods taken. I waited and waited and then Jamilla came to take me to my MRI. It was long and hard to keep still and concentrate on breathing in and out when you feel hungry! The phlebotomist had caught up with us at the mri waiting room and told us to come along after. The MRI people were supposed to do my ankle but theyn decided they didn’t have time as I had a dental appointment.

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I got up and came over to my room and ordered breakfast so that I could eat and get to my 9am appointment. Unfortunately it didn’t turn up until 9am so Shannon helped me carry the pancakes and my two cups of english tea (I brought my own teabags! lol) down to the testing room.

I woke up feeling a lot brighter and set off to the hospital to be admitted at 7.15am. It is only a 2 minute walk to the hospital from the lodge and I get the feeling you are supposed to just cross the road and hope the cars will stop. It’s not a busy road but it is very wide. It was very humid and the sun was already very bright despite it being so early but I loved listening to the crickets.

A lovely man helped me find the admission desk and I waited for half an hour but they couldn’t find me so they had to page Shannon to get my details. I decided I was hungry and thirsty so I asked where I could get something to eat. I sniffed out the coffee shop in the lobby and had a latte and a chocolate chip cookie muffin as working out what all the pastries were was difficult. I finally got admitted and had a pass made etc. Some of the staff find it really difficult to understand my accent though so I had to spell lots of things for them like Wallsend and Newcastle. Dr Han came in and had a chat she is such a lovely woman and then Shannon came to take me up to my room. She is also very lovely and so is the volunteer whose name escapes me for the moment!

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