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Trip to London for my scan

Well, I made it to Guy's and St Thomas's on Monday for an MRI ferriscan to see what iron overload has done to my body. After 17 attempts by various people including the canulation team they were unable to get a canular into me so I eventually had an incomplete scan. I do not know the results yet.

I was lucky enough to be seen by Prof Claire Harrison at Guy's and she has asked for more genomic tests as well as other blood tests. At least they were able to take blood out through my portacath which was much more of a success than trying to get dye into me!! My lousy veins are why I had the porta cath in the first place but unfortunately they are not suitable for injecting dye.

She will pass on the results through my Consultant while copying me in. I'll let you know when I get them.

Best wishes to you all, Jan x

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Hi Jan

Glad you got to see the Prof but not so good about your veins

Hope the iron overload hasn’t done too much to you

Do you take Exjade? It works for me but I might be lucky and of course the transfusions up the ferritin it’s all a balancing act isn’t it .

Hope you managed to have a good rest of the day with your sons and got to see Aladdin

Xx

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Hi. What’s Exjade? I ‘m likely to be heading for iron overload some time. Does Exjade prevent it/ cure it?

Rachel

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Hi Rachel

It’s iron chelation

Doesn’t prevent or cure just helps lower ferritin as I have ringed sideroblasts as well as transfusion dependency xx

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Thanks, Helen.

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No unfortunately my liver enzymes were considered too out of kilter for exjade so I'm lumbered with desferioxamine which is a 12 hour infusion that I set up overnight twice a week. It involves sleeping with a needle in my stomach but has actually not been quite as bad as I had feared. It appears to be doing its job in bringing the ferritin down just quicker than the transfusions are putting it up! I'm just wondering wether Prof might suggest a switch to exjade yet. My liver results have improved and my ferritin has dropped from over 11000 to over 6000. We'll see!

Aladdin was brilliant with the genie absolutely stealing the show. The boys had really spoiled me with seats very near the front. It amused us when Aladdin and the princess were on their flying carpet and gazing into each other's eyes when the curtain came down and they announced they had technical difficulties. We half expected a visit from the fire brigade to get them down off their carpet?😂 It proceeded to the end without further incident and was very enjoyable

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Oh my goodness that is high ferritin but I’m glad things are going in the right direction for you

So glad you had a fun time with your boys ( still our boys no matter how old )

Take care xx

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Isn’t Proff H. Sympatheic. I’m under her team. She and my nurse gave me my life back. I’m very lucky.

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The Prof is an absolutely lovely doctor. I feel very fortunate to be under her care directly and indirectly too

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Oophs nettle meant to wish you well.

Wyebird

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Hi Jan well so Jafar so good let's hope your results are magic. I think we could all do with being granted three wishes when our health is affected . I find myself wishing quite regularly but of course no Genie appears. Glad you enjoyed the panto. X

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You just haven't got the magic lamp - that's the problem! I certainly know what my first wish would be. A cure for this beast! It wasn't actually a panto but a new West End musical and believe me none of us could cope with the energy level of that particular Genie. He made me exhausted watching him!

I took a risk just going to the theatre and in eating out too. Probably neither recommended at my neutrophil level but I guess life is all about risk isn't it and I never have been that good at listening to advice!

Take care my friend x

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