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beckybram
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Hi Rob, my neutrophils and white blood cells are heading in the right direction, they had a slight dip caused by anti viral meds but no its the haemoglobin level which is low, still on the pentamidine nebulisers until the bloods a bit more stable Best wishes Becky
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Thank you all those who have shared their blogs :) I find it useful reading others experiences and hope they help people whether it be fellow transplant patients or their family and friends.
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Hi Rob Thanks for replying Kings was my best option as they have the knowledge about my illness where as closer hospitals do not, I have GATA 2 deficiency I'm sure you have never heard of it I certainly hadn't before being diagnosed and a lot of medical professionals haven't heard of it either. The carpark at kings is very…
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Hi Peter Thank you for replying. The hospital i will be having my transplant in is Kings college in London I live 280 miles away, driving in London is a nightmare and such a long way, hence investing in a sat nav. I have a partial help certificate but obviously that only covers part of my costs and not relatives, I will…
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Hi Just an update I'm now on day 10 of fertility treatment and up to four injections a day including clexane to replace my warfarin, all is going well although taking a little longer than expected hoping to do egg retrieval next week. Not too many side effects so far just some pain and tiredness.
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Thank you for your comments, I am 29 with no children so as you say i think its worth it if it gives you a chance. I will be off on sunday for two weeks in London for fertility then back home for a few weeks before going back down for transplant. All the travelling and being away from home when you already feel ill and…
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Hi Lola sounds like you have been on a rollercoaster in your work up to transplant i originally thought my transplant would be September but its looking like end of October the time does fly by before you know it! As for Acyclovir I have been on it for some years now and personaly have not had any side effects. Wishing you…
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Hi Lola thank you for your reply yes i now have a phone number for a benefits adviser at the hospital where i will have the transplant, I tried my local citizens advice which unfortunatley wasnt much help.
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Hi Lola I am awaiting transplant and also have long hair I plan to cut it in stages so its not traumatic when it comes to intensive chemo, though it sounds as though yours might not all fall out I dont think I could cope with big clumps falling out. Our hair all being well will grow back :)
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Thank you all for your replies I will definitely take your advice I have had a look at the A nolan website but needs further reading :) I currently only work part time due to illness and my work will not be paying SSP as I do not earn enough so ESA is my option. I am not sure at what point to apply though do I wait until…
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Hi Steve Thank you for your reply, yes a lot of my illnesses are rare or not known of by most people much like some of the blood cancers people have in this forum. Im happy to share more info, Hughes syndrome (antiphospholipid syndrome) is an autoimmune condition which affects the blood and causes clotting in my case…
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Hi Peter Thanks yes my condition is a rare genetic thing although nobody else in the family as far as I know have had anything like this, the hope is a transplant will cure most of my illnesses as my bone marrow and immune system are already starting to fail me. My transplant will also be from an unrelated donor from the…