Ask Me Anything Answers - Part 1

I've now answered all of the Ask Me Anything questions, but because I've written loads I think I'll split my responses up into a few posts, so as not to overwhelm you :) I've answered the questions in the order I received them. This is part 1 and there will probably be 3 parts in total :D

Emma asked 'How many tablets do you take each morning and night?'
When I first came home after my transplant I had to take over 80 tablets each day, but now I don't need many at all :) Currently I take 5 tablets each morning and 4 tablets each evening.

Every day I take:

• two 1mg Tacrolimus capsules and one 5mg Prednisolone tablet - which are my immunosuppressants that I take to prevent rejection
  
• one 2mg Loperamide capsule - which slows down my gut because my transplanted small bowel doesn't have all the nerve connections that a normal small bowel would have, so peristalsis (the action of pushing the food along using muscle contractions) doesn't occur
• one 25mg Losartan tablet - which helps to keep my blood pressure low as high blood pressure can occur as a result of the Tacrolimus and can damage transplanted organs, I think
• two 300mg Ursodeoxycholic Acid tablets - which regulate the bile flow in my transplanted liver
• two 150 microgram Cerazette tablets (a progesterone only version of The Pill) - which I take because I have an ovarian cyst, which isn't transplant related
  

I will be on Tacrolimus, Prednisolone, Losartan and Ursodeoxycholic Acid for life. Hopefully I won't need the Loperamide and Cerazette forever.

Jessica asked a few questions :)
'What was your favourite subject at school?'
Through primary school and secondary school my favourite subject was maths. I loved the way that it was very logical and answers were either right or wrong, with no grey areas. I took a higher paper in both my year 6 and year 9 SATs and sat my maths GCSE a year early (year 10 instead of year 11). As well as having maths lessons at school I also had a private tutor from the end of primary school until I became ill before my transplant, because I enjoyed maths so much. Just before I got my tutor my parents asked me what I'd like to do for a hobby. Did I want to have horse riding lessons like some of my friends? I said I'd like to have extra maths lessons, lol!

When I began the International Baccalaureate I started off doing higher level maths, but I hated it. I don't know what had changed, but I couldn't keep up with it and couldn't see the point in it. It was all theoretical and none of it could be applied to anything. So I dropped down to standard maths and then when I decided to drop one of my six subjects after developing ME and struggling to keep up, it was maths I dropped because it was the one that I was getting the lowest grades in and enjoyed the least.

In sixth form I was very lucky to have the chance to learn Japanese and that quickly became my favourite subject. It was quite a challege as I'd always struggled with learning languages before (French for a few years at primary school and German for 3 years at secondary school) and Japanese was especially difficult with 3 different alphabets. But I loved the challenge. I was always much more confident with reading and writing Japanese rather than speaking it. I've not studied Japanese since I finished sixth form back in May, but have kept all my notes and hope to continue learning Japanese at some point in the future.

'Do you have any particular jobs in mind?'
I quite like the idea of being a journalist in theory as I enjoy writing, but sometimes struggle with the imagination aspect of it, so I think journalism might be quite a good job for me. I think I work well with pressure and deadlines (when my health is good), but probably need to look into getting some work experience in this field before deciding whether or not that is where my future career lies.

And I quite like the idea of working with children too, but I'm not sure in what job. I've considered primary school teaching, but am aware now that there is lots and lots of paperwork involved which the teachers I know don't like at all. I can't imagine I'd like working in a nursery with so many children as it sounds quite hectic. Hmmm. My Mum has a friend who is a Nanny, which I quite like the sound of, so I might quiz her a bit about that. Again I think I need to get some practical experience first.

'Would you like to study at university?'
The only subject I can see myself studying further is Japanese. I think that you have to really enjoy a subject to study it solidly for 3 years and the only subject I really enjoyed at sixth form was Japanese. When I was considering going to university I went to visit one of only a few universities which offers Japenese at degree level. The course sounded fascinating but it also sounded like a lot of work. It was then that I realised that I wasn't well enough to go straight from sixth form to university. I'm still not sure about whether I will go to university when I'm better or not. I can be sociable, but sometimes I just prefer to be alone and the idea of being surrounded by other students 24/7 at university scares me a bit, lol. It's not something I need to think about now though, so I'll see how I feel when my health is a bit better. If I do go to university in the future I think it will be to study Japanese.

'Where do you see yourself in 10 years time?'
This is hard! I'd like to be in a relationship that I'm happy with. Marriage isn't important to me though. I'd like to have a child or two, or be considering having children. And I'd like to have a dog. I'd like to be healthy and not have to worry about my health. I'd like to have a job I enjoy, but I don't know what it might be yet. I'd like to have travelled more, but ideally be living in or very close to London :D

'Where did you get your haircut?!'
I've answered this in the comments on this post :)

'Do you have any pets?'
No unfortuntely :( I've had pets in the past - my dad had a border collie when he met my mum and she survived until I was a baby, we had 2 cats when I was small but they both ran away one week after the other, I got loads of stick insects from the school science department when I was in year 7, I had a hamster when I was about 12 I think and we had a cat when I was about 13 but he ran away. So we've not had much luck with pets in our house, don't think cats like us much!

Now my parents say that me and Alf can't have any pets while we live in their house as pets are too much work. We've tried arguing and got round it a few times as you can see from the pets list above (stick insects, hamster and cat were exceptions) but they're sticking to it now. I've always wanted a dog, so am definitely going to get one when I have a house of my own. Before my transplant I wanted a pet ferret and when I was very ill my dad actually promised that I could have one when I was better. But then my consultant said no :( I don't really want a ferret any more as I've kind of gone off that idea, but when I've mentioned that promise to my parents in the hope of getting some kind of pet, they both claim to know nothing about it!

'I don't really think this is the kind of thing that is appropriate to share online and perhaps too personal...but I was wondering(so thought Id let you know my thoughts!) about your donor and their family. It would be interesting to hear what made the family make such an amazing decision at a difficult time, and the circumstances. I certainly wouldn't feel it was something Id want to share online if I were you.'
I know quite a bit about my donor and her family so I'm going to have a go at responding to this as best I can. I'm going to use any initials instead of names though, as I feel that would be most appropriate. My donor, E, was 19 when she died very unexpectedly from a brain haemmorage. E was the youngest of 3 sisters and both of her older sisters work in the medical profession (J is as a doctor and C is as a nurse), so organ donation was something the family were aware of and had discussed. My donor's family were aware of E's wishes to be an organ donor, so the decision wasn't too difficult for them.

It is really important that when someone signs up to the organ donor register that they also talk to their family about their wishes because it can make the decision about organ donation so much easier for the family if something happens to their loved one and they know what their wishes were.

'Perhaps it might be better to ask 'How did you feel to be a recipient of an organ/organs?''
This is a tricky question. I felt lucky because I know that my transplant saved my life and I felt excitement at the prospect of my future. But it was tinged with sadness too because I knew that someone had had to die to enable me to live. I've tried not to dwell on that too much though.

I've heard some stories on the Internet about transplant recipients finding it strange to have someone else's organs inside them, but I've never found that. The way I see it is that my 3 transplanted organs are inside my body and have my blood running through them, so they're mine now. So I don't find it uncomfortable or disturbing. I will never forget that they were once my donor's though. Now I've become more involved in the transplant community and have seen people's time run out while on the waiting list I am aware of just how lucky I am that I received my call in time.

I just want to add a bit more about my relationship with my donor family now. When I was in hospital recovering from my transplant I was visited by a transplant co-ordinator who sat down with me and my parents and asked if I wanted to know a little about my donor. I said yes. At that point all I think I was told was that my donor was female, she'd been 19 and I was also told what area of the country she was from. I can't remember if I was told at that point or later about the cause of her death. And I was told that I could write to my donor family if I wanted to, but I mustn't expect a reply back, as the family don't always reply. I knew that I wanted to make contact with my donor family, but decided to concentrate on getting better and out of hospital first and then I could write that letter when I'd recovered a bit more and it'd be more positive.

When I was about 3 months post transplant (so about the time I returned home) we received a phone call from the transplant co-ordinator saying that my donor family had written me a letter and I was asked if we would like to receive it (all correspondance has to go through the transplant co-ordinator to check suitability of letters etc). I said yes of course and waited for the letter. I waited and waited, but it didn't come. We assumed that it had been lost in the post and so contacted the transplant co-ordinator who said that they'd photocopied it before forwarding it on, so would send us the photocopy.

Then the photocopy and the actual letter arrived within a couple of days of each other. I was so glad to receive the actual letter because the photocopy had chopped some of the writing off and a photocopied photograph was no replacement for a real one. The letter was from my donor's eldest sister, J, and was lovely. It was written inside a card and my J wrote on behalf of her family and told me about her sister (and included a beautiful photograph of E) and sent her best wishes to me. J included her email address and so instead of replying with a letter though the transplant co-ordinator I emailed her directly.

Since then we've been in contact via email every so often when I've updated my donor family on my health and life (and sent them some photos of me) and also on significant occassions such as my transplant anniversary, Christmas and my birthday. J passes my messages onto her parents and says that it helps their loss to hear how well I'm doing.

Just over a week ago I received an email from my donor's other sister, C. She said that she's enjoyed reading my emails to J and just wanted to make contact to say hi. I replied to that and have since received another email from her.

I feel really priviledged to be in touch with my donor family as I know most transplant recipients don't get that chance. I'm very happy to update my donor family on my progress as I feel that's the least I can do. And being in contact with them makes me happy too :)