Unexpected Mail

After finishing up at the hospital on the 15th, I was told by Edna that she would call me to advise me of the results of all my tests. she also said that I should call her if I hadn't heard anything within two weeks. This afternoon (which is generally when my postman prefers to deliver, its rarely mornings) I went and picked my mail up from the doormat. Only two letters and thankfully neither was a bill. When I turned the envelopes around I saw a Leicester post mark! I was immediately excited and nervous with a small case of butterflies.
I don't think I've ever ripped open a letter so quickly! A letter from the hospital which was mailed to my GP and had Ben and myself cc'd in. a lot of preamble about what I am planning to do and that I have been advised of the risks, also included a list of the risks (scary). But on page 2 of the letter I found what I was looking for, details of tissue typing and the cytotoxic cross-match. These two factors are how the doctors determine if I am a suitable match for Ben. These factors had been explained within the talk that we attended, so I figured I'd make sense of it all. The tissue typing performed proved Ben and I to share a 1-1-1 mismatch, do you think I was able to remember what this meant? Of course I wasn't! Sitting, staring at the letter, saying it out loud over and over but still couldn't remember what this meant for Ben and I. Next was the cytotoxic cross-match which proved to be negative. Again, I was totally baffled!
The next thing I did was call the hospital and isn't it typical that I had these results in my hand but didn't understand them and then the phone went straight to voicemail! I was a little frustrated about it and expected to be waiting most of the day if not til tomorrow for a call back. Thankfully my phone rang shortly after I had left a message. I was delighted to hear Carly's voice on the other end of the phone. I explained what I had received and asked about the results. When it comes to tissue typing, the result Ben and I have (1-1-1) is typical of a parent and child match. she said it was great that we had 3 out of 6, a really good result. Next was the cross-match, I was a little panicky thinking that negative may bring bad news. I was wrong! Negative actually means that Ben's blood didn't fight mine, which for the purposes of this test is great. So, there we have it folks, I'm a great match for Ben so theoretically all should be well.
The only thing left is to wait on my GFR (kidney function) results. Providing I have a decent score and my psych assessment doesn't flag me up as a complete mentalist, or Munchhausen's sufferer we should be all systems go! Carly even asked me whether Ben and I had discussed when we would like to do the surgery. I was completely shocked, I thought that was the kind of thing the hospital sorted out. Apparently, we can pretty much pick and choose when we want to go under the knife for this thing. They let people choose their own times with live donation so that it can be arranged around other commitments. Great for me as I expected to be potentially taking my ickle people out of school for a week to stay with my family while I went for surgery. Now at least we can find a time when they are not at school, but I'm thinking that maybe the original idea is better. At least with taking them out of school I can get work from the teachers for them to do. If I go for surgery in school holidays it will be a bit rubbish for them really, either not having me around at all or seeing me stuck in a hospital bed. Either way its a bit pants for them, but in the grand scheme of things I don't think it's too much of a sacrifice when you consider what the outcome may well be.

Urine, Blood And X-rays

Tuesday morning started out ok. I managed to get up and get ready on time that is. Then I heard my phone ring, saw that it was Ben and got nervous. He was quite poorly and was unable to pick me up, so off I went to the hotel reception and asked them to call me a cab. I waited a while and then thought I’d better call the hospital, to let them know I may be late.

First task of the day, a urine sample. Well I say ‘a’ sample, but I had to pee in two separate pots. I never understood why they give those skinny pots to women for urine samples. We can hardly direct the flow like men do! Anyway, urine done I am lead to another part of the hospital. It seemed to take forever to get there. Once there, I was called in to see the nurse and had some bloods taken. Seemed like my nurse (Edna) was taking loads. The next step was injecting a radioactive tracer into my bloodstream, oh the joy of organ donation. As all this was taking place, Edna started to ask me a few questions about why I’d decided to help out Ben in this way.

I went on to tell her about an amazing act of kindness carried out by him and how I thought good things should happen to good people. If you know me personally, you know I like to help people out where I can. So, back to the tests, after having this tracer injected I went off to have an ECG and then took the print out back up to the ward with me. I had to go in a room with a doctor after having more blood taken. All I can say is that I’m glad the doctor was female! After having a bit of a chat and noting down my medical history along with details of whether there was any history of certain illnesses within my family, it was time for a bit of a physical check up. I’d already had my blood pressure, height and weight measured by Edna.

I was totally shocked when, after listening to my chest, the doctor asked me to remove my top and my bra. I thought I was donating a kidney, and couldn’t figure out the relevance. She explained that they actually need to check me for everything, just in case there’s something I don’t know about. So, as well as having a my breasts examined, I was checked for hernia and even had the pulses in my feet checked. Apparently I have great pulses in my feet, I think that means I passed that part. Once I was all done there it was back to Edna, so she could take more blood for the purpose of tracking the radioactive tracer. The next step was another walk around the hospital in search of the x-ray department. Thankfully all I had to do there was take my bra off from under my t-shirt. I definitely made the right choice of outfit for the day. So with the chest x-ray done, I went in search of a shop to buy some cigarettes. Awful habit I know, but I just don’t seem to be able to quit! I’d already text Ben to let him know I was in desperate need of nicotine, not sure why I bothered as he just laughed about it, now when he makes jokes about me I just remind him of the plastic tube that he'll have pulled out after surgery(a whole other story, I'll be sharing it soon). Turns out there are no shops within walking distance of Leicester General Hospital. Can you believe I actually went and explained my situation to a total stranger!? What an embarrassment, but oh how I needed to get some nicotine in my system. Lucky for me, a lovely lady was kind enough to let me have not just one, but two of her cigarettes.

Then I had to head back to the ward for the final lot of blood to be taken. I was a little early getting back to the ward so had plenty of time to chat with Edna and the girl on ward reception (I never did get her name) lets call her Flo. Flo and I discussed our kids, Edna made us aware she’s a single girl through and through. Although, when telling us all about this fella she was due to see that night, she went ever so swoony(I may have made that word up) lol. It was good to have a girly giggle to pass the time when I was so anxious to leave. All I could think about was getting out of there and home to my ickle people. Finally, the time came to take my last blood sample. I was so relieved to be finished and free to get home to Suffolk and when I did it was amazing! My children came running at me and almost knocked me over with their cuddles. it was almost as overwhelming as giving birth! My heart had been aching for the entire trip and being back with my babies was the most amazing feeling ever. Now I'm home its a waiting game. Edna said she will phone me, to let me know how the tests went and if the cross matching was successful. Did I mention they have to mix Bens blood with mine to test for a reaction? Well they do, it gives an idea of how the recipient will respond to the donor organ. So, while I wait, I intend to give you lots of details from the talk we had to attend. Its safe to say, I'm glad I'm the donor and not the recipient!

Lost In Leicester, Late To Hospital And Turning Left

Today didn't start as well as it could have, I kept hitting that damn snooze button. Just as I was putting my shoes on the phone in the room started to ring, it was reception, Ben had arrived. This would be our first meeting. I wasn't even nervous but had expected to be. Down the stairs to meet him I went and we headed across the road for breakfast.
Breakfast was good and I also had the chance to finally post last nights entry. Whilst doing so Ben asked if he could have a read. I was extremely nervous to let him see it, because this is as much his story as it is mine. I desperately wanted him to like it but at the same time I didn't want to show him! After I had published Sunday nights writing, I passed over my notebook for him to see. I waited. I watched. He nodded. That could only be a good sign, I thought, and it was. Knowing he thought it was good made me relax instantly. A bit weird to be desperate for the approval of someone you've only just met, but I couldn't control it. We chatted away, finished our breakfasts and headed out to the car.
Now then, getting to the hospital was a mini adventure in itself! It appears that Ben has a thing about turning left, and a tendency to forget where he should be going. It made for a fun journey with lots of laughs at least. Suddenly Ben said he wasn't sure if we were going to the right hospital (there's three here in Leicester). I assured him which one it was and he continued to turn left. It was at this point I had a thought 'lost in Leicester' and just as I did, Ben said it out loud! We agreed that would be a great title and it kind of set the tone for the rest of our day together. We arrived at the hospital. Then we got lost again as neither of us knew which part of the hospital we needed to be in for the talk we were attending. So there we were, wandering around the hospital. We saw the ward I have to attend on Tuesday morning and figured that would be a good place to ask about where we needed to be. Finally, about twenty minutes late we got to where we needed to be (thanks to a nurse showing us the way). And guess what? We had to turn left!
The talk itself was incredibly informative, they didn't leave anything out. Its a lot for Ben and rather weird as they leave his kidneys in and put mine in at the bottom of the abdomen and connect to the vessels that run down your legs. Amazing stuff really and seriously intricate work sewing veins and arteries together. The second part of the talk was given by the surgeon himself. He and his team have performed 364 of these procedures, and Leicester General Hospital and the team there were the first in the UK to carry out the procedure Laparoscopically. Must tell you I'm glad they no longer need to use open surgery, they actually used to remove the rib covering the kidney from live donors! All I can say to that is, OUCH! I think its fair to say that after all the information and statistics I've heard today, I'm so glad to be having this carried out here in Leicester.
Once the talk was over I thought we'd be leaving. Wrong. I had to go and have some blood taken. You know those tubes they fill for a blood test? They filled five, that's right 5 of them. Then I had to take my blood samples and go back to the ward I'll be on tomorrow. Once there, I had the lovely task of providing no less than two pots of urine to be sampled. I couldn't even do that without a little drama. Off I went to the ladies so I could fill these pots, and then I washed my hands. Problem was, after washing my hands I turned the tap the wrong way. Instead of turning it off, I turned it on full and all the water came gushing over the edge of the sink. So there I was, in a hospital toilet with two pots of urine and bent over mopping up all the water on the floor with paper hand towels. Even my handbag got drenched. So that was just another reason for Ben to take the pee out of me, luckily for him I have a sense of humour!
Today I managed to have that chat with Ben, telling him to open up to mum and dad a little more. He said he would, I hope he does. I told him no saying “it was alright” and leaving it at that. After the talk with mum and dad last night I'm sure that's how it would have gone. Just have to hope he listened properly and took it in, I have a feeling it will make a big difference to their peace of mind. In fact, Ben and I talked about a number of things today, I've learned a lot about kidney failure and just how much it can affect a persons daily life. The best thing is that we managed to talk and laugh about anything and everything, I guess it was a little like bumping into a friend you've not seen in a while and having a catch up chat. But slightly different because he got to see two of my bodily fluids on the first date! (And don't go reading anything into that, he's very married and not my type – sorry Ben). Ben and I also discussed how our story would be a nice news article, make a change from all the doom and gloom. We even discussed the possibility of a movie based on our story, Ben suggested George Clooney to play him. I was thinking someone gorgeous like Thandie Newton to play me, Ben suggested a midget! Although when the nurse asked if we were together, I was quick to pull a face and say “no way!” couldn't bear to let him get another dig in. if he did it probably would have been another height related one. That was pretty much how we carried on all day in-between the serious conversations so all in all good fun.
My second and last night in the hotel is a much more comfortable experience. I now know the man who is coming to pick me up in the morning and I feel less worried about my babies. Having spoken to them and my friend, I know they have been fine. They are excited for me going home tomorrow too, my little man squealed with excitement when I told him I would be collecting them from their friends house after tea tomorrow. My beautiful little princess was just a bit rushed on the phone, I managed to interrupt her playing a game with her friend, how rude of me! Well it's time I got my head down, don't want to be hitting the snooze button constantly tomorrow, like I did this morning.

Uexpectedly Meeting The Parents!

What a start to the day! Nerves kicked in as soon as I woke up.Excited nervous, not scared nervous and of course the sadness at knowing I'm leaving my children for a few days. Spent most of the morning checking and re-checking the kids things to make sure they have everything. I feel like one of those control freak types. So much to do but no idea where to start, far too distracted by the worry of being unavailable if anything happens to my precious little people. Saying goodbye to the kids was the hardest thing I've ever done! As I walked away my eyes filled with tears and there was an immense aching in my heart. Almost as if it were being ripped out. I couldn't catch my breath, couldn't see through the tears and wanted nothing more than to turn around and take them back home.

So here I am sat in my room and missing my babies. On the upside I have met two lovely people today. Unfortunately Ben couldn't meet me from the train, but he did send his parents instead. I was ever so nervous and a little apprehensive about having these two strangers meeting me in this place I've never been before. But what a lovely couple they are, and what a lot I've learned about Ben from them! I cant wait to meet him tomorrow and tease him about it. I mean, if he can tease me for being a bit on the short side, then surely I can tease him about the things his parents told me, right?Anyway, as I got off the train here in Leicester, I kept a close eye on my phone. Ben had told me to expect a phone call from his father so we could find each other. There was no phone call other than the one I made to Ben, where he described his parents as follows;
“my mum's got dark hair and my dad's got grey hair”
with that description I went off in search of mum and dad. Just as I came to the main entrance, I saw a lady with dark hair, she was standing with a man who had grey hair! I'd only gone and found them based on the seemingly ridiculous description Ben gave me. Don't know about you, but I never thought that was going to be enough information to find them.
What a lovely couple mum and dad are. I discovered they'd actually travelled a fair distance to come and meet me, and take me to the hotel. We had a good old natter in the car about Ben and his ways, was a very amusing and entertaining conversation. Immediately at ease with mum and dad, we had a short conversation about the reason I'm here in Leicester. As we discussed it more and I gave mum and dad the details Carly had given myself, they looked a little surprised. Turns out Ben doesn't really talk about much of what's going on with them. Its a shame really, mum and dad are clearly keen to know about what's happening and how he's doing. I told mum and dad about something I saw on the Internet which suggest the old kidneys are left in place in these circumstances and a donor kidney would be in addition. Mum and I came to the conclusion that Ben had only got sick because he wanted more kidneys than everyone else, and I obviously had to state how greedy he was as after transplant he'd have three while I was left with one! Very good that we could joke like that, of course we all are aware of how serious it really is, but who wants to dwell on the doom and gloom in life? Not me, that's for sure. Back to the mum and dad anyway, went a little off track there, apologies. Dad also said they'd learned more in a short conversation with me than they had ever learned from Ben. I hope I can talk him into letting them in a little more, I'm a mum and would hate to have my child ill and not know what was going on (especially when there's a good chance of them being made better).

Dad gave me his number to keep in touch, I feel a little bad that I have so much information and have spoken to Ben's coordinator when he knows nothing of what's going on. Not much I can do about though is there? Main thing is that I'm here and I'm ready for all the information and tests. And I'm definitely ready to meet Ben, finally. I never expected to be having a good old natter with his mum before I met him, she is a very warm person. I also have to consume as much food as possible tomorrow as I'm not allowed to eat on Tuesday because of the tests being done. I will be grumpy and whiney on Tuesday, no doubt about it. I guess I should really get some sleep as Ben and I have an early start tomorrow at the hospital. I've no idea what to expect, but after meeting mum and dad, have the feeling Ben and I will be the easily distracted kid paired with a nerd at the back of the class. Perhaps it doesn't really matter if only one of us pays close attention, I mean, Ben will have to go through with it whether it's with me or someone else if he ever wants his life back. I really hope they are happy with all my test results, I really want to be able to help. Even more so after meeting his parents, and that feeling will possibly increase tomorrow after meeting the man himself. Its an odd feeling, being full of hope that you can have an organ removed, or maybe its me that's odd? Either way, I hope you all have your fingers crossed for Ben and I!

A Slight Problem Swiftly Resolved

There I was, waiting for the next child to come through the door (I volunteer two afternoons a week at a primary school and do one on one reading sessions with a year 4 class). When I checked the time, couldn't help but notice a new text. It was from my friend, let's call her Dee, who agreed to look after my little ones from Sunday afternoon.

I panicked instantly when she asked about which weekend I needed her to have the kids. We had discussed and arranged everything just under two weeks ago. You know that sinking feeling you get when you just know somethings about to go horribly wrong? When I repeat the plan Dee tells me that she's just been informed she has to work! All I can think is expletives and panic starts to rise inside me but I have to hide it. The next child from my class list has arrived and I must concentrate fully on them. The rest of the afternoon in school passes quickly (as it always does, its brilliant!) and then I head off to collect my own little people.

Once home I was busy trying to figure out what to do. The worst case scenario? Cancelling, which in my mind just wasn't an option. After a few texts and phone calls I started to panic a little more and went back to Dee to see if there was anyway she could get her boss to understand just how important it was. After a bit of a wait Dee called me back, it wasn't an ideal solution but certainly better than cancelling this trip to Leicester. Turned out she was told it would be OK to have the kids with her at work as long as it was only for a short time, so back to the PC I went and hunted for later train times.

Whilst on this search for the latest train I could get, that would get me to Leicester that night my mind did a little overtime. So much stuff whizzing through my head, how amazing my friends are (two of whom have booked holiday from work to care for my children while I'm away), how scared I am about leaving my kids. I was concerned initially that in order to fit in with Dee's work commitments, that it may be the only train I could get would mean staying overnight at the halfway point. That really wasn't an option at all, so I got back to Dee with the latest I could leave to get me all the way there. Finally the call came, it was all systems go (again).

A feeling of sheer relief swept over me during that phone call. The thought that I may have to let down Ben made me feel sick in my stomach, and I became so emotional about it. I surprised myself to be honest, fancy feeling so strongly about not wanting to let down a perfect stranger! Quite odd, I can assure you, but oh the feeling of joy when I discovered cancelling wouldn't be necessary. An amazing feeling and the most bizarre all at the same time.

And speaking of bizarre, I can't quite believe the things that have been said to me about this blog. I struggle a little with people saying such good things about me. In my head it seems I'm just doing something that I'd like to think anyone would. It's only a kidney and you can live a perfectly normal life with one, what doesn't make any sense to me is why anyone wouldn't do the same. This blog is being written purely so I have an outlet for my thoughts and a diary of the journey Ben and I are embarking upon. However, as some of you have clearly been touched by my writings so far, it would be great if you could put your cursor over that kidney research picture it will direct you to their website. Or click on the 'join the organ donor register' picture, to register as a donor online. Did you know that not only can you offer yourself as an organ donor after your death, but you can also join a living donor register? Well you can! And people who receive an organ from a living donor have higher survival rates and live longer lives.

That's all for this instalment, but I'll no doubt have something to add this Sunday after meeting Ben for the first time. Thank you for joining me on this life changing journey!

The Moment It All Became Real

This whole thing started on a whim, purely because I like to help people where I can. It was (for a couple of weeks at least) a lot of talk and didn't seem quite real. Now though, I have received a confirmation letter along with 'Patient Information Leaflets' about the tests I will be having.
Now I'm extremely nervous, it's all suddenly become very real. I'm petrified about leaving my two children in one county while I go off to another for two nights! I've never been so far away from them and never have they slept under a different roof to me for more than one night. I have only a few days left till I go for the talk and tests (or as I say to the children, 4 sleeps till they go for a sleepover at their friend's house).

On the upside, as I have offered to be a donor for a specific person, I get to meet the man I will be helping. As far as I am aware if you sign yourself up as a live donor, you don't know who you are helping. It's a little strange to know that I'm off to meet someone for the first time after having made arrangements to change their life completely. I'm also a little perplexed by the number of family and friends telling me I'm brave. I think the brave one is Ben. He and his wife, carrying on with their life and raising their kids. No doom and gloom, just a real positive outlook and a normal, stable home for their little ones. I mean how many of us would manage, in what seems such an effortless manner, with spending three out of every seven days away from their family hooked up to dialysis machines?

So now I'm sitting here and thinking how exciting it is to be meeting this amazing person Ben. He really has done some awesome things. I'm not using the term 'awesome' lightly, but in the true sense of the word! What a giving, selfless man he is. A true tragedy he has been struck with this illness. I'm not only excited to meet him, I'm excited to be able to offer him the help he needs. I'm excited to do something truly worthwhile (apart from being a mother). And as I sit here with a million thoughts running through my head, a little smile lifts the edges of my mouth as I think of how much life could change for those three young children. Perhaps then I am not merely helping out another human, but in fact following a maternal instinct which stretches further than my own offspring?

I seem to come up with more and more reasons which make this seem such an easy and obvious decision. So far I've been unable to think of any reasons why this may not be a good idea. I am glad I couldn't sleep that night, I commend Adam for trying everything he could to find help for his friend. I am truly glad of the oppurtunity to do some real good in this sometimes cruel world. All the better that it is for one of life's genuinely good people. People really can be amazing, if they choose to be.

How It All Began

So, there I was. Laying in bed, tossing and turning. I just couldn't sleep that night. I'm a total twitter addict so I had a look at what people were tweeting.

I came across a tweet, a tweet asking for help. There was someone with a friend in need of a kidney transplant. The only information given was his blood group, A rhesus negative. Coincidentally, the same blood type as myself. I sent a direct message to the person who had mentioned it. I asked for more details.

For anonymitys sake I will call the tweeter 'Adam' and the person in need of a transplant 'Ben'. After being told that 'Ben' done some pretty amazing things for others, I felt that if anyone deserved a shot at a new life, it was him. Besides, anyone whose friends are willing to offer £10k to save his life has got to be an awesome person, right? Having been given Bens name and number, I gave him a call. Took a few days of messages for us to finally have a chat, but, we got there in the end.

I feel I must make it clear at this point that I actually made Adam well aware that I would help his friend if I could, but would not want the money. Selling my body parts (internal or otherwise) just isn't for me. Besides, who wants to take all the savings away from someone whos life you just prolonged? It just seems so wrong to me. So after a few phonecalls and text messages, Ben told me that his nurse was not allowed to contact me. I called her and let her know I was a blood match and hoping to help Ben. After being directed to speak with my own GP due to medication I take for my own conditions, I was givn the all clear to go ahead if I wanted.

Once I got back to Bens nurse (whom I will call 'Carly') and made her aware of this, it was all suddenly very serious. Carly explained that Ben and I would need to attend a talk together, along with other transplant recipients and donors. The point of the talk? To make us all aware of what the risks are and what the procedure involves for both parties. I have also been booked into the hospital for a myriad of tests to ensure compatibility and to be sure I am fit and well enough to undergo the surgery. Anyway that is where all this began, who would have thought that twitter really has the potential to help save lives!?