Saturday 25 October 2014

The Meeting

The Meeting
                          

Part One - Before.

   Imagine meeting someone for the first time , someone you've thought about often, if not daily for over 12 years. Someone whose life became entwined with your own just because they answered yes to a question. Someone who saved your child's life while their own child was hooked to machines dying, brain stem dead. Tomorrow I'm doing just that and I'm excited, nervous and confused as to whether it's the right thing to do. 

        I've never had any real desire to meet this lady, a little worried as to where this meeting may lead us. I guess a lot of donor family meets recipient family stories we get to hear about are played out in the media. Sometimes I've not been comfortable with what I've read. One story in particular has always freaked me a little, an American story, where the donor mum has wanted to hear her daughter's heart beat one more time. So when they meet she uses a stethoscope to do just that. I know that for many people this isn't an issue, they'd be happy to let this happen. I know for me it's just not going to happen. 

I began writing to R straight away, the week after Eloise's transplant, sending updates and photographs when requested by the donor coordinator. I have subsequently found out Rebecca never asked for these personal updates and was content with the yearly updates donor families can have via their coordinators a basic yes they are alive and doing well. She most definately never wanted a photograph ! In fact she couldn't look at them but her husband S wanted to see Eloise. I'm saddened by this as for years she must have thought I was pushing Eloise on to her. We are going to look into this . After 9 years R wrote back to me. I have 5 letters now in a drawer. We no longer write to each other as around this time last year R found me on Twitter as we followed the same account. We email regularly several times a day , some days and at the least weekly. R was, is very supportive of me and Eloise, she was great during all the blips, like many she'd never considered the implications of post  transplant life but has been happy to learn. From our emails our relationship has grown and strengthened. We decided at some point we'd meet just the two of us, mother to mother. No time scale was decided, we just knew one day we'd meet. We also discussed Eloise and decided meeting her was not an option at the moment.

      So we just plodded along until last week, we got brave ! I'm taking Eloise to London tomorrow as she's off on a PGL camp with GOSH transplant team and a group of teenage heart transplantees. I asked if R lived near London. Then a meeting evolved from that, it seems like a golden opportunity as I'm in London anyway. We'll meet for coffee, chat and see how the day goes from there. I'm thinking we'll get along in reality as we do virtually but who knows. I guess it's just time to find out ! 

      Not sure if I'll sleep much tonight , but hey what's new ! Outfit all sorted, what do you wear to such a meeting ? I've gone for a frock, and my burgundy shiny shoes, I needed clothes that make me feel comfortable and happy. I can hear a certain man saying "Women !" at this point .

Will we hug ? Both of us have confessed to not being very touchy feely

Will we cry ? I really hope not, by "talking" for nearly a year I hope we are past a lot of the raw emotion, need tissues any way as I'm sneezing like mad at the minute ! 

Will we have anything to say to each other ? Please no awkward silences ! I'm hoping we can chat freely with each other. 


Part Two - After

Yesterday was so the right thing to do, it had to happen the time was right for us both. Eloise's health is back to normal, she looks and feels amazing and her tests this week confirmed this and reassured me. My life is in a really good, settled and quite normal, I guess , place ! R was also ready.

     As Eloise's coach was late R window shopped and got a cup of tea while she waited for me. I walked to our meeting point and saw a lady sat down that had to be her. I approached, she looked shocked to see me, we hugged and I sat down. I asked about ordering tea but R said she needed to move on, too unsettled at this point to sit and chat. So we walked, I had pre warned her that I wanted to walk so our shoes were comfy ones ! I'm so glad it was a dry day as we walked initially to Covent Garden, chatting all the way. Of course it was very busy . In the end we found a small independant cafe so I could have lunch and we could get a drink. We stayed until the cafe shut at 4pm. Conversation flowed no awkward moments, no upset, lots of remembering, sharing and laughter too. It was like we'd always been friends, two halves of the same story. 

    I'm not going to share what we spoke about that's just for us but we both said we'd share this information with our friends. It rendered us speechless and is such a huge coincidence. R told me which hospital she worked in so I said I used to work in Edgware General '94-'96 on Rainbow ward the paediatric unit. R was working there at that time, I even walked past the building she worked in , she's a haematology nurse and the Cord bank was in Edgware. I then said I lived in Edgware as well in a rented Terraced House. R asked where so I told her. Can you imagine that for a year we lived on the same road ! '95-'96 R and her then partner S owned no 55  and we rented no 33 so just 12 houses apart. We probably passed in the street ! What are the odds on this ? It's just quite unreal. 

     So we had another cup of tea as R wasn't ready to let me go ,after walking through Leicester Square and Piccadilly Circus . We then caught the tube at Oxford Circus and said our goodbyes with a hug at the Baker Street tube stop where R got off. She left saying she was really glad we'd met, she had no desire to meet Eloise and felt satisfied with our meeting and therefore no need for us to meet again........her 6.30am email says differently this Morning, she hopes we can chat over more cups of tea in the future. 


Wednesday 22 October 2014

If only........

                                     
If only........

       Wouldn't it be wonderful to be lucky enough to receive an organ transplant and that be the end of it . Transplant surgery , re plumbed donated organ , feel 100% better and go and live a healthy long, long life into old age.

 Whereas in reality you are never far away from the thought that this transplanted organ may fail you or your loved one. 

     Your daily medication for a start , a constant reminder that life is now different, that you rely on those pills to keep you alive and well. But do they keep you well ? Immunosuppressants can actually make you ill, too high a level in your blood stream you damage your other organs , kidneys for example and you catch every germ going. Too low again you're ill as you reject the transplanted organ. Such a fine balance and to achieve that balance you need regular blood tests. Who can say they like being stabbed with a needle ? Then other medications are added into the mix, statins to keep your cholesterol low to help prevent coronary artery disease. The further down the transplant road you get your pill pot selection seems to increase. Eloise now needs Amlodopine to keep her blood pressure down and Ivabradine to keep her heart rate down. 

         

      Anyway Today Eloise had clinic an anxious time for me but thankfully not for Miss Horizontal ! First hurdle the ECG , yippeee nice tall peaks , good heart rate, you get used to looking at these things. I know what to look for , what indicates rejection. Low voltages. Just the echo to get through as Eloise passes her examination on seeing her consultant, he's pleased with how she looks etc, heart sounds, liver, etc. Find myself holding my breath, gazing at the screen for signs of increased fluid. The tech seems confident, doesn't call anyone in, remains chatty and in eye contact all reassuring signs , believe me, I can read these people. Echo is reviewed by Dr M and all is good, great heart function. We escape clinic next appointment is in 2015 in GOSH, that sounds good, back to our normal 3 monthly routine. Yep normal, normal for a Transplantee .

      If only..........

  Eloise hadn't caught that bloody hand, foot and mouth virus. 

    I'd rather it hadn't been this way of course but I know we got the best possible outcome in a dire situation. Many people don't even get this second chance, time runs out they die waiting. Eloise has had 12 amazing years, normal childhood. I want more of course I do, we will spend our time bouncing from one appointment to the next. I can't look into the future........can you ? In case my daughters not in it. I'm afraid of that. So Tonight I'm reflective , I'm thankful for all I have, for the life of my precious girl, she is special and I love her deeply. So come on medical advances, come on science, come on drug developers, come on researchers please , please find I way to keep my daughter and our transplant family fit and well for many , many decades. My daughter has the determination , we just need your skills then we'll be invincible !  


                                     

   If only.......

If only we were all organ donors, if we all signed onto the Organ Donor register, maybe more people would get their chance. Thinking of my friends with children waiting desperately for their call, living in limbo at home or separated from their families while they wait in hospital, hooked up to machines to keep them alive. So, so hard, thinking especially of two families who are waiting for second transplants for their sons . They've experienced life post transplant only to have the organs fail and be rejected. Now they wait for a more complicated second miracle. 

   

Sunday 5 October 2014

The Future , is it bright ?

       

It's 8am and I'm sat here in a beautiful Hotel suite in Chepstow, which I have been lucky enough to enjoy this weekend with Warren. The hotel is set in the Country and it's ultimately a golfing venue. We've eaten out, shopped a little and enjoyed the hotels leisure facilities and bar. The jacuzzi just highlighting the fact a hot tub needs to feature in my future ! 

        

       Living the dream of many people with demanding families I guess ? Child free, 100% adult time. No demands on my time, no nagging , no assault on my senses from multiple electrical devises , no arguing, no fights to referee. No noise really right now, except the odd bird chirping. How is this achieved ? Through heart ache and pain initially I guess ,my marriage break up and ultimately my husband's affair. Now we're 3 years down the line, life's moved on, it's evolved, improved and it's a better life. For me, my children and for S I'm sure. In fact S arranged and paid for this hotel stay for me and Warren with his hotel loyalty points, and we got an upgrade on arrival. So we're here and S is where he should be too, looking after the children and spending quality time with them. We all win, all 7 of us in this equation. Not sure S's partner is ever really a winner , she's alone every other weekend.

            I'm reflecting a little on my marriage Today , I suppose wondering if we'd spent quality time like this weekend I have had with Warren would it have survived, adult time being S and Bec, being a couple not just parents, mum and dad ? In our case I think not, there was an underlying incompatibility from the start of our relationship which we both ignored as we wanted each other. Both admitting we were the opposite type to the person we'd normally be attracted to. I guess for some opposites do indeed attract. So my friends if you can get some child free time spend it with your other half, enjoy each other's company again, date. I do believe in date night, perhaps it should be added into the vows of marriage ? 

     Right as usual I've digressed from the title The Future, my future, my families future. It's looking clearer now, we're going to be fine aren't we ? 

Back to living the dream , I'm living it with a thin line of nightmare running through it. Why do you think I'm an insomniac ? Something obviously keeps me awake, something(s) worry me. They can be simple day to day worries like the boiler being a little dodgy and clanging away to Eloise's health. So a whole range of things and problems. Some you'll understand others I hope you never have to. I guess I still over think things , let them whirl around in my head before putting them once again in order so a sense of calm and often common sense can prevail. I guess it's worse when you are on your own. I know I have Warren in my life but I'm fiercely independant and possibly a little too English ! 

Eloise, she looks great at the minute but she always does even during a medical emergency. I'm hoping things are all good with her heart and the events of last year are behind us. Hopefully she'll have her bloods taken next week and her Tacro level will be stable and on the 22nd we have an appointment in Bristol to see RM her cardiologist. I need her well, I need her and her transplant family to have a future. We need medical advances, new procedures, research and new medication. I believe these things are possible, I have hope. My girl will have a future. At school she does dance instead of PE at the minute and her teacher thinks she is better than the GCSE students and wants to enter her in a competition, those of you that know Eloise in reality will smile at this. We often joke she is Miranda Hart's love child as she's so awkward ! 

My other three gorgeous children are doing well, Leah has her first Saturday job, she'll enjoy that and develop new life skills. I think she's destined to have a bright future as long as she puts the effort in and grabs it. Millie has settled in well at secondary school, she's made new friends and is loving, dance, band academy and choir, I think this school which specialises in performing arts will be good for her. Although I'm not too sure of her dream to win the X-Factor before she leaves school ! Henry, my lovely boy, he gets more delicious every day, he'll be fine . They will all have bright futures, I'll make sure of that. I've lone parented them from the beginning and so far I'm proud of what they/we have achieved, it's the best job ever being mummy.
          
        

     Another worry is our financial future, I'm sure that's the same with many of you whether you are married, divorced or single. I'm meeting with a solicitor on Friday for the first time as S and I work out our financial settlement and divorce. So far S has been good and I'm hoping it continues. Just worried on a few issues, so they'll need to be discussed. They may alter our/my future. I need to know if he is financing the children going to University. I already know I won't be able too, I don't think he should deny them this opportunity . He enjoyed his time at uni, I want that for my children. My other thought is how much of the Maintainence is for the children ? How much to maintain me as his Ex wife ? Is my financial future dependant on me staying alone as in never living with anyone let alone remarrying ? He can have the relationship he wants but can I ? I know money's not everything but it bloody helps. I also know real love conquers all and there will be a way forward , a future.

      The future, I try not too look to far ahead incase I don't like what I see but I think it's going to be ok. Health is the main thing I want for my family closely followed by happiness, if we have both of those everything else is a bonus. If it's anything like the present I'll have a good life and so will my children. We are very loved by wonderful people and that's a privilege , they help shape our Future xxxx