Ripples

   

I don't really know where this blog post is going if anywhere but I guess I'm just off loading here safely. Ok here goes, I'm unsettled this Evening, it's been slowly descending over me all day and now it's here. My heart is racing and I keep taking deep breaths. I just can't stay still, I'm pacing like one of those poor polar bears they used to have in Bristol Zoo during my childhood. Apologies to anyone taking part in a FitBit workweek hustle with me ! I'm resisting the urge to comfort eat as that will only deflate my mood later as I sugar crash ! Not even the thought of locking myself in the bathroom with candlelight, a bath bomb and soft music is appealing to me. In fact the music playing right now is anything but soft, it's angry. I'm back to playing Lily Allen's "Fuck You" at full blast with promise of other expletive laden songs on her album to follow.  Sometimes it's good to scream. 

       

               Last night I found out that another lady had passed away post transplant, she may have "only" been a Facebook friend but I admired this lady and her zest for life. She always made me laugh and that's a great quality. She had so much more living to do and I'm angry she didn't get that time. J was waiting for a kidney transplant , her medication to prevent her rejecting her heart had caused kidney failure, she was on dialysis. Sadly a organ never came in time. Having a heart transplant isn't easy you take a gamble because the odds were never in your favour. Without it you or your loved one would die. I'm just so sad that in such a short space of time we have lost three young ladies from our heart transplant family all with so much more living to do. 

When we lose someone in our transplant community we all feel the ripples of that loss. It makes us think when perhaps we'd rather forget. I keep seeing an egg timer you know one of those ones with the sand and the sand is slowly trickling through the top chamber. A cliche really but it's how my brain is thinking in pictures of time running away from Eloise. I don't want what I have taken from me. Bloody statistics, bloody life expectancies , bloody side effects, all hideous and scary. Hey it's all going to be alright isn't it, Eloise will be fine, she's different , positivity tries to drag me back from the darker side. I have to remain optimistic and have hope or it's all rather pointless isn't it ? 

      We just have to dust ourselves off and accept that sometimes transplant life is tough. We have no control over some of the external forces but they always seem to be the ones that dominate our lives. We get fixated on them. We can't focus on anything else. I find this is what happens to me when I hear that I've  lost a transplant friend. It brings every fear for Eloise's future crashing into the front of my head. All I can do is keep her healthy and happy, everything else is out of my control. I can't let this anger and sadness take over me as it clouds how I feel. It makes me want to sleep as if that's going to take the pain away. All that happens is I miss opportunities to be happy. So even though I'm struggling this evening and I'm yawning so much my eyes are watering I'm going to spend time with my children before bedtime. You can't go wrong with a cuddle from a ginger they're very healing ! 

    So huge hugs for everyone, I think we need them. At times like this I wish you were all here with me so we could hug and celebrate life. ❤️

                                 

        

Instruction Manual

Instruction Manual of Life - 

  

If life or my life had come with an instruction manual would I have read it ? Probably not ! I've never read any kind of self help book or "how to " book, maybe that's where I've been going wrong ? Would I have followed any of the instructions ? Maybe if they'd been laid out step by step like a Lego manual with bright coloured pictures of how to place a handful of bricks at a time. Actually I probably still wouldn't have bothered to read it. I rarely read for pleasure let alone because I had too ! 

I think my book of instructions would have been quite big and it would have had to have had multiple additions and updates. Or would my manual have known about the decisions I was going to make ?  Was my life programmed ? My life has managed to be quite complicated and difficult at times. If there is such a thing as normal life I'm guessing this isn't it ? 

         So there is no manual and I'm just making the rules up as I go along. Sometimes I get things wrong and that's just part of the learning . The experiences I've gone through are shaping my life, that explains why I'm not always in great shape physically or mentally then ! I often wonder "what if ?"  Or think "if only."  I'm only human . Did any of you have those puzzle type books where you read your own adventure by choosing to turn to page 56 or page 78 ? So each time you read the book the story would be different. In the book each turn of the page moves the story along. Real life is like these books each decision you make has consequences but in life there's no going back you can't rewrite life. 

       Everything we have gone though makes us who we are today. The fact we are still here shows we have the courage to get up and keep fighting . We all have "wounds and scars" but they show life was worth fighting for. It is. I expect if my instruction manual did exist the section on surviving would be pretty huge . Sometimes I feel all I did was survive, I hung on in there either clawing myself out of the "hole" or the right person throw me a rope. I feel it's good to share the fact that at times life can feel quite broken but slowly and carefully the pieces will go back together, it will always be flawed but still beautiful. You just need to be gentle with yourself and take all the time you need to self preserve. 

      I guess if I was living the dream life that I thought of during my younger years it would have been, husband, two beautiful children, lovely home, great career. So maybe to a point the book of life led me there ? I had all of those things , then someone scribbled on a page and tore it up ! Hell arrived in the form of Eloise's myocarditis and subsequent heart transplant. From then on the instruction manual became null and void, life's never been the same again. My new reality is pretty good though, no husband, four beautiful children, our own home, a perfect contract at work ( even if most of my ladies have left me) a supportive circle of friends and a good social life. The pages are just a little battered from the stress of having a potentially life limited child and all the post heart transplant difficulties. Then the husband had to go so that tore a few pages up as well. Oh well , I've managed to sellotape a few of the pages back together ! 

    So book or no book the only answer in life is to keep moving forward however uncertain the future is. You just have to do your best with what you've been given, though I really hate that bollocks that you're only given what you can cope with in life ! 

   I have learnt in life , as I'm sure you all have, that life is unfair. It always will be unfair so we have to fight for what we want and be as strong as we can for ourselves and for those we love. You have to believe in your decisions and actions. I often wish life was easy but would it then be dull ? A bit of dull occasionally would be good ! But it's the tough times , the times when we've fought and succeeded that earn us pride in ourselves and the feeling of satisfaction. It certainly makes my life story more interesting.....maybe even worth a read ? 

My life is my reality. Does anyone want to write a manual for me ? 

                                

Eloise's Heart Transplant Annual Review 2016 ❤️

Annual Review January 2016

Tuesday 9.30am

Envy, it's not a good feeling is it ? Not something to be proud of being envious for what others have. Is it less awful if you envy others good health ? Is it ok to be envious of people's healthy children ? No I guess it isn't . But today, tomorrow and other days I am envious , I'm being honest. I'm jealous that for most people the long term health of their children isn't on the worry list. It's on the top of mine. 

  I'm sat on a train looking at Eloise, she looks healthy and she's most definitely happy, yet I cannot see inside her body to know the true picture. We are on our way to Gosh, my stomach is a knot of anxiety. I'm worried what the next couple of days will bring out into the open. We are reliant on these tests to know how "well" Eloise truly is and how her transplanted heart is looking. I'm scared, I've already braced myself, the last two clinic letters have spoken of some deterioration some stiffening in one of the ventricles, I forget which one. I of course hold onto hope overall heart function is good. Is this the beginning of a decline in Eloise's health or just one of those things ? I need answers and I hope for reassurance that she's ok. Please let her be ok. I know thirteen years of post heart transplant life is good but hey I'm greedy I want and need more, my daughter needs to grow up and be who and what she wants to be. 

      I'm also feeling guilty as I'm sure others envy those years I've had with my precious girl. We've lived and made memories , I've watched her grow from toddler to young woman. Other people aren't so lucky in our transplant world. The call for a heart doesn't always come, there are complications at every stage, it's a huge battle and not everyone wins the fight. So I'm trying to balance my feelings not easy as I'm also feeling angry. I'm not an angry person, it's a waste of energy but right now I'm so angry. Angry my child was robbed of her heart by a stupid bloody childhood virus. Angry that I have to take her for tests that hurt her, they are invasive and some of them cause her pain. Tomorrow I will watch her sob as they cannulate her for her anaesthetic for her coronary angiogram. I will be there when she wakes up sore, confused and tearful. I'll be wishing I could take her place, take away her pain. I can't and as a mother, parent that hurts too. 

    So as this journey into London continues I'll try to relax as much as I can. I know my worrying doesn't change anything and what will be will be. Information is good right, we'll have a plan.

                 

     

Tuesday 13.15

       We arrived at 11am onto Bear Ward, Eloise was seen at 11.30. We saw the Transplant Team HSA , she was swabbed, weighed etc. Then had a chat about transition and day to day life with one of the nurses. I then signed the dreaded consent form, those complications they have to go through with you , with the reassurance of the complications all being rare. Isn't myocarditis a rare complication of hand, foot and mouth disease ? Yes, so you get my thinking ! Tomorrow Eloise will have her angio and ultrasound of her coronary arteries via her groin then she'll have biopsies taken of the right hand side of her heart to check for rejection. To do this they'll access her via her neck poor sod. She was then clerked and checked to be fit for surgery, she is !  No scary surprises, everyone seems pleased with her......so far. 

                

      

Tuesday 15.05

    Sat in Walrus waiting area, Eloise looking splendid in a pair of Primark black leggings and a Mary Poppins t-shirt. Exercise tolerance test has been completed, such a nasty test, wires everywhere and a creaking exercise bike. The cardio techs say she did really well but that may just be their encouraging words, but hey it's over and her heart rate and B/P returned to normal as they should. ECG has also been taken, nice spikes so hopefully a good sign that Eloise isn't in rejection. We both stared at the ECG print out as we are become "experts" at reading the signs ! Waiting now for Eloise's echo , i bet it takes ages and I'll worry. I'm banished from this test as Eloise is growing up, independence is good. My stomach will re-knot itself tightly. Then the final treat of the day the fitting of the 24hr B/P machine. Very awkward and not conducive to a good nights sleep. Ahhh she's been called in for her echo now. 

             

Tuesday 21.02

Back in the transplant flat in the Italian Wing , lying in our plastic coated bed hell. Thankful and laughing because Eloise's annual reviews are no longer in the height of Summer. Maybe we won't slither out of bed in the Morning ? I'll set an alarm in a minute for 6.15am, I don't know why as some huge amount of glass will be recycled at around 5am! 

        Eloise had her last Supper pre being nil by mouth in TGI's Covent Garden. Our waitress was very taken with her so gave her a badge, very small gestures like that make my precious girl so happy.  We caught up with her dad for dinner, hey he paid it was a good deal ! Eloise made us laugh so much , she's such a character. 

     A friend today said Eloise was braver than they were. I guess she's braver than a lot of people. She's my hero. I'm inspired by her. Her take on life is amazing , her attitude is exemplary . I feel we could all learn a lot from this child of mine. She gets on, never complains, well only about learning French ! In my opinion she's very well balanced . Maybe because she's different and not afraid to be herself she never feels judged. She doesn't dwell on things, doesn't worry, doesn't let life get her down. She's in a World she's created and she's happy. God I love her so much, such a quirky girl with a wicked sense of humour. We declined seeing the transplant psychologist today as what is there to fix ? Eloise said "no thanks she'll only think I'm mad." Maybe ????

      I'm not sure how well I'll sleep tonight in this strange room in a single bed with Eloise's heavy breathing......I may need to listen to some hypnosis tracks. Good Night. X

      

Wednesday 7.01

It was just as hot and uncomfortable in this room last night, Eloise has also made it stink of garlic, sorry anaesthetic team ! We both woke a few times thinking it was morning, then her B/P machine became disconnected and called out in pain ! Hopefully they'll have enough data. We have removed the machine now as Eloise needs to shower pre-op. So 24hr B/P monitoring equates to 15 hours ! When madam returns from the bathroom I'll put her numbing cream on ready for the dreaded cannula. We think she's second going down but from previous Gosh experience the cream is often applied late and then it doesn't work adequately. 

       Eloise had her last drink at 6.30 and took the medications she was allowed to take, she'll have bloods taken in theatre today. What's the betting her Tacro level will be up the creek ? The absorption will be different as she usually has it after breakfast not while nil by mouth. 

       I'm not feeling too bad, the day is here now, it can't be stopped it has to be faced. When we get to the ward at 7.30 there will be a flurry of activity so no time to dwell . So here goes......

           

Wednesday 10.24

   Sat in Eloise's cubicle she's next to go down. She's now grumpy as hunger is controlling her. She's watching mindless weird cartoons to take her mind of things. Eloise is totally rocking the gown and teal anti-embolic stockings ! Quite a palaver getting the damned things on, it made us laugh. Along with the routine pregnancy test ! She's not with child, we will not be welcoming a baby via immaculate conception at this time, phew, the relief ! Oh well these moments have made us laugh for brief moments at least. Oh and joy we have wifi too. 

             

Wednesday 10.50

I've left my precious girl with her Drs, it doesn't get any easier watching her getting upset when they miss her veins when cannulating her. Three goes today, she nearly crushed my hand , she was teary but stayed so still. Her anaesthetist apologised , it wasn't his skill it's just her knackered veins. Hate seeing her eyes roll in her head as the anaesthetic takes hold. Walking away from her and that image of her is so bloody hard. I really hate it. I have at least an hour and a half to wait now. Very hard to keep busy and my mind from over thinking. I'm going out for a coffee even though I feel so sick I know I must eat something. 

Wednesday 13.30

Eloise is back on the ward, she's grumpy and disorientated. She says her body feels numb, she's also feeling really sick, oh scrap that hello Ribena ! I think half the ward staff have now come to feel her pulses . They are there, they are strong if you have the knack ! Phew !!!!

     I've seen her lovely Consultant and he's pleased with her heart. Her coronary arteries are in great shape, no coronary artery disease . Very minimal increase in the ventricular pressure hence why it shows as minor stiffening on echo. But absolutely nothing to worry about. He's really, really pleased with her. 

     Now breathe.....I will talk to her Dr again later at greater length but for now I am grateful that Zara's gift continues to function well inside my precious girl. I've been in email contact today with Rebecca and it's been wonderful to give her this update. Without Rebecca saying yes to organ donation 13.5 years ago I wouldn't be sat in this room now. 

    I appreciate yesterday I was stressed and angry . I feel that was justified. Today I am relieved and thankful for so many things. Thankful, for Rebecca and her family . Thankful that Eloise has two skilled and amazing hospital teams taking great care of her, aiming to give her a long and healthy life. I'm thankful for every medical advancement that has been made and will be made in the science of transplantation. I'm thankful that I am privileged to be bringing up such an amazing child, her attitude to all of this makes my life so much easier, I learn from her.  I'm thankful for the peer support from my transplant family. I had to go into Social Media lock down this time and not share with everyone I was up here with Eloise. I feel that has given me the time and space I needed to deal with all of the uncertainty. I've had the support of a couple of wonderful people including Rebecca over the last couple of days. They've kept me going and I appreciate them so much. 

      So please raise a glass of something this evening and toast the continued health of my wonderful child. Hug those close to you and appreciate life. Love to you all. ❤️