Taken in Battersea Park on the 9th of June.
10th of June 2013, we celebrated, another wooden heart for the box, cards and cake, oblivious to what was going on inside Eloise.
On the 12th of June we went to Great Ormond Street for Eloise's annual review , so all the usual tests plus 24 hour B/P , chest x-Ray and exercise tolerance test but no angiogram was due . Started off ok observations , measuring and bloods. Then off for echo and ECG. Eloise's echo took an excruciatingly long time, silence hung in the air. Then the I'll just get someone to check this.....second technician comes, lots of whispering, nods. Dr called, more images taken, no one speaks to you but you just know things aren't good. ECG is repeated after the echo, still no one explains what's going on. Feel sick, anxious, cold and worried, sat back in the main waiting room waiting for answers. Nurse smiles at you, she knows....
Eventually called in to see consultant, voltages low on ECG and fluid can be seen around Eloise's heart, query rejection . Consultant not convinced as she looks and feels so well, no breathlessness, no puffiness , still doing all her sport at school etc. Says he'd like her in to do a biopsy in the next few weeks. Eloise cries she hates cannula's above anything else she endures. A space is found on Fridays theatre list to stop her worrying for too long. We go home in shock to return the next day.....
On the Friday she goes to theatre, crying as the anaesthetist wants her cannulated on the ward, the local anaesthetic cream isn't given the optimum time to work, my child cries silently, trying not to shake as she's repeatedly stabbed, horrendous. About to say enough when the nurse gets it in . In the anaesthetic room the anaesthetic still aggravates Eloise's vein she remains tearful as she goes to sleep.
I'm so happy to have her back safely on the ward an hour later, the wait then begins, and we wait, we wait anxiously for the biopsy results. After 5pm they are in Eloise is in stage 3 rejection , she needs admitting for 3 infusions of methylpred over 3 days. Her consultant is surprised he thought she was fine.
A three day stay on Bear ward follows, Eloise is allowed off the ward inbetween infusions. She goes home on Sunday on oral Prednisalone and 250mg of MMF. A couple of weeks later her biopsy reveals Grade 1 rejection, her Drs are happy, steroids stop and we happily go off on holiday , putting this blip behind us.
Fast forward to the 25th September, outpatient time again off we go for Echo......déjà vue ? Another pericardial effusion much larger this time, poor voltages on ECG. Eloise was having a tamponade ( heart unable to beat properly as movement constricted by fluid ) so admitted for cardiac monitoring. This time she was in grade 2 rejection and 90mls of fluid drained from around her heart. Her MMF is increased significantly 750mg twice a day ! My poor girl was in agony with stomach cramps and diarrhoea so horrendous to watch. Eloise with no appetite is something you never usually see.
From then on she had regular Echo's in Bristol and Gosh but the pericardial effusion remained unchanged so another biopsy is arranged for November, thankfully zero rejection but another 100mls is removed from around her heart ! Quite scary and a worry that these things have damaged her heart, Eloise's heart rate was now extremely fast removing the fluid doesn't lower it, her hearts beating 130 beats per minute rather then her usual 80 ! I was so worried with the online support of one of my transplant friends I decided to ask for this to be investigated further incase we were missing something. So Eloise's annual review is brought forward to January.
Annual review 28th January, tests are all good, despite high heart rate Eloise does well on her exercise tolerance test, pericardial effusion remains unchanged on Echo, normal ECG and chest X-ray. Eloise also had an MRI scan to look at her coronary arteries as part of a research study, results were reassuring. Day 2 the angiogram and biopsy....... Eloise went to sleep gently a smooth anaesthetic, lovely caring anaesthetist looking after her, makes a huge difference, also Eloise still had her cannula in from the MRI. An hour or so later I can see my girl in recovery, there I hear the best news, her coronary arteries are peachy ! No coronary artery disease, good pressures all looking wonderful, no fluid to be removed from around the hard as it's solidified . To say I was relieved is an under statement , party in my head ! The two episodes of acute rejection could have caused chronic rejection but this time Eloise's heart was fine.
So where are we now, Eloise is off the steroids, 6 weeks ago she started Ivabradine to lower her heart rate. It's working really well her heart rate is now 80 again , lovely and normal. Her Tacro level has been reduced to 1.5mg twice a day the level she was on for 7 years. She's being echoed every 6 weeks to ensure the pericardial effusion doesn't come back ! Just hoping that if remains the same like the jelly around a pork pie, trapped by adhesions. Eloise looks and feels well, when doesn't she ? So here's hoping that her tests on Wednesday are all good, I never take them for granted now. Maybe the blips happened for a reason, you up your game, stick to drug times rigidly but actually what happened wasn't something we really had control over. It happened because of puberty, Eloise has grown so much so quickly , she out grew her baby dose of Azathioprine so hopefully the MMF will now keep her free from rejection !
The other difference this coming anniversary is my email relationship with Rebecca, Rebecca is the mother of Zara, Eloise's heart donor. We'd been in letter contact since 2011 but by chance we ended up following the same account on Twitter @ForMyDonor my close friend M's account. Rebecca tweeted me, it was a huge shock ! I was texting with M at the time, I didn't know what to do. In the end we unfollowed and blocked each other on Twitter and shared our email details. We've been emailing each other regularly since November, it's worked out really well for us both. We chat a lot, transplant stuff and family life. She's just amazing, I am so grateful for all the support she has given me during the past few months, even emailing me on Nemesis Day ! I'm not sure if I will email her on the 9th June, I don't want to cause further anguish , is that ever possible if someone has already experienced the death of their child ? 12 years ago on the 9th Rebecca cradled her brain dead baby as she had a lumber puncture to diagnose her type of meningitis . Without this information Zara couldn't be an organ donor. What an incredible strong lady, she did that for Eloise, willing her baby's heart to keep beating. I don't know if I have the right words , words good enough...... I just know in 12 years her daughter's legacy continues, her heart beats on inside Eloise. Xxx
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