Single

       

                

I'm single is that a bad thing ? Not to me it isn't it's a way of life I'm enjoying . I feel I've found my true self again after suffocating her for too long, in order to have an "easy" life as part of a couple, marriage. I no longer have to make any compromises. Obviously I have my four children's needs to meet but that's not what I'm discussing here, this is about my free adult time.

   

Is it a problem that I'm single ? Do you find it strange that I'm content ? Is it weird that after three years of being on my own I'm not actively seeking another man ? 

I'm on my own because I want to be, not because I'm deeply distraught because my husband had an affair, not because I'm nursing a broken heart or that I have trust issues. Just because...... 

Don't get me wrong I like male company, enjoy chatting to men , banter,  flirtation even but the thought of "taking on " another man full time just doesn't fill me with joy. I'm not a man hater. I wouldn't run a mile if someone came along and there was a spark, I'd just take things at a slow pace, to ensure it's what I want in life.

Who is out there, which fish are left in the depths of the sea ? 

   1. Too young , lovely thought the younger man but could I deny them a family of their own ? Deny their parents grandchildren etc. Do I want another young person to look after ? Are they house trained ?

   2. The divorced / separated man , is he bitter, angry about his Ex, does he have kids, how often does he see them, what are they like, how would they fit in with my children? I'm not sure I like other people's children enough to let them infiltrate my life or vice versa really. Who wants 4 kids in their life ?

   3. The older man, grown up kids ? Or a bachelor ? Not sure which of these options is worse probably number 2 if he still lives with his mum ! 

    I know I'm just getting carried away with this but I just want you to see that I'm happy. We don't all need to belong to another, to be part of a loving couple. Last night someone said in a lifetime you fall deeply in love 3 times. So on that note I better get cracking to fit all 3 in before I die ! 

If you find yourself single just look at it this way if you are uncomfortable spending time alone with you what makes you think anyone else will feel comfortable in your company? When you're a couple you continuously fill up your life with their life only to discover you really don't know yourself anymore. You have to like yourself ! Sometimes the only way to find you is to be alone, not hop from one relationship to another. 

Being single at my stage of life is different of course I do appreciate that, I dated back to back and over lapped in my late teens and early 20's then I met S, we got engaged,then married and had 4 children before it was over. I have a complete family, my reproducing days are truly over, no hurried dash to meet a mate before the biological clock ticked backwards until your eggs are past their sell by date. I'm sure being single in your mid 30's when you still want Mr Right and a family is truly hard. Do you then settle for less ? Again I digress again I think I settled for less but in a compromise kind of way, actually I did because I don't feel I've truly been in love or been loved. I still feel that will happen for me in the future.

For now just be happy for me, oh and please don't send me direct messages on Twitter just because you see my profile picture and the word single. Single doesn't mean desperate, single doesn't mean I'll lower my standards it also doesn't mean I want to see an unflattering picture of your bits ! This seems to be a common trend these days also encountered by my friends who use Internet dating ! Never happened in my day ! 

          

Roller Coaster

On the 12th June 2013 Eloise's first bout of rejection was found on echo and ECG at clinic in Great Ormond Street. From there the roller coaster that is transplantation has had a few more loop the loops for her to endure. A second bout of rejection, a pericardial effusion that's required drainage in September and November all downs on the coaster. Followed by a massive up in January when Eloise had fantastic results in all her tests including her 24 hour B/P monitoring, exercise tolerance test and ultimately her angio. Since January we've been coasting along nicely with good reviews in March and April then whoosh off we go again .....this time pneumonia. 

       

           From an illness point of view Eloise has always been very hardy,  a couple of ear infections caused by spending two weeks under the water swimming on holiday and a couple of colds. Nothing major at all, better than a lot of non immune suppressed people. That's why it probably came as such a shock that she caught pneumonia. It was caught very early and responded well to intravenous antibiotics and Eloise is continuing on oral antibiotics too . This is just thought to be an atypical pneumonia, therefore nothing major and more risky for the immunosuppressed. 

               On Wednesday Eloise saw Dr M in clinic, I was expecting a chest review rather than her heart. As she'd only been seen in Cardiac Clinic the week before. Anyway she had her Echo and a ECG performed. Both were reviewed by Dr M and both tests showed no signs of rejection. 

However you know that gut wrenching feeling you get sometimes that perhaps we're missing something, you know when you lose your positivity ? I got that. I kept thinking was the pneumonia a red herring, or rather was it masking rejection, similar signs, shortness of breath, temperature etc. The cardiac technicians who did Eloise's echo looked concerned and were whispering when they usually chat to me, about what had they seen, measurements deteriorating etc. Eloise's ECG said low voltages , low voltages can indicate rejection. I could calm myself and talk things through like I would if I was giving someone else advise but then the feelings would resurface again. In the end I contacted GOSH transplant team and sent them a scanned copy of Eloise's ECG. In the meanwhile Eloise's discharge summary came from her admission. This also gave me reassurance. It was still good to hear from nurse K that Eloise's ECG had been reviewed today and it looked really good, better then Aprils as she's no longer tachycardic. Phew now breathe.

      It's hard living like this, I've described the cloud before, well it was hanging around big time Wednesday and Thursday thankfully moved on to sunny spells now. You never lose these anxieties, well I don't think you do. Waiting for the reassurance of the next clinic appointment but dreading it at the same time. This isn't really normal life is it ? But it's what we signed up for when we got Eloise transplanted. We swapped death for life, we swapped one set of problems for another. We gave her an uncertain future but I guess the only real certainty in Life is Death, none of us escape that. 

       

So that was Eloise's medical year, 12th June - 11th June. Quite a crazy one and a difficult one emotionally . But one year out of 12 incredible extra ones that's still pretty amazing. Each one a gift, each one a bonus. 

Like I said that above is just the medical side of things the rest of the time was spent living being a teenager, camping, going to concerts, drama classes, school, roller skating, going to Ibiza, swimming in the transplant games, chilling with friends, shopping with mates, computer games, Lego , watching films at the cinema, Dr Who, tortoises, Sims 3 and loads of other absolutely important things when you are growing up and living ! 

                                           

    So you can't write that year off, just come out of it stronger and more grateful for what and who you have in your life.

                           

People who should be there for you just aren't which is sad but ultimately their loss. Then during the last year others have walked into our lives or Twitter accounts and have held us up virtually and in reality. I'm so grateful to you all, amazing friends. #TransplantFamily ❤️

Eloise's 12th Heart Day

Today it's Eloise's 12th Heart Day ,

                                        

 12 years with her donor heart, 12 years since her own diseased heart was removed from her body. Her own heart only lasted 21 months until it became severely damaged because of myocarditis. 

You know I hate viruses don't you ? Coxsackie B virus, the part of it commonly known as Hand ,Foot and Mouth. I'll never, ever underestimate a virus again. 

Anyway I digress . I've been thinking about how small Eloise was 12kg so therefore how tiny her heart would have been and the donor heart. The surgeons skill will always amaze me, such precision. Thinking also of the timing of her transplant the middle of the night and early hours how do these people keep awake and on high alert to perform such delicate surgery ? Truly amazing people. I know we laugh working in the NHS about some surgeons thinking that they are God but actually..........

I can't really write about what happened on this day 12 years ago , as I said yesterday some memories are vivid , tattooed into my head a permanent reminder of pain endured. At some point during this day we must have phoned our family and told them Eloise had, had a heart transplant, no recollection of that conversation, bet it was tearful. Then other memories are really hazy and one day just blended into the next. I'm not sure when she came off the ventilator, I know it wasn't long post transplant.  I don't know when the chest drains, pacing wires and various iv infusions were taken down or removed either. I remember her having pacing issues so she was external paced for a while. I remember them obliterating her own immune system with various infusions, so she didn't go into rejection. Honestly though the rest is just a blur. I don't even know how long she remained in her cubicle on PICU. I do remember her first drink of Squash from her beaker and my first cuddle in nearly three weeks, oh and the smell of paediasure puke never leaves you ! All of these things happened in PICU. 

        

I was thinking earlier would it be good to find out more, read her notes, put events into sequence but actually does it matter ? Has the brain carefully erased what it could from my memory to protect me in some way ? I don't know , I do know if you read your child's notes in a lift on the way back from echo you may get a shock ! That's how I found out Eloise had another cardiac arrest in theatre while she was being put onto bypass ! So perhaps the past should remain where it is, for the most part buried but during anniversaries like this moving a little closer to the surface. A little dig around, a little exploration of what you've been through and survived then carefully laid to rest again or locked in that all important box.

          I've been asked if we celebrate today and we do but not on a major scale. I guess lots of transplant families do something personal to them to mark the day. It's a hard day celebrating my child's life at the same time another mother is reliving the loss of hers. It's such a weird situation to be in , it's not like Eloise had heart surgery, another child died and became an organ donor. Without a child dying Eloise couldn't have lived. I know I've written about this before, survivors guilt. 

            Two little girls were lying in intensive care one dying and the other brain stem dead. Without one becoming an organ donor both little girls would have died . No child dies because another needs an organ donor they were  dying anyway. So the best outcome you can have in this situation is one child surviving because they received a donated organ and the worst two dying. Eloise's survival gave Rebecca some comfort she found out late afternoon on the 10th June that Zara's liver and heart had been transplanted successfully , 12 years on both girls are still alive because of her daughter.

                                    

So today Eloise has received cards, her limited addition Crystal Heart in aid of CHUF, a bracelet from lovely Rachel and Kate and another painted love heart to mark another year of life.

                                        

Then the all important cake, 12 candles and 12 chocolate hearts, lets just say Eloise ate a third of it ! 

Emotionally I actually don't find this day hard, I actually remember less of it than my nemesis day 23/05/2002 . I suppose on the 23rd there was little hope of Eloise surviving the night, no lifeline , no future. Whereas on the 10th even if she'd died during transplant surgery she'd been given a chance and every opportunity to save her had been exhausted . She deserved that chance to live and her donor family gave that to her. I just hope they feel we were the right family to look after Zara's heart for them 

           Xxxx 

A Second Chance

9th June 2002, Eloise's fifth day in the Freeman hospital , she's ventilated on full inotrope support but not paralysed so can suck on mouth sponges. I decide that even though she'd given up her dummy some months previously she may get comfort from having one again Also it would help her sucking and swallow reflex. We also needed more clothes ourselves as it was a lot colder up North than we'd packed for.

When we left the unit it seemed to have a buzz about it , and Eloise's observation charts etc kept being taken down from where they were stuck on a wall.  I remember that much but I didn't think too much of it when we ventured into the City centre. As far as I knew Eloise wasn't listed for a transplant at this point as she had an infection in her femoral line that needed treating. We had a pager with us anyway.

        We did our shopping then waited for a bus back to the hospital. I remember seeing a poster for the Fire Brigade on the side of the bus .  It was a poster about arson It had a lit wheelie bin on it and a slogan along the lines of " Do you know what your child is doing tonight ?" I've tried to google it to no avail ! 

  

     When we got back to the hospital we were greeted by a rather frantic transplant team, they'd been trying to page us. They had an offer of a heart for Eloise ! Complete and utter shock , I guess I still hoped Eloise's heart would recover fully in time, you read of these miracles happening. Couldn't it happen to Eloise, couldn't we just hold off ? Just wait and see, time that's all she needed, just time. But she didn't have time, she was starting to go into multi organ failure. In 24 hours she'd need Ecmo so this was her only chance. There was a catch though the donor heart came from a little one with blood group B and Eloise is an A. Could we wait for a match ? No, would the surgeon transplant this heart into his own child ? Yes. He explained that they had run and re-run Eloise's antibody bloods as no one could believe that a 21 month old toddler hadn't developed antibodies to blood group B . Only 28 mismatches had been performed Worldwide at this point in time, 2 by the Freeman , all the children had been babies. We'd by some strange twist yet again been thrown a life line for Eloise by the Freeman. Both S and I signed the consent , we were consenting to something so important I felt it was best we both signed, incase something went wrong. You then couldn't blame the person who gave consent.

 

    I'll be honest now I have no real idea of the time scale and what happened when. I remember being told when the donor heart arrived in the Freeman by the donor coordinator. I hated the fact it was almost described as a spare part, a piece of meat, so that's never been forgotten , the "it's looking good in the box" phrase. 

   I remember the anaesthetic team coming onto the unit to sedate Eloise ready to be transferred to theatre. Actually I don't just remember I often relive it. Horrendous flashbacks of watching Eloise's vital signs deteriorate on the monitor then all the alarms going off. Staff jumping into action , chest compressions, iv medication . It was like watching it happen to someone else's child or like watching death of the episode on Casualty the TV programme. Like I was floating above it . The donor coordinator used those words " are you alright ?" I'm unsure what response she was expecting but probably not " of course we're not f&@king alright ! " from S. I don't think she ever saw us after that ! The Team stabilised Eloise, I remember thinking not now Eloise, please don't die now, another child has already died today, you need to live, your chance is here waiting. Don't go now, now we have hope again. Eloise was wheeled to the operating theatre we kissed her and said our goodbyes, again not knowing if this was goodbye forever. I think this was between 10-11pm .

     We left the hospital and went to our shared parents accommodation . We made the decision not to tell family and friends, we needed to come to terms with it all ourselves. I was exhausted and bizarrely I managed to sleep , S stayed awake, at around 4am I think the phone rang in the room. Eloise had survived the transplant and was now being settled back onto the unit. S decided to go straight over and see her. I couldn't, I wasn't ready emotionally , I slept again ! Preferring the oblivion that afforded me. It was 7 or 8am before I ventured onto the unit to see a warm and pink Eloise in her isolation cubicle. She was covered in wires, drips, drains and monitors but she was alive. Her chance of life had been given by her donor and donor family, the rest was up to her, us and the medical team.

    12 years on ........ We're doing ok, 12 years on I have Eloise's donor's mum emailing me regularly, supporting me. Just because we followed the same Twitter account in November.  A chance happening or meant to be ? Now I'm not too sure, we often think things then an email will pop up from the other one. Tonight for example I was out in the garden with Eloise at 8pm taking this picture of her with Zara's balloon. When I check my iPad a email from Rebecca is there that arrived at 8pm. Coincidence probably but there's a connection there too, well we think so, so that's all that matters ;-) x

       

Guardian Angel ?

For 12 years we've been remembering a little girl called Zara on the 9th of June . This very special little girl died in Great Ormond Street in London of Meningitis. We never met this toddler in her lifetime but everyday for nearly 12 years now she's been a special part of our life. 

Her heart beats on strongly inside of Eloise. Zara's heart saved Eloise from dying of viral cardiomyopathy. Zara's heart has enabled Eloise to grow up and to live a full and happy life. Zara lives on through Eloise and with Eloise. Zara also saved another little girl with liver failure. 

     This year it's different as this year I'm in contact with Rebecca , Zara's mum. Today we've been emailing as Rebecca and Zara's siblings have been in Battersea Park doing the GOSH 5km Race For Kids in Zara's memory. Rebecca has just said to me do you know that Zara died on the 8th of June around now (10pm) but her brain stem tests were done in the morning of the 9th. Her death certificate says the 9th. Of course I didn't I guess like the majority of us I know little about being a donor family, the process or the timing . I just wrongly presumed time of death would be after organ donation. Zara's heart was with the Freeman team late Evening so Eloise was then taken to theatre and transplanted during the early hours of the 10th June. Rebecca feels privileged to have that extra night with her baby, I feel privileged to have held my baby for another 12 years.  

     Tomorrow we will do the same as we always do on the 9th, light some candles and send a helium balloon up to Eloise's guardian angel with a message attached. We just think about Zara and reflect on how far Eloise has come because of her and her mothers incredible strength. 

      I may have given birth to Eloise but two mothers have given her the gift of life, me and Rebecca, so I will always have an immense bond with this incredible lady. 

   Thinking of you Zara , fly high sweetheart Xxxx

                              

5th June 2002

Today Eloise is an inpatient at Bristol Childrens Hospital just as she was 12 years ago. That feels extremely strange another out of the blue admission but of course hoping it's nothing up against what she went through last time !

   5th June 2002, the day Eloise was being transferred to Great Ormond Street for Transplant assessment. Her condition was showing no signs of improving, her heart function remained extremely poor, other organs weren't doing so well either ! Going to GOSH was her only chance. Sadly mid morning there was a problem there was no longer a bed in PICU in GOSH for Eloise to go into, they were full. I remember the crushing devastation, could my baby hold on for possibly days before a bed became available, would she stay stable enough ? Then a lifeline was thrown at us the Freeman in Newcastle could take her. I'm a paediatric nurse and I'd worked a couple of years previously on a ward that cared for cardiac surgical children and I'd not heard of this transplant centre. I cried and my tears were mistaken for disappointment that Gosh didn't have a bed. Did they not realise I'd have flown around the World to get my baby better ? 

      The unit became a flurry of activity so much to arrange for her transfer, ambulance to Filton, air ambulance/ plane, a trained crew, Consultant and nurse to escort her, equipment galore. Ambulance to the Freeman once the plane arrived up there. Eloise needed to go on the transport ventilator and all her meds etc put on different pumps. I guess we weren't around while they did all this. I don't remember seeing it. Perhaps we'd gone home to pack our own bags, we had to make our own flight arrangements. I do remember saying goodbye to her, telling her I loved her but I understood if this was all too much for her and she couldn't fight anymore. Again I gave her "permission" to leave me, sounds awful doesn't it ? So I said goodbye knowing there was a possibility this would be the last time I'd she her "alive"

      At home I packed, I packed for Summer it was June, Newcastle had different ideas so I froze ! For Eloise I could only pack one sleep suit, she had loads of clothes but I just couldn't pack them . Just one M&S baby grow with a pretty Fairytale castle design on it (which I still have )to put her in if she died, I didn't want her in just a nappy then. I guess when your child is in PICU you get used to them not being dressed. 

         Later in the afternoon we flew to Newcastle, it felt so strange being surrounded by happy people, did they not know what was happening to my daughter today ? That I may never hold her in my arms alive. The lovely taxi driver who took us from the airport to the Freeman wouldn't take his fare, he said to buy Eloise something. This was just the start of being surrounded by warm , loving and caring people. As we arrived S and J her nurse and Dr were leaving, I'm not sure what happened on that flight, I never got to find out but I believe Eloise wasn't the best behaved of patients for them ! As the flight was described as interesting ! 

           Eloise's new team settled her onto their ventilator and other equipment and later we were reunited with our girl. Strangely she looked better on this ventilator, no more nasty cooling mat but a cooling blanket . The equipment she was surrounded with looked old but the atmosphere on the unit was amazing. I felt relaxed, well as much as you can in this kind of situation. Eloise's transplant assessment begun and so did ours.........

Today at the Metro Shopping Centre this crystal light made up of 1000 crystals is being switched on. I've been speaking to the PR team and shared Eloise's story with them. It seems fitting to me that it's being switched on today the anniversary of the day Eloise flew to the hospital that saved her life. The money from the sale of the hearts is going to CHUF ( Children's Heart Unit Fund ). 

                                          

       

Unscheduled Stay !

Tonight I'm home with something I hate , an empty bedroom , Eloise's bedroom. I feel unsettled and uneasy when she's meant to be asleep in the bedroom next to mine. Millie's on school camp she's having fun, it was planned she's meant to be there. Eloise is in hospital, it wasn't planned and I want her home.

      Today Eloise was due to have her bloods taken on CIU ( Clinical Investigation Unit ) at 8.30am, we dropped Henry off at Breakfast Club and carried on walking to the hospital. Eloise who normally marches along was lagging behind, she felt breathless and looked pale , we rested awhile as we'd just walked up a hill. We continued on a little further but the breathless feeling came back. I rang work explained the situation and K kindly sent our G to come and collect Eloise in a wheelchair. He dropped us in A/E.

    Eloise was triaged, noticed to have a temperature of 38.4 , other observations all normal. Taken to a cubicle for a 12 lead ECG which showed changes but then again a heart transplant patients ECG does as they are in left bundle branch block from having servered nerve pathway etc. Seen by a registrar and examined , bloods taken , paracetamol given and in view of breathlessness Eloise is sent for an X-ray. Remember going there in 2002 when Eloise was diagnosed, shudder. The X-Ray showed patchy changes , so Eloise was diagnosed with community acquired pneumonia and given a weeks course of oral Amoxicillin. Cardiology were informed of her admission to A/E and decided they'd see her as planned in clinic at 2.15pm , so she could see her usual consultant .

        

   At 2.15 back to clinic, normal B/P and heart rate etc, grown again and put on weight. Eloise had her ECG it was noted that her ankles were puffy, kind of cankles I guess ! She does occasionally get a bit puffy. Then seen by her consultant Dr M and examined, he said Ivabradine can make you a bit puffy. The dreaded echo is then performed, heart function looked the same as normal, no changes with pericardial effusion, phew. My own heart regulates a little at this news, at least in Bristol the cardiology techs talk to you rather than an uneasy silence of doom !

           Dr M rechecks echo he's happy, but thinks Eloise needs  monitoring and would benefit from intravenous antibiotics, to get her to bounce back quicker. Site team contacted and a bed is found on the cardiac ward. Eloise settles in, the dreaded cannulation wasn't too bad, second try and the iv Augmentin has commenced. Eloise's CRP level is slightly raised as is her white blood count. Her creatine is also a little high. Eloise is slightly pyrexia and coughing a bit but generally feels ok and believe it or not happy ! I love that child :-) . Tomorrow the infection Control team and immunologists will be contacted to see if this is the best treatment regime for Eloise with her being immune suppressed. Eloise's Tacro level was taken 2 hours late but it was still 7.6 so I think this will need to be rechecked as in snother blood test before any adjustments are made to her dose. I told them only Gosh must change her immune suppression medications not them ! 

    

       

                      A very tired Eloise, she's not upset, she's yawned and got watery eyes ! 

All the staff have been incredibly lovely today and again I am reminded why I moved to Bristol, to work in a Childrens Hospital and why I won't leave as Eloise gets looked after so well. X

Another Year

It's nearly another Heart Day for Eloise, on the 10th of June 2014 it will be her 12th heart transplant anniversary. Last year we were carefree on the run up to this incredible day, we remembered Zara Eloise's donor on the 9th and celebrated Eloise's life on the 10th. These pictures just show how incredibly well she looked.

                                    

                                             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