Me !

Me, who am I ? 

Well there's a question ! 

I am Rebecca Louise Verrier Allen .

Named Rebecca Louise by my parents in 1969, yes I am that old ! Verrier was my surname before I married.

I am Mrs Allen , married in 1996 and as yet not divorced . I will however keep this surname as it's the surname my children have. They also have Verrier as a middle name so we could go double barrelled.

I am Rebecca to the families and children I look after at work #mynameisRebecca 

I am Bec to my family and friends. Also I am Bec on Twitter my second home.

I am Bec Allen on Facebook.

I am Mummy, this is my most important title, the thing I wanted most in my life, my greatest achievement . I fulfilled my dream of four children , I love being mummy.

I am Leah's mum, Eloise's mum, Amelia's mum, Henry's mum, Josie and Vic's Daughter, Christian's Sister, the list goes on......

For over 16 years now my life has been extremely busy being mum, but in September things changed as Henry,  my youngest , started school. I now have time on my hands. "Me" time and I am unsure of what to do with it. In that I cannot really remember what I used to do with my time pre family, I cannot remember what I used to enjoy. Maybe this is a good thing as I can start over, find new interests but I am at a loss as to where to start. I suppose I arrived in Bristol in Oct 1996 and soon became pregnant with Leah so I "know" Bristol mainly as a mum, not as a Single woman .

   Previously my 3 child free days off a month were spent shopping but I think even to my shopaholic standards shopping 2-3 days a week is a little excessive ! I am thinking of joining a local gym off peak, I used to enjoy it until they closed the crèche making accessing the club with a baby impossible. This will also help me tone up and lose the blubber, so a positive on many levels, think of all those endorphins! The club also boasts a lovely pool, I find swimming extremely relaxing, a bit womb like and safe, the room is quite echoey I like that. Swimming could replace my need to chill out in the bath so often. 

     I am wondering about a photography course, I do love a camera and when it's not being repaired I carry my Nikon S9500 with me every non working day. Psychological thing of mine, cannot miss a moment. I also have a Nikon 1 and will be acquiring a zoom lense for that in a week or so. I think even if I don't do a course I should experiment more. I also need to sort out all my memory cards and make some more photo books, my pictures of my family need to be preserved. 

         After another visit from the AA man, second this month, I am wondering whether a car maintainence course would be a good thing for me. I confess I couldn't even open the bonnet but hey I did manage to reset the clock ! Car problem not my fault by the way, dead battery as in had to be replaced. Perhaps I should just try to overcome my fear of driving I hate it, it's my main anxiety after Eloise's health and public speaking. I have this lovely car which I drove 500 miles in last year, pointless me having it really. Even have an unused Sat Nav , which will be outdated now.

         I also have a lot of maintainence and decorating to do in this tomb of a house and a garden to sort out. A lot of the work will need to be done professionally as it's a Victorian house and everything you touch has a problem ! I think I will enjoy making it beautiful again. I will enjoy looking at paint charts, material and shopping for accessories ......see shopping again ! 

           Love going to see Musicals but this is a passion I have managed to keep going , so I hope this continues. Quite an expensive love ! Strangely I have never been to a gig, there's a thought.

    

       Ok so I can think of ways to pass my time but sometimes company is good. I do like my own space, my own company but somethings are better with friends. Day time is ok but evenings another matter. I am quite happy doing most daytime activities alone even the Cinema as you don't talk during a film anyway ! I used to be happy walking into a Bar alone and finding someone to talk to, easy enough when you are in your early 20's perhaps a little desperate in your mid 40's. I also miss male company, not in a romantic , being a couple way just that I enjoy talking to men. Probably after working 25 years in a female dominated role it's good to be in the company of men. I gave looked at and baulked at many online dating agencies, it's not what I want in life. Not sure I have time to dedicate to a new relationship right now, how do you date and put your children's needs first ? I do however want a larger social circle , people to call on when you fancy a night out, to a pub, club, gig, exhibition etc. So I have joined City Socializer which does just that....well here's hoping ! Be good to meet like minded people and have some fun. Will keep you posted. Not sure about going on some of the Socials I have been invited too, but will keep an open mind ! New beginnings. 

I am about to start the quest to rediscover me , Bec being herself not what is expected of her by the demands of others. Exciting x

              

D Day !

This morning after a restless night for me and a good nights sleep for Eloise , even with a 24 hr B/P machine on we arrived on Walrus Day Ward for Eloise's Coronary Angiogram, intra venous ultrasound and biopsy. To say I was anxious would be an understatement, two months of worry and speculation ! 

       

 Eloise is seen by the anaesthetist and checked out by her nurse. Surprisingly despite being the oldest she is the first to go to theatre at 8.30am. Getting her to sleep was a calm affair as she still had her cannula in situ from yesterday. While Eloise was in theatre I sat in Costa for an hour, stomach pains and nausea grip me, I hate her being away from me.

      An hour and a half later I can go to the recovery room to be reunited with my precious, brave girl. Eloise is always really grumpy post op and so my kiss on her brow was met with a frown and rejected ! We saw her consultant briefly he was happy with her coronary arteries, they looked good and the two rejection episodes haven't caused any thickening of the arteries. He said he would see us on the ward later. Eloise had a dressing on her neck from the biopsy and a clear dressing in her groin from the angio puncture sites.

    Eloise was then transferred back to the ward to recover. Friends visited but Eloise felt nauseated and tired so we left her to rest while we grabbed lunch. A two hour sleep made Eloise feel much better and she managed to eat, drink and take pain relief and her medication.

       Her consultant then saw her, the procedure went extremely well very straight forward, her coronary arteries are "peachy" really healthy. Heart function and pressures are all normal. The pericardial effusion is probably jelly like so unable to drain caught in adhesions. If her biopsy comes back clear we will slowly reduce her Prednisalone by 1mg to get her off it completely. Her Tacro range will also be reviewed after the biopsy result. The high heart rate could be explained , M thinks some nerves may have grown back to Eloise's transplanted heart as this can happen over time giving her a lowered heart rate but the two rejection episodes could have caused these tiny nerves to have "died" off again leaving an elevated heart rate. He may consider starting her on a medication to lower her heart rate at some point. We can go on holiday and "normal" life can resume once more. We will see Dr Martin in 6 weeks in Bristol and then come to GOSH in 3 months for outpatients. 

       We then saw the Transplant Psychologist for a casual chat, always good to have that link incase Eloise develops any issues, her only one being cannulation that just makes her upset. So to formulate a plan for that.

        After 4 hours of bed rest Eloise got up and walked around, her two cannula's were removed and discharge letter and advise given. She is now back in the transplant flats resting. We have made the decision to travel home tomorrow as she is sore and exhausted right now. It is also peak time to travel. 

     So so far the results are encouraging so we wait for her biopsy result, blood results and the result of her 24 hr B/P monitoring. But for now we are relieved it's not been an easy few months ! 

    

Pre D Day !

Well the day has arrived and we find ourselves on the way to GOSH. Time for Eloise's tests, time to see what is really going on with her heart. We have seen her heart rate lower over the last couple of weeks with 98 beats per minute being the lowest recording but on the whole her heart rate remains worryingly elevated. 

I am concerned that the first test scheduled this morning is her exercise tolerance test. This involves being wired up for an ECG, with a B/P cuff on and a rather horrid face mask then riding an exercise bike at a continuely high speed for as long as you can manage. I feel they should do an ECG and Echo first, say if she is in rejection ? Say if she has another pericardial effusion, she never displays symptoms, she was even tamponading and showed no symptoms ! So that's a worry.

     Not sure if she is going to have a cardiac MRI today , I signed Eloise up to be part of a trial. You go to another cardiac centre and have an MRI, specifically looking at coronary artery disease. These results are then analysed with the results taken tomorrow during Eloise's coronary angiogram to see if the results are the same. I think so far the research is promising and the MRI scans are giving the Drs enough information. It would be so nicer, safer,painfree and less invasive for the children to be scanned rather than having a general anaesthetic and uncomfortable procedure. So fingers crossed this trial is a success and way forward.

      I expect Eloise will also have an ECG , Echo and chest x-Ray, possibly a 24hr B/P recording but she did have two in the Summer. Bloods will be taken tomorrow when she is cannulated for theatre. So a busy and anxious day ahead.

       I will not be able to relax, stomach is churning. I have been awake since 4.30 am. Luckily for me Eloise is her usual chilled lovely self. Sat here on the train reading a book, that is how it should be. 

Evening -

     Eloise has had such a full on day. We arrived at GOSH at 11 am and reported to 

Bear Ward. Eloise then went down to Walrus for her Exercise Tolerance test, you have ECG monitoring, saturation monitoring, B/P monitoring and your breathing is also monitored so completely wired up. You then have to cycle at a continuous speed of 70 until the test is completed or you can tolerate no more. Eloise managed all but the last few seconds. Her heart rate went from 120 beats per minute to 180 ! 

    After the exercise tolerance test Eloise had her ECG ,and her 24 hr B/P machine was put on then back to Bear Ward for observations, height, weight and pre op swabs. Eloise was then examined by the Transplant SHO and clerked. We then managed a 30 minute lunch break before chest x-Ray and her Echo. Her Echo showed that her pericardial effusion had not resolved but wasn't any bigger about 1.5cm in size at the bottom of her heart. It wasn't causing her heart function any problems.

           Back to Bear Ward for Psychology forms and consent. I decided to enrol Eloise onto a research study to see if a cardiac MRI scan gave the same results as having a coronary angiogram . So this meant a cannula, which Eloise absolutely hates. She took it in her stride just a few tears but cannulated at the first attempt, this will help with any future cannulation so as it was a positive experience. We then took a taxi with the research registrar to St Thomas's Hospital. Eloise was in the scanner for well over an hour and did incredibly well providing the research team with some valuable images. 25 Gosh transplant patients and 25 Papworth patients are needed for the study, hopefully this will stop future transplant patients from needing an invasive angiogram. The Taxi returned us to Gosh at 6.45pm. Such a long and busy day.

            In the Evening we went to Gourmet Burger with Eloise's dad, for Eloise's last meal pre angio ! She ate her fill. 

A visit from Auntie PAT

Auntie PAT has come for a visit. I am sure quite a few of you know her and she comes to stay with you as well. 

PAT equates to Pre Appointment Tension . Well  it's here , I am experiencing it right now. 

  

So far my sleep isn't too disturbed , for which I am grateful. I think insomnia is the most torturous kind of anxiety . It drives you to tears when you just lie there with your tangled  thoughts . You feel so alone in the dark. When you sleep you can forget your worries and recharge your batteries for the battle ahead. I am sure insomnia will rear it's ugly head next week but for now I am grateful.

      Palpitations are pretty horrendous, they started last week, heart is really jumpy . I hate that in the throat  feeling. It is so hard to regulate and ignore. I try to calm myself but it's not easy.

   

My other symptom is feeling sick, that stomach churning dread in the pit of your stomach. It also grips and gives you cramps. I have to deep breathe to overcome the anxiety. But I am trying to control it.

I think because I have had such uncertainty with Eloise over the last few months I have had to find some coping strategies and put them into place. I am more aware of my own needs and mental health.  I have enjoyed writing updates in Eloise's FaceBook group and have found off loading to be beneficial. Hence why I started this blog, my therapy an insight into how things are in my World. I have also retreated to a Sanctuary otherwise known as the family bathroom. An hour long soaking session by candlelight with relaxing music, time to zone out ! It works, I know when I need to be alone, when I am getting twitchy ! 

    Social media has played a big part too. I have found some great friends on Facebook over the years but I have found a lovely new support network on Twitter which is working well for me. Great to connect with new people, even upgrade them from social media friends to reality friends. I have also found that even though I run a Heart Transplant support group it is not for me. I don't want to post updates about Eloise in the group although I do in her own Facebook group.

 

   There is no right or wrong way of dealing with anxiety , you just have to find what is right for you, it's all about self preservation , for some they need to be surrounded by others for me I think I need to retreate and switch off a little, so lock down and protect myself.

One more week to go then it's off to GOSH for Eloise's rescheduled early Annual Review, ECG, Echo, bloods, chest X-Ray, exercise tolerance test, MRI scan and a coronary angiogram. 

A picture tweeted to me this week sums things up well X

Lucky Ones?

What is luck ? Do we just make our own luck ? 

I sometimes describe Eloise as unluckily lucky, hhmmmm that does not make sense so let me explain. Eloise's myocarditis was caused by the usually mild childhood illness Hand, Foot and Mouth Disease. It left her with severe dilated Cardiomyopathy (DCM) and fighting for her life in intensive care (PICU) After 2 very unstable weeks Eloise was due to be transferred to GOSH on Wednesday 5th June for her transplant assessment but there was no PICU bed available. So instead she flew to Newcastle, luck being with her then also as she had an amazing medical team from Bristol Children's Hospital fly with her and keep her alive , she did have other ideas!

       I do believe fate took her to Newcastle as Eloise received a ABO Mismatched heart transplant, she is blood group A and her donor is a B. Again was is luck that Eloise did not have any antibodies to blood group B ? At the time she was the third ABO Mismatch that Newcastle had performed the 29th in the World and GOSH hadn't done one at this point. Newcastle took the risk, she was lucky and 11 years on it is fair to say they made the right decision . Also against the odds just 24 hours of being listed she got her heart transplant, it is hard for babies and toddlers to receive transplants, less potential donors , is that not lucky ? Three people a day die waiting for a transplant. 

         Eloise's heart transplant very nearly didn't happen. To be a donor baby Z had to have a diagnosis, her very brave mummy held her while she was on life support so a lumbar puncture could be performed. This diagnosed her form of meningitis . If she had a cardiac arrest during this procedure her organs wouldn't have been any good for Transplanation. Luckily this did not happen. Then when Eloise was being taken to theatre for the transplant she arrested I watched the team working on her seeing how fragile she was,  how her life was hanging in the balance. They got her back safely , she suffered a further cardiac arrest in theatre, we are so lucky she survived the surgery and had no long lasting brain damage.

    After 4 weeks post heart transplant Eloise was transferred to GOSH so her new team could get to know her and set up her care and appointments. On arriving we were greeted by a Dr whose first words were "Hi, you've come for transplant assessment " I frowned and felt confused surely we'd just done that bit? It seemed no one in GOSH was convinced the heart Eloise had been given was going to be any good for her ! Horrendous time of such uncertainty, I could not imagine going through everything again so soon. But after a week we did leave hospital.

The negativity towards Eloise's heart transplant from the GOSH team stayed for quite some time, years infact.No one wanted to see "The ABO Mismatch from Newcastle!" I used to hear them in clinic, lovely Dr Rees used to see her, he thought she was amazing and made me feel happier about the situation. So from a heart that was no good for her Eloise has had an amazing 11 years of good health. 

      We have been lucky with her post transplant for someone who is immunosuppressed she is extremely resilient, she has had mild chicken pox, two ear infections caused by swimming pools that required anti-biotics and 2 colds. She is does get the occasional cold sore but otherwise she's a healthy kid. Sometimes I get angry with the whole transplant situation , the why Eloise? Why us ? It can be incredibly hard but you have to think that right now 22 other families are waiting for the chance of life ,a heart transplant for their child, they want what we have been given. It feels wrong to be moaning. Eloise did not die waiting, she is alive.

      So right now we would like some more luck please, we got literally to Eloise's 11th Heart Day unscathed living the post heart transplant dream then bang ! Two rejection episodes a grade 3 in June and a grade 2 in September. The September episode although milder rejection has caused more problems a very persistent pericardial effusion that required further draining in November and unexplained tachycardia of 130 beats per minute.

      Nearly time for Eloise to face all the tests again as we need answers, her June annual review and coronary angiogram have been moved forward. So please, please wish her good luck, a turn of fortune would be good ! 

United We Stand

Very sad day in the closed group today as a little fighter lost his battle this little chap also caught a virus like Eloise but at just days old. He received a transplant but the donor heart never got beating properly and his lungs became damaged. It has made us all very upset and a little vulnerable. But we all stand by each other and support each other. The need for others that truly know what you are going through is immense. The group works well but we are having such a tough and sad time at the minute but we always have hope, no one can take that from us. I believe in medical advancements, I believe in science and I am grabbing on tightly to Hope x

My four Children

Today

Yesterday is History
Tomorrow a Mystery
Today is a Gift that's why they call it the Present.

How many of us live our lives in the present?  Do you worry about the future? Do you regret your past?

When your child under goes a heart transplant you are almost forced to live day by day, for your own sanity maybe. For the first year after Eloise's transplant I almost punished myself, re running the events in my head. Trying to see if I could of prevented her becoming unwell, what did I miss ? Should I have got her to hospital sooner. It was like a waking torture and got me nowhere. It had to stop.
Then the future, the future that quite possible could be a life without my daughter in it. Hideous thought, painful, no parent wants to outlive their child, to bury them . The statistics that you are told pre- transplant, the survival odds , stay with you, they haunted me for many years. When Eloise was transplanted in 2002 we were told 5-10 years of survival post transplant. I soon calculated this would mean her dying at Primary School. Why then did I have to send her ? Why did I have to share those precious 5 years of her life with others who could not love her so much as me ? The answer lies in the words "normal life" I owed it to my daughter to give her the same start in life as big sister Leah. So I tried then not to look too far into the future let it stay a little unfocused , who knows where life will take them anyway ?
      So here we are 11 years down the transplant line trying to make each precious day a good one, make memories and have fun. Not always easy, especially the last 6 months as Eloise has had 2 rejection blips and continues to have very unstable Tacro levels and a high heart rate. We've never had so many hospital appointments, so much disruption in our lives. Yes I am anxious , who wouldn't be? Who doesn't fear the unknown ? I like, no I love a plan and I need just that for Eloise, so in under 2 weeks she's off to Gosh for a coronary angiogram and other tests. Then we will know what we are facing.