Living the Holiday Dream x

What a difference just under two weeks make . It's funny how life flings you around, perhaps it's sometimes more of a Wultzer than a rollercoaster ? A couple of weeks ago I was worrying about Eloise's health again now I'm here in Turkey celebrating the life she's been given by her donor family. I'm so lucky to have my gorgeous girl here with me today . 

This is what we all strive for normal family life , no worries, freedom , precious time together . My family always comes together so strongly when we're together in this way on holiday. God I know I'm lucky to be able to afford such luxury but the time to me is precious . I save all year for this, putting money into an account each month. Maybe it's money that could be spent elsewhere, but I've weighed it all up and being on holiday together out weighs everything else I could buy . Off course if my money could buy me more time with my Eloise I would not hesitate to spend it that way, maybe this is the best I can do right now. All memories are precious but the ones we create together on holiday seem golden . That sounds a bit pass the sick bucket but I'm sure a lot of you will appreciate the sentiment. Sometimes when you're at home, you're just living alongside each other as life has become incredibly busy ? A holiday makes you spend quality time together.

                         

     So the next two weeks will be spent as a fantastic family of five, because as we've found out 5 really is our magic number ! I'm grateful to S he has sent me money today to treat the children , so we can have an even better time. 

To top it off our friends A and M are here, we met at the Orka in 2010 when I was still with S and again in 2011 when we'd recently split up. So here we are 3 years later catching up and enjoying each other's company. Like we've never been apart, some friends are just like that aren't they, separation doesn't change your relationship. I'm happy as they'll soon be living a lot closure to us again.

                    Lots of love to you all from Us xxxxx

                          

The Clinic Letter

My Superhero loving daughter was kidnapped and replaced with someone wearing pink , frilly socks and a plait in her hair, I was privileged today !                                                    

         

                                             

The Clinic Letter 

Those of you that have regular trips to hospital appointments will be aware of the post appointment clinic letter. These letters usually arrive 3 weeks after the consultation, you're cc into the letter that is primarily for your GP or other specialists involved in your care. 

    So Eloise's Bristol letters go to our GP and her GOSH consultant and then of course her GOSH letters go to GP and Bristol consultant. The GOSH letters used to enjoy a little trip to India to be typed at one point. I remember a particularly vile patronising transplant nurse telling me so "Mrs Allen you must remember we are busy and our letters are typed in India " Mrs Allen failed to comprehend this and remained cross that a letter telling her her child needed to start antihypertensive medication took 8 weeks to arrive ! 

          Also these letters never seem to make it into your notes very swiftly as in you go to your next shared clinic appointment and the letter from a clinic three months previously hadn't been filed , where is it ? 

    Now this brings me to my latest experience with said clinic letter. On the 11th of June Eloise was seen in Bristol, she had an ECG and an Echo and saw her consultant Dr M. After Eloise's echo the technician got it checked by another tech, they seemed concerned, stopped engaging with us and started that whispering . Well what does that do to you ? For me my stomach knots, I feel sick, faint and cold. Eventually Dr M came back from seeing an emergency patient and said he was happy with the scan, phew, relief floods through me once more. I become chatty again , the World is a good place, my child is ok. Fast forward 3.5 weeks the clinic letter drops through the letter box on Friday......

   I read it getting to the part about the echo. There in black and white "septal motion abnormal " What !!!! They said everything was ok, abnormal isn't ok , well it's not normal ! Fear floods in again. I do what I tell others not to do I google, getting nowhere reassuring !

It doesn't make sense why tell me everything's ok and then send me this ? I go from reassuring myself that if it's something major wouldn't it have been dealt with already to that's it no holiday they'll admit her more tests . I think why has she got this problem now, is it her new medication Ivabradine that lowers her heart rate. Maybe this is an electrical problem....yes that's it they'll tweak her medication she'll be fine. Another problem was also mentioned but that made even less sense to me. 

    So there we are 5 days and nights followed, anxiety levels fluctuating from being totally ok to doom and gloom. Couldn't think ahead , couldn't look forward to our holiday, or even going out the next day. Everything like that lost it's shine. Scary how quickly that happens when things aren't "right" with your child. 

        Couldn't eat breakfast this morning but managed a hot chocolate and ginger snaps on the train, they swirled around in my protesting tummy. Levels of fear increasing as we got nearer to having the dreaded echo. How happy was I that a lovely friendly lady called her in. This makes such a difference some of the GOSH techs aren't great in the communication department. I was glad when the echo was over, she didn't ask for another opinion ( great ) she didn't call for a Dr ( marvellous ) phew ! Thought of rummaging through the notes on the way back to clinic but resisted ! 

         Then it was time to see Dr F I was glad it was him, I trust him, I like his approach and his honesty.  He was smiling away, everything looked fantastic, great ECG voltages higher than they have been for quite a while, stable echo with no increase in fluid good function. So I showed him the clinic letter, he then popped Eloise's echo up on his screen checking for the problem Bristol had seen it wasn't there. Phew, he said even if it was a flattened septum is common in transplant patients .He also reassured me regarding the other problem. 

  Next time I'm worried I must ring him, he insisted that I ring his secretary and leave a message and he'll get back to me. I know if clinic had been ages away I would have rung. I'd already scanned and sent an ECG to them from the 11th June as I was worried. 

        So there we are the clinic letter, it's designed as Dr to Dr correspondence it can be too complicated for us to understand ( and I'm a nurse ) yet we get sent it. How often have you wondered what it all means and been concerned ? Yet if we don't receive a copy it can sometimes be hard to get new prescriptions or treatments as the Drs seem to not have the letters infront of them when you visit, a delay in filing them. A tricky situation indeed. 

Advance Warning !

It's nearly National Transplant Week, prepare to be swamped ! 

      

I was just thinking today whether all my FaceBook friends were actually on the Organ Donor Register, perhaps that should be my new criteria for adding new friends ? There's a thought.....

 In some ways why should you be registered it's your decision , your body, your organs. I wonder how many of my friends have registered to become donors because of Eloise and her story, must be a couple of people for sure. I guess her story highlights the fact that any of us could need a organ transplant in the future. Statistics tell us we're more likely to need a transplant than become a donor. Common viruses can cause rare complications leading to an individual needing a transplant, you don't need to be born with a "poorly" heart for example. 

    We all have things we are passionate about, organisations , concerns we support often things that have touched our lives or those of our loved ones. I guess Organ Donation is mine, I've been an organ donor since 1989, still got my card here somewhere . I signed up when I started my nurse training, can't remember if I found the leaflet at my new GP surgery or whether we were handed them when we started our course. Anyone in Set 227 remember....dig deep ! So of course now it's taken on a different meaning, we crossed over to the other side. I live with a transplant recipient. I have a gorgeous daughter who is only here because of a donated organ. See that pushes me on to promote the register, do you get sick of it ? If so please feel free to delete because I cannot stop. Sometimes it's what keeps me going, fills a potential void, gives purpose and helps me to give something back. 

Eloise is one of the lucky ones, she got an organ, nearly 7000 people are currently waiting for a transplant in the UK, 3 of those will die each day waiting only to be replaced by others. Statistics are cruel aren't they? 253 people are currently waiting for a heart transplant and 32 of those are children. It makes you realise what a lottery this is with quite poor odds. The family has to say yes to transplant, the organs need to be in transplantable condition, they need to tissue match, blood group match, CMV match, size match and be transferred to the transplant hospital within a small window of time. Then the donor needs to be ready and well enough to receive a transplant. I've probably missed something vital out but you get the general idea. It's a miracle anyone gets a transplant.  

So I could go on, perhaps I will next week, this is just your warning ! 

                        

So if you love me ( blackmail involved here ) please sign the Organ Donor Register Today, Tomorrow, as soon as you can it takes just minutes.

http://www.transplantweek.co.uk/register/