Autism and the heart

I have read that there are lots of different co-morbidities (don't like that word) that come with autism, and one of them is congenital heart defect. I had one of them, being born with a hole-in-the-heart (medical term is ventricular septal defect). If this is you, or you know someone with this, please read what I have to say. It might not happen to everyone who is autistic and has a heart defect but it can happen, which it did to me. In 2020 I fell seriously ill and didn't realise how serious and complicated it was, until 2021 when I ended up in hospital and being diagnosed with endocarditis. I had a blood test which revealed I had a bug in my blood. That bug had got into my blood stream and then to my heart via the hole-in-the-heart that was there. It then found the leaky heart valve I had (medical term for that is aortic regurgitation), where it made the valve worse so that it spread throughout my body during that year. It infected my valve so badly that it needed replacing, and I now have a mechanical heart valve. The hole-in-the-heart was stitched up during the main surgery.

So, how did the bug get in my blood in the first place? Well, I am not completely sure but I still think it was during a dental hygiene appointment when my teeth were being cleaned. This was before Covid, and procedures have slightly changed since then. If you have a congenital heart defect you will probably have a special card to take to your dentist when having treatment about having to have antibiotic cover. If you do have one of these, please use it and make sure your dentist/dental hygienist adheres to it. It is important to your health and heart. I will expand on that next week.

If you have a heart defect or even a leaky heart valve, please take care of both your heart and teeth. They are closely linked as I have found out to my own health, even if I did take the antibiotic cover on that day.

I am aware that not all autistics might have a heart defect, and not all people with heart defects are autistic. I have met a couple of people (both ladies) when I was in hospital both times who had heart defects and weren't autistic. 

If you would like to know more about how I coped with his heart infection and why I am passionate about it (dare I say it is close to my heart), then why not read my memoir 'Endocarditis - My Journey'. It is available on all digital platforms as an ebook, also as a paperback via my website (UK only), and from The Book Dragon bookshop instore and on-line. 

Meet Sammi squirrel at Beckenham

 

This is Sammi an unlucky squirrel who features in my first picture book for children of 3-7 years-old. I first wrote the story some years ago and it was published as a fiction story in a small press magazine about animals. His story sat on my computer for years after that until this year when I decided to show him to the world as a picture book. I am so pleased with it. It is out now on Amazon here https://www.amazon.co.uk/dp/191511408X. Or if you want to get a copy in person from me and at a discounted price, I will be at the Beckenham Book Festival next Sunday 2 July at the Coach and Horses pub, Burnhill Road, Beckenham. There will be lots of local authors there and we will be selling our books in the beer garden at the back of the pub. I will also be selling my other children's books and my memoir. Come and say hello to us all. Here's hoping for a day like today. Sunny and no sign of rain.

Where has my voice gone?

 There is one thing I do remember when I was in hospital two years ago, and I thought I had put it in my memoir, but it is not there - I lost my voice. I remember maybe it was a couple of days after I had been transferred from ICU to the High Dependency Unit, I went to talk to a nurse and nothing came out but a whisper. Why couldn't I speak? Where was my voice? I briefly wondered why I couldn't talk. I remember thinking the only way to get my voice back was to practice talking, which is what I did. Whenever I was alone, I would whisper hello to myself. After a day or two of doing this, I got my voice back and I could ask for help properly. Now knowing what happened to me after the surgery, I know why I lost my voice. I had been in intensive care in an induced coma for three days on a ventilator helping me breathe. With having that in my throat, and not being able to talk for at least a week, my throat must have dried up. That is the only time that I recall ever having lost my voice. I might have got close to it with a bad cold at one time, but not like that. If you have read my memoir, then you will know that I made up for the time I couldn't talk after that. Lol.

Find out what happened to me two years ago in my memoir out now either via my website, Amazon or The Book Dragon (in store or online). It is called 'Endocarditis - My Journey'. One journey I don't want to go through again. You can find it here https://www.amazon.co.uk/Endocarditis-My-Journey-Julie-Day-ebook/dp/B0B8VT2X1H

Me and my heart

 Thursday 29 September (two days ago) was World Heart Awareness Day, it also happened to be my mum's funeral. My heart was aching with grief then and still is. 

Although a lot of bad stuff happened to me as I have put in my memoir 'Endocarditis - My Journey' there is one good thing that came from it. Here is what I wrote near the end of the book.

On the good side is that when I had the surgery, I also had my VSD closed, and having that done and/or what I had been through on my own made me able to go to all these hospital appointments on my own, something I had never done before. I feel that it is probably more to do with having the VSD closed that's made me like I am now. I was quiet and not so confident before the surgery, but after it I was able to speak out more, and go to these appointments by myself.

I still believe that this is true. I recall when I was in hospital, maybe because I was feeling very weak still, that I didn't want to walk too far in case I got lost. When I get lost, I get flustered and can have a meltdown. Since I came home last year I have been to many hospital appointments; at Lewisham Hospital, Guy's, and St Thomas's Hospitals. All to different departments and different buildings and zones. Before I had the surgery, I feel there would have been no way that I would have coped doing that on my own. It is a case of having to now, being on my own.

Onwards and upwards I say.

If you would like to read a 'very honest and inspiring' book then my memoir is available here https://www.amazon.co.uk/Endocarditis-My-Journey-Julie-Day-ebook/dp/B0B8VT2X1H

Endocarditis - My Journey

 https://www.amazon.co.uk/dp/B0B8VT2X1H

I tried to post above the cover image for my memoir but it wouldn't let me for some reason, so I have put the link instead. 

I know we are all feeling such sorrow at the moment (me more than most as my mum passed away in hospital the end of August) after the Queen dying. I thought I would post something could, and that is a review of my memoir all about coping and surviving endocarditis (infection of the heart).

AUTHOR- Julie Day
PUBLISHER- Happy Day Press
PUBLISHED ON- 5th Aug, 2022
GENRE- Autobiography
RATING- ⭐️⭐️⭐️⭐️⭐️

" ENDOCARDITIS IS ALIVE AND WELL, UNFORTUNATELY "

ABOUT AUTHOR- Julie Day writes realism for adults and children featuring helpful ghosts and magical things.

BOOK DESCRIPTION- Julie's Journey of endocarditis from symptoms to recovery.

BOOK REVIEW-

Book is the Journey of Author's serious heart illness and her struggle to recover it. Endocarditis is a heart disease when bacteria or other germs enter the bloodstream and travel to heart to stick to damaged heart valves or tissues. It is rare and potentially fatal infection of endocardium.

On the basis of rough statistics, the mortality rate of endocardium is 29% and this issue of concern.
Endocarditis has challenged clinicians for centuries. Despite recent advances in diagnosis $ therapy, the risks of major complications $ death remain unacceptably high. This is a major public health problem. The solution to this conundrum is not easy. It is unlikely that we will be able to eradicate this illness at any time in the near future. However, we can certainly make greater efforts and prevention.

Julie shared her journey of symptoms like weight loss, muscle pain, tiredness, breathlessness,chills $ many more from 2020 to 2021. Struggle she faced throughout the recovery process, the tests, the hospital stays and switchs, the surgery, post recovery at hospital $ home. All during pandemic which turned her life upside down. She inspires all of us to cope any situation and book guides anyone who wants to learn about heart condition personally or medically.

You have to fight through some bad days to earn the best days of your life. Just because you can't control what life throws at you doesn't mean you can't control how you handle it and this is very well thought by Julie in her book.

To author- The strongest hearts have the most scars.
I'm glad I came across this inspiring journey.
SALUTE TO AUTHOR FOR HER BRAVERY 🙌

************************************
JOURNEY | STRUGGLE | INSPIRING
************************************

I hope inspires you to want to read this too. 

I have a question to ask you all. I am planning to create a talk with a workshop based on this, and am wondering what you would like to learn or know either about endocarditis and/or coping with a serious illness. Please let me know in the comments so I can work on this talk. Thanks.

Books at Beckenham - Meet local authors

 

If you are in or around Beckenham this Sunday, come and meet some local authors including me. As well as books being sold, there will be hopefully a storytime happening for children aged six upwards. I will be there selling my children's books and my new memoir 'Endocarditis - My Journey' all at special prices. You will get a free coloured paper bag of your choice (blue, black, green or red) and a bookmark to go with the memoir. Here is an excerpt of my memoir: 

September 2020

I can't remember what happened in this month, except I was still losing weight. It might have been this month that I started to experience another unpleasant symptom. I have never liked finding loose hairs in places they shouldn't be such as on soap bars or places where I eat. I can't recall how it started, but one day I found a loose hair and OMG, I felt ill! I wanted to be sick. I actually retched. This would happen quite often, and on a few occasions I was actually sick. I hated it. It put me off my food if I found one on the table as I was about to eat. I googled this. There is a name for it, but I can't recall it. What I do remember seeing is that one of the causes was infection. I didn't think anything of it. When I mentioned it to my mum, she said that she used to be like that when she was younger, so I thought that I had taken after her, like with a lot of other things. I didn't know that it was part and parcel, as they say, of a bigger health issue.

I hope to see lots of people there. 

Happy May Day holiday

 To all of you who read this from the UK, Happy May Bank Holiday. The sun might not be out but at least it's not raining, yet. 

Sorry I've not been on here recently but life gets busy when you're a carer for your parent who's bedbound and has dementia, and has their own health matters to deal with including lots of appointments to attend. Thankfully the appointments seem to have decreased at the moment now that I've been out of hospital over a year. Where did that year go?

So, what have I been up to? Well, I have recently published a children's colouring book to go with my Rainbow School children's series. It's an A-Z of Autism and you can find it here https://www.amazon.co.uk/Rainbow-School-Autism-Colouring-Book/dp/1915114012.

Also, I have had a short story accepted for an anthology about modern magic in life. My first story in an anthology and I am super excited about it. It means that my writing has merit with someone else. I will let you know when that comes out. It won't be yet as there will be edits to work on and then a contract to sign.

I am also working on my memoir still about having endocarditis. I am reading through it to make sure there aren't any more things I can remember to add in it. Then I will check through it with my diaries and calendars. I hope to have that out by September. The cozy mystery I hope to have finished and ready to publish for Christmas.

Meanwhile I am going to Sydenham library most weeks to take part in craft lessons, and have copies of my books with me. So, if you are near there on a Thursday lunch time, then come and say hello.

I think that is my current news for now. Any more and I will let you know, sooner than later.