Feel Good Friday

Misunderstood Spider!

A Big Hello to Everyone!

Hi everyone, my name is Olivia!

Jon is saying a sad goodbye to LHM and going off to start a new chapter of his life, teaching!

I will be taking over the position of Youth Project Development officer for the next six months. There will be lots more information about me coming out in the July youth newsletter.

I have lots and lots of ideas of how we can work together to build the youth services and am very eager to start.

I really want to hear from you if you have any ideas (big or small) of things the Charity could be doing for you guys so please contact me either via the Facebook page or email me at olivia@lhm.org.uk

Looking forward to hearing from you!

Adult 'Norwood' patient visits ECHO

This article was written by Jo Wilson, who is the Chief Executive of ECHO (the Evelina Children's Heart Organisation), a charity that looks after heart families treated at the Evelina Children's Hospital in London. You can go to ECHO's website by clicking here.

On 28th May my daughter Cissy and I were really lucky to meet a young man called Tory Jenkins. Tory is 25 years old and is one of the oldest surviving Norwood patients in the world.

In fact, Tory, who is American and lives in Colorado, had his surgery performed by the famous Dr Norwood who developed the Norwood procedure in the early 1980s.

The Norwood procedure is usually performed just after birth. It allows the right side of the heart to do all of the pumping. The procedure was first performed successfully in 1981.

Tory is the nephew of the ward clerk on the Cardiac Ward at the Evelina, and she had told him all about the work ECHO does at the hospital, so Tory was keen to be introduced to us and hear more about us, so we arranged to meet up at the Evelina. Tim Emsley, ECHO’s new Youth Development Officer also came along and was inspired to hear about Tory’s life and the challenges he’d faced as a teenager.

Left to right: Cissy, Tory, and Jo Wilson, Boss of ECHO (and Cissy!)

Tory is a wonderful, caring young man who has led life to the full, taking part in sport and lots of other activities. He is tall and fit and (I hate to say this – it’s such a cliché!) you would never know there was anything wrong with him from looking at him! He is engaged to be married, moving into his own place with his fiancé and hoping to start a family of his own. Interestingly, Tory told us that there was not much support available for heart families in the USA and that his dream would be to set up a support group like ECHO or Little Hearts Matter.

This video from the Children's Hospital of Philadelphia gives an idea of what the surgeon does during a Norwood procedure.

He also said that lots of families struggle to pay for their child’s treatment and that made me thankful that Cissy was treated here in Britain under the NHS! I thought you might like to see a couple of photos of Tory with his family.

Feel Good Friday

Actual size blue whale heart!

This is pretty cool, a scale model of a blue whale heart...

Here's some information about the heart from the wonderful wikipedia:

Due to its large size, several organs of the blue whale are the largest in the animal kingdom. A blue whale's tongue weighs around 2.7 metric tons (3.0 short tons) and, when fully expanded, its mouth is large enough to hold up to 90 metric tons (99 short tons) of food and water. Despite the size of its mouth, the dimensions of its throat are such that a blue whale cannot swallow an object wider than a beach ball. Its heart weighs 600 kilograms (1,300 lb) and is the largest known in any animal. A blue whale's thoracic aorta is estimated to be 23 centimetres (9.1 in) in diameter. During the first seven months of its life, a blue whale calf drinks approximately 400 litres (110 US gal) of milk every day. Blue whale calves gain weight quickly, as much as 90 kilograms (200 lb) every 24 hours. Even at birth, they weigh up to 2,700 kilograms (6,000 lb)—the same as a fully grown hippopotamus. Blue whales have relatively small brains, only about 6.92 kilograms (15.26 lb) , about 0.007% of its body weight.

Wanted: Teenager to review our sport booklet.

Hey all. As you know, LHM writes a whole bunch of useful leaflets about heart conditions. We've just finished writing one about sport and exercise, but we need a young person (under 25) with a heart condition to have a look at it for us. This is because we have the Information Standard, which shows that the stuff that we write is accurate. So if you could help us out, we'll love you forever.

In the meantime, here are 9 hilariously distressing letters from children, carefully stolen from another blog.
Jon

Having a 'Stress Test' for the First Time.

Matthew Palmer, one of our older members, recently made the transition to adult hospital services. After making the move to adult services, your new heart doctor will usually order a whole bunch of tests, they sometimes call this an 'MOT', just like you have to get your car properly checked once a year to make sure everything is working okay. Matthew talks about what they tested and why.

My name is Matthew Palmer, I am 17 Years old and I have a condition called Tricuspids Atresia. My Atresia is on the right side of my heart rather than the left side of the heart. I have been under Birmingham Children Hospital since I was born but I have recently been transferred to the Queen Elizabeth Hospital in Birmingham. The main reason why I had to have a Stress Test is because my new consultant from Queen Elizabeth wanted me to take part in a stress test to get a broader idea of how my Heart is working at this moment in time.

At first, when I was told that I had to have a stress test done, I was worried because I didn’t know what to expect from a stress test as this was going to be my first ever stress test. On my arrival at the hospital I was told how the stress test was going to be and I was given some instructions prior to the test beginning. After the brief discussion about the test, they took me to have my height measured and then before the test they tested my oxygen saturation levels to see what my saturation is normally like before the test began. The reason for checking my saturation before the test was to see what my saturations are like on rest and before any physical activity.
Next, once the saturation was measured, they started to put me on the ECG monitor because the ECG monitor would test my heart rhythm while doing the stress test. After the ECG monitor was fitted they then placed a special breathing mask as this would monitor my oxygen intake to my lungs, thus will then be monitored on the saturation. When the test began they asked me to take deep breaths; then to breathe out until I was no longer able to breathe normally without taking another breath. This was to test my lung capacity for breathing and my intake and my output of oxygen. Once that part of the test was finished they gave me a 5 minute rest so that I could catch my breath before the treadmill test began.

Once the 5 minute recovery was over they started to begin the treadmill test but, before that they told me they will start the treadmill at a slow walking pace and then gradually increase the speed. They also said that once I became breathless and can’t carry on I should let them know and they will stop the test. When the test began the speed on the treadmill was at walking speed and during that speed I was still feeling a bit nervous and apprehensive as this was a new experience for me. Within 1 minute of the walking speed my nerves started to calm down and I started to feel a bit more comfortable in doing the test. I started to get into the rhythm of the stress test, then they increased the speed just a bit but not by much, during that speed my nerves completely had gone and that was when I realised that the test wasn’t at all bad.
Also, during that speed, I found that my body and heart were coping well with the speed and that I wasn’t getting breathless. Once the speed started to get faster I did start to feel that I was beginning to push my body towards my limit and I could start to feel my heart beginning to beat quite fast. During that time my saturation started to slowly decrease as the test continued. The treadmill was then gradually increasing to a running pace and when this was happening I started to get breathless and my legs started to hurt and tire. Eventually once they set it to the running pace I started to feel the pace and started to feel myself pushing it to the limit; while this was happening I felt my heart beating faster and becoming breathless.

After I started to feel this happening I asked the assessors to stop the test as I have went over my limit and I was unable to continue because I was breathless; thus after asking them to stop the test the assessors stopped the test by decreasing the speed until the speed stopped. Once the test was over they took off the mask and the ECG monitor, after that they gave me a rest and once I had caught my breath they asked me on a scale to 1- 20 how hard I thought I pushed myself during that test in which I said 15 as I believed I pushed myself to my limit and surpassed my limit. The assessors told me that I will not get my results back until my next appointment with my consultant as the consultant will have to look at the results first before telling me how my heart is getting on at the moment.

Overall the experience of the stress test wasn’t as bad as I first feared.

Here's an example of an exercise stress test, but without the breathing mask. This isn't Matthew in the video, but still gives you a good idea of what goes on.

Introducing the very talented Sarah and her red guitar...

Sarah is one of the oldest members of Little Hearts Matter, and as you can see she has a wonderful musical talent.

If you want to check out more of Sarah's music, head on over to YouTube and have a look at her channel SarahAndTheRedGuitar :)