I have written previously about my friend Lisa and her youngest daughter Robyn here. Robyn had a pretty tough start to her life, I’ll let Lisa explain why:
Robyn was diagnosed at 3 weeks old with Severe Aortic Stenosis, she was in heart failure and we came scarily close to losing her. For her first 8 months she was in and out of hospital a fair bit, and had 2 balloon catheters and then open heart surgery to stretch her valve. We then had a wonderful couple of years where she did brilliantly. We then started to notice that she was starting to tire more easily than she had before, and there was a definite difference in her energy levels in comparison with her friends. We had always known that she’d need a valve replacement at some point in the future but her valve was still doing really well. She was sent for an MRI and they discovered that she has Endocardial Fibrolastosis (extensive scarring of the heart muscle). This means her heart doesn’t relax properly and she now has an enlarged left ventricle. In turn this has caused increased pressures in the right side of her heart and led to her developing Pulmonary Hypertension.
When we were first told this news last summer it was with the news that we may have her for another 10-20 years but that was it. Both the new diagnosis’ will lead to heart failure in the end and transplant wasn’t necessarily going to be an option due to the pulmonary hypertension. We were devastated as you can imagine.
Since then Great Ormond Street hospital (GOSH) have been asked to meet with her and give their opinion. She had a cardiac catheter in May to make initial investigations to see if she is suitable for a heart on it’s own, or whether the pulmonary hypertension has already caused too much damage meaning she’d need a heart and lung transplant.
In June 2013 we met with Dr Matthew Fenton at GOSH to discuss Robyn’s catheter results. It came as a shock when he said that he thought she should be put on the transplant list as soon as possible for a heart. We thought going on the list was a little way in the future. A week later we had a meeting with the transplant nurse, without Robyn, who talked us through the whole process. We agreed that as daunting as it all seemed it was definitely the right thing to do for Robyn and gave her the best possible chance. So as long as it was agreed in the joint meeting that Thursday then she would go on to the list that week.
That Thursday came and Dr Fenton called me. Someone in the meeting had suggested an operation to try, in the hope that if successful they could hold off transplant for a while. So on the 14th October Robyn will be having the Ross Procedure (valve replacement), and an EFE Resection at GOSH. They are hoping that if they can remove enough fibrosis from her heart that it will allow it to relax properly and pump more effectively. This in turn they hope will reduce the pressures in her lungs, or even reverse her Pulmonary Hypertension entirely. There are no guarantees that this will work, she may end up on the transplant list soon after anyway. Robyn has previously been a patient of the Brompton, but it’s been decided to go ahead with surgery at GOSH as they have the Berlin Heart etc in case there are complications. It seems right though to give her the chance to get older before she needs transplant. We just have to keep everything crossed for her.
Lisa and her family have made every effort to keep themselves and others positive and motivated. Together with another friend Cath, Lisa set up Hearts & Heads Lisa explains;
“This blog and the idea to raise money for the Stroke Association and The British Heart Foundation came from a chat between us on Facebook. We had discovered that day that a wonderful mutual friend of ours had suffered a stroke earlier in the week. It was a massive shock as she’s in her early 30s. The Stroke Association is a cause close to Cath’s heart anyway (see her page for why), and this made it close to mine too. In addition I have a close affinity with The British Heart Foundation due to my daughter’s heart condition.
So a chance conversation in which we said we both wanted to do something to raise money for these causes started this blog. We can both raise money for our causes, supporting each other, especially in any of the more scary ones we decide to go ahead with!!”
I would be that friend in her early 30’s and I was just blown away and feel very honoured to provide even a little bit of inspiration along with their loved ones.
So far the girls have scaled heights to raise money. This is a big deal because they are both pretty scared of heights. Cath also ran 5k and raised money for the Stroke Association last year. Watching them battle their fears to complete an aerial assault course made me simultaneously proud and guilty that I wasn’t up there with them!
Earlier this year there were conversations around a sponsored walk type event. I wanted to do something to help, but with my mobility issues a walk of any length wasn’t really doable. I needed a way to contribute, to raise money while sitting down ideally. I wanted to help so badly and felt more than a little frustrated with my own limitations. My challenge had to involve doing something that meant facing a fear of my own and a sponsored cake eating competition didn’t seem suitably risky enough! A sponsored tattoo seemed the obvious answer… obvious in the way my mind works anyway! Despite all the surgery I have faced over the last few years I am still quite scared of the idea of having a tattoo. I say quite, I mean I am trying not to hyperventilate.
I put the idea to Lisa and Cath and they were right behind me. Normally Heats and Heads raises money for either the Stroke Association or The British Heart Foundation. They also normally ask for small donations in the hope that this will make it easier for people to keep donating to their fundraising efforts. Typically I am doing my challenge a little bit differently.
First of all I am raising money for the Make A Wish Charity. They made Robyn’s dream come true earlier this year, when she, her fabulous big sister Morghan, Lisa and husband Ross were whisked off to Eurodisney and the girls got to be real Disney princesses.
Lisa says ‘the Make a Wish Foundation allowed both Robyn and her sister Morghan a chance to have some magic in their lives, before coming back and dealing with hospital appointments and operations‘.
Make A Wish make dreams come true and for families like Robyn’s it is priceless. So I want to say thank you and help them continue to make the dreams of other families come true. I will do it by marking myself permanently with ink and with that in mind I have set a target of £250 for this challenge – and if we can smash that so much the better.
This is the design I have chosen. It was a tough job. Originally I planned to go for something relating to mindfulness but it seemed really important to find a design that reflected Robyn’s challenge as well as my own personality. A heart wearing headphones just seemed to do the job perfectly. It is booked for Saturday 5th October, the day before Robyn’s 5th birthday. It is in 10 days time and 10 days before Robyn has surgery.
I will be getting inked by Josh at Tenacious Tattoo, He is going to work on a couple of redrawn designs, which I can’t wait to see. If you haven’t already, go and like the Adlibbed Facebook page where you will be able to keep up to date with how close we are to our target and hopefully photos of the tattoo as it is done.
So. We haven’t got long. Please sponsor me here and please share this post far and wide and ask other people to sponsor me. Let’s smash this target. Please think of Robyn and her family on the 14th too, say a prayer, send a thought, whatever works for you. Robyn has proved time and again she is a fighter.
And although Robyn has a heart valve replaced on the 14th, she will always potentially need a heart or heart and lung transplant in the future. By joining the Organ Donation Register we can all help others like Robyn continue to fight when we are gone too.
Thank you.
Note: This was first published on http://adlibbed.blogspot.co.uk
