“Most importantly I am very thankful to have you all in my life and look forward to seeing you soon.”
I kept thinking I didn’t want to go through the same experience that I had with my parents every time I told someone about what was happening. It was emotionally draining and I could imagine it being the same; the looks on their faces, a silent pause while it sank in, followed by an awkward conversation. I couldn’t go through that every time.
When I got back to London I discussed the weekend and the despair I felt with my sister, and she suggested sending an email to everyone I wanted to explain things to. It seemed like the perfect solution so I took some time and late one evening in my studio (I did a lot of music production and my studio had always been my sanctuary) I sat down and wrote the best email I could. I wanted to offer a clear explanation of what I was going through and what was going to happen so that everyone could come to their own understanding of it all in their own time and space.
Here’s a copy of the email I sent. The subject line read simply : ‘ :) ’
You’ll have to excuse the ‘generic-ness’ of this email but it’s the best way of emailing a bunch of people together to let you know of some news from me.
There’s no easy way of saying this, I have some serious issues with my heart and need to have surgery.
The medical term is a bicuspid aortic valve and servilely over dilated left ventricle.
In the heart there are 4 valves which pump blood from your lungs to the heart and then throughout to the body. On each of these valves there are cusps, think of flaps, which open and close to pump the blood.
You and like everybody else will have three cusps (tricuspid) on your aortic valve where as I have two (bicuspid).
This is something that about only 1% of the population have. It happened whilst ‘the process of life’ was going on in the womb and basically didn’t develop correctly.
As there are only two ‘flaps’ they have been working overtime to pump the blood around my body, they are now very weak so when they open/close they are not shutting properly to seal close and are in effect flapping backwards so blood is now re-entering the heart the wrong way, which is not good news. This means the heart is again working harder than normal to correct this, so whilst all this is going on the heart has increased in size (think of an overworked muscle getting bigger) to what is now a dangerous size. At least I have a big heart! :)
So the cycle goes on and on.
All this has come about after different tests and finally I saw the surgeon a few weeks ago who explain everything and the urgency to operate. I have known what’s going on but not quite how severe until seeing the surgeon.
As he pointed out, you know how you hear about young people just dropping dead, well this why. The heart will have a spasm and that’s it.
So this is where I am, the operation is on the 11/10 and ill be in St Barts hospital in central (Farringdon)London.
I have done a lot of research and joined forums , checked blogs etc to speak with people who are in a similar way or have had the op etc. I do feel very knowledgeable and aware to all this, I feel a bit of an expert! ha ha
I have a few meetings with the hospital in between now and then and I have already been back to see the surgeon to quiz him on all my questions.
What’s left to decide now is I have two options for surgery. During this procedure they replace the whole valve not the just the cusps.
The choice I have is either a tissue valve or a mechanical valve replacement.
The tissue valve will be from either a pig/cow or human if available and the mechanical made from Titanium.
The titanium valve will ‘out last me’ which is good, although I need to take medication everyday for the rest of my life called Warfarin or another anticoagulant. The reason for this is the blood will form clots on the mechanical valve and for obvious reasons this is not good. They will either lodge there or break off and get stuck somewhere in the body which leads to strokes and other things.
Warfarin prevents the blood from clotting, the term they use is it ‘thins’ the blood. This way there are no clots to form.
This carries other issues as there are certain foods which you can’t eat, possible side effects and you have to change your life to a certain degree. As Warfarin prevents the blood from clotting ( basically stops the development of vitamin K) If I have a cut this could be an issue, bruises are three times bigger than normal, things like going to dentist are a problem and you can’t do anything that involves contact.
I would need regular visits to the hospital to have blood checks so the dose is constantly managed etc.
With the tissue valve I don’t need to take any medication after the post op tests etc.
The only thing with the tissue valve is they don’t last, somewhere between 15-20 years and then the process has to be repeated and the second heart surgery is riskier as you have already been through it so the body has scar tissue and will be going through the whole trauma again which is not recommended, again having to decide on a tissue or mechanical valve.
Having just turned 30 I am very young to be going through all this and to then have another open heart surgery in 15-20 years I still won’t be old! :)
Either way both options are huge life changing things to deal with and I have to make this choice.
As mentioned I have been on blogging sites and spoken with people who take warfarin etc as its not too uncommon.
I could go on and on, in a nutshell that’s it.
If you would like to go over any of this on the phone that’s fine as I am happy to speak about it, in fact I feel very calm.
I am really good and have had time to deal with this, to be honest I don’t think it’s sunk in yet, more the recovery its very long and I will need to be looked after for some time.
I’ll be in Barts Hospital from the 11/10 for a week to 10 days, depends how the body heals. If you do want to come to visit it would be great to see you, in terms of times etc that’ll be sussed out nearer the time.
From then i’ll be at home recovering, Tiana is going to look after me and then my parents. It looks like i’ll be away from work for approx. 3 months.
Whilst I am in hospital if you are looking for news etc Tiana can be contacted on……………….
I should have my mobile on me, not too sure how it will all go though.
I appreciate this will come as sudden news, I felt the best way to let you all know is via email as I can explain fully what’s going on and having this conversation face to face is not easy.
This way I hope you’ll have time to digest and get in contact with me if you feel you want to.
As mentioned I am more than happy to talk about this and the plans in place, if you have any questions etc etc.
Most importantly I am very thankful to have you all in my life and look forward to seeing you soon.
I pressed send and the email was done. As people started to contact me in response it was pointed out that the operation date I had stated was in a few days’ time rather than the month that it actually was. Clearly my head wasn’t in the right space so I sent a follow up email correcting the date to 11/11/13.