I find I get asked a lot of the same questions so I thought I'd do this Frequently Asked Questions page to satisfy your curiosity without having to go back over my many blog posts to find out some basic information about me. Although please feel free to email me using the envelope button in the side bar if you have any questions. 

What kind of heart condition do you have?
I have an AVSD, which means I have holes in both sections of my heart. I also have Left Atrial Isomerism, which is when your heart is deformed so that it is symmetrical, the right side is a mirror image of the left instead of being normally formed. This means my arteries are connected to my heart in unusual ways. I used to have a pacemaker as heart surgery had damaged my heart, causing it to slow down and stop while I was sleeping. However my heart has since repaired itself, or another part of my heart has taken over or grown stronger and I no longer need one. Yay!

Can you explain your lung disease?
I can try. No one knows how it is caused but it is a condition where the arteries within the lungs thicken and tighten so that blood cannot flow easily to be oxygenated. It causes low oxygen levels in the blood, which causes the sufferer breathlessness, lethargy and damages the heart as blood is backed up and pressures rise in the heart and lungs. Untreated it can kill within three years. It is not curable but can the progression of the disease can be slowed down with medication and symptoms can be managed to a certain extent.  

Are you on the transplant list?
Yes, I am currently on the active heart and lung transplant list. The average wait is around 2 years but can be a lot less or a lot more depending on your luck. I have been waiting for about half a year so probably have a long way to go yet. However it could happen at any time. Follow the link in the sidebar to my facebook group if you are keen to know when it happens as I will most likely update you there first.  

What is life like for you at the moment?
I am in and out of hospital quite often but day to day I focus on little hobbies such as sewing, writing, watching tv, listening to music and getting out of the house when I can to do normal things like going out for dinner or shopping. I see my boyfriend, who is at university, as often as I can and spend as much time with the people I love as possible. I can't walk very far so use a wheelchair when going out but I am able to potter about the house, get food and drink and things like that. I do need help washing, organising my medication and fetching things from upstairs and I need a bit more looking after when I'm feeling more tired or ill than normal. This is all normal for me and honestly you get used to not being able to get around easily. I definitely don't spend my days crying and moaning about my life!  

Why do you blog?
I blog because I want to share my story and help others. If one person feels inspired or feels less like they're on their own because of my blog then it's worth it.

Can I share your blog with my friends?
Yes! Please do! You can use the social networking buttons in the side bar to share my blog on the most popular sites or just copy and paste the url anywhere you like. However, please ask me if you want to use any of my photos for any reason.

No comments:

Post a Comment


Template by BloggerCandy.com