jimmyq5 years ago

I have read hundreds, possibly thousands, of books and never read about a character with heart disease.

laura_dropstitchHeart Star in reply to jimmyq5 years ago

Yep, they are hard to find, which is interesting in itself!

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Vonnieruth in reply to laura_dropstitch5 years ago

Eyes turned skyward by Rebecca Yarros. It's on good reads.

It's about a women who shares her dead sisters heart condition and is treated like delicate glass by her paren't sure. She is determined to fill her bucket wish though.

Hope it's helpful

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laura_dropstitchHeart Star in reply to Vonnieruth5 years ago

Thanks, Vonnieruth, will check it out! Let me know if you think of any others

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NathanBlau in reply to laura_dropstitch5 years ago

ncbi.nlm.nih.gov/pubmed/259...

I found found this a very interesting point - seems to be a number references online. See the link here for example.

Would love to see where this research takes you

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laura_dropstitchHeart Star in reply to NathanBlau5 years ago

Brilliant, thank you, will add this to my reading list. I'm just getting my proposal ready for funding applications at the moment, so it's very early days, but I imagine I'll be picking the forum's collective brain fairly regularly! If I get funding (or win the lottery, both equally likely probably 😬) I'll start PhD in 2019. Really enjoying all my reading so far, which bodes well! Thanks again

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Vonnieruth5 years ago

Will do

MichaelJHHeart Star5 years ago

Neville Shire's "Pied Piper" is about an elderly windower with a heart condition recusing children during WWII.

MichaelJHHeart Star5 years ago

Girlfriend liked "Cold Hands, Warm Heart" by Jill Wolfson. About two girls with serious heart conditions.

laura_dropstitchHeart Star in reply to MichaelJH5 years ago

Thanks for those, Michael

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Heartlady15 years ago

Well done Laura for following your dreams and going down this path 😁 can you use any of the positive posts on here by us heart failure dudes who recognise how heart failure has lead to our greater appreciation of what matters in life? And are factual accounts too? Just a thought xx

laura_dropstitchHeart Star in reply to Heartlady15 years ago

I do plan to use the valuable resource that is this forum, but probably not until I actually start the PhD proper, which is still some way off. For now I just have to brag about how I have access to the valuable resource that is all you guys who will tell me anything I want to know! Thanks in advance for the many hours you will spend answering all my questions - ha ha! x

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mollmoll5 years ago

I think one of the sisters in Little Women has a heart condition

laura_dropstitchHeart Star in reply to mollmoll5 years ago

Yes, you're right! I had forgotten about that. Thank you

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Mary_Janet5 years ago

Brilliant idea Laura, try Jodi Picult " My sister's keeper "a really good story about a wee girl with I think heart failure and the effects on her family. A real tear jerked, there is also a film . Mary

laura_dropstitchHeart Star in reply to Mary_Janet5 years ago

Thanks!

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sandrann5 years ago

Wowee...good on you laura_dropstitch... looking forward to reading your progress...in the meantime I'll rack my brain for information you might find beneficial...

Keep on reading..hugs

laura_dropstitchHeart Star in reply to sandrann5 years ago

Thanks! 😊

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jim_5 years ago

Sounds an unusual and fascinating research. Who knows where it will take you. I will let you know if/when I recall or come across anything. Very good luck to you.

laura_dropstitchHeart Star in reply to jim_5 years ago

Thank you, Jim. I have no idea where it will take me either, but hopefully somewhere interesting

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Kaz7475 years ago

Check out drnikkistamp.com/ Nikki is a heart surgeon in my home town of Perth in Australia and has recently released a book. There have been a number of events promoting her book over the last few weeks but I haven't had the opportunity to attend as I haven't been well. She's breaking all the moulds when it comes to what you'd expect your heart surgeon to be. I'm looking forward to reading her book and hopefully I'll get to meet her too (hopefully at an event, not in an operating theatre). I recently saw an article about her online from the British media too.

Kaz7475 years ago

And congratulations on the PhD!

laura_dropstitchHeart Star in reply to Kaz7475 years ago

Awesome, thanks, will check that out

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MKB385 years ago

Best of luck Laura. X

laura_dropstitchHeart Star in reply to MKB385 years ago

Thank you! X

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wiltsgirl5 years ago

Hi Laura, my daughter is a student nurse and before she knew about my bypass surgery she had already bought Fragile Lives by Stephen Westaby. She says I should read it some time. Good luck with your ongoing adventures x

laura_dropstitchHeart Star in reply to wiltsgirl5 years ago

Thank you! X

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Mary_Janet in reply to wiltsgirl5 years ago

I was going to mention Fragile lives. This is a fascinating book which I very much enjoyed. It is a pioneering cardiac surgeon writing about some of his cases. I read it a few months post discharge when I was feeling sorry for myself and the book really helped remind me (as does this forum) that there are so many people worse off than me. The book is well written , it is quite graphic. I have to say I did squirm every time he discussed opening chests ! Would recommend but not for those who don't like medical books. It is more auto biographical than fiction. I think that you would enjoy it Laura.

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laura_dropstitchHeart Star in reply to Mary_Janet5 years ago

Thank you, Mary Janet Hope you are doing well x

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Prada474 years ago

Hi Lura

It may be worth posting on Pumping Marvellous asking the same question. If I can be of any help just shout .Is it close to Publishing !!

Go For It

laura_dropstitchHeart Star4 years ago

No, but it is close to finding out whether or not I've been awarded funding to START the thing! 😂

Prada47 in reply to laura_dropstitch4 years ago

Hi Laura,

Just tell the funding authority that you have recruited a few hundred Patients all willing to supply 1st hand experience of Heart failure and the Consequences of dealing with it.

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laura_dropstitchHeart Star in reply to Prada474 years ago

Believe me, I have! I'm feeling pretty positive that my idea is worthwhile and fundable but I know I'll be up against lots of other equally good ideas. So hopeful...but anxious! Thanks for the support

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MilkfairyHeart Star4 years ago

Laura I really hope you get the funding to do your PhD.

It would be so helpful to discuss this issue in depth.

I have a bit of a thing about language and how it is used by patients, Healthcare professionals, the public and charities.

This was reflected in a recent study of people living with cancer and they indicated that did not wish to be described as being courageous, battling and conquering their cancer.

It would be great if another term could be found to describe the condition when the heart muscle no longer pumps well......anything but heart failure.

Keeping my fingers and toes crossed for you!

laura_dropstitchHeart Star in reply to Milkfairy4 years ago

Thank you! My psychologist (he's based in the heart failure clinic I attend) actually wrote a paper on the very topic of "heart failure" as a term, though it's not been published anywhere yet. His research found the term provoked distress in patients and that most patients and practitioners would prefer a different name...but that it's unlikely to change. One really interesting fact was that the condition is not called heart failure in non-English speaking countries, but is called the equivalent/translation of cardiac impairment or cardiac insufficiency or cardiac malfunction. I think everyone goes through a horrible spell of terror and expectation of imminent death when they're told they have heart failure. I do feel that giving it a different name would help, but also raising awareness of the condition and the fact that people can live long and meaningful lives with it. Hopefully my PhD will help with that. I've got lots of public engagement planned and hope to shout about heart failure from the rooftops!

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Hidden in reply to laura_dropstitch4 years ago

Totally agree that the choice of wording does not inspire confidence in a long and happy life. Prefer Cardiac Impairment..

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MilkfairyHeart Star4 years ago

Hi Laura I have sent you a PM

Pommel4 years ago

Dear Laura, your project sounds fascinating and I hope it is going well, I hadn't seen this post before. When first diagnosed, a friend gave me a book called The Summer Book by Tove Jansson. I don't know if the main character really has heart failure or it was my paranoia (!) but it might be of interest to you! It is very well written but I couldn't finish it at the time as I started to relate too much to the character and felt depressed! X

laura_dropstitchHeart Star in reply to Pommel4 years ago

I think I have read The Summer Book... Is that the one about the child visiting a family holiday home/grandparents on a little group of islands? I didn't make any heart failure associations as far as I can remember, but I read it long before heart disease was on my radar. To be honest, I'd be very happy to reread it to find out - I really enjoyed it...and, as I do with most books I read, have forgotten most of it! Even if the character wasn't intentionally written as having heart failure, it's really interesting to me that you read it that way and that you found it difficult because you related to it. I might ask you a bit more about this at some point (over the next couple of years?!) if that's OK? Thank you for taking the time to reply!

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Pommel in reply to laura_dropstitch4 years ago

That's the book! I might try it again, I didn't want to read anything about my condition or join any groups like this when I was first diagnosed, scared of what I might read I guess ! So probably it was paranoia! But I'd be happy now to talk about it all so please feel free to get in touch again when you're ready. Best wishes

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laura_dropstitchHeart Star4 years ago

There's something about the Moomins that just fills me with happiness and comfort. As I type this reply, I'm lying in my daughter's bed staring at a huge Moomins poster before going upstairs to drink coffee from my Moomins mug. Go Moomins! 😊

Pommel4 years ago

I'll dig out the book and see if it really does sound like the grandmother has heart failure!