Want to see what I've been reading?

[laura_dropstitch]

Hello, everyone. Many of you will already know that I'm about to undertake a PhD, looking at representations of chronic heart disease in post-1980 literature. I was lucky enough to receive funding for the next three years from Wellcome Trust, which is super exciting - for me personally, but also in terms of showing that the big guns believe that chronic heart disease is a topic worthy of further investigation and attention.

I don't start my PhD "officially" for another couple of weeks, but I'm already up and running behind the scenes and have been sharing my heart-related reads on my dedicated Twitter account - twitter.com/_Laura_Donald - if any of you are interested in keeping track. Eventually I'm hoping to involve as many (willing!) participants from the hearty community as possible, so will be setting up more dedicated social media (Facebook, blog, etc.) as the project progresses and even, hopefully, meeting with some of you?! But in the meantime, I'm reading and reading and reading books that feature heart disease and sharing some quotes and my own responses on my Twitter account. Would love to hear your responses and opinions too (whether you are a big reader or not) so please do come on over to Twitter and get involved, and you can be sure that I'll keep you all posted on how the project is progressing/how you can take part! Looking forward to hearing from some of you soon

[MichaelJH Heart Star]

What in? Mine is in IT! 🎓

[laura_dropstitch Heart Star]

Good luck with your masters! Just started watching Mindhunter so it sounds good to me! 😂

[MichaelJH Heart Star]

The hero of Nevil Shute's book "Pied Piper" is a widower with a heart condition. Nevil Shute died of a heart attack aged 61. Is this the kind of reference you are looking for?

[laura_dropstitch Heart Star in reply to MichaelJH]

Thank you! Always looking for references, yes. From memory, I think that one was too early for my post-1980 time frame but I'll check again.

[MichaelJH Heart Star in reply to laura_dropstitch]

I can remember if Philip Roth's Everyman features heart disease in the (anti) hero's physical decline as he ages. A good read but slightly disturbing!

[laura_dropstitch Heart Star in reply to MichaelJH]

Read that last week actually. LOVED IT!

[MichaelJH Heart Star in reply to laura_dropstitch]

Did he have heart disease?

[laura_dropstitch Heart Star in reply to MichaelJH]

I know his cause of death is listed as heart failure but he hadn't been ill long-term as far as I know? Many of his books are about illness and dying - a topic that fascinated him even when his health was good. Nemesis (about a polio outbreak in the 1940s) is another excellent book...if you like that sort of thing!

[Lezzers]

I don't do twitter Laura but good luck with your research & PhD

[MichaelJH Heart Star in reply to Lezzers]

No FaceAche or Tweets here either!

[Lezzers in reply to MichaelJH]

Yay

[Lezzers]

That's just criminal!!

[Heartlady1]

Brilliant news. You are an inspiration.. and it's great to know that "one of us" is doing this research.. I am sure it will be enlightening and I hope the medical profession use it once you have completed your study... go you girl!!!

[laura_dropstitch Heart Star in reply to Heartlady1]

Thank you 😘

[laura_dropstitch Heart Star]

I'm still putting off joining Facebook for the same reasons! You can still LOOK at Twitter without having an account, I'm fairly sure 😉

[Milkfairy Heart Star]

Hi Laura

Fantastic, I am in awe that you can read that much!

I am following you on Twitter looking forward to following you on your PhD journey!

[laura_dropstitch Heart Star in reply to Milkfairy]

Reading for my full-time job at the moment...and loving it! Thanks for following x

[laura_dropstitch Heart Star]

Exactly! So much better that he knows already and can minimise the risks. And so great that you two are back in touch.

Once I'm set up on Facebook, I'll expect to hear from you regularly!

[MissisF in reply to laura_dropstitch]

Once on FB you can join all the heart related groups & see real stories and ... like Twitter, you don’t have to post if you don’t want to. Good Luck...PhD not for the faint hearted 😂

[laura_dropstitch Heart Star in reply to MissisF]

Thanks! I'm just so excited to be challenging myself - first big adventure since having my daughter and getting heart failure. Feels good! It's essentially my full-time job for the next three years so I'm making the most of having a job I'm really passionate about. Also enjoying the feeling of dusty parts of my brain waking up once again

[Henry20]

May I gently suggest that your target audience includes the elderly, many of whom won't have social media accounts. Your research will therefore have a bias unless you reach non-social media types by other means - just a thought ...

[laura_dropstitch Heart Star in reply to Henry20]

Don't worry, I'm on it! Thanks for the tip

[Glasgowgirl1947 in reply to laura_dropstitch]

Does 72 count as elderly? I had my Mitral valve and tricuspid vale repaired in March. I had to have an external pacemaker for a week while I was in hospital but eventually, my heart settled and I was discharged. My op was done keyhole but I've been left with quite a severe nerve damage in both my legs, I had 2 cuts in my groin and in my right breast. I had a mastectomy on my left side 30 years ago so am going this afternoon to request a referral for a mammogram just to confirm that the pain is nerve damage nothing sinister. I saw the cardio consultant last week and he said he would, I think, write to my doctor to arrange a referral to the pain clinic it's about 12 years since I was referred to them due to severe nerve damage 2 years after a knee replacement which went wrong! I would be glad to help you if you think I can x

[laura_dropstitch Heart Star in reply to Glasgowgirl1947]

Thank you, I will definitely be looking for contributors as the project progresses and would be delighted for you to be one of them. I hope all goes smoothly with mammogram referral and that you get some relief from the pain soon.

[Twobells]

Wow go girl and yes any help you need just ask.

Hope you are OK

X

[laura_dropstitch Heart Star in reply to Twobells]

Thank you! All good with me now that I'm beginning to tolerate my recent increase in meds. Hope you are doing well too x

[dunestar]

Hi Laura. Totally fascinated by your project. I read a bit of sci fi stuff. Would be interested to see how we imagine heart disease will be looked at in the future. Would post 1980 stretch into galaxies far far away? Will follow you on Twitter. Good luck with the project.

[laura_dropstitch Heart Star in reply to dunestar]

My main supervisor actually specialises in medical sci-fi, so wouldn't be surprised if I did stray into that territory somewhere down the line. Not read any hearty sci-fi so far (let me know if you know of any) but I have read a futuristic medical horror - Pacemaker by Linda Brieno. It was a very entertaining read for me but probably wouldn't recommend it to anyone else, especially if you are a sophisticated sci-fi buff!

[benjijen]

Good luck. I hope you will mainly look at Controlled trials as opposed to observational. I look forward to your results.

[sandrann]

YAY 😁

Good for you Laura, enjoy every moment of your new full time job, you know the old saying...if your work is doing what you enjoy then you are never working... sounds good to me... looking forward to following you on FB when you have a page Laura.

Yay 😁

[laura_dropstitch Heart Star in reply to sandrann]

Thank you! X

[Frequentshocker]

Hi Laura. Im fairly new to this site and just seen your posts. It sounds great and Im just responding to see how your research is going. Youve probably had plenty of willing assistance on the subject now but Im happy to help too. Also on fb but resisted twitter so far or my extremely limited amount of daily energy will be used up online! I presume by now any further research will be very focused on specifics but it would be nice to hear how its going. Juggling studies with a toddler is not so easy either! All the best

[laura_dropstitch Heart Star in reply to Frequentshocker]

Hello, great to hear from you Well, research has been disjointed and interrupted mainly - ha! - so I'm probably not as much into the specifics as you would imagine. I'm just coming to the end of five months off, actually, following a very stop-start first year. But other than life getting in the way, the project is going well.

I never did set up a Facebook account, but there is a project blog including lots of creative contributions from other people, many of them regulars on this site. We were writing heart-themed haiku each month but that was put on hold while I had time off. Hoping to start it up again soon though and would be great if you wanted to contribute! I do need to get into the nitty-gritty of writing a thesis soon but I am determined not to let patient involvement slide. I'd be quite keen to set up some sort of heart-related online book group at some point if that is something you would be interested in? Not at that stage yet (and feeling quite overwhelmed with getting the project up and running again) but will share on the blog/twitter/this site if and when I do get approval for that. Do keep in touch!

You can find the blog at heartytales.co.uk and there are all sorts of fun art projects and people's creative writing in the Creative Resources tab.

[Frequentshocker in reply to laura_dropstitch]

Hi, thank you for getting back to me. Yes Id be interested in your group as I am always interested in finding out more about my heaet and possible causes and remedies. Im a firm believer in natures cures too and diet is behind so many illnesses so a lot of things are actually preventable. However, now I've had my sudden cardiac arrests life has changed considerably and I still don't know yet why I'm always so tired, is it my heart and why, or is it the meds and am I destined to live like this for the rest of my days or can I get back to normal pre cardiac energy and live a little more? Do feel free to recommend any articles or books on the subject, theres a lot of people out here with the same dilema! Meanwhile my usual mediterranean based diet is switched to a stricter routine and I am trying to walk daily, having started again from lockdown couch potato pace and hooray, lost 3lbs in two weeks of walking 30 mins slow to steady pace daily. Its a start as my bp went up and cholestrol raised too after an exercise free year, and my angina complained regularly. Im hoping to increase my walking speed and distance gradually but not sure how much I should push myself when so breathless or chest pains start. Is it best to stop and rest or to continue a bit more? Im amazed at how little I know about the heart system but on here its good to know Im not the only one going through it. And good to know people like you are studying it and coming up with more information too!Thanks again!

[laura_dropstitch Heart Star in reply to Frequentshocker]

I'm afraid I'm not someone who can really help with the medical side of things, other than to say - yes, I know exactly what you mean from my own experience! (I'm also struggling to lose weight and regain some fitness after a year indoors, and I also get very tired and question whether it's due to my heart or the meds to treat my heart. Frustrating!) My research is all about how to tell stories about those experiences, so it's more about communicating what it's like to go through those symptoms and frustrations, and looking at whether published stories reflect these experiences and, if not, why not and does that pose a problem/affect public understanding of heart conditions/make life harder for those experiencing heart disease.

So great that you're seeing progress from your walking already. Can be so hard to stay motivated when you're not able to really push yourself. I wonder if you would be eligible for any sort of cardiac rehab programme? I know they are widening the range of conditions that qualify. I haven't ever done it, but I know lots of folks here have and found it very helpful, specifically with knowing how hard you can safely push yourself. Might be worth investigating? Good luck!

[Frequentshocker in reply to laura_dropstitch]

Thank you. Ive only seen the Cardiac rehab programme mentiomed on here, I hadnt heard of it and intend to ask about it next month when I go back for more tests. I emailed my consultant to ask if we can do anything about the fatigue so she is doing and echocardiogram and checking my recordings. I still havent got my driving licence approved yet as every time I reapplied Id have another shock and another 6 mth ban so last time the consultant said lets give the Quinedine a go and see if it stabilises over the year. Im hoping after testing they will allow consent to drive and maybe tell me whats causing the fatigue as it started on the Bisoprolol and I had relief once off it each time. I just seem to be back there now without those draining meds. After reading on here Ive asked my doctor to check my thyroid too. I did read somewhere that standard blood tests dont always pick up the problems so will try to find out more. It definitely seems to need teamwork incl much research ourselves. I do find the walking has helped a lot already although yesterday I had no energy to get dressed and slept all day and all night too. Its like having a limited quota of energy per dayand I mustve used it all up walking all week and ran out. It'll be a real effort today but I dont want to stop and suffer the usual. Ive never slept so well at nights til recently so its a good result and will hopefully get me into a routine for returning to work again after lockdown.I dont know how you have the energy to cope with a young family and a heart condition! One or the other is so exhausting! I took another degree when my son started school, it was great but so tiring fitting everything in as a single mum then but it gave me a much better life until I literally dropped dead one day! Luckily Id got my son off to uni by then but it was a complete shock. You feel stunned by it all and theres a lot of people having a bit of ptsd even years after it as it affects us mentally too. Still we are alive, the shock has also given us a second chance at it and Im so grateful there was someone around who knew how to do cpr at the time!