Hello internet friends!
I have received so much positive feedback about my blog and it really means the world! My aim is to have something out there for people that hear that they need a transplant and don't know what this means for their lives but also for families. I want to educate the general public and to show that normal looking people need this life saving operation, it's not just for people that look really ill and you shouldn't judge people looking at the outside of them!
I want to spread the word about CRY and for young people to go and have their hearts checked, but also for these heart screenings to be more widely available, did you know that 80% of young people that die from sudden cardiac death don't have any symptoms before death!
So recently, I've been a bit MIA while I've been writing one of my essays for uni and it's finally handed in now! So I've taken a couple of days off to do some things for myself and spend some time with Ciaran and friends and family. Including having the doggie Poppy over for a sleepover on Saturday 22.01.18! But this week has also been very exciting in terms of spreading the news about my blog and also helping out in the medical community. On Monday 22.01.18 I was sent an email from the press office at CRY saying that they'd seen my blog and they'd like to do a press release about me and my experience with the screenings which is really exciting! I am so grateful to CRY and the fact that I was able to have a second option when I was fobbed off by the GP so I will do all I can to spread awareness for them! So I need to send in a couple of photos and then the press release will be sent out to all of her contacts at various news stations.
Also this week 25.01.18 I was filmed for a video for doctors. So a company called Pastest make revision tools for doctors that are about to sit their exams and they need patients to examine on video so that GPs know what initial things to check for, in my case, when someone comes in with a reduced exercise tolerance. All I had to do was lie on the bed and the doctor examined me, but it was really good because I don't have any of the visible signs that they look for and it's so important for doctors to know that and send people for extra tests rather than just calling it a day! It was in a proper filming studio and it was so hot under the lights!! But that was nice actually, I was scared it'd be cold haha.
In other news, I'm still not on the transplant waiting list. I've been to the Warfarin Clinic twice now and my bloods still aren't high enough to be able to stop taking Apixiban. For anyone who doesn't quite understand this, Warfarin has a reverse agent and Apixiban doesn't. Therefore, if I were to go on the list and get a call tomorrow to go for my op I would have a huge bleeding risk because they cannot reverse Apixiban. So it would be pointless being on the list right now because I couldn't have the op if I got a call, I'm at the clinic this afternoon and I've been on a higher dose of Warfarin for the last week so fingers crossed I'll come off Apixiban today! And then I have to wait 7 days before I can be listed, so next Friday I would go on the list. When that happens it's just a case of the hospital phoning me and getting me listed, I don't have to go in, because I've already signed all my consent forms ready! I also have my MRI on my liver tomorrow 27.01.18 and they'll have the results of that when I speak to them on Monday, so I'm praying that nothing comes up on that!
My prayer list is pretty full this week, there's a lady that I know from the transplant group that had her transplant recently and she's sedated still but she's off life support and opens her eyes to see her family which is amazing! So I'm thinking of her and her family a lot and also the family of her donor that have lost a loved one.
I had a letter this week to say that I have been rejected for any PIP again (personal independent payment, benefits for disabled or permanently sick people, used to be DLA). Which means that I now need to appeal it, which means going to a tribunal and fighting my case. The good news is that it is doctors and a judge that do the hearing and that means they'll have a much better idea of my struggles than the DWP do! But it's sad because so many people don't have the support or resources that I do to be able to appeal and would just drop their case, which is why DWP do it I believe. So fingers crossed for that!
Also, I had a couple of complaints last time that my blog was too complicated! So I'll try and cut down on the medical stuff, or should I keep it in and people can just skip through it? I forget that things aren't common knowledge just because I'm so used to being at the hospital so much haha. But I do have a couple of nurses that read my blog so I might keep it in, we'll see!
This is the link by the way to book onto a cry screening, if you are between 14 and 35 go and have your heart checked! https://www.testmyheart.org.uk/
Have a great week everyone!
I have received so much positive feedback about my blog and it really means the world! My aim is to have something out there for people that hear that they need a transplant and don't know what this means for their lives but also for families. I want to educate the general public and to show that normal looking people need this life saving operation, it's not just for people that look really ill and you shouldn't judge people looking at the outside of them!
I want to spread the word about CRY and for young people to go and have their hearts checked, but also for these heart screenings to be more widely available, did you know that 80% of young people that die from sudden cardiac death don't have any symptoms before death!
So recently, I've been a bit MIA while I've been writing one of my essays for uni and it's finally handed in now! So I've taken a couple of days off to do some things for myself and spend some time with Ciaran and friends and family. Including having the doggie Poppy over for a sleepover on Saturday 22.01.18! But this week has also been very exciting in terms of spreading the news about my blog and also helping out in the medical community. On Monday 22.01.18 I was sent an email from the press office at CRY saying that they'd seen my blog and they'd like to do a press release about me and my experience with the screenings which is really exciting! I am so grateful to CRY and the fact that I was able to have a second option when I was fobbed off by the GP so I will do all I can to spread awareness for them! So I need to send in a couple of photos and then the press release will be sent out to all of her contacts at various news stations.
Also this week 25.01.18 I was filmed for a video for doctors. So a company called Pastest make revision tools for doctors that are about to sit their exams and they need patients to examine on video so that GPs know what initial things to check for, in my case, when someone comes in with a reduced exercise tolerance. All I had to do was lie on the bed and the doctor examined me, but it was really good because I don't have any of the visible signs that they look for and it's so important for doctors to know that and send people for extra tests rather than just calling it a day! It was in a proper filming studio and it was so hot under the lights!! But that was nice actually, I was scared it'd be cold haha.
In other news, I'm still not on the transplant waiting list. I've been to the Warfarin Clinic twice now and my bloods still aren't high enough to be able to stop taking Apixiban. For anyone who doesn't quite understand this, Warfarin has a reverse agent and Apixiban doesn't. Therefore, if I were to go on the list and get a call tomorrow to go for my op I would have a huge bleeding risk because they cannot reverse Apixiban. So it would be pointless being on the list right now because I couldn't have the op if I got a call, I'm at the clinic this afternoon and I've been on a higher dose of Warfarin for the last week so fingers crossed I'll come off Apixiban today! And then I have to wait 7 days before I can be listed, so next Friday I would go on the list. When that happens it's just a case of the hospital phoning me and getting me listed, I don't have to go in, because I've already signed all my consent forms ready! I also have my MRI on my liver tomorrow 27.01.18 and they'll have the results of that when I speak to them on Monday, so I'm praying that nothing comes up on that!
My prayer list is pretty full this week, there's a lady that I know from the transplant group that had her transplant recently and she's sedated still but she's off life support and opens her eyes to see her family which is amazing! So I'm thinking of her and her family a lot and also the family of her donor that have lost a loved one.
I had a letter this week to say that I have been rejected for any PIP again (personal independent payment, benefits for disabled or permanently sick people, used to be DLA). Which means that I now need to appeal it, which means going to a tribunal and fighting my case. The good news is that it is doctors and a judge that do the hearing and that means they'll have a much better idea of my struggles than the DWP do! But it's sad because so many people don't have the support or resources that I do to be able to appeal and would just drop their case, which is why DWP do it I believe. So fingers crossed for that!
Also, I had a couple of complaints last time that my blog was too complicated! So I'll try and cut down on the medical stuff, or should I keep it in and people can just skip through it? I forget that things aren't common knowledge just because I'm so used to being at the hospital so much haha. But I do have a couple of nurses that read my blog so I might keep it in, we'll see!
This is the link by the way to book onto a cry screening, if you are between 14 and 35 go and have your heart checked! https://www.testmyheart.org.uk/
Have a great week everyone!
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