Skip to main content

Life update 20/02/18


Hello all!

I've been feeling a bit more normal recently, I have to remind myself that I have to take rest days and I can't do everything that I want to do! I have handed in another essay for uni this week which means I only have one left for next week! And then I have had two deferred until August so I can start on them and get them out of the way.

I've been planning the hen do for my dad's girlfriend which is lots of fun! It's the only time that I've wished I can have an alcoholic drink since I've been ill! It'll still be so much fun though and I just have to remind myself that I'll have to sleep in the day so I can go out at night, even though I hate being left out of the daytime activities!

I've decided not to go to the Brighton half marathon now. I really want to and I'm upset that I can't go but I know I'll be shattered when I get back. Ordinarily that would be okay but because I have my essay due in on wednesday when I get back, I don't have time to sleep for two days after the trip!

I have also applied for my PIP appeal now, I have to go to a tribunal to fight my case. I know that I am entitled to PIP (disability benefit) but I don't recieve any. So I have been collecting letters from various people including university and my social worker at the hospital, they've provided me with evidence of the daily struggles that I have. It could be 6 months before I get a hearing date though! It depends how many cases are going through the tribunal court so hopefully it's not too long!

Also, I thought I'd share with you all an important date! Friday 23rd February, this friday, the opt-out vote is going through parliment. An opt-out system would mean that everyone would be on the organ donation register and if you didn't want to be you could fill out a form to take yourself off it. This is so important for the people that have just never thought about donating their organs (I don't think most young people have) and it's hoped that it will increase the amount of organs available! So I wrote to our local MP this week, Mike Anesbury, I should have got my letter in sooner so I hope he sees it in time! But just to tell him a bit about transplant and why this vote is so important. If anyone would like to join me, you can email your local MP to find out if they are attending the vote and what their views are :)

I've had some amazing comments since being in Daily Mail and Manchester Evening News, thank you to everyone that follows my story and has signed the register or just if you've read one blog post!

Comments

Popular posts from this blog

6 Month Checkup at Liverpool

November 17th 2017 Today I was at Liverpool Heart and Chest Hospital for my 6 month follow up. I had an ECG, an Echocardiogram, and then I went to see Dr Todd. My ECG today shows that my ventricles are starting to struggle more and can't get as much oxygen around. A CT scan that I had done while I was admitted in August shows that I have enlarged lymph nodes in my chest. I've done a bit of googling and there are a few things that can cause enlarged lymph nodes in the chest including sarcoidosis and an infection. The doctors had a discussion and they think I should have them biopsied to check they're nothing scary. They're pretty confident that they're only swollen because of my heart but they have to tell the transplant team about it in case they want to investigate.  I had my DNA tested a while ago (it takes about 4 months to come back) so today I saw the genetics lady at Liverpool, Dr Mckay. She said they've found a faulty gene in me, so my mum and dad ne...

Surgeon Visit!

Hello again! Monday 18th I was back at Wythenshawe transplant outpatients to meet my surgeon Mr Venkat, there are 5 transplant surgeons so it may not be him that does my actual surgery but he is one of them and he met with me to explain further about the transplant surgery. I asked if I could record the meeting and he said that was fine, and it's a good job because he told us a lot of stuff that I can't remember already! So, first I had my bloods done, they redo one of the blood typing ones to double check that it's right and just some normal bloods like the heart failure measure BNP. So, Mr Venkat began by asking me about my daily life, things that I now struggle doing like making the bed, I don't go out of my house much and I get a tight chest when I'm not even exercising. Then he went through my three main tests. So, he firstly showed me my echocardiogram which shows that my atrium are huge! The ventricles are the muscular pumping chambers of the heart ...

Still not listed!

Friday 5th Jan 2017 I spoke to Ruth on the phone this afternoon to find out if I'm being listed and I have to wait until I've switched to Warfarin! So currently I take Apixaban (anticoagulant) because I had a blood clot in my heart, and I still take it to prevent getting another one and possibly having a stroke. Apixiban is a newer version of anticoagulant so it's a fixed dose whereas Warfarin you have to have the INR in your blood monitored and they adjust your dose and it can also be affected by certain foods. Warfarin works by blocking Vitamin K which is what clots your blood, so if you ever had an emergency operation they would give you Vitamin K to reverse the effect of Warfarin. However, there is no reversing agent for Apixaban so because I know I'll be having an operation at some point they will put be on Warfarin to ensure there's a reverse agent. This is annoying because I already knew I needed to switch to Warfarin and I could have done it weeks ago h...