Skip to main content

Transplant Assessment Day 3

Friday

Hello all!

Feeling a bit deflated today. I'm sad to say goodbye to the ward, although over the moon to be home, showered and watching Peaky Blinders with a takeout! So I won't be discussed in the MDT meeting on Friday because I have a problem in my liver, the doctors think it's just a group of benign blood vessels but they have to do an MRI to check before they can discuss my results properly. So on the plus side I can put it all to the back off my mind until after Christmas, but I hate waiting, I'd rather know!

Today I was just on the ward for the day, I had to finish my 24 hour urine collection (sorry TMI) before I could go home so I just spent the day packing up my things and chatting with the nurses and the ladies on my ward. Then I had a really long chat with one of the transplant coordinators who was lovely and had so much information. I have a few consent forms to read and sign about sharing my information, a certain type of organ harvesting and a few others. 

So main info from today... I can go to my dad's wedding! Even if I'm listed I can basically say that I'm going out of the country for a few days and they'll take me off it for those few days, they don't want you to feel guilty if you get a call while you're away and you can't get home. I am A positive which means I can receive O organs and A organs which is good! Once I'm listed I'll have to switch my blood thinner to Warfarin which is annoying (you have to have your blood tested all the time) because there's no reverse for Apixiban and if I went in for surgery they need to be able to reverse it. She explained about the transplant process, finding out about your donor, high risk donors, what happens when you get the call, drugs etc. but I'll go into detail another time as I'm tired right now!

I need to be more thorough in listening to my body and telling the hospital when things are getting worse. Things have gotten a lot harder for me to do over the last few months and I get tired and out of breath just making the bed but I know I'm going to get worse so that doesn't seem alarming to me, but she said it's important for me to let them know so they can assess me. The good thing is that if I'm not listed I don't have to have another assessment, I just have to have a right heart catheter (angiogram, turns out they're the same thing) every 6 months and I'd have to go to clinic every three months. 

I also have to take an extra fuersomide (which means I'll need a wee all day rather than until midday), my fluid pressure in my veins is too high and this is bad for my kidneys, but fuerosomide is also bad for your kidneys. So Dr Shaw explained that I have to get the balance right by taking two tablets and drinking around 1.5 litres of fluid. 

So I got a lot of information today, a lot to process, but I need to get this stupid university essay done and then I can fully process it! Haha. Thank you again for your amazing support, my last blog post has had 1120 readers so far! I'm so glad I can help people understand more about organ donation in a realistic sense rather than what you see on TV, and please ask any questions you may have either as a comment or contact me privately :)











Comments

  1. Unknown30 January 2018 at 20:05

    A very successful way to treat tributary veins, spider veins or even superficial varicose veins, however often patients with the above also have saphenous vein reflux. If a patient has unsuccessful or recurrence after sclerotherapy an ultrasound should be performed by a vascular and vein specialists to determine if there is indeed a deeper problem. Great blog vein doctor new jersey

    ReplyDelete

Post a Comment

Popular posts from this blog

5 years of being a heart transplant recipient

I wrote this post 3 years ago and it just sat here as my blog wasn't live, but I wrote it to process my feelings around hitting such a huge milestone, it's obviously now out of date but I decided to just post it as is! The blog is back. It might be a one off, I might stay consistent, who knows. As I often say 'life has a plan but we'll never know what it is'. I'm not quite 5 years post transplant, my anniversary is 27th Feb 2023 but the countdown to this anniversary has been going on for months now. Every year feels like a big deal but this anniversary feels like a huge deal and I'm not fully sure why. A lot has happened since I was 21 and put on that transplant waiting list, in fact, looking back is like watching a film about a girl I kind of know but not very well. I have a scar down the centre of my chest to remind me of what I've been through, but even that has faded to a point where I don't even notice it.  So my emotions have been quite mixed r...
Post a Comment
Read more

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...
4 comments
Read more

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...
6 comments
Read more