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

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

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 ...
4 comments
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