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 had I known it would interfere with me going on the list!

But it makes sense that I need to be on Warfarin before I'm listed because obviously I could get a call the next day so it'd be pointless if I was still on apixiban. So I continue to wait for the wait hah. People say that being on the waiting list is hard but this part is definitely harder! At least once I'm on the list I might get the call!

Any hoo, I thought I'd share some info on transplant seen as I don't have any other news. I'd imagine some people wonder what happens to them when they die when they're an organ donor. So there are 2 types of death, circulatory death (when your heart stops beating) and brain stem death (when you're brain dead but your heart is still beating due to machinery and drugs AKA life support).

DBD donation (brain death)

I am not a medical professional but this is my understanding of what happens during transplant, based on what I have been told and the research I have done. 

If you are in an accident or are unwell, the doctors and medical team will always do everything they can to save you, organ donation is only considered once the medical staff and your family have decided there is nothing more they can do. So for example, if you have a stroke you would be an ideal candidate to donate your heart, however the drugs that are used to try and save your brain damage your heart. Saving you is always the priority. People can only donate their organs if they die in hospital, this is because you need to have oxygen pumping to your organs to keep them alive. Breath death requires very strict tests to be carried out before surgeons and doctors decide that there is no brain activity and these tests must be carried out twice by two senior medical staff.

So when the doctors and the family have decided that you won't make it once you're taken off life support they start to discuss donating your organs. The ideal scenario is that your family know what you're wishes are (in my case you can take whatever you want and cremate the rest). Sadly, there are times where someone may be on the donation register but the family can argue that they don't think that's what you'd want and this can be a really stressful time for families, especially on top of losing a loved one. The decision ultimately rests with you but the family are considered in the decision. In the case that the family bravely agree to donate their loved ones organs people on the waiting list will be allocated organs, so an example would be that someone has had a huge bleed on the brain but their other organs are still young and healthy. There may be someone in Glasgow that needs a kidney, someone in Manchester that needs a heart and someone in Cambridge that needs some lungs. These recipients will be contacted and make their way to the hospital where they'll have a chest X ray, blood tests etc to make sure there's no new medical conditions and they're still fit for surgery. The hospital where the donor is then needs to liaise to get the doctors from different hospitals all into the operating theatre at the same time and the donor will be taken off life support (the heart will still be beating) and the organ harvesting begins. The heart will then be cooled to a temperature where the heart can then be transported to Wythenshawe. It is important that the recipient is ready for their operation before the donor is taken off life support and has their organs taken out, because once they're out of the body they have a limited period of time to transport the organs and get them into the recipient.

So I will be ready in the hospital maybe even with some IV lines in ready for my op before the surgeon has even seen the heart. Ideally I will then have my op, but occasionally the heart is looked at by the surgeon and they decide that the heart is damaged or isn't suitable to be transplanted and I will go home disappointed. They will aim not put me to sleep until they know that the heart is good to go and I am being transplanted but I might be in theatre ready to go to sleep, so I imagine it'll be quite stressful.

DCD donation (Circulatory death)

Originally when transplantation began, brain death was not understood and transplants only took place once the patients heart had stopped beating. Due to the lack of organs being available for donation in UK DCD transplants are now being looked at again and multiple transplants have taken place successfully already.

Wythenshawe only accept donors with a maximum age of 40 for DCD transplants where as DBD the max age is 65. So one advantage of DCD transplant is that you'd get a younger donor. Although Papworth hospital have now raised their age as they've had so many successful transplants.

So the process is nearly the same as DBD donation, but in this case the donor would not be brain dead (although they'd be kept alive by machinery and drugs) but they would have no hope of recovery. Again the decision to withdraw care would be made by the family and the doctors. If the family decide to withdraw care and they want to donate their loved ones organs, the donor is taken to a quiet room near the operating theatre and the machinery will be switched off. Once this happens the heart may stop beating and the donor will be pronounced dead, they will then be transferred to the operating room and retrieval will begin as normal.

In this type of transplantation a machine called an OCS (TransMedics Organ Care System) is used, the heart will be placed in it with some of the donors blood and the heart will be restarted and pump within the machine. The heart will then be reassessed by the surgeon (the machine can also show some data on the function of the heart) and the heart will be transferred to Wythenshawe where I'd be sat waiting patiently.

The disadvantage of DCD is that the heart is stopped for up to 15 minutes and the heart may be temporarily impaired, but we know from heart attacks that the heart can tolerate this. Kidneys, livers and lungs have been routinely transplanted using DCD for the last 10 years. An advantage of DCD is that I would be on two lists, the normal waiting list and the DCD waiting list (which will probably be slightly shorter as not everyone wants a DCD transplant.

Please contact me if you have any questions! And I'll update you once I'm officially on the list, hopefully it won't be too much longer!

Here's a couple of links if you'd like to read more:

http://bts.org.uk/wp-content/uploads/2016/09/15_BTS_Donors_DCD.pdf

https://www.organdonation.nhs.uk/supporting-my-decision/myth-busting/