My Recent Posts...

No movement...


This is a painting by Wassily Kandinsky called Movement. It made me think of what my brain feels like while I’m waiting for things to happen with my transplant assessment, although there is no movement with that yet.

I’m still waiting for the angiogram I need to have before proceeding further along the transplant pathway. My new GP has referred me and I now have a cardiology appointment at the end of June so I’m left in a bit of limbo until then. I’ve been referred for Pulmonary Rehabilitation so I hope to be able to go on that and build up some muscle strength. I now have another 5 kilos of weight so I’m sure I could turn some of that to muscle.

Assuming the angiogram is ok I have the three day assessment to get through which is described (from Papworth) below:

You'll need to stay in hospital for up to three days for a lung transplant assessment.

Tests will be carried out to make sure your other major organs, such as your heart, kidneys and liver, will function properly after the transplant. These may include blood tests and any of the following investigations:

• a chest X-ray

• an echocardiogram – to check how well your heart is pumping

• an electrocardiogram (ECG) – which records your heart's electrical activity

• an angiogram – a type of X-ray that can be used to check the blood flow in the blood vessels of your lungs

During the assessment, you'll be able to meet members of the transplant team and ask questions. Your transplant team will include:

• surgeons

• anaesthetists

• intensive care specialists

• lung specialists

• specialists in infection

• a transplant nurse

• physiotherapists

• psychologists

• social workers

• a transplant co-ordinator

The transplant co-ordinator will be your main point of contact. They'll talk to you and your family about what happens during a lung transplant and the risks involved.

After the assessment is complete, a decision will be made as to whether a lung transplant is suitable for you and whether it's the best option.

It may be decided that:

• you should go on the active waiting list – which means you could be called for a transplant at any time

• a transplant is suitable for you, but your condition isn't severe enough – you'll be reviewed regularly and if your condition worsens, you'll be put on the active waiting list

• you need more investigations or treatment before a decision can be made

• a transplant isn't suitable for you – the assessment team will explain why and offer alternatives, such as medication or other surgery

• you need a second opinion from a different transplant centre

So there is uncertainty over what will happen which is frustrating but I suppose there is no certainty about any of the outcomes. My head will stay like the Kandinsky so I'll try to create some order by concentrating on nesting in the our house, which is important regardless of what happens; more on that next week.

Blog visits & counting...