Monday, August 29, 2011

It's the final countdown

This is a little glimpse of the final step.... the blood test slip for tissue typing.

It's the final step in the process this Wednesday morning. So, by Wednesday night I'll be on the active waiting list for a double lung transplant.

So many things to think about.
So many things to plan.
So many things to organise.

I'm a bit of a control freak, so it's going to be difficult to NOT be in control of what happens in the future.

Two sleeps...

Friday, August 19, 2011

Very nearly there....

After the extra week delay, I headed back to the Alfred yesterday to find out whether I was accepted onto the waiting list.

The good news is that I will be on the waiting list very soon... but there were some anomalies in my original blood tests so I had to have them taken again while I was there yesterday.

The original tests were:
Hepatitis B surface antibody, surface antigen and core antibody, HepC, HIV1&2,
CMV IgG, EBV JgG ,Herpes Zoster IgG (discuss with consultant if patient on
Intragram therapy)

Did you notice at the bottom there, it specifies to discuss with consultant if patient on Intragam therapy?

With the anitbody tests, they're trying to determine whether I've been exposed to any of these viruses. When you're exposed to a virus, your blood will make antibodies against it to protect you..... well that is, unless you have panhypogammagobulinemia like me.

Over the years, I've probably had close to 150 infusions of intragam, and each infusion contains antibodies from a pool of thousands of blood donors.

So, even though I haven't really been exposed to any of these viruses, my blood is giving confusing results.

The other very interesting thing that I learned yesterday is that once you're on the active waiting list, bloods are taken every month and sent off all around Australia, so that when a donor is found, the tissue matching can take place immediately.

They're going to consult with my immunologist on how to time the four weekly bloods and my three weekly intragam infusions to prevent a confusing result.

I've signed the consent form for the transplant surgery, and now I'm just waiting for the new blood test results to come back, and then I go back and sign some more forms, and join the actual active waiting list.

I should have more news very soon.

Thursday, August 11, 2011

A slight delay.... and a good news story

Today was supposed to be D-Day.

I had an appointment scheduled for 2PM to find out whether I was an acceptable candidate for transplant, but there has been a slight delay in my case being presented to the medical panel.
I've been re-scheduled for next Thursday 18th August at 2PM.

Seven more sleeps (not that I'm counting).

But in good news, there has been a media release this week detailing the increase in donation rates this year, which is wonderful news for anyone waiting for a transplant.

As at end July 2011, the Australia and New Zealand Organ Donation Registry (ANZOD) shows that there were 201 organ donors compared to 174 organ donors for the same period in 2010 representing a 16% increase. This year to date, the number of transplant recipients has increased to 593 transplant recipients compared to 526 for the same period in 2010 representing a 13% increase this year.

President of the Transplantation Society of Australia and New Zealand (TSANZ), Professor Peter MacDonald welcomed the July 2011 figures. “TSANZ is encouraged by the continuing increase in the national organ donation rate and the increased transplant activity that this makes possible,” Professor MacDonald said.

Transplant Australia said more people than ever before are now receiving a transplant and this is reflected in the overall official waiting list reducing from 1,875 on 3 January 2008 to 1,590 at 4 August 2011.

“Importantly we would like to recognise the benefits not only to these individuals but also to their families. Behind every transplant recipient is a family hoping and praying that their loved one will receive the gift of life,” said Dr Alan Amodeo, Chairman of Transplant Australia.

“Transplant Australia is pleased to continue to support the Organ and Tissue Authority as it increases donation rates for the long term,” Dr Amodeo said.