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.

Some Info about the testing - Bloods

Mobile phone photo

On the second morning of testing I was scheduled for the blood tests. I had to fast from midnight the night before for this list:

FASTING BLOODS AT OUTPATIENT PATHOLOGY
Blood: U+E'S, Cr, Glucose, LFTs, Mg, Ca, PO.
CRP,B12,Folate,Iron Stud ies
Cholesterol HDL + l DL. Triglycerides, V1T D, TFTs, HbA1C
PSA (>age 50 males) Testosterone (males),
FSH, LH (females)
Immunoglobulin levels, protein electrophoresis
FBE, ESR. APTT. PTIiNR. Blood Group. TPMT ACTIVITY TEST
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)
Quantiferon Gold, baseline save (for future serology etc).
Arterial blood gases (room air x15 minutes first if possible)
Oral Glucose Tolerance Test with Insulin levels at the time of glucose levels
2hour test. patients must be fasting : blood at baseline, 1hr and 2 hrs.

So at 7.30AM the nice lady from pathology came in and emptied a bag full of blood tubes that needed to be filled. I'd just woken up, sitting in bed bleary eyed (with bed hair) in my pyjamas.
I asked how many - she said 18. I couldn't resist taking a photo of them. She laughed!

While she was filling tubes, I had to drink a 300mL bottle of glucose syrup for the glucose tolerance test. I didn't mind that bit - it just tasted like flat sweet lemonade, but afterwards - bellyache. Blergh!

For the glucose test she had to come back at 8.30 for more blood, and then 9.30 for even more blood.

By this time, I was absolutely dying for a cup of coffee! I only had a chance to drink a super quick coffee before my chariot arrived to whisk me over to the physiotherapy department for the next appointment....

.... details in the next post.