Tick, tick, tick.
The transplant clock is ticking down quickly now. Today marks 2 months until the big surgery.
I'm getting nervous. I'm starting to have that on edge feeling all the time as I anticipate what is to come. It doesn't help that Ashlea's nephrologist keeps using the word rollercoaster to describe the first year post-transplant. I don't want to get on the rollercoaster!!! I've been on the Ashlea-coaster before and it was not fun. Now that we have had time off the rollercoaster I really don't want to go back to living with my heart in my mouth all the time.
Ashlea had a kidney appointment during the week. Her kidney function is roughly the same as it was last month:
I think that gives Ashlea a GFR of around 8 or 9 (mine is 111 to give you an idea of how low her kidney function is getting). Less than 15 is considered end stage kidney disease, so we're definitely there.
At each appointment the specialist drip feeds me a little more information about the risks associated with having a kidney transplant. We've already had the discussion about the risks in terms of the actual surgery - this time we had to have the discussion about the risks to the survival of Ashlea's new kidney. That was far more scary - those risks are much more real. The risk of dying in surgery is around 1 in 10000. The risk of kidney rejection is 15% - far too high for my liking.
In case you're wondering the risks are:
- blood clots
- acute rejection
There is a risk of a blood clot forming in the kidney when they take a large adult kidney that is used to a large adult blood supply and put it into a smaller child's body with a smaller blood supply. In the last two years the doctor said she could think of 3 children who had developed blood clots - two of them were able to go back to surgery and the kidney was saved, the other child lost their kidney. Their brand new kidney transplanted from a family member. What a horrifying thought.
The second risk is rejection. In the first few weeks some people start to reject their new kidney straight away. Hopefully this won't happen with Ashlea as she and I are a good tissue match and Ashlea doesn't have lots of antibodies in her system yet.
The third and possibly scariest risk to the kidney comes from viruses. There are lots of viruses that are fairly harmless to healthy people but can cause serious problems for transplant recipients. The issue with viruses is that your body never fully clears them, so they can be passed from donor to recipient through the kidney. The serious viruses are CMV - which Ashlea and I are both negative for - although Ashlea is still at risk of being exposed to in the community; glandular fever (EBV) and BK virus. They don't test for BK virus until after transplant as I think it is pretty obscure but I know I am positive for EBV (glandular fever). This virus can be quite bad in that if a child gets glandular fever for the first time while on immune suppressants their body can do some weird thing where it gets itself into a pre-lymphoma state (that's cancer for those of you that are unsure). If that happens they have to reduce the child's immune suppression so they can fight off the disease as they don't want them to develop lymphoma. BUT the cost is that when you lift immune suppression you start to get kidney rejection and potential loss of kidney function.
Apparently these are all real risks that the doctos have all seen - rather than a 1 in 10000 risk that a doctor may have heard about but never seen. All the nephrologists have dealt with these complications. They are not all common but at the same time they are not unexpected - although very much unwanted.
So you can see why my stress levels are starting to rise. I'm starting to brace myself for what is coming - and am hoping and praying for none of these complications to occur and for the rollercoaster to turn out to be one of those little baby sized rollercoasters - rather than the Big Dipper.