Well, since my last post, a lot has happened.
Jo has been really suffering. Despite the dialysis, she is still pretty sick a lot of the time. Her life is dominated by kidney failure and she has no freedom or rest from the disease, yet she still doesn't complain. I am constantly amazed at how dignified and strong she is. I don't know how she does it but, with the love and support of Ben and their children, she just gets on with it every day.
On a more positive note, I've now been through all of the testing to ensure that my kidneys are perfect and also to rule out any health problems which could either now or in the future have an impact on my health.
The good news is, so far, so good.
I had the final physical testing yesterday which was the most invasive so far.
The rate which my kidneys filter toxins from my body was tested. I was injected with a radioactive substance (isotope) and had blood taken at regular intervals throughout a five hour period.
It wasn't too bad at all. The isotope felt quite stingy as it went in and I'm sure that my mouth felt a bit woolly for a while afterwards but that was it.
The blood samples were taken in the same way as any other. I'm okay with needles but I just don't like seeing the needle piercing the skin so I always look away.
It got a bit sore towards the end of the testing but that's to be expected and it feels fine today.
After the final blood sample had been taken, Pete and I went for lunch at the hospital restaurant before heading over to have my CT angiogram done.
This one was pretty weird. I had to wear a robe and entered the room where I had to lay flat on my back on a long table with a scanner at the foot of it.
It reminded me of an alien abduction dream I had a few years ago but I can't go over that. Not now!
A cannula was placed into my arm. The lady tried to put it in the arm which hadn't been too badly battered but, in the end, it had to go into my abused left arm. Again, it was a bit sore but nothing compared to what Jo has endured so far. I really can't moan.
I was then given instructions to breathe in and hold it (which was hard work as I have gained some weight over Christmas) as the scanner moved over my body.
My arms were held above my head and I was told that a dye would be injected into the cannula and into my body so that the parts being looked at would be clear on the images.
I braced myself and it was the most bizarre sensation; a bit like boiling hot water filling my body head to toe from the inside. I can't say that I enjoyed it but it was certainly an experience!
The purpose of this test was to look at my kidneys in detail and, also, the arteries and vessels. This is really important and can affect the surgeon's decision about whether or not the operation can go ahead.
After the scanning was done, I had to wait for fifteen minutes for the dye to flow into my bladder so that an x-ray could be taken. I was more concerned about needing to pee at this point.
|Me shortly before "the dance"!|
As soon as the radiologist told me not to go to the toilet, my bladder started screaming at me and I began to do "the dance". You know the one. One leg clamped over the other and a funky little bounce.
I panted dramatically through the x-ray which was very quick and went to the loo immediately.
I have to admit, I was hoping that the morning's radioactive injection would give me something interesting in the toilet but it was all normal. I know that a few of our readers were also curious but, nope, no radioactive glowing poo or wee, I'm afraid. Sorry guys!
That was it.
So far, I have had:
- Loads of appointments from July 2012 to October 2012 to rule out any connective tissue disease due to my mixed symptoms from around 2003/4. I have osteoarthritis (OA) and fibromyalgia (FM) but had some unexplained symptoms along the way which were mistakenly grouped with my OA and FM. This caused years of me not knowing what was wrong with me, confusion for doctors and, worst of all, a delay in me being assessed as a donor for Jo. Anyway, the good news is that none of my conditions will have any impact on kidney related issues and it just goes to show how careful the transplant team are about the health of any potential donor. It's certainly very reassuring for my husband and children.
- General health assessment
- Blood tests for HIV, Hepatitis B&C, kidney function, liver function, possible virus exposures and anaemia
- Urine dipstick
- Blood pressure
- Chest x-ray
- Renal ultrasound
- Consultation and examination with nephrologist (kidney doctor)
- Isotope GFR
- CT angiogram
After that, Jo and I will meet with the Human Tissue Authority (HTA) to discuss the procedure and legal implications in detail. They need to be satisfied that a donor is not being paid or pressured in any way.
Once the HTA are happy, we will have a final cross match. If, for example, Jo had needed a blood transfusion between the time of our first cross match and this date, she could have developed antibodies against my tissue. Thankfully, we are a perfect match and Jo has not had any blood transfusions.
Once the final cross match has been done, we will be preparing for the surgery!
It still doesn't feel real. We have been through so many ups and downs since last summer.
We went from thinking that I would be able to donate my kidney pretty much straight away to the devastating news that my application had been refused. That was when I started blogging. I just felt like I had to do something and, if I couldn't donate, I was going to find someone who could.
Lots of people have said some wonderful things about how brave I must be to consider donating a kidney. To be honest, and I really appreciate the sentiment, bravery doesn't come into a decision like this.
Bravery is facing a fear and conquering it. The thought of Jo not getting a kidney is far more terrifying than any tests or surgery and I could never face that.
All of my tests seem like they have taken forever and I am so glad that I had the strength to go back to the doctors and demand some answers. I'd still be in limbo otherwise and I can't bear to even think of what Jo would be feeling right now.
On the other hand, I don't think that I would have started this blog if I'd been given the go ahead straight away and I'm really glad that awareness is being raised about kidney failure and the need for living donors. Not only that but I want the world to know how brave my beautiful sister is.
I will update again soon but, for now, we finally have hope and that alone feels pretty wonderful.