latest Arrival

Got this in the post this morning...

So the procedure I have to have is called a cystoscopy. It's one of the two tests I've been dreading.

A Cystoscopy is an internal inspection of the bladder. It involves passing a small tube containing a miniature telescope along the urethra into the bladder. The urethra is the tube from your bladder through which urine drains.

Doesn't that sound just lovely!!!

The letter came with a leaflet explaining the procedure, which is as follows:-

"The doctor will clean the area first and then instill an anaesthetic jelly into the urethra which lubricates, anaesthetises and acts as an aseptic as well. The surrounding area will be covered with a sterile paper sheet and sterile towels.

The doctor will introduce the cystoscope into the urethra and then carefully pass into the bladder. The area of the sphincter may be slightly sensitive and the doctor may ask you to take a deep breath or to try and pass water, both of which help the sphincter to relax.

Once inside the bladder the doctor can control the tip of the cystoscope to allow him to look around the bladder. To help him do this fluid is run through the cystoscope to stretch out any folds in the bladder lining; so it is normal to feel that the bladder is full towards the end of the procedure."

Like I said DREADING THIS!!!

A fly in the ointment

I received a call from the hospital on Thursday (Valentines day) to bring me up to speed with my brothers latest tests and the current state of play.

I don't think I've mentioned this before but I had a whole heap of blood tests done a few months ago that were sent off to Guy's and St. Thomas' Hospital (this is where the operation will be done, by the way)  to be cross matched with my brothers blood samples.

The cross matching test indicates if specific immune reactivity is present between the donor and recipient. The test involves mixing the recipients blood with the donor's blood. The recipient may have antibodies that could injure the donor's cells - a positive cross match. Meaning that the recipient would probably reject the donor's implanted kidney.

The result of this cross match test was a negative cross match - this is a good thing, means the blood incompatible transplant will work.

The phone call I got on Thursday was to tell me that latest set of bloods, that were taken from my brother at his last check up, had a positive reaction when cross matched with mine. This is not great!
They don't know why this has happened or what caused the change, just that it happens sometimes.

Now our next step is tissue-type cross matching. This involves my brother and I going to the Kidney Unit together and giving several blood samples which will then be sent to Guys once again, to be tested.

The tissue-type of a person is determined by 'marker' proteins. The higher the percentage of proteins that match, the greater the chance that the transplant will be successful. This involves looking closely at our DNA. More information on this can be found here: http://www.organdonation.nhs.uk/

Ideally, we want a negative result. However, tissue incompatible transplants can still be performed, this does carry higher risks and my brother would need extra treatments  to give the procedure the best chance for success this would include plasma exchange.

In July 2011, St' George's Hospital performed it's first tissue incompatible kidney transplant. Read the full story here: St George's tissue incompatible transplant

I think you'll agree that there is plenty to take in there. It's taken me this long to get my head around it and do a bit of research and I'm still not completely clear on it.

So we just have to wait for our appointment to come through, which I'm told should only be a couple of weeks. I'm also told that the tests I still need have finally been requested from the relevant departments, so, it shouldn't be much longer. Fingers crossed!

Still Waiting.....

So 2013 has arrived but my appointments haven't!! I still get the occasional phone call from the transplant co-ordinator making sure I'm still up for it and I'm told there is a backlog and my dates are being chased. So I just have to wait I guess.

In the meantime....

For the most part I try not think to much about being a Kidney donor or potential kidney donor should I say! Mainly, because I'd probably end up talking myself out of it - it's a pretty scary topic, giving one of your organs to somebody else. But also, not something to be entered into lightly either.

Recently, I got a text from my mum telling me that they were going to admit my brother to hospital as one of his blood tests had comeback with a very high potassium level (potassium in high amounts is bad for kidneys). Of course my first thoughts were for my brother, "is he ok?, How serious is this? etc". Then I thought, "OH MY GOD!! The time to get cut open is drawing nearer!!" Stupid thought, I know!! But that thought, scared me. Obviously, it didn't scare me enough to deter me from donating and as it turned out it was all sort of a false alarm. Some mix up at the lab!! Which as you can imagine made my brother pretty cross, to say the least.

But the point I'm trying to make, is that every now again little things pop up that remind me of what I've signed up for and that I have perhaps been too relaxed about the whole thing. Obviously I'm not gonna put my life on hold but I do need to think about it more and get a little more comfortable with the idea.

This may sound like I'm having second thoughts - I can assure you, I am not!! I'll admit, there have been a few wobbles - mainly selfish wobbles but I do want to help my brother and so here I am waiting for the rest of my tests.

Still interested

So, not a lot to tell really, Christmas is around the corner and no movement on the kidney front - which I guess is a good thing really, means my big bro is doing good and his kidney function hasn't deminished enough to require the transplant.

I am, however, still waiting for appointments, for those 2 dreaded procedures, the camera up my wee wee hole and the needle in the back, kidney biopsy one!!! I'm honestly in no great hurry for either of those!! I'm sure that envelope containing those dreaded dates will hit my doorstep at some point in the New Year!! Until then my avid followers.... We wait.

I am still here..

I haven't abandoned my blog. I just haven't heard anything more from the Kidney Unit. However, as soon as I do you, my followers will be the first to know.

Did I just wet myself?

Today I had my CT angiogram. I was a wee bit scared as I thought it was one of the tunnel ones. I'm not claustrophobic but the thought of being stuck in one of those, unable to move. Didn't exactly fill me joy.

I had to change into one of those god awful hospital gowns, luckily my ass wasn't hanging out the back for all to see!! When i was called to the scanner room, i was very pleased to see that it wasn't a tunnel at all. It looked more like a donut, with a thin bed coming out of it.

I lay on the bed, while the nurse inserted a cannula into my arm, into which they would administer the x-ray dye. When i was ready and comfortable the bed moved into the donut, i was asked to take a breath in and hold it for a few seconds as each picture was taken.

They then administered the x-ray dye. This was the weirdest feeling ever! Not uncomfortable at all, just very odd. My whole body suddenly felt very warm and i suddenly got this feeling that i had wet myself, which made me feel uneasy, to say the least

The whole thing took about 5 minutes and when i got off the bed I was very relieved to see that i had in fact NOT wet myself.

Not sure what's next... I think it is the tests I've been dreading....duh duh duh!! I'm sure I'll get a call from my transplant co-ordinator letting me know how things are proceeding and what's next.

As usual watch this space......

Plenty of Food for Thought

Yesterday was a tough day for me. New things to consider and new information to absorb.

I saw the Consultant first, he was a nice chap, but spoke so slowly... the appointment seemed to go on forever. I had a full work up, listened to my heart and lungs,took my blood pressure, felt my glands, examined my abdomen and even gave me a breast exam!!

We discussed my medical history, previous surgeries and my current lifestyle, my smoking, my drinking and my diet etc...

Then onto the kidney stuff, he went over all my results from the tests I've had so far and everything is looking good. We then discussed my brother's condition, I was told that according to the last test he had done, he had approximately 21% kidney function, which is actually pretty good. According to the Consultant, my brothers kidney function needs to go down to about 7% or 8% before the transplant is absolutely necessary. If my brothers function continues to deteriorate at it's current rate, then it could be anything up to 5 years before he needs the transplant. However, should he contract an infection or virus then it could be quicker.

We discussed the risks involved for donors, the main issue I will face is the risk of major surgery. All surgery carries risks, no matter how big or small. The most common risks associated with my surgery (a nephrectomy) are usually relatively minor and can be treated appropriately. These Include:-

• Wound, urinary tract & chest infections, which occur in approximately 1 in 3 donors.
• Bleeding that requires a blood transfusion or blood clots, this occurs approx 1 in 50 donors.
• Death - this is very rare occurring in 1 in 3,300 donors.

 Due to the rigorous assessment process, this ensures only the very healthiest individuals are considered as potential donors.

At this point it was also made very clear to me that I am free to change my mind at anytime and if I didn't want to tell my family I had voluntarily withdrawn, they could help me with that.

It was also explained to me that as my brother has opted to go for an ABO Incompatible transplant, a riskier type of transplant, he would also have to undergo further treatments. These will remove the antibodies against my blood group in order to allow the transplant to take place. This involves administering a drug which suppresses antibody production and a treatment called Plasma Exchange. This procedure involves plasma (part of your blood) being removed and replaced with new plasma. However, he'll only need these treatments in the run up to the transplant.

We also discussed my future and whether or not I'd like to have children. I said "yes, I would one day. But not in the immediate future."
I know that I can still have a healthy pregnancy with only one kidney, but i would be a high-risk pregnancy and I'd be monitored more closely. However, what I hadn't thought about was, If the timing of my decision to start a family conflicted with my brothers need for a transplant, and if I had a child prior to my brother needing a transplant, my antibody's would change and may render me unable to donate. This was something I hadn't even thought about. To be honest, it totally blew my mind and left me feeling kinda crappy! How does someone make that choice? Knowing that if you choose to start a family you could be letting someone down, and not just someone your OWN brother!! It's a toughy!!

In the gap between, the end of my appointment with the Consultant and seeing the counsellor, I had to give some more blood samples to be sent to Guy's Hospital to be tested for cross-matching and I had to give another urine sample.
The urine test revealed a trace amount of blood, yet again!! Which now means that the tests I'd hope to avoid, the cystoscopy and renal biopsy, are now necessary!!

As soon as I stepped foot inside the counsellor's office, this huge wave of emotion washed over me, and i burst into tears. The discussion I'd just had with the Consultant had sunk in, along with the need for the tests I've feared and the enormity of what lies ahead hit me like a 10 tonne truck!! Obviously, my meeting with the counsellor was private, so I wont be giving you a blow by blow account of what we talked about, but we did discuss my family and my relationship with them, my support network, my history of depression and how i feel about my decision to donate my kidney. After a few tears and plenty of tissues, she told me that she saw no reason why I shouldn't donate and that she thought I was strong enough to deal with the psychological side of donation. Whoopee!!

The next test needed is a Renal CT, which will look at the anatomy of my kidneys, the position of them, how many veins go to them and which kidney is gonna be the best for them to take. I'm not entirely sure when I'll have to have the cystocopy or renal biopsy but I shall as always keep you posted.