Cross Matching Day

My brother and I went to the hospital together today, for the first time, for our tissue typing cross match tests.
It was a different experience. My brother doesn't talk much about his illness or how it effects his life and how he feels about it. He openly he admitted that he still feels like it is happening to someone else.
I didn't realise just how many tablets he has to take each day and what the side effects of both the meds and the illness were. He has to take 16 pills everyday, some of which are bicarbonate of soda tablets to help keep his potassium levels in check. He wasn't at all shy in admitting that they make him fart and burp a lot.
He is tired a lot of the time and gets horrendous pangs of nausea often. The nurse said that these are the early signs of renal failure, which of course gave me a lump in my throat.
My brother and I both had to give blood, to be sent off to Guys in London to be tested. My brother went first. The nurse took about 12 test tubes of blood from us both. Neither my brother or I are particularly fond of needles, so the nurse did a great job of distracting us by talking to us about tissue incompatible transplants.

As I have said before, my brother would need to have a treatment called plasma exchange to strip his blood of any antibodies that will react with mine. The risks are increased with an incompatible transplant. We will receive the results of this latest test in a week, the results of which will determine what will happen next.
If the results come back positive, then we will have to evaluate the risks involved and whether this type of transplant is the best course of action.
If the results come back negative, then we will both have to undergo some more tests and travel to Guys to meet with the consultants.

Now, my brother isn't exactly thrilled at the idea of the plasma exchange and I don't particularly want him to have to go through any extra procedures that could be avoided. However, is adamant that he want's to avoid dialysis, as he will lose a lot of his quality of life, by being being strapped up to a machine 4 hours a day, 3 days a week.

So the option of entering the paired scheme has come again. Mainly because, we could find a donor that is blood compatible, which would make the whole process a little easier on my brother. There are however some drawbacks to the scheme. They only do 4 matching runs a year, plus the fact that I'm blood group AB (the rare one) and can only donate to another AB, narrows our chances of getting a match quickly which could increase the need for him to go on Dialysis.

Last time this was discussed, both my brother and I had reservations about both receiving and donating kidneys from and to strangers. However, while I still have these reservations, my brother's mind has changed. This nurse did say however, that one of the patients who received a kidney from their father, felt a great sense of responsibility and felt he had to be extra careful, so as not to waste the gift he had be given. Something that I had thought about, previously. She went on to say, that when this same patient needed a second transplant, and his mother was unable to donate, they opted for the paired scheme. The recipient said he felt much more relaxed with a strangers kidney, as he didn't know the donor, and could go on to live the life he wanted. Something, which I hadn't considered.

Whichever way we decide to go I will still be helping my brother. I guess I just need to get my head around the idea of giving my kidney to a stranger and never knowing where it went.

We will now what for the results and go from there.

UPDATE: We were given the results the next day - they were negative. This is good because it means we can continue with the blood incompatible transplant only and not blood & tissue incompatible which is riskier!

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......