A* Bladder Control

Today I had my renal ultrasound test. My brother also had his today, his appointment was 15 minutes earlier than mine, so we went together.

I was able to stay and watch my brothers test before i had mine. We had to lay on our side on the couch, the sonographer put cold gel on our side and then scanned the kidney, taking measurements and pictures as she went. We then had to turn on the other side, while she repeated the procedure. Finally, we had to lay on our back, whilst she scanned our bladder.

She told us that our kidneys and bladder were fine and normal. The test took about 10 minutes and wasn't unpleasant at all.

I'm just glad that i didn't wet myself!! Having a full bladder with a hacking, tickly cough is certainly not a marriage made in heaven. Especially when she was scanning my bladder! Pressing the hand-held probe over my bladder - I was so relieved to finally be able to go for a wee at the end of the examination.

Next appointment is 16th August, when I will have to do another urine test and we will find out if I have to have the cystoscopic exam or the renal biopsy.

So until next time.....

Potential Spanner....

On Thursday I went to the Kidney unit for some blood and urine tests, basically renewing the tests i did last year.

Should get my blood results next week, but the nurse was able to test my urine sample whilst I was there. Now, when i did this test last year, there were trace amounts of blood in my urine, but we thought this was due to it also being the tail end of my time of the month. This time when she tested it there were trace amounts of both blood and protein. I didn't have my time of the month this time round. The nurse went on to tell me that i would need to come back in a fortnight and have another urine test and if there are trace amounts of blood in that sample then I need to have cystoscopic examination and/or a Renal biopsy.

 A cystoscopic exam involves a cystoscope, a thin tube with a tiny camera on the end, being inserted through the urethra (OUCH!!) to take pictures of the inside of the bladder.
The Renal Biopsy involves a special hollow needle being pushed through the skin and muscle into the kidney tissue to obtain a small sample from the kidney. Cells from the kidney can then be looked at in detail.

These tests will hopefully make sure that these traces of blood are not coming from either my kidneys or my bladder. I'm told that this is a pretty common occurrence and nothing to worry about.

However, like most things that we are told NOT to do we go right ahead and do the opposite. So, yes, I am worrying about it. I'm not particularly worried that they'll find something wrong with me, I'm more concerned that they will find something that prevents me from donating.

Now this chain of events, has kinda hit me like a tonne of bricks. If it didn't feel real before, it certainly does now and for the first time I actually feel really scared.

What if I can't donate? How will I feel about that? The question that really gets me, the question that the transplant nurse keeps telling me to think about is, How will I feel if my brothers body rejects my kidney? I thought about this a couple of times before Thursday and didn't think I could answer it now. But the truth is IF this doesn't work, I'll feel that I have let my family down, I'll have a scar to remind me of how i tried but failed to help my brother, what will it do to my relationships with my family, what will it do to my brother.

I kinda wish now, that I hadn't told so many people, cos whilst their support is greatly appreciated and their interest is moving. I get asked about it a lot now, and part of me wishes they'd stop asking, cos with every question they ask, that's something else I have to think about and the pressure increases. At the same time though, talking about it does help. I can't have both!

I do worry, that due to my sensitive and over-analytical nature, that when it comes to the counselling session, I will mess it up by breaking down, when they ask me that dreaded question, "How will I feel if the transplant doesn't take?" At the end of the day, this is my brother we are talking about, of course I will take it hard if it doesn't work and I'm not about to lie to the counsellor and say "yeah, sure it'll be a bummer but hey, at least I tried!"

Tomorrow I have my Renal ultrasound, which is already proving problematic, as i have to have a full bladder for the exam and I currently have a really tickly cough which is playing havoc with my bladder control!! So fingers crossed I can keep the cough under control for the hour before the exam. Wish me luck.

From BBC Radio 4

Pamela wants to donate one of her kidneys to a stranger. She's extremely determined. She's also 82 years old. Should she be allowed to donate, and if so, who should get her kidney?

BBC Radio 4 - Ethics Commitee

First set of results....

Got my results today! I have a GFR ( glomerular filtration rate) of 103. The norm is 90 or above - so that is a good result. My kidney function is good with the left kidney functioning at 54% and the right kidney functioning at 46%.


I have to go back to the hospital on Thursday to have my blood pressure and urine tested, then back on Monday for my ultra-sound. I also have an appointment to see the consultant on September 11th and somewhere inbetween that i have to have a Renal CT Angiogram, which is a more in depth study of my kidneys.


People ask me if i'm scared. I wouldn't say i'm scared, more nervous I think. I make jokes about it a lot cos it helps take the pressure off a bit. The question i get asked the most is will I still be able to drink alcohol?! I guess they ask me this because i manage a bar. I've never really been a massive drinker, so to be honest, that part bothers me the least. However, it is my understanding that one can go on to live a "normal, healthy life" with one kidney.


I have been asking myself some odd questions lately. Such as, I wonder how much a kidney weighs and how much weight i could lose by having one removed. Will my brother and i have that strange connection that some donors speak of, like being able to feel what the other person feels. Will having one kidney mean i need to wee more.


But the hardest question I am going to have to answer is how will i feel if after donating my kidney, my brother's body rejects it? I find this question very hard to answer, because a) I'd rather not think about that, and b) I don't know how I'll feel, i can't predict my feelings. Obviously I'll be upset but will I get over it, I don't know. What i do know is that if it doesn't work, I will have a constant reminder in the form of a scar on my body for the rest of my life. That FACT, i do struggle with!
I have a wonderful family and some amazing friends and to be honest, I don't think I could even contemplate donating a kidney if I wasn't surrounded by so many awesome people, who I know will be there for me and my brother every single step of the way. It is so important to have good people around you.

It's not just me

I feel it is important at this stage to say that it's not just me having these tests done, my other brother, is also being tested. Once all the tests are completed and the results are in, the medical team will tell us which of us is the MOST suitable candidate, then it will be down to us as a family, to decide which of us will donate.

Obviously there are lots of things to consider, for example, my brother has a young family and is a self-employed plasterer, so what would be the financial implications for him taking so much time off work. As for me I am single and employed full time, so i should be able to claim sick pay. My only REAL financial commitment is my rent.

So there are a lot of factors to take into consideration and this decision must be one that all concerned are happy with.

My brother is having his Isotope Glomerular Filtration Rate (GFR) and Isotope Renogram tests on Monday. Then we both have appointments for a Renal Ultrasound, mine is on July 30th. I also, got a letter this morning informing me that i have an appointment with the consultant on September 11th!

So it would seem that everything is ticking along. I have to admit, with each new appointment, I get a little more nervous, but who wouldn't it's no small thing.
I was also able to get copies of the images of my kidneys from the hospital, so as soon as i receive them, i shall upload them here - I hope you'll find it as interesting as i did.

Until next time guys....

I'm Radioactive

Having drunk my litre of fluid, I arrived at the Nuclear Medicine Unit and was greeted by a very odd lady who didn't seem to want to make eye contact with me at all.

First up, i was weighed and measured, have to say i was a little gutted at my weight but anyway. I was escorted to the scanning room where i was met by a very lovely older gentlemen named Lynn, who i buttered up by calling him McSteamy from Grey's Anatomy (for the record he looked nothing like him)!!

I laid down on a very narrow couch, while McSteamy found a vein in my left arm, in which to inject the radioactive tracer so that my kidneys could be seen by the imager. At this point he also administered another injection of a mild radioactive substance which would take longer to work and would eventually be used to assess the rate of clearance from my blood. More on that later.

Whilst laying on the couch, I could see a black and white monitor which was showing images of my kidneys, almost like an X-ray. I was relieved to see that i did in fact have TWO kidneys!! Great start!!

The Images started with 2 very white kidney shaped blobs and a smaller white blob at the bottom of the screen, my bladder. In the 25 minutes or so that i lay there, I watched my kidneys turn from bright white to grey grainy blobs as they filtered out the tracer. My bladder got whiter & whiter and larger & larger, it was really quite cool to watch but I was so glad when my time was up as i was desperate for a wee!!

Once I had gone to the little girls room, i had to get back onto the couch for a quick 1 minute image. When they had checked that they had the images and other information they needed, i was free to leave the unit. I was instructed to return to the unit in 2 hours for the first of 4 blood samples they would take.

I bummed around the hospital with my friend for a couple hours, took full advantage of the hospital restaurant's £2.50 5-piece breakfast - BARGAIN!! Then we headed back to the unit, the same odd lady beckoned me into a consultation room and explained that i would have a cannula put into my right arm (opposite arm to which the tracer had been administered earlier).

This next part is not for the squeamish but is also not typical of what to expect i can assure you!! She put the tourniquet around my arm, found the vein and proceeded to put the cannula in my vein. Now, I'm not particularly squeamish but i don't like to watch them inserting things into my arms, so I looked away but I could feel her struggling to get it in, she then began shouting for her colleague, in walked McSteamy, she'd messed up and apparently gone in at the wrong angle, so McSteamy took over, at this point I looked down at my arm to see what was going on..... MISTAKE!!! As i looked down I saw blood spurt from my arm, which McSteamy quickly dealt with, i watched him draw the blood sample and instantly felt light-headed and the colour drained from my face. I was told to take a minute and was given some water, which made me feel much better. The feeling only lasted a minute and has never happened to me before and was all dealt with very quickly.

The cannula was left in my arm, I was bandaged up and told return in an hour when they'd take another blood sample.

This was repeated half an hour later and then again another half an hour after that. Once all 4 blood samples had been taken the cannula was removed, I was patched up  and free to go home. I should get my results in about a week to 10 days.

It's a fairly long day to spend at the hospital 4 and half hours all in all, and a fair bit of waiting around. I'm glad i had a friend with me, otherwise i would have been really bored!

Next test is a renal ultrasound, which will check the size and shape of the kidneys and can exclude any anatomical abnormalities. I also need to have a few more blood tests and then an appointment with the consultant. It's all getting pretty real now, I expected to feel really overwhelmed by the enormity of it all but I'm not, I'm actually pretty relaxed about the whole thing but I'm sure that will all change.

T'was the night before......

So, got my tests tomorrow and according to the info they sent me, i am supposed to drink between 500ml - 1 Litre of fluids before the time of my appointment. Just need to do a quick bit of GCSE maths to figure out how many cups of tea that is! Tea counts as fluids right?!

To be honest, I'm a little scared, the tests aren't a big deal, that's pretty easy! I'm scared they may discover something that means I can't donate or that they find something wrong with me. Plus, I've been getting dull pains in my kidneys all day. I'm pretty sure there isn't anything wrong with me and what I'm experiencing is psychosomatic. My kidneys are just as scared as I am!! It also, reminds me that the human body is a very strange place!!

Something tells me that sleeping is gonna be tricky tonight.

So Back Tracking.....

So last year, when it became apparent that my eldest brother would need either dialysis or a kidney transplant - I put myself forward as a potential donor. He's my brother of course I would.

From the moment i opened my mouth to offer my kidney, I had this feeling that I would be a match and that I would be able to help him out. I already knew my blood type, which is AB. So i was gutted to discover that my brother was B and needs either a B or an O blood-group match. I thought that's it!! I can't donate my kidney to him.

Then, as more potential donors came forward that weren't blood-group compatible with my brother, it became apparent that the next option would be the paired-donation scheme. So i booked myself in for the tests.

I saw one of the Transplant Co-ordinator Nurses, she was very friendly and I felt very relaxed in her company. She made sure I knew exactly what it was I was offering to do and that I would go through a very thorough medical assessment.  I would also have to see a psychologist and psychiatric report made. She explained the procedure and potential risks etc. After a few forms were signed, mainly ones asking for permission to gain access to my doctors file, that i agree to an HIV test and that i had understood all the information i had been given.
She then proceeded to ask me about my medical history and that of my families. My father has diabetes which means he's not a suitable donor for my brother. She asked me a few more questions re medical history etc and then came the tests:

Blood pressure
Blood taken for tests (about 8 tubes used)
Urine Sample
ECG (Electrocardiogram - Cardiograph of the heart function)
Chest X-ray.

I'd had to fast for a couple of them, so the sooner the tests began the better cos i was starving!! Once the many, many bloods were taken i was allowed a cup of tea!! Deep Joy!!

The blood would be tested for:
Hepatitis B & C
HIV
CMV (Cytomegalovirus - member of the Herpes Virus family)
Diabetes
Kidney & Liver function
Anaemia

I was at the Unit from 9am until about 2, I would advise that you take a good book as there is a far bit of waiting around, especially for the ECG and chest X-ray.

I got all my results back about a week later and everything was good, except my Creatine levels were a little low - but they think that maybe cos I fasted slightly longer than i was supposed to. Also, at this point because my blood-group is AB, they decided that they would not be conducting any further tests on me due to the rare nature of my blood type - basically there aren't many AB people out there with Kidney failure and an AB donor can only donate to an AB recipient! GAME OVER!!

Or so I thought.... Earlier this year my brother had an appointment at Guys and St Thomas Hospital in London, they have one of the largest blood group incompatible transplantation programmes in the UK, having transplanted over 70 blood group incompatible living donor recipients over the last 5 years.

Cutting a long story short it is now possible for my brother to receive a kidney from any blood group!! So, on Tuesday July 17th 2012 I will be visiting the Nuclear Medicine Unit at the Royal Sussex County Hospital to undergo so more tests, which are:

Isotope Glomerular Filtration Rate (GFR) - this is to assess the capability of the kidney to 'clear' the blood of a substance.
Isotope Renogram - this examines my kidney function

So that's the next step!! Wish me luck!!

Back to the Beginning....

My eldest brother was diagnosed with Kidney Disease back in 2008, IgA Nephropathy to be exact and it’s fair to say he's been pretty complacent about it, or at least not been giving it much consideration apart from his routine hospital check ups. If he doesn’t think about it, it’s not really happening!!

Well, things have deteriorated pretty dramatically, and in August last year he was faced with what he pretended was never going to happen. A Kidney Transplant! And or Dialysis!

He almost certainly wants to avoid dialysis, and therefore is looking into something called a “Pre-emptive transplant” this means having a Living Donor give him a gift of a Kidney (everyone has 2).

As of October last year, all of the potential donors that had come forward including my other Brother and I were not a blood-group match for my eldest brother. So we are all going into a 'paired-donor scheme', where they try to cross-match from incompatible pairs, so for example, my kidney would go to the brother of another couple, whose sister would donate her kidney to my brother. The database run is performed every three months. 

 If a suitable donor didn't come out of this then another option is for a more specialised procedure where one of us does donate to my brother and they try to remove the antibodies that he has against our blood group. The kidney unit are currently in contact with Guys Hospital in london to get some statistics on this to see if it is a viable option.

On the surface my brother looks alright, you wouldn't know he was so sick to look at him, so it's hard to get my head around the FACT that he needs this drastic treatment.