Let's talk

Well the appointment I've been sort of dreading has finally arrived. Seeing the Renal Counsellor!

The appointment is on Tuesday 11th September, after I've seen the Consultant.

My appointment with the consultant is first, so when I see the counsellor a couple hours later, I should be furnished with all the information on my particular case.

I have this weird thing, that whenever I talk about my feelings, I get all emotional. Now I'm sure the counsellor's office is the right place to do that but I'm worried that it'll come across as me not being ready or not strong enough to cope with emotional aspects of the surgery and donation etc.

This is also the time when I'll have to discuss the dreaded question "how will you feel if the surgery doesn't work?" A question I have agonized over and probably thought more about than the procedure itself. How WILL I feel? How will I feel when this amazing thing I'm doing doesn't work? Even now, that question makes me feel physically sick. I've been making jokes and trying to keep the whole thing light because it just makes it easier for me to get my head around.

The surgery itself, may not take place for a while yet, as my brother still has fairly decent kidney function and they don't tend to perform the surgery unroll he absolutely needs it. The best way to explain it is that, you don't put new batteries in your TV remote until the current ones stop working, and that's kinda the same for kidney transplants. However, it's a fine balancing act, the timing has to be just right, as they obviously wanna give my brother the best chance.

I've seen counsellor's before, and talking to a stranger about my issues didn't really phase me too much - it a lot of ways it was kind of easier. However, the idea of talking to a stranger about kidney donation, my brother, my family, my feelings etc does sort of scare me - I guess because there is a lot riding on this as she will fill out a report assessing whether or not I am mentally and emotionally stable enough to do this!!

Pictures as promised

So this first picture is of the chest X-ray I had done last year.

Is it a boy, is it a girl? No it's my kidney!!

These next pictures are of the Glomerular Filtration Rate test.

These pictures show my kidneys filtering out the isotope tracer that was injected into my vein. This was the test that I found most interesting.

My next appointment is on September 11th which will be with the consultant. Where I believe, we will go through the results of the tests I've had done so far and what the next steps are. I think then he will send me for a Renal Ct which will show the surgeon the anatomy of my kidneys, so that they can decide which is the best/easiest kidney for them to remove. I'm told it's usually the left kidney but we'll see.

I also still need to see the counsellor, I'm just waiting for the letter.

Wee Wee Test

Last week I had my 3rd urine test. On the bus on the way to the appointment I downed a 1.5 Litre bottle of water, as I had to give a larger sample than usual because Sally, the nurse wanted to send off some for cancer screening.

The nurse tested my urine and hooray!!! No blood or protein present!!! BUT instead of moving on to the next step, she now wants me to come back in about 2 weeks time to do ANOTHER sample and IF that one is also clear of blood and protein, then i definitely wont need those other tests.

Obviously I am pleased at the result of my latest sample but also a little disappointed as I really thought that having a clean sample THIS time round would mean that I wouldn't need to do those other tests. So fingers crossed that my next and hopefully final sample will be clear too!!!

I understand that they have to air on the side of caution and rule out everything that could affect my ability to be a donor, but it does get a little frustrating sometimes.

How do you measure significance?

This whole donation business and people attitudes towards me and "this amazing thing I'm doing" has made me look at my life thus far in a very different way.

I'm 32 this year and in that time I don't feel as though I have really achieved anything of any real significance. But I guess that depends on how you measure significance. Is it significance to you or others? For me I guess it has always been a combination of the two.

I always had this feeling that I was "destined for more!" cheesy I know, but that said, I just never had a clue what that "more" was. I am definitely not saying that donating a kidney to my brother is it, cos that would just be such a bloody cliche!! The movie My Sister's Keeper springs to mind!!!

I will admit though, that with each test I pass I feel a small sense of achievement. Doesn't make me any less scared though! I have some great friends around me and one in particular gives me great strength and makes me feel like there isn't anything I can't face. Again, cheesy I know but it's the truth.

I saw my Grandad the other day, now there is a man who has achieved a lot - mainly in the name of God, Queen and Country. He was a Commando in the Marines during WW2, his boss was Ian Fleming. Yes, the same Ian Fleming that wrote the James Bond books!! He told my mum that he is proud of me and my brothers and that really kinda choked me up. It's not that it means more coming from a war veteran, it just means a lot!!

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