Organ donation

We went back to the nephrologist [kidney specialist] and they said, “Well, we’ll have to start doing tests.” And at the same time my sister, who’s about fifteen years older than me, she said, “I’d like to do it.” But, at that time, I’d started having all the function tests, respiratory tests, ECG’s and kidney function and everything. So they said, “Well, we’ll do you first. If you do have some complication and we can’t go ahead with yourself, then we’ll consider your sister.”

First of all they checked that I had two kidneys myself, that they weren’t polycystic. And they scan the kidneys. They check the size of the kidneys, that both of them are functioning appropriately, according to what they should be; that there’s no damage to them or anything. Then they did the, I’ve forgotten the name of the,

Was it a scan, MRI?   

MRI scan. They did that and they also injected a dye just to check the main arteries and vessels that are surrounding it, that they’re all functioning. And I remember they said that it’s easier to get to the left than the right because there’s more difficult access, so if the left one’s appropriate then we’ll go for that one. They did that one.

They gave me an ECG to check the function of the heart, that that was working. They just did normal blood pressure. I remember the only one that was a bit scary for me is when you go under the, is it the MRI? Yes, I went through that. That was a bit scary because I remember I had one hole at the other end, it’s just because you listen and you feel a bit claustrophobic with your head. But I laugh sometimes, that’s easy, that for me was the worst part, more than the actual operation, that bit because your arms out the other end.

And they’ve got this dye injected, this blue dye into you. And obviously it’s got a thumping sound in the machine, like it’s vibrating. So for me that was, and I actually laughed to my Dad because he met one of his colleagues, one of his friends in the hospital. So he went off to have a coffee with him and I’m like stuck in this machine.  But I mean that was about half an hour or whatever, that was okay.

Then they did just normal scans, ultrasound scans. But they were thorough. And obviously they did the respirometer just to, you breathe in and they check your respiration rate and everything. I’m slightly asthmatic, but obviously that didn’t impact or effect the results at all, the kidney, being asthmatic was under control anyway.

We did that and they obviously did the cross match between myself and my Dad just to check that we didn’t react, or there was no reaction between the two bloods. They cross match antigen, and obviously we matched, our blood group.
 

I was quite in the dark about what was to come. Altogether, it took about 18, about 16 months from that very first appointment to the actual donation. The evaluation itself was about eight or nine months. And there were various appointments. Each time it was always blood and urine, that seemed to be just the standard thing. There was kidney scans, MRI of kidneys. They do a GFR test, where they have to put some solution in you and it goes round your body. And they test how quick it is to come out, all this sort of thing. Or go through the blood to test the function of the kidneys.

None of them were unpleasant at all.  One was quite time consuming, that was about four or five hours, where they had to take blood tests every hour to check how the kidneys were processing things. But that was no hassle at all. I just took a book and that was fine.

There was quite a long wait between some of the evaluation tests, which was a little bit stressful because you didn’t know what was happening or when the next one would be.

I started in 2009 and donated in 2010. So not really all that long ago.

Did you know that it would be over about 16 months or…?

No. No. And I found it quite stressful, the length of time. And the waiting and not knowing what was going to happen. And there were a few hiccups along the way. So I found it quite emotional, you know stressful, the whole thing. Maybe that was just me, not being patient.

Quite a few people have mentioned the time that it took.

Yeah.

Did you ever kind of think, “Oh, why am I doing this?”

No.

During that time?

No, never. If it had taken three years I’d have carried on doing it. I just wished that I’d been given a bit more information and knew what to expect. I mean if you know that you’ve got to wait two months for your next appointment, you wait two months. But when you don’t know and it’s week after week you don’t hear a thing, then you start to begin to worry, “I’ve failed, I’ve failed the tests,” you know.

And then of course you hear there’s another appointment and you think, “Oh thank goodness for that.”
 

Basically x-rays, nothing too intrusive or nothing like that. What is it? I’m just looking at my thing [notes] there. Yes, blood tests, urine analysis, you just give a urine sample. Blood pressure monitoring. Well you probably do these things whatever condition you’re in or whatever you have, you have to do them.

Yes, ECG which is like you go through this machine and they check your different points. Renal ultrasound, yes x-rays, that’s about it really, not nothing. But it just takes one at a time, another like a couple of things one afternoon, or you might be there for the whole day. And they they’d do various things in the morning and then you have to keep going back for the tests and things. Because it’s your kidney they have to keep monitoring.

Yeah. And did you say all this, this process took up to two years?

Yeah it did yeah. From the initial like first batch of blood tests and things, yes. Because I went for the tests and it took a few weeks to get everything sorted. They agreed to go with it but then my daughter developed a couple of complications, and they had to put it off. So then by that time I had to come back again just to make sure. So this time it was, yeah we definitely set a date and, yeah everything was fine.
 

It would have been nice to have had a chart, detailing all the different evaluations and tests you might have. It doesn’t mean to say you necessarily would have had them, and it might have been you’d have had to have extra ones. But there must be certain basic tests that you have to have. So it would have been nice to have had a leaflet with those on, so you could have ticked them off as you went along.

And then once you’d had an evaluation test, for somebody to contact you and say, “You’ve passed.” Or to tell you what the result is. And “You’ll have to wait probably six weeks for the next appointment maybe…” Really just keeping me informed every step of the way of what’s happening.

At the hospital it was wonderful. Everybody was marvellous, really uplifting and so helpful. Once I’d left the hospital, it was as though I didn’t exist and I had no contact.

Although I did have a phone number, everybody was answer-phone, saying ring someone else who was on answer-phone. And nobody ever got back to me. It was only right at the very end I managed to find an e-mail address, and even then it took weeks to get a response.

So that could have made it a much more enjoyable experience for me. But then, at the end of the day, it wasn’t about me. I wasn’t there to enjoy the evaluation test, although it would have been nice to have felt on top of the world the whole time. It was about the recipient at the end of it. So I think it was that that kept me going. But, yes, the communication could have been a lot better.