[DONOR CARD HOLDERS:
PLEASE SEE NOTE AT THE BOTTOM]
Saturday 8 February saw myself and a mini entourage travel to Hammersmith Hospital to attend a Transplant seminar, hosted by the live donor team with speakers made up of a selection of surgeons, donors and recipients.
They covered....everything. It was extremely interesting, but such an intensely emotional afternoon that I found I had to refuse to ward tour at the end, thinking it would be a little too much for me to take. I've been to hospital before, and I wasn't at that point ready to see it again.
The seminar began with a positive word for live transplants. Especially pre-emptive (before dialysis) transplants. These are usually done when the patient is around 20% functionality (I'm at 28%) and, at £20,000, is far cheaper than a years worth of dialysis. Not to mention, a transplant extends the patient's life and gives them more energy.
With this reasoning, medics encourage patients on dialysis to get a transplant, though I doubt it takes much convincing as dialysis can be an intense process for anyone to go through.
It's amazing to think that 20 or so years ago, transplants were extremely rare, yet with the advancements the medical industry has made over time, they've increased by 50% with ongoing success rates.
WAITING LIST FACTS:
Did you know
The number of recipients on a renal waiting list is around 7000 and very rarely drops below this number.
Whilst on the waiting list, there are 3 different types of donations available:
1) Cadaver donor - Kidney from someone who's recently died.
Surprisingly, this option isn't as widely used as it used to be. Previously, the main donors were people who died in traffic accidents or from illness which didn't effect the kidney.
Now, thanks to development in medicine and road safety adverts which have been in full force over the last few years, encouraging road safety and helmet use, the availability of healthy cadaver organ donors (especially from young people) is dramatically reduced.
Now the main organs available are those from the older generation meaning most of the time they're too old to use.
However, on the occasion that a cadaver donor is made available, the lucky recipient who receives the organ is selected as follows:-
As with living donors, there are 6 medical numbers which need to match up with the recipient's to ensure compatibility.
Due to the length of the list, if (inevitably) more than 1 person matches those numbers, the consultant considers;
- How urgently they need the kidney
- Their location
- Their age
- The length of time on the list
- and so on.
For each of these considerations, a patient gets a point, bringing them closer to being the likely candidate.
Location has to be considered as the operation has to take place within 48 hours or the organ doesn't work to it's optimum capacity. This check list therefore allows the consultant to narrow down to the person who 1) needs it most 2) is able to get to the location soonest.Even then, however, there's a chance the kidney might not be fully compatible.
This is another reason a living donor is highly encouraged as the final date is set by both people, to their own convenience, and in the meantime, the kidney kept safe and happy in its home environment.
2) Living donors - from strangers or relatives.
Basically doing what I'm doing and finding living people who could give me a kidney.
3) Paired donorship - this...this is a new one for me: matching up with another pair
If Tom and I did this (myself as the recipient needing the kidney, Tom as a healthy donor but unable to give to me), we'd enter a pairing pool and be given another couple to whom Tom would donate and I would receive.
Tom's suggested we consider this as a possibility, so we need to sit down and chat about this.
The sad thing is, there are also perfectly healthy people out there who've been born with 3 fully functional kidneys and don't even know it.
Another thing I didn't know, each person on the list has two potential statuses:
ACTIVE - if a kidney is found at 3am, you're called in to rush to hospital. You have to be as ready as a mother about to go into labour, except this is more unpredictable
SUSPENDED - if you're on holiday, ill etc, you're not contacted until you've informed the group otherwise. If you're ill you can't under go the op.
They also couldn't emphasise enough that the main reason for people missing out on a new organ is due to not being contactable; 'give us contact numbers for your home, your mobile, your work, your family, your friends who might know where you are....everyone. Otherwise you're missing out on the new organ if we can't reach you.'
A lot of information to take in, so we closed in on having a break.
Before we did, however, we were informed that, if the organ looks like it's being rejected, the recipient is given a steroid treatment. This, however, leads to a 10-15% chance of getting diabetes.
*wow...a lot of information...ok*
'Time for a break now. Outside you'll find more tea, coffee and....um....sweets'
This was met by a light ripple of 'really?....after that talk' style laughter.
A LITTLE BIT OF HISTORY
The first successful live donor transplant took place on 23 December 1954 when the patient was offered his twin's kidney. The hospital was in commotion over the idea as, if the operation went wrong, the surgeon would go to jail. On hearing his wish to undergo the procedure, nurses who'd normally assist the surgery quickly made their way back home for Christmas, except for one nurse who was unable to travel due to snow.
She was neatly informed, if she didn't help, she'd be fired. Good times.
This nurse stayed with the patient throughout the process, looking after him and keeping him company.
The operation was a success, and it seems the two bonded so much during their time together, they got married and went on to have a family of their own. Talk about a happy (and brow wiping) ending!
This was a revolutionary time for medicine as it prompted further research into this particular area.
From 2000 to 2007, the rate of living donors went up by 35%.....Hammersmith hospital now has 2 to 3 operations happening a week.
THE OPERATION ITSELF
The procedure of the operation was then explained with GRAPHIC detail. Pictures and everything. They even had an small emergency area set up in place in case anyone felt ill.
Fortunately, over 3 years at the British Medical Journal prepared me for these fascinating pictures.
At the beginning of the talk, I briefly zoned out
Remember, kidney patients suffer distraction. The specialists themselves even mentioned that they'd be repeating themselves due to this fact. I think....I can't actually be sure as I may have zoned out. Tom confirms this statement was, in fact, said.
then back in again to hear 'the operation leaves a huge scar and the donor in a lot of pain'.
Oh dear god, don't say that!!
He then followed this up with, 'but that's in the past and now things are drastically different'
Ah...must have missed the first bit of that sentence. Carry on.
Previously, to remove the kidney from the donor, a huge incision would be made, hands shoved in, the kidney was removed and the donor left with a large scar and some pain as a reminder of their sacrifice.
Now, thanks to a revolutionary item called ETS vascular stapler, the surgeon makes a 5 cm long incision in the donor. This is held open with clamps, the required veins and artery tied off with ribbons of matching colour to assist in the operation, and the kidney is removed. It's immediately flushed with preservative to remove all the fluids left over by the previous user, turning it a from a neat pink to a discoloured grey, then the wound itself is stitched up from the inside. This method leaves a scar so small, after a few months, it looks like a mere wrinkle on the person's side.
The ETS vascular stapler itself is revolutionary as, instead of getting up close and personal with his hands in the patient, it allows the surgeon to stand a short distance from the area and do everything with minimalist methods.
I think this is the right product
The kidney is then taken to the recipient, an incision is made at the lateral part of the abdominal muscle (just outside the lining of the muscle you use when doing sit ups), the surgeon makes a 'pocket' to put the kidney into, plugs it in, and (in theory) the kidney should start working immediately.
It's said, in most cases, the recipient should start feeling the effects of the new kidney working straight away as their dodgy blood gets filtered.
Although the patients will have been in the hospital since about 7am, getting tested once again just to make sure they're well enough on the day, then prepped for surgery, the actual operation takes about 1 - 2 hours.
Both patients are then taken to a special care unit specifically designed for renal patients and placed side by side. This is to enable the team to monitor both patients carefully and allow the family to see both at the same time without extra fuss. It also allows both patients to see each other and know how the other is progressing which helps in the recovery process as they're not lying in separate wards, wondering how the other is.
On waking, both may feel drowsy and in some discomfort (the donor is described as feeling like 'they've gone 10 rounds with Mike Tyson and guess who won'). But that's where the morphine (controlled by the patient) comes in. Saves the patient distress of waiting for the nurse.
The recipient continues to undergo tests to ensure the kidney is working well in the new body and the donor recovers quickly enough to the point of going home the next day. Then 1 week of rest, potentially back to work after 2 weeks. Definitely no heavy lifting for 6 weeks to give the body a chance to fully recover, even though you feel fine.
There are check ups with the doctor, but these are to ensure the body is recovering smoothly from having just 1 kidney. Because of what the donor has just done, the doctors are available at all times for them, to ensure full and ongoing recovery.
As months pass and the body adjusts to this new situation, that one kidney gets progressively stronger and the doctors are there to ensure it's not pushing itself and working over time.
However, given the full body service the donor receives, donors are actually some of the healthiest people around as they're cared for and treated to ensure they can give a kidney, then monitored past the procedure.
In fact one of the live donor team specialists actually told us 'you might be tempted to give a kidney just to get the health benefits...but we recommend you do it to help the patient, not for your own personal benefits.'
Which is the reason why, despite all the physical tests, the donor still has to prove relation/marriage/friendship to prove the transplant isn't being done under pressurised conditions.
One surgeon gave a statement which actually moved me a little:
'A transplant is not a sprint...it is a marathon. A marathon which we will run together'.
This was another reason I was happy to go ahead with a transplant. You really feel like you've got epic backing from the doctors and nurses around you.
This is a subject I have to admit I was a little lost on and the speaking specialist finished with 'you've just done a class in O Level biology'. What I've written below is based on the notes I was able to make.
A mismatch between a donor and recipient can be made to work, but the immune system has the potential of causing issues for a successful transplant due to the HLA antibody.
1) Blood group - this is something you are born with and cannot be changed
2) HLA Antibody - this is acquired. On exposure to foreign (a body that's not your own) proteins, your body makes HLA antibodies. The level of antibody can be measured and in some cases removed to enable a successful transplant. It's the chemical reaction pregnant women produce on conception.
DID YOU KNOW: Japan believes that when a body dies, the organs become diseased and should not be transferred to another living person. Therefore, they do not have cadaver transplants.
This antibody factor can be a barrier to a potentially successful transplant. However, it can be worked around and 15% of operations since 2005 have been antibody based.
Here someone asked something I'd thought of a while ago, then completely forgotten: after my transplant, if I die of something completely unrelated, can my new kidney be reused?
Answer: Biologically yes it can, but the law won't allow it.
Short answer: No.
Am I the only one this doesn't really make sense to?
RISKS TO DONOR
Of course there are slight risks to donors. There's risks in everything medically based including taking paracetamol.
They might encounter high blood pressure and 15% of donors encounter Proteinuria (a minimal amount of protein in the urine), but there is medicine available to treat the issue and that's why the donor needs to be monitored after the transplant.
However, the risks donors face are usually down to genetics anyway, so there's always a chance they'd have hit in the future, regardless of transplant.
So...after the talks, which lasted from 1- 3pm, by which time I was exhausted, we then split off into groups with allocated donors/recipients.
My mum then asked a question which I'd thought of as a fall back option a while back but had completely slipped my mind: 'if the donated kidney fails later in the future, can my current kidneys act as a back up?
Apparently, after the transplant, my own kidneys slowly completely lose their own functionality and basically wither away.
This shocked me a little as I honestly thought they'd be there as a back-up. But no.
After this hour passed, we were then offered the opportunity to visit the wards, see where we'd be going for the transplant, pre and post, but I couldn't handle it. I've seen an ICU. I've been to plenty of hospitals and by now I was feeling so intense, I just needed to go home and stop.
Don't get me wrong, it was immensely interesting, but it's also a lot to face in one afternoon.
SO WHAT DID I BRING AWAY FROM ALL THIS?
Definitely a need to raise awareness for kidney failure. On a bigger scale. I know I'm already writing this blog to raise further understanding of what's involved, but I desperately want to do more. There were questions asked by the public, which I honestly have to admit surprised me, and I had a need to spread this information to those who wouldn't even think twice about renal failure.
Therefore, I've applied to become a Community Champion for Kidney Research UK. I've got free time, I've got the knowledge of the subject. Why not?
Medicine has come so far to make kidney transplants a walk in the park. The only difficulty faced is knowledge on the subject and encouraging people to donate.
And on that note:
NOTE TO THOSE WITH DONOR CARDS:
Tell your family if you have a donor card.
Despite having a card on them, a doctor still has to ask a deceased's family if they're ok with organ donation. It's the law. In shock of hearing it for the first time, families tend to instinctively say no.
So make sure family know what your wishes are.