The Trouble with Twins

Following Phil’s diagnosis, this year has been a time of profound change for the whole family. Phil’s life has been quite literally turned upside down. For Anne and myself, it has been a time of worry and exhaustion fighting seemingly endless battles.

But perhaps the most dramatic transformation has been that of Chris – Phil’s identical twin brother. Rarely a day now passes without Chris suffering a panic attack, leaving him fighting for breath and worrying that he has a serious illness himself and is going to die. Every night is the same – a struggle to get to sleep as various demons torment him in spite of our best efforts to reassure and sooth him. Invariably we wake to find him getting into our bed.

He is looking forward to transplant day almost more than anyone, and clearly sees it as an ‘end point’. Obviously it is not as simple as that – Phil will have to go through months’ of tests and ‘crisis episodes’ before any semblance of normality returns to his life. With his transplant being classified as ‘high risk’, things are likely to get worse before they get better.

The long-term impact of all this on Chris is hard to guess. Suffice to say Chris is going to need a lot of love, support and understanding from everyone in 2013.

The rigors of Christmas

Phil’s 48 hours of relative freedom came to an abrupt halt when he returned to hospital on December 27 for 2 consecutive days of dialysis. On day one, they had to shut down the machine after just a few minutes when he started having a rigor (uncontrollable shaking linked to high fever). The same happened on day 2, with temperatures over 40 and his normally stable blood pressure spiking right up too. He managed to do more dialysis than on day 1 though before going onto an antibiotic IV drip.

He’s back on today – Anne is with him today. His BP has been creeping up again. Let’s see how the next few hours go.

The clock is ticking…

A big worry right now is the constant bleeding around Phil’s permcath (a surgically implanted tube going into his heart which connects to his dialysis machine). Unlike the entry points for his peritoneal dialysis catheter and his first permcath, this one has bled virtually every day and occasionally produced pus. The tests show no infection in the line, so for now it’s being kept in.

The concern is that if this line ‘fails’ (eg infection, blockage), it’s not clear what the options are. It would be dangerous to retry peritoneal dialysis because that is where Phil had pseudonomas infection (mortality rate 30pc) which led to Phil’s horrible bout of peritonitis. His original permcath entry point can’t be reused (at least not yet), and his body won’t be able to go for 6 weeks without dialysis whilst a new fistula matures.

The consultants are hoping it lasts ‘as long as possible’, and if it doesn’t make it to Feb 19 (transplant date) are thinking of ‘non-invasive management’ to try to get him to the ‘finishing line’, as it were.

I guess it’s wait and see time..

Where does all the money go?

One of the things that soon becomes obvious about the Great Ormond Street Hospital for children is that it has a phenomenal PR and fundraising machine. There are sponsorship plaques everywhere, regular visits from ‘celebrities’, and some parts of the hospital almost feel as they are awash with money.

So where does it all go, and is it spent on the right things? Some of it is invested (understandably) in wining and dining donors and arranging photo-shoots in order to keep the funds rolling in. The facilities in some of the newer parts of the hospital are quite phenomenal and almost space age. Temperature sensors in cubicles which automatically open and close windows. Shower rooms with underfloor heating and no-touch taps. Cavernous theatres with giant, hi-res screens. Nurses with autonomous touchpads carrying patient data. Sackloads of presents for children at Christmas time and expensive decorations.

However the money doesn’t appear to be evenly, or sensibly, spread. Older parts of the hospital struggle in crowded conditions and with antiquated theatres. Even in the newer parts of the hospital, old problems persist whilst some of the innovations don’t make sense. For example, when connecting a child to a PD machine the first thing you do is close all doors and windows. What if this is precisely the time the windows decide to open themselves??!

In Eagle Ward, the lavishly-equipped new renal ward which has been open only a few months, there are staffing shortages in housekeeping and uncertainty over the future of playworkers. We have seen records going missing, lab tests being lost or results swapped with those of another child. Patient records contain potentially dangerous mistakes (ie incorrect medication being given, or necessary medication not being given). Essential drugs have not been available when needed, and in one extraordinary case there was not even a single tube of antiseptic cream to be found anywhere on the ward!

The lesson here is: GOSH’s powerful fundraising arm needs to be much more closely focused on the real priorities (including sensitivity training for key staff), and donors too need to be much more questioning. Both could start by asking the children and their families what THEY think…

Human kindness

One of the highlights of the year has undoubtedly been witnessing the kindness of friends and strangers alike.

You have sent me chocolate parcels and let me rant at you. You have ‘stolen into’ my home and done the washing up. You have left meals in my fridge and stepped in for me at work. You have posted encouraging messages and kept in touch. You have taken the boys off our hands so that Anne and I can have a few precious moments alone to work out our next move. You have offered Chris a home whilst Phil and I are in hospital.

A few of you I have never met. Some of you I have not seen for years. Several of you are dealing with medical and other challenges of your own. Yet all of you have made time and space to show your care and love for my family. Thank you.

The conversation …

With the date now set, we’ve been trying to find the best way to talk to our kids about the implications – for both of them.

For Phil, obviously, it’s a major operation and he will wake up with about half a dozen tubes and lines sticking out of him. He will be unable to move or eat for several days, and will have most of the tubes removed in that first week without anaesthetic. For the first couple of months, he will have to have blood tests every day, and may have ‘rejection episodes’ which means having painful biopsies done.

His brother Chris, meanwhile, will have to go and live with relatives for a while – at least during the time Phil is in intensive care with mum Anne looking after him 24/7 and whilst I’m in the other hospital.

Not an easy conversation to be having on the eve of Christmas…

Unnecessary surgery?

The test results are back, and it seems that the permcath surgically removed from Phil’s heart 3 weeks ago was NOT infected after all. It appears that he probably had some form of allergic reaction to the plastic, a reaction he has been having repeatedly since treatment began.

Had the consultant read the detailed immunoglobulin (allergy) test results done on Phil earlier this year – which showed readings of over 1000 (normal is below 90) – she would have known this was a likely explanation. Instead, she could not have shown less interest in them when I gave them to her if she had tried.

As a result, he has possibly had an unnecessary operation – with all the risks that go with it – that has been particularly painful, physically and emotionally, for him to get over.

‘The worst 6 months of your life’

Great Ormond Street is one of 2 London hospitals that performs kidney transplants on children. The other is Evelina Hospital, a children’s hospital set within St Thomas’. For a while it looked like Phil was going to have his transplant there. Until we met with the consultant that is..

At our first – and only – meeting, she coldly informed us that “the first 6 months after the transplant are going to be the worst of your lives”.

Don’t get me wrong – I’m not one of these people who needs soft-soaping. The opposite actually: I get continually frustrated at the doctors who think that their priority is to provide ‘reassurance’ as opposed to the facts.

The problem was with the way she said it. There was no “it’s going to be tough, but we’re going to do our best to help Phil through it all”. Or “there are going to be difficult days but we’re all here to support you”. Just ‘this is going to be horrible so get over it now’.

You really have to wonder how someone with so little empathy gets to work in a childrens hospital. Sadly, in my experience to date, I have come across several doctors who I seriously believe simply don’t like children! If that is really the case, what on earth are they doing there??!?

I’m not being bribed..honest!

Just been sent time and date for what’s called the ‘legal appointment’ – the last stage of the donor approval process. It’s a meeting with myself, Phil and Anne with an ‘independent assessor’ essentially to prove that I’ve not taken leave of my senses, am not doing this under duress, and will not profit from donating the kidney.

I guess I shouldn’t mention that Chris (Phil’s twin) has said to me that – because I’m giving his brother one of my kidneys – he’s going to start giving me half his pocket money after the op!!

Christmas break

Phil just setting off with Anne to do his Christmas Eve dialysis while I spend the day with Chris. We’ve got 2 days clear of dialysis then back at the hospital Thursday and Friday. Looking forward to our 48 hours of freedom!