Phil’s Big Day Out

With 2 hospital-free days ahead, we asked Phil what he would to do on his first day off. Today marked the 6-week anniversary of his transplant – an important threshold as it meant he was now able to go to public places and be around other people.

His response was unequivocal. He wanted to do a day trip to our hometown of Gosport to see the sea and play with his friends. So off we went.

First stop was Titchfield to see some good friends we haven’t seen in a long while (and who – when Phil was first admitted for surgery – let themselves into our home whilst we were all at the hospital, cleaned our kitchen and left cooked meals in our fridge 🙂 ).

Then onto Stokes Bay beach for an ice cream and a game of stone skimming before descending on the home of Phil and Chris’ best friends. The four of them spent the next 2 raucous hours just trampolining and laughing. The laughter didn’t stop when they paused for tea as they told each other joke after joke.

Today was a massive outpouring of a joy that had been waiting, bottled up, for far too long. On the long drive home, Phil even managed to devour the best part of an Arthur Ransome novel. All in all the perfect day by his standards!

I haven’t seen Phil as happy as he was today in almost a year. It clearly meant the world to him being back in his home environment, even if we’re not quite home yet.

But not long now, though, son…:)

6 weeks and counting!

It’s exactly 6 weeks since the transplant today. Phil’s creatinine yesterday was an excellent 43, which means he can have 2 days clear of tests.

The isolation restrictions start easing today too. He is allowed on public transport as of today, for example. So we’re going to have a family day out today, away from the hospital, just the 4 of us.

It almost feels like a bit of normality is starting to creep back into our lives!

What my son really thinks…

A local journalist was in touch with us today. He’s doing an article promoting organ donation and encouraging people to register as donors.

He had several questions for Phil. I won’t spoil it by revealing the whole interview. But here are a couple of excerpts:

Reporter: What do you think about your dad giving you a kidney?
Phil: It’s a bit like recycling! And it means me and my Dad will always be together.

Reporter: What would you say to other children who might have to have an operation like yours?
Phil: I was really worried the transplant would hurt afterwards but actually it hurt a lot less than the other operations I’ve had. So don’t worry about the pain, it hurts a lot less than you think.

Wow.

Big Phil exactly 1 month on

At exactly this time one month ago, Phil’s surgery was wrapping up. I’ve just taken this pic a few moments ago 🙂

1 month anniversary

It is exactly 1 month today since Phil received his new kidney. There is certainly some cause for celebration. The kidney is working well. Phil’s creatinine has settled in the mid/late-40s (mine is currently 132!) There have been a couple of rejection scares, but thankfully both came to nothing.

It has, though, been an eventful month. Phil needed an operation exactly one week after the transplant because of two clots around the heart. Surgeons inflated one blood vessel and inserted metal tube. The other remains blocked. Whether or not it is a ticking time-bomb remains to be seen.

A few days later, Phil developed a serious – and potentially deadly – infection on the line linking his new kidney to the bladder. He needed emergency surgery, which fortunately was successful.

Another donor dad remarked to me yesterday that the period following his own young son’s transplant hadn’t been as smooth as he had been led to believe it would be. His son had a transplant 2 months ago, and has already had two biopsies.

Another parent – this time of a teenage boy who received a deceased donor organ at the beginning of the year – also told me that things were going far from smoothly. She went so far as to say that life had been easier when her son was on dialysis.

She is not the first person I have heard say that. And the renal ward at Great Ormond Street Hospital is full of cases where the transplant failed, or where there have serious problems following transplant.

I am grateful that – although Phil has had 2 operations since the transplant – that things are going well from at least a renal point of view. But his – and others’ experiences – are a reminder that having a transplant is not the end of the story. I still come across people surprised to learn that a transplanted kidney does not last forever.

If we are able to give transplant recipients the ongoing support they need, we need to understand that a transplant is the beginning of a new chapter. It is to be hoped that it is a better and brighter chapter. But it is one with its own unique challenges.

As I look at Phil 1 month on, it is clear he is still quite a way from having recovered from the transplant operation, and the side-effects of the drugs are plain for all to see. One person said to me a while ago we could expect to see him ‘dancing’ within days of his operation.

We have cause for quiet satisfaction, yes. But not for dancing.

Planning for life post-transplant

It’s now 4 weeks since the transplant. In a couple of weeks’ time Phil will have passed the critical 6-week post-transplant threshold. All being well, we will be discharged from hospital at around that time.

Once we are out in the ‘big wide world’, many of the infection risks remain increased, of course, but they will no longer be considered ‘excessively high’. This means Phil will be allowed to start doing a number of ‘normal’ activities, provided we are careful.

They include using public swimming pools (provided the scars have fully healed), visiting restaurants, going camping and fishing, and even visiting petting farms (provided there are proper hand-washing facilities). Group trips to museums are OK, provided the hospital and museum coordinate on precautions in advance, and that we have our clinic letters with us in case of medical emergency.

We’re not allowed to travel abroad for 1 year, and we have to avoid places here in the UK where there have been outbreaks of infectious diseases such as measles. If we have to visit a local hospital, we need to call Great Ormond Street first so that they can brief the hospital on Phil’s condition and case history.

Contact sports are out of the question, but other physical activities are permitted provided Phil is wearing a kidney guard. He is due to be measured up and have one fitted shortly. As the new kidney is in an exposed position in his pelvic region, any kind of impact needs to be avoided and reported.

Phil will need to avoid food with unpasteurised products and undercooked or raw egg. Barbecued meats are a risk. Grapefruit juice is an absolutely no-no, and marmalade should be avoided too.

We’ve been given a checklist of things to watch for which could be signs of kidney rejection or associated problems, and instructions to call the hospital at once if Phil exhibits any of them. The list includes fever, diarrhoea, vomiting, rashes, pain in his tummy or around the kidney, persistent headaches and coughs, and any trouble urinating or discoloured urine. We should also report any contact with someone with infectious diseases such as chicken pox.

With this list in hand, we are tentatively planning a short camping holiday after we’re discharged. We have bought copious quantities of sanitising gel and anti-bacterial wipes in anticipation! If all goes well, we’ll plan some slightly more adventurous trips.

After all, following the year that he’s had, we reckon Phil is due a bit of a break…

“It looks like a tree!”

I got a text message from Phil today. “Daddy your kidney looks like a tree!”. He was having an ultrasound at Great Ormond Street Hospital whilst I was the other side of town at Guy’s Hospital having a post-operative review.

His creatinine has come back under 50 today, and his Tac levels are spot on at 8.4. He is still moving very slowly and stiffly, but we’ve been told Phil will start to walk more freely in a couple of weeks. Tomorrow we have a meeting with the post-transplant team to talk about what Phil can and can’t do, when, and what precautions need to be taken. He is going to have a kidney guard fitted to protect his precious new organ from external impacts.

Scans show that the tissue beneath my ‘exit’ wound is healing, and the scarring is clean. I was told my abdominal pain will ease in a couple of months and I should be able to undertake normal activities from then onwards. My ‘Jerry Lee Lewis’ issue is likely to remain one for approximately another 6 weeks, though… On the plus side, I am allowed to start having baths again 🙂

So after a terrible start to last week, all is looking good this week. And if Phil remains stable, the 3-a-week tests may reduce to twice a week from next Monday. We’re not counting chickens yet, but..

A W..W..Weekend!

We’ve just done something we’ve not been able to do in a very long time…have a family weekend to ourselves!

That’s right. Phil is not only responding really well to treatment for both the pseudomonas and norovirus, his creatinine and urea levels are back where they should be. So the doctors gave him 2 days off from tests (just as well, as his poor hands and arms are black and blue from all the needles). And the weather turned for the better to boot! Phil was such a happy man..

Reality returns today, of course.. In fact, the day promises to be a particularly long one. There are ultrasounds to be done on top of the usual tests. And I’ve got a post-op clinic too (curiously the consultant I’m seeing is Phil’s transplant surgeon!).

Because of the errors with Phil’s Tac dosage, Anne will now wait at the nurses station every day until the test results come back from the lab so that she can review them with the on-duty doctor and ensure the mistakes aren’t repeated.

Here’s looking forward to the next weekend off!

Mistake after mistake…

The number of times we have prevented serious medical errors from being committed is extremely worrying.

Take just the last few days. My wife spotted that the stated dosage for Phil’s prophylactic antibiotic was double what it should be. When she challenged the hospital pharmacist, a frantic series of phone calls with the renal ward ensued. Finally came the confirmation – Anne was right. The dosages were halved.

Anne was also told by staff she had been right to have refused another antibiotic prescribed for Phil that – her research had showed – can damage kidneys! How this was missed by doctors on a renal ward is beyond me. Another antibiotic was immediately prescribed instead following her intervention.

On Friday evening I took the step of calling the ward on to see if the latest Tac results had come back. I did this as they had been high the day before, and we were sure the Tac dose would have to be reduced as a result or it would damage the new kidney. The Tac levels were still high, we were told, but there was no need to change the dose. Unconvinced, I insisted on speaking to the on-duty doctor. I was assured we would get a call back.

The call did indeed come…the following afternoon. A clearly embarrassed doctor said we should have been told the previous afternoon to STOP the Tac dose right away, and to sharply reduce it from then on…

It isn’t just that this is a regular occurrence – it is the fact that serious, not minor, mistakes are being made. For instance, Phil’s ENTIRE post-transplant immunosuppressant therapy (which had been signed off by the UK’s leading paediatric nephrologist) was found to be wrong and had to be completely changed after we spotted an error in it.

How many mistakes have we been unable to prevent? Well, for one thing, I now believe that a number – and possibly the majority – of the awful operations Phil has had to endure over the last year could have been avoided if someone had simply read his case notes and given him alternative treatments. Phil now has at least one heart vessel that is blocked with a blood clot, and another that has had to a metal tube inserted into it in order to keep it open, simply because of the repeated surgical interventions. Putting aside the needless suffering he has been subjected to, these are potentially very serious issues which he will have to contend with in years to come.

It seems that, to stay safe in Britain’s hospitals, you need to be a medical expert yourself. While surgeons and nurses are generally speaking on the ball, the weak link seems to be at the doctor/consultant level. The ridiculous system of constant rotation means there is no one single doctor who is fully and intimately aware of Phil’s case history and the specifics of his condition. We therefore find ourselves constantly having to brief – and correct – the latest new face who comes to examine Phil. Is it really too much to ask that they at least read the case notes before their visit?

The negligence in evidence extends itself to Chris. The appalling catalogue of errors and omissions by the psychosocial team shocked the hospital’s psychiatrists and have left our other son in an emotionally precarious state.

Anne and I are sick and tired of hearing ‘you were right to say no’, ‘you were right to challenge this’, or ‘you were right to bring this up’. We don’t want to be right. We want our sons to be properly cared for – and not put at risk – by the medical professionals we have entrusted their care to.

It is no more than what we have a right to expect.

Exhausted but happy

Phil started improving in almost dramatic fashion Thursday afternoon. His fever came right down, as did his creatinine (so the spectre of rejection was dispelled). There was still blood in his urine and his Tac levels were bouncing around. But his improvement was such that, by Thursday evening, it was felt he was well enough to be discharged to the patient family apartment. (The improvement is all the more impressive when you consider that on Tuesday morning the surgeons weren’t sure Phil was well enough for surgery.)

Phil and I decided to surprise Anne and Chris. Half an hour later, a beaming Phil was knocking smartly on the apartment door, which was opened by an astonished and delighted Anne. Phil proceeded to tuck heartily into a bowl of carbonara, and then went straight to sleep..for 14 hours!

In fact, sleep has been a major theme for us the last couple of days. I went for my first unaided and unaccompanied walk outside the hospital grounds yesterday. It was nothing major – I just popped to the bank around the corner. There were no incidents, although standing in the queue got uncomfortable. When I got back, though, I had a little lie down to recover…and promptly fell asleep.

Phil has been allowed a day off from the hospital today (thank goodness, as his hands and arms are so bruised I can’t see where they possibly take more blood from him, poor boy). It is just as well he was, as everyone slept in until 9.30am this morning! All except me, that is, who woke up as usual at 6am. However I made up for it by going back to bed mid-morning, falling asleep, and waking up at lunchtime.

Which all goes to show 2 things: firstly, how exhausted we all really are; and secondly, how well you can sleep when not constantly interrupted by bleeping machines and other hospital noises!