Marshmallows ‘n Jazz

Two parcels from the US arrived on my office desk yesterday. One containing large numbers of chocolate marshmallows. The other a selection of the finest jazz. Both were for Phil, sent at his specific request.

The chocolate marshmallows are to help swallow the cocktail of immunosuppressant and steroid pills Phil will have to take every day after the transplant, and make the experience much more palatable. Finding chocolate marshmallows has been extraordinarily difficult. Eventually two sets of American friends (one currently living in the Middle East) tracked down manufacturers as far away as Guatemala and arranged for supplies to be sent to us. Now THAT is great investigative work.

The jazz comes from a British friend, now living in the US, who got in touch to say he would like to send Phil something. After speaking to Phil about it, I told my friend that Phil was a great lover of jazz music – not knowing that my friend’s son was about to go to college to major in..yes, jazz! (How cool is that a subject to study, by the way?!). The two of them have put together a sublime compilation that has got Phil’s toes tapping and fingers clicking with joy.

To all of you, a heartfelt thank you. 

Updated schedule

We now have a bit more clarity on what the next few weeks are going to look line, which is good news. The bad news is that it doesn’t look like a lot of fun…

Tuesday 12 February is Phil and Chris’ birthday. The following day is a dialysis day. There is also the last meeting with the consultants, the final crossmatch test for both me and Phil, and a chest x-ray for him. We will meet with the surgeons and be asked to sign the consent forms. Phil will also commence immunosuppression intravenously. We will then all of us move into the hospital’s family accomodation that night.

Thursday 14 looks like the day we will have to send Chris away to live with the other family. That is going to be a very hard thing to do..

Friday 15 will be the first operation, namely to remove the permcath. It looks like he won’t be having a pict line after all (the downside of this is that he will instead have to have daily bloodtests for several weeks after surgery, and indeed on a regular basis thereafter).

Phil will have to be on strict dietary restrictions in the run-up to the transplant, as he will no longer have any way to do dialysis with the removal of the permcath.

Tuesday 19th is, of course, the big day itself. After saying my farewells, I will be driven from Great Ormond Street to Guy’s Hospital first thing in the morning. Phil’s operation starts at lunchtime, once my kidney is safely out.

He will have a number of tubes, lines and catheters inserted during surgery, which will then have to come out in the days and weeks that follow, some under anaesthetic, some not. They include:
– Feb 20: removal of naso-gastric tube
– Feb 22: removal of wound drain
– Feb 25: removal of neckline
– Feb 25-27: removal of catheter
– April 2: removal of stent

I will try to keep people posted as to his progress throughout both here and via twitter (@kidneedskidney).

Hydrate ‘n Citrate (The Wrong Kidney)

I’m getting through inordinate quantities of lemon squash every day on the advice of my kidney surgeon.. Allow me to explain.

A few years ago, I had an episode of renal colic. Nothing major (although extremely painful). But it has meant that when I was undergoing my donor screening, the renal angiogram picked up calcification in my right kidney. I was given 2 jerrycans and told to spend a weekend at home filling them up (I kid you not) in order to test my “propensity to make kidney stones”. Had the tests come back positive, I would have been ruled out as Phil’s donor. Fortunately they came back negative, although the journey carrying the jerrycans into Guy’s Hospital on public transport is one I will never – but would rather – forget…

The good news was given to me by my urologist, who curiously is also the kidney donor surgeon at Guy’s. However he told me that my right kidney had some residual calcification. So they would be removing that kidney to give to Phil, ‘flushing’ the calcification out before putting it on ice, boxing it up and sending it on its merry way to Great Ormond Street Hospital.

Normally it is the left kidney that is removed from donors. This is because it is easier to remove and with less risk of ‘collateral damage’ to neighbouring organs like the liver. Removing the right kidney can sometimes mean ‘open’ as opposed to ‘keyhole’ surgery, which can in turn mean longer recovery periods for the donor (especially if they have to ‘crack’ a rib in order to access the right kidney safely).

The urologist-cum-surgeon also advised me I should never travel in future to a country without expert urology services, just in case something does go wrong with my remaining kidney. And to drink copious amounts of lemon squash daily, both to keep me well hydrated, and also because the relatively high citrate concentration in lemon squash would help ward off the threat of any future calcification.

I have thus taken his advice, and to my new ‘Hydrate + Citrate’ regime, with gusto.

Thank you Heston Blumenthal!

Phil absolutely idolises celebrity chef Heston Blumenthal – so imagine his reaction when he received an early birthday present surprise today…sent by Heston himself!

Phil had written to Heston a few weeks ago, telling him about how hospitals like Great Ormond Street are unable to meet the dietary needs of children with his condition (Blumenthal made a brilliant programme on the subject at Alder Hey hospital a while back). He told Heston how much he too loves both science and cooking, how he had dreamt about doing secret projects with him in his ‘lab’, and how he wished they could make a low potassium chocolate birthday cake together.

This morning the postman handed Phil a personalised, signed copy of Heston Blumenthal’s “Family Food” book. You should have seen Phil’s face when he opened it and read what it said inside..!!

Thank you Heston Blumenthal for putting a BIG smile on my little boy’s face.

Birthday week

Phil turns 9 on February 12. The date marks the start of a week unlike any other for most children his age…

He will spend the following day in hospital on dialysis, and he and I will have our final crossmatch tests that same day. On Thursday he starts immunosuppression IV therapy in hospital, and the next day – Friday 15th – he will have a final session of dialysis before going into surgery to have his permcath removed and pict line inserted. (The permcath may have to be removed earlier however – he is currently responding to vancomycin, but if it flares up again he will have to have it immediately removed and another one inserted through his old permcath site, even though is still healing up. The new one would then be removed on Friday 15.)

There then follows a weekend of strict dietary restrictions, to keep his urea as low as possible, and then the transplant itself takes place on Tuesday 19th, exactly one week after his birthday. The following week, he will go back into theatre to have his neckline removed, and a few days after that it will be the turn of the stent to come out. There may have to be a biopsy operation during this period too.

We’re trying to organise something for their birthday before this all kicks off, although Chris is already resigned to having to wait until perhaps the summer to be able to celebrate. The big problem with having a birthday gathering is the risk of catching an infectious bug from a friend that could force the transplant to be postponed.

One thing is for sure – their 10th birthday next year is going to be a mega-celebration to make up for everything they will both have gone through in the 2 years since Phil’s diagnosis last year!

David

There’s a boy called David who had been doing dialysis on the same days as Phil. I have written about him before. David had been on the donor organ waiting list for over a year. Then just over 3 weeks ago, he got a call in the middle of the night – an organ had just become available and they were to get to the hospital asap. The transplant took place later that day.

We saw David a week later – he was on his feet, walking about, keen to be able to return to the terraces at Upton Park with his family to see his beloved West Ham Utd.

I was surprised to bump into David’s mum today. She told me David had suffered a rejection episode and was in theatre having a biopsy to see if the new kidney could be saved. His creatinine levels had apparently suddenly shot up, and he had gone into theatre with a fever from a viral infection. She looked exhausted, and was clearly worried. The day-to-day since transplant was taking its toll: surgery last week to remove the neckline, daily bloodtests, getting ready for the operation to remove the stent etc.

A kidney doctor once informed me that the 6 months after transplant “will be the worst of your life”. Three weeks in, I suspect David’s mum would concur. “Life was easier under dialysis”, she confided quietly. I sincerely hope things work out for David and his family. But today’s crisis is a little reminder that once the transplant is over, the battle is far from won…

Decision Day

Evenings before dialysis days tend to follow the same pattern. Replace Phil’s dressings and clean his permcath. Pack food, books and other bits and pieces to while away the hours. I go into the hospital with him on Fridays, and theoretically work from there, so my briefcase is ready by the door too.

However this Friday will be a little different from the rest. Not only will a psychiatrist be coming to see us in order to recommend drugs to help both Phil and Chris through the next few weeks. But the consultants will also be examining Phil’s infected exit wound, and deciding when to remove his line. The current plan is to surgically remove it on Feb 18 – the day before the transplant – but the danger of infection spreading means he may be headed into theatre as early as next week.

Phil will also still need surgery before the transplant to insert a pict line, plus an operation shortly after transplant to remove the stent connecting the new kidney to his bladder. That will make it 7-8 operations in less than 10 months for a boy who this time last year was a picture of good health. Such a rapid, and dramatic, transformation has made it all the harder for him to accept what has happened.. and the difficult path that still lies ahead.

Little wonder perhaps that tonight (it is now 1.15am) it is his turn to join me on the insomniac’s couch in the lounge…

Countdown jitters & tears

With less than 4 weeks to go until the ‘big day’, it is all starting to get much more real for everyone – and nerve-wracking.

For Phil, the big worry right now is the period immediately afterwards during which he and I will be apart and unable to see one another.

For Chris, it is altogether more dramatic. For the first time, he told me last night – through bitter tears – that he didn’t want me to die. He was particularly worried because “I can’t yet cook properly and look after myself if I am all alone”. He is also worrying about how he is going to be able to look after me “properly” when I am discharged.

It is crushing to see an 8-year old beset by such fears, and being forced to ‘grow up’ so prematurely. However much reassurance I and Anne give him, I know that the weeks and months ahead will be as tortuous for him as they will inevitably be for Phil himself. 

Sibling Stress

Chris – Phil’s identical twin brother – has been the one who has probably found it hardest to cope with the changes that have been forced upon us since Phil’s diagnosis. Less than a year ago we were living in Dubai where the boys were surrounded by their friends and enjoying life to the full. Today, he makes the ambulance journey 3 times a week with his brother and Anne/myself to Great Ormond St Hospital where he is surrounded by seriously ill children his age, and where we struggle to keep him entertained and to keep up with his education. He is going to have to be sent away to live with another family while Phil and I recover from surgery and Anne is by Phil’s bedside. ‘Home’ right now is a tiny rat-infested apartment in north London, where he and his brother share a box room.

In recent weeks, it has become all too much for him. Violent outbursts. Insomnia. Various signs of disturbed behaviour. To date, the response of the hospital’s child psychiatrists has been to recommend sleeping pills. Today, belatedly, they have started to address the issue, although it is not clear what form the intervention – which starts this Friday – will take.

Chris – like Phil – has been an innocent victim of kidney failure. It is time the health system properly recognised, and responded to, the tremendous impact such a serious illness can have on siblings. And on identical twins in particular.

4 weeks to go – what to pack?

The transplant is exactly 4 weeks today, and I’ve started making some lists..

Things to take Phil include a portable chess set (he likes beating me) and a magic set so I can perform tricks for him when I’m discharged. We’ve got a netbook for Chris, and have loaded skype onto it and taught him how to use it (he’s going to be living with another family for a while). A new box of books for both of them arrived yesterday. Must remember to pack their favourite soft toys and some lego.

I’ve bought a mifi device for Anne so she has got internet access and Phil can watch CBBC on his ipod at the same time. I’ve got a dongle for my laptop plus my iphone, and have been advised to pack a small cushion as apparently it helps when going to the toilet after the op. Will buy some elasticated trousers so I don’t need a belt, and pack easy-to-pull-on clothes.

Any good ideas for other stuff we should all have with us??! Suggestions welcome.