With Phil’s discharge into the family accommodation on Thursday, we were able to spend Easter together under the same roof: the first time all four of us have done so for some time. A slight increase in Phil’s creatinine on Wednesday – and the fear of an early rejection episode, biopsy etc – thankfully came to nothing when Thursday’s bloods showed a dip in his levels. Friday was Anne’s birthday – giving the Easter weekend ‘reunion’ all the greater poignancy.
Phil, meanwhile, is going from strength to strength. He is still puffy from both the steroids and the second operation (on his heart vessels) on Tuesday. He is still a little sore, and things like sneezing can be painful. But his scar is healing wonderfully, and his walking is less and less of a stooped shuffle as each day goes by.
Moreover, he is happy. Happy at life after dialysis (and tubes, and infections, and multiple operations…). And happy that he will always have a part of his Dad with him. As he quipped to me today: “You can be in two places at once now Daddy!”
It’s still early days, of course, and Phil is looking forward to the first day when he doesn’t have to go into the hospital proper for yet more blood tests. But given everything that went before, for now the calm is blissful…
Phil is having surgery first thing this morning to have his permcath removed, and metallic stents inserted into the blood vessels going into his heart.
Blood clots had formed in those vessels, caused by the various permcaths used for dialysis. The damage done means he will not be able to have a dialysis fistula when his new kidney eventually fails.
He should be out of theatre by late morning. This is operation no.9 since May. We still have the removal of the stent connecting his bladder to the new kidney to come. This will be in about 1 months’ time.
I had a check-up with the kidney transplant coordinator at Guy’s today. My various incision wounds are all healing nicely, with no sign of infection. I hadn’t even noticed I had one to my side, used to insert the camera and lights, until it was checked! Blood pressure was good too.
The pain is much better. I get this weird feeling of my insides moving around when I’m getting up or sitting down. Obviously there is a ‘gap’ where the kidney once was, but apparently this has more to do with the need to immobilise the liver as well as the bowels because it was a right-hand kidney.
In the main I just feel very tired all the time, and moving in any direction is a slow, cumbersome process as I am still quite stiff. Apart from that, I am belching quite a lot (this is because the gas pumped in to visualise the different organs is coming out), but I can shuffle a little faster with each day that goes by!
The really good news is that the weight I have lost means I now have a perfect BMI!!
Chris, Phil’s twin brother, returned to us yesterday. He has been staying with a dear friend of ours in Derbyshire who dropped everything to give him a loving home, a busy schedule to keep him occupied, and oodles of reassurance so that Anne and I could focus. We will be eternally grateful to her.
Chris came back relaxed and happy, and is now busy keeping an eye on me and helping me with the things I can’t/shouldn’t do eg heavy lifting. He is proving to be a conscientious assistant, helping me to get to Guy’s Hospital this morning for my check-up, bringing me drinks, opening doors and more.
Thank you friend 🙂
Phil took his first, tentative steps today. Anne’s eyes were wet with joy. Phil himself was beaming gleefully. It’s wonderful to see him getting stronger by the day. The catheter and canulas have now come out.
Most of the umpteen monitoring and IV machines filling up the room have also been taken away. Phil himself is talking about how happy he is about the closing of this chapter, and the beginning of a new one.
The pain is a lot better today too. He is now able to use the bathroom on his own. He can still feel the weight of the new kidney in his pelvic area, and it is causing him a little discomfort.
Phil’s only major cause for complaint, though, is that the surgery to remove his permcath can’t come soon enough. However he will be operated on first thing tomorrow to have this plastic protrusion in his chest removed. He will simultaneously have a stent inserted into the blood vessel to keep it from re-clotting.
I bet you anything that by the afternoon he will be out of bed and challenging me to a shuffle-race down the corridor!
For those of you involved in a similar process (or simply interested), I’ve just tweeted a pic of the donor surgical incisions. (@kidneedskidney)
It shows where the keyhole instruments were inserted above the navel, and the access point opened for the surgeon’s hand. As well as the wound drain, you can also see the arrow drawn on me to remind surgeons which kidney to take! (If you look really carefully, you can just about still see the word ‘RIGHT’ next to it!)
I didn’t think I would post it here as I didn’t want to spoil your Sunday lunch! More seriously, its only really going to be of interest to people in a similar situation. If this applies to you, I hope you find this useful.
As ever, I’m always happy to answer any questions.
In the immediate aftermath of the transplant, Phil could barely talk. But he made one special request of his mother – to go online and order a medal for his Dad. He gave it to me yesterday with a big, big smile.
I was quite choked. He had it inscribed with a special message. Once again it goes to show what a loving, grown-up, selfless, brave little boy he is.
None of this is about medals, of course. It’s about his well-being, his future. And that big, winning smile of his…:)
Some people make the mistake of thinking a transplant is a happy ending. Let’s be clear. It’s not.
In the best case scenario, we will go through it all again in about 15 years time. And in that same best case scenario, Phil still faces months of needles, battles against the twin threats of infection and rejection, surgery to remove lines and tubes..and this is on top of the pain and discomfort he feels right now.
But is it worth it? Ask Phil. Today he told me to my face that he is happy. Happy that this is the beginning of the end. An end to a life spent mostly inside a hospital. With lines and tubes being constantly being surgically inserted into and removed from him. The humiliation of being unable to leave his bed, of not being able to do the things other children his age can do, of having to explain the protrusions from his body.
Right now, Phil can barely move for the pain. But he says he is happy. That says it all.
It was truly wonderful to be reunited with Phil yesterday. My wife met me at Great Ormond Street’s reception. From there I couldn’t shuffle fast enough to the ward and along the corridor to his cubicle. He was lying there beaming, face towards the door. They had taken him off the monitor as his heartbeat had gone right up!
It was physically a bit of a struggle for him to reach up, me to reach down, and the two of us to actually be able to hug one other. But we managed! It was so good to see him the flesh, although he was clearly still in a lot of pain. We spent a good bit of time together, and he even had a giggle, although that proved to be incredibly painful for him.
Anne then instructed me to get some rest and took me back to the family accommodation. She has helpfully propped open all the doors inside so I can shuffle from room to room. However I can’t open the front door so she has to come and get me to let me out!
I’m just about to go back over (ie be collected by Anne). Phil has had his wound drain out this morning, and drunk a cup of tea. He is using his painkiller button a little less, and is going to be getting out of bed for the very first time shortly.
I’ve reached a couple of milestones of my own this morning, having been to the bathroom on my own for the first time. The ongoing pain is definitely easing, although it is still very difficult to move let alone walk. Coughing is very painful too. I am also discovering the joys of daytime TV…
Chris is going to rejoin us on Sunday afternoon, so he can help keep an eye on me so that Anne can continue to focus on and support Phil.