Tuesday, July 18, 2006

Peters article in The Sun

this was printed on thursday the 6th July. Thanks to Jan for typing it up for me. I will get the article scanned in a uploaded somewhere soon hopefully.

What began as a bad cold has left young father of 3 Peter Williams fighting for his life on an artificial heart machine. Today he will have been on the machine for a year but time is running out because doctors don't know how long the artificial heart can keep him alive. A transplant is his only hope. Peter's problems began in 2002 with a common cold which he couldn't shake off. His wife, Sarah recalls. "It was like a really heavy cold, but it just went on and on." Eventually it became so hard for Peter to breathe that he went to A&E. There, x-rays revealed the virus had damaged his heart muscles, a condition known as cardiomyopathy. Every year around 5000 people develop the condition but what causes it is often a mystery. In rare cases, one of the common cold viruses, named Coxsackie’s, is known to spark an attack. BHF cardiac nurse Judy O’Sullivan says “cardiomyopathy is rare and it’s even rarer to get it from a virus. For very few people the virus may affect their heart, but even fewer suffer permanent damage”. Peter’s doctors prescribed the blood-thinning drug warfarin to take the pressure off his weakened heart and he was able to go home. But 27-yr-old Peter was then struck down by a series of infections which worsened the damage to his heart and he has been in and out of Harefield Hospital ever since. There have been spells of relative good health which have allowed him to leave hospital to see daughters Nicole, 6, Lauren, 3 and 16-motnh-old Serena. But three times he has also suffered the disappointment of being told a donor heart was available – only for doctors to find it was not suitable for transplantation. Peter’s condition continued to deteriorate and as the left side of his heart got worse, the healthy right side had to work harder and harder. As a result it would sometimes beat dangerously fast. To stop this, doctors implanted a cardiac defibrillator in March 05 to shock the heart back into rhythm. The implant bought some more time, but by last July it was going off so frequently that doctors had to put him on an LVAD – a left ventricular assist device – to take over the work of that side of Peter’s heart.
In most cases, this involves implanting a small pump into the patient’s chest. But Peter was so seriously ill he need a larger version which he carries with him at all times on a small trolley. It means Peter, of Welwyn Garden City, is no longer confined to hospital and can spend some weekends at home with his family. Misdee says "They told us Peter can be treated like this for maybe a year, but there is a risk of blood clots, strokes and heart attacks." Doctors have already had to replace parts of the device, and what Peter desperately needs is a new heart. Misdee, 26, says "It’s very hard. Each night you pray ‘Please let there be a heart’. Then you think, ‘My God, I want someone to die’. I don’t really, but I don’t want Peter to die either. His little girls need their dad."

Monday, July 17, 2006

How do you cope when you are extremly fed up of waiting? i am still exhausted. Wednesday is a non-transplant day for me. no talk of it, no thoughts of it, nothing. I am going to try and have a somewhat normal day. i may take Lauren and Serena to the farm if it is a bit cooler out. I may actually get some time to myself. I need to do this. transplants/donor register has been my life for so long, and i basically havent taken a day off for years. and i am falling apart at the seams.

so with all that, weds will be the day for the call wont it?

Sunday, July 16, 2006

MY family montage

I have been working on this for a little while. due to many many photos i have, i decided to start this one with the birth of our third daughter, Serena. The photos are actually in order, and there are photos of Peter, one of which may be distressing to some people, as they show him in end-stage heart failure. There is also many pictures taken in hospital post-LVAD op, which are ok. Please view and feel free to leave a comment.

Wednesday, July 12, 2006


Justine has got her new lungs (Sunday morning call for her) and should now be settling back into the transplant unit. But there are so many other people still waiting and its driving me insane. I don't know how much longer we can carry this on for. I really don't. I just feel so emotionally drained and exhausted. I don't know what each day will bring, I panic if the phone rings, or if I get stuck in traffic. I am constantly on the go, on high speed mode and no stop control. I barely sleep, even when shattered the sleep I get is restless, its like I cant shut down properly, because if I do then I may miss that call.

Watching the transplant programs made me realize how much I need to be at harefield when the call does come in. I need to be there to see him into theatre, to hold his hand as he goes in, to kiss him goodbye. I need to do that. People say my #1 prioity must be the kids, and they are up there at #1, but so is peter. They all need me equally but for different reasons. I don't know if I could sit at harefield for the full op, but I need to be there for that moment.

please, phone ring, please.