Sunday, December 31, 2006

Michael

Our friend Michae S, at harefield needs some prayers now. He has had 3 vad failures since xmas eve. his heart is now unsupported. not yet on the list as he has an infection. He isnt looking too good. Please prayer he can keep going till he gets back on that list.

Monday, December 25, 2006

A Gorgeous photo


This is Nicole. This picture was taken in the summer at Peters brother wedding. She was a bridesmaid. Its a gorgeous picture, and i just want to share it.

Sunday, December 24, 2006

Merry xmas everyone!!

Not much has changed here. the usual.

BUT we have been doing some stuff for Live Life then Give Life campaign, so its been a frenzy of photos, video interviews and phone interviews. (wil ldo links later)

We have a photo session pencilled in for wednesday, but Serena has bashed her nose, has a small alceration across the bridge, and two lovely black eyes [groan]. Kids eh!

Merry Xmas to all our readers, and especially to all those on the list and their families. Without their support, Harefield Hospital and our wonderful network of friends and family, I may not have been able to keep sane (no snickering in the back there). You are all amazing, and deserve the greatest gift of all. LIFE.

Sunday, December 03, 2006

still here, still waiting

That is all.

well no not really.

Life is still the same as always. nothing has changed. We are getting closer and closer to xmas. And as everyone keeps terlling me, 'its the season for it' with all the xmas parties and drunk drivers etc. but to be honest, i dont think it will happen this side of xmas. Its just a feeling i have.

Thursday, November 30, 2006

tick tick, tick tick, tick tick beeeeep

How long can you hear a noise before it becomes normal? Peters machine constanting ticks, and beeps when it gets unplugged to move about, change batteries etc.
And even though he has been home since August, and he has had the LVAD since July 2005, I am STILL not used it. I know when i work in Safeway many moons ago, the checkouts would do that annoying beep whenever you scanned an item. And at least once a day you;d get a witty(or so they think) customer saying 'I bet you hear that noise in your sleep? ha ha ha'. And really you want to say 'oh yes, the annoying voices of customers regulary haunt me in my dreams' but you dont. You say 'Oh you get used to it'. And i na way you do. But then Safeway undated the till system. And the new scanners had a little button you could press to change the tone of the beep. Oh what fun! So instead of 'beep beep', you can have 'blip' 'beeep' or a little tune if you could get the sequence of button pressing right. So you couldnt ignore the noise, because as soon as you get used to one set of beeps, the gap year student working there would have a fiddle with the box. But why would a gap year student want to work in a supermarket in the middle of hertfordshire? Are they meant to be going backpacking and experiencing the world?

if only there was a button i could press to vary the noises the LVAD makes, could make life more interesting....

Wednesday, November 22, 2006

Dead veins

Peters veins have finally given up. they cant get blood out of him for co-ag tests (twice weekly). They attempted to get blood 6 times, twice out of his foot!! So he is now on fingerpricks tests for his anti-coagulant tests. but even that failed yesterday. 5 finger pricks, and no reading. So what next? ah ha, we heated up his hands, (with the aid of my gothic style fingerless gloves), and tried with a tiny needle and a syringe. So they managed to get enough for yestedays blood tests. (for those that are interested his INR level was fine, so no adjustments are to made to his warfain meds.

Hopefully things will improve soon on the blood situation.

Tuesday, October 24, 2006

Some of the hardest updates are when no words will help.

Peter was at clinic today. A time to meet up with old clinic friends, pop into the ward that was his home for 16months. Last clinic was 5 weeks ago, when we learnt that Tyronne had passed away. Today, we learnt that Brian passed away on sunday. So many lives lost through lack of donors.

All the harefield angels, RIP.

xx

Tuesday, October 03, 2006

Just a little rant.

Things are bothering me a bit today, dunno why but here goes.

please dont look disgusted when you see my Peter out and about, he is not a freak, and yes i know you can see his blood, but so what. yes it does tick all the time and it is loud, yes it did keep me awake for a few weeks, but not so bad now. He can talk, its only his heart that is bad, and his memory is poor due to his stroke but you can ask him directly himself. No, we didnt know he would be like this. Yes he is on the transplant list, and no we dont know when iut will be. Yes i know someone has to die so he can live. I try not to think about that bit too much. No, i dont think he will die.

And yes he does take sugar in his tea.

Sunday, October 01, 2006

Better late than never.






seeing as i am here adjusting things today (Nicole and Lauren are at MIL's, and Serena and Peter are napping), i though i better get these pictures up from the fun run.

Never lie on the floor with children about


Lauren is on my legs pinning me to the floor, and Serena is on my back giving me cuddles.

Peter is home again


He came home friday night. No idea what really happened with regard the bleeding, as everything came back clear. His dressings will be done daily for a while. But he is doing well. bit sore from all the prodding and poking, but ok.

The picture today is an oldie, its over 4 years old. Peter had been diagnosed 6 months previously, but looks so healthy. That is a very young Nicole with him. I love this picture, makes me feel all warm and fuzzy inside.

Tuesday, September 26, 2006

Peter is back in hospital


Lazy sundays. lovely lazy days of doing nothing, going out for lunch sometimes and havign someone cook for you.

But as soon as we order, Peter pales and feel 'odd'. But being a man who loves gammon, he carries on with his meal, call his mum afterwards to arrange for his dressings to be done after the football. I start to bathe the 3 cherubs (they were being lovely, so were cherubs not the usual monkeys). Just as i pop the littlist one in the bath, his mum calls me into Peters room. the bathroom is only 2 steps from peters room, so I tell nicole to keep an eye on the others. Peters mum is concerned about the LVAD site as it doesnt seem right. She thought it may be the wadding stuff of the dressings. So i HAVE to have a look. In the 16months Peter has had his LVAD I have never seen under those dressings. not once. But i was brave, and i didnt faint. The top tube from the left ventricle was a mess. There was lots of clotty blood all down the tube. i went back to the bathroom and then i had to call the on-call transplant co-ordinator at harefield, and get her to call Peters mobile so he could explain the situation. two minutes later, another shout, to get Peters stuff packed as he needs to go in. I get the kids bathed and dressed for bed in record time (including hair washing and headlice check, the joys of having school and nursery aged children), and the bag ready to go. So Peter goes back to hospital, Serena is stroppy (18months old and just got used to having daddy home), Nicole is upset, and lauren, well she doesnt care as long as she gets a cup of milk before bed.

At the hospital, they redo his dressing as he is pouring blood. they remove the clotty stuff, do swabs, bloods and murmur about his thyroxine messing with his warfarin. At midnight, INR level comes back as 3.7 which is within range. just. So not the thyroxine causing a problem.

7am monday, more bloood pouring out, more clotty gunge removed.

5pm same as above.

11pm same as above.

But today. no excessive bleeding. So no packing of the wound needed. infections levels are fine, no infection present. INR is stable, no problems there. everything is fine. but he cant come home till the results of the swabs come back.

maybe in time for another lazy sunday eh.

Sarah

Friday, September 08, 2006

HAREFIELD FUN RUN PLEASE SPONSOR US!

www.justgiving.com/misdee2006

Peter is doing the fun run with his LVAD :)

me and the 3 young ones are going as well.

Wednesday, August 16, 2006

Peter is Home!!!



And getting back to being a daddy. teehee. Thats Serena being thrown about, and dont worry, the bag and her mouth were empty, so not a choking hazard :)

Friday, August 11, 2006

An online friends husband died this week on holiday.

Feel really really sad about it. he was fairly young, and fit. They think he had a heart attack or stroke. I cant put into words how upset i am for my online friend and her dear 2 little girls.


But the thing that really mad me sob, is when she typed that she felt sad that his organs were unusable for transplant, and as he lay there dead, she thought of me, peter and the girls. Someone else says i should be proud of the fact that I have highlighted the needs for organ donors on the sites i use. But i feel terribly sad about it. When I have been urging people to sign up, and they have got their families signed up etc, i never imagined that one would pass away. I know its the circle of life, and that for peoples lives to be saved, we need people to die, but its so so hard to deal with.

So for Anna and her girls, I am praying for them return safely to the UK on sunday, and for enternal strength in all of this.

xx

You are truely loved.

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

ITS NATIONAL TRANSPLANT WEEK

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.

Sarah

Thursday, June 29, 2006

I have just cried my eyes out.

I havent cried so much at a TV programme in ages. I justwatched 'who gets the heart' on channel four. seeing Peter Field, it bought back some very strong memories and emotions. I have gotton so used to waiting now, trying to remember life before LVAD is hard. I cant remember what its like going out with no worries and no cares. I have to carry my mobile at all times, i worry if i do go out and lose signal, I paniced this morniung when the phone rang at 6.30am, turned out serena had hit redail and was chatting to peter on the phone. better than dialing 999 like she did last week.

just want a 'normal' life again, to be a family again, to be able to carefree-ish again.

when will that call come?

Sarah

Thursday, June 22, 2006

I have lost my glasses.

I have spent the last 2 days looking for them. they have disappeared. So tomorrow, when i was meant to be driving to harefield, i am going to be going to town to order new glasses, again. bah bah bah. i am going to need those straps that go round my neck to keep hold of them arent i?

Tuesday, June 13, 2006

This is basically a log of Peters 1st call and the emotions i was feeling

I was at home with the kids. this links to a site i use and the nights events unfold on there.

http://www.mumsnet.com/Talk?reverse=1&topicid=138&threadid=68761&rnd=5626131422390286

i just read through it myself and sobbed :(
www.thetransplantlog.com

This is a on-going art project that is being done at the harefield transplant unit. Some of the pictures are really moving, the sound isnt working atm unless you are using a MAC apparently, but should be done soon.

Tuesday, May 30, 2006

Oops, real life got in the way.

Its late. very late. I should be asleep, but am trawling through transplant blogs, uk-transplant site, justine laymonds site, throatec etc, trying to remind myself of why we are doing this and going through this hell. Why? To be a proper family once again, to have my husband home, and for our girls to have a daddy again.

Nothing has changed much. Peter is still in harefield. we are still waiting for funding for his carers so he can home properly. We are still in limbo.

But i am getting better at tackling the M25 ;)

Tuesday, April 18, 2006

Two transplant in one night!!

Not for us tho. T, another vad patient had his transplant early sunday morning (easter sunday), and another young lad was called in as well. Amazing, and what a day to have it done.

wishing them all the best, and prayers and thanks with the donor families as well.

xx

Sunday, April 02, 2006

I am not very good at blogging.

I keep meaning to update but get sidetracked. Once again I am ill so am not allowed near the hospital. i have lost the hearing in both my ears as i am so bunged up. its driving me mad.

Peter has done his 5 escorted visits now, He has walked to the village with his mum, and i have taken him to Rickmansworth Lakes, (aerodrome i think its called), Uxbridge, The Coy Carp for lunch and his nurse Louise bougt him home for lunch one day which was lovely. Lauren got a bit confused and asked if he was all better now, bless her. Nicole was very excited as it was the day after her birthday as well. And Serena? Well she was the most excited of all! she squealed in delight when she saw it was Daddy getting out of the car, and crawled up the front path to greet him. It was fantastic.

He has also done 2 unescorted trips out. So only another 3 to go then him coming home will be a reality. We have to sort out carers, equipment etc etc. So its all pretty full on here atm.

Will do more in the morning. off to take my dud ears to bed. :)

Sarah

Friday, February 24, 2006

So so tired.


Ihave been so run down lately, the kids have all been ill and we havent made it to harefield as much as we'd had liked to. Peter is doing well though. His mum is going to learn how to do his dressings over the next fortnight or so, there was also meant to be a meeting yesterday with th OT and everyone about getting him home. guess i need to get a move on with switching rooms about. this is gonna be fun!

And there is Serena again. It was her 1st birthday on the 21st Feb. Peter found it hard going as he has most of her 1st year of life in hospital. He has missed so much of her and the older 2 growing up, so i have tons and tons of photographs uploaded to a personal album, so when he comes home he can see them all.

Wednesday, February 15, 2006

A Little model, maybe..........

Peter has been progressing well physcially. His machine has been a bit 'off' though. It keeps going into fixed (means a fixed amount of blood will be pumped via the machine rather than adjusting for activities like walking where he'd need more blood pumped, ) mode which is worrying. His eyesight hasnt recovered yet from his stroke back in November.


And theres little Serena. I was just curious if she'd be good enough to be a model, so emailed her pictures off to a few agencies in london. And today we met with one. They are interested in Serena, and want her on the books. I am still not 100%, so am going to leave it a week or so, but Peter says do it, he wants his little girl to be a star.

Tuesday, January 24, 2006


Still waiting, still here. not much has changed.
Ah look, a picture of the man himself lol. looking surprisingly bright. How can it be 8months since he was admitted to hospital? Its gone so fast in some ways, and so slow in others.

Monday, January 09, 2006

I have been so behind with keeping upto date.


So what has been happening? Well we did the local paper story, then we got a call from The Sun also wanting the story. So just before christmas we did the interview and heaps of pictures. The story isnt in The Sun yet, but i had a phone call today to say she is putting it forward this week, so hopefully soon.

Peter hasnt been great, but not too bad either. But i have hardly seen him since before christmas. On the 23rd December Nicole went down with chickenpox. So as the other two were incubating the illness we have had to give Peter a wide berth. Serena and Lauren got them on thursday last week. Serena was really bad, and got a secondry bacterial infection so is on anti-biotics.