Waiting for the call.

Peter is doing well

2010-03-27T22:11:00.000Z

Some may know, he had a minor illness the other week. Minor for everyone else, big-un for him. He was off work for almost 2 weeks with it, lost a shed load of weight,. and got me v v v v worried.

He appears to be on the mend now, and is back at work.

Everyone else is doing well. I haven'ty accidently killed anyone by giving them allaergic reactions or anything.

Roll on Summer!

Breathe Easy Girls

2009-11-19T08:39:00.003Z

Its been an eventful last few weeks here.

The morning after bonfire night, Sophie woke up with severe breathing problems. I had her in my bed with me, as she had been coughing and snotty. Around 5am, I noticed her breathing was a little 'off' and her temperature was getting higher. I took her downstairs to get some calpol and her little chest was working so hard. She was having retractions around her neck and chest. So got peter to dial 999 whilsty i threw together some clothes and a bag.
Soph was very pale and lethargic and clammy, which is definatly NOT like soph, who is well, quite vocal.
Her SATs were 91, and i cant remember her resps/reps.
We were blue-lighted to a+e, and gave her a neb in the ambulance.By the time we arrived at the hospital her breathing was better, but she was actually wheezing quite noisly. By 10am, her breathing was a lot better and even normal. So we went home with an inhaler and spacer.

By 3pm, I noticed she was going downhill again, but the inhalers were working.

By 6pm, i wanted her back in hospital so called my dad to take us in. BIG MISTAKE. what shuld have been a 10minute journey turned into almost an hour due to traffic. I gave soph more salbutamol in the car, and we finally got into a+e after 7pm (after standing behind some parents who were discussing how to get their child seen quicker by saying they thought he had swine flu, though they didnt really think that [hmm])

A+E decided that they wanted to monitor a bit more, so put us in the waiting room for 40mins. By which point Soph was starting to struggle again.

After dosing her with Atrovent and Salbutamol and gettinmg her breathing under control for the second time that day, we were finally allowed out after midnight.

After a 10days on both inhalers Soph is feeling much better.

So thats 4 out of 4 girls asthma/asthma like symptoms.

New video 'Life After Transplant'

2009-10-25T15:00:00.002Z

I have been meaning to do this for ages. Finally got round to it last night whilst trying to adjust to the clocks changing.

Enjoy! Feel free to link it, and post it wherever you feel it should be.

LIfe After Transplant

Yesterday, Today and all the tomorrows...

2009-08-15T22:19:00.004+01:00

Yesterday was day of giving thanks, and remembering Peters donor and their family, who changed our lives forever. Their gift has been amazing and everyday, i look at my family and think how different things could be. Peter might not be here, Sophie wouldnt be here. It would be me and our three oldest daughters just muddling through and asking ourselves why the call never came.

But it came. And it was wonderful. Our lives were turned upside down, and in a good way for once. The happiness of everyone and the releif was tremendous. People were, still are, so so happy for us. I likened it at the time, as very similar to haviong a new baby, as everyone was congratulating us, and asking for news.

Somebody on Mumsnet.com wrote a wonderful little poem, about Peters Pink ears, as I was amazed at how the colour started to glow under his skin, right to the tips of his ears.

I know I’ve never met you,
And maybe never will
But I have read your story
And really got a thrill

To know your wait was over
A heart, for you, was found
And like Mumsnetters everywhere
I cheered and jumped around!!!

I check your progress everyday
Share Sarah’s joy and tears
But the news that really made me smile
Was that you had pink ears!!!

Today, we had a normal day. I took the girls to the library, we had dinner as a family, with Peters parents here, and Soph throwing her carrots on the floor. We had cake. Peter watched the football (his team lost, not a happy man).

Tonmorrow, we will take it as another day. If the sunshiones, then we will head out, maybe to the lakes. If it rains, then maybe we'll go to my sisters. But we will have fun regardless.

And now for some lovely photos. Rather a lot of them in fact.

wow!

2009-08-10T21:07:00.002+01:00

This has been an eventful month so far, and its only just begun.

After many years of Peter being ill, and me being his main carer, we have decided that now its coming up 2years post transplant, and Peter is almost back to perfect physcial health, we should be looking for work. So last week, i saw some jobs advertised on the Ocado website. Peter attended an open day on monday last week. He was completly honest with them regarding his past health problems and heart transplant. They have asked for a docs note to decv;are him fit to work, and if thats ok, the Peter has a job!!

Me however, i dont. I didnt even get an interview boo-hiss!!!

And on a down note, Baby Sophie's allergy test results are back. She is allergic to Milk, eggs and peanuts. boo!!!

Everyone is fine, Serena starts school soon along with the older two, and i can focus on Soph and finding childcare that works with Soph's allergies, for when i do finally get a job.

Life

2009-06-27T21:46:00.003+01:00

is normal.
Well normal for a busy family of six [eeek].

THis year we have been to Wales, and Skegness. Wales was wet, damp and grey lol. It took us ages t get there, and even longer to get back. Its not a journey I will be taking again whilst the kids are young (8hours in a car, with one crying to be fed every 30mins, one tantrumming cos its taking ages to get home, and one throwing up every 30miles was not fun, the other one was in grandmas car being good lol).

Skegness was good. But reminded us about a good suncream technique is needed. On the tuesday, we decided to go to the beach in the morning, and to be back in the shade at 12-ish. We put suncream on everyone. Peter slatered himself in the stuff. We went though over 2/3rds of a bottle on just one mornings application. Except Peter missed a patch on each leg above his ankle. So he had two burns on his legs. Very sore, very painful, and even now, 3 weeks on, they are a different colour to the rest of his legs.

Soph is growing. Slowly, but getting there. She has an allergy to cows milk, which we found out about 2 months ago, when I gave her ready brek and milk. We ended up in A+E, wieghing her to figure out an anti histine dosage for her. I thought soemthing wasnt quite right, as she is def more unsetttled than the other girls were, and is slow to gain weight (but has started to gain now i've cut cows milk out of my diet, and other dairy products). We are seeing a specialist this week to see about allergy testing, as i suspect she may have an egg allergy as well.

my sisters blog

2009-03-17T13:41:00.002Z

12 hours...

my sister has started a blog about her husbands battle with leukemia. she knows how much blogging helped me when peter was ill, so has started writing. its well worth a read.

sorry for lack o puncuation, am feeding sophie

My Brother in Law is very ill

2009-03-14T08:45:00.003Z

I cant believe I'm writing this. 48 Hours in and I'm still shell shocked.

My sister, Lisa, sent her husband to the GP last weekend as he has been unwell for a while, lost a little bit of weight and had a dicky tum. She thought he may be suffering from something like Coealics and a blood test was done on wednesday morning. Wednesday evening they had a call from the hospital; telling Darren his white cell count was very high and he needed to make an emergency GP appointment in the morning. 20 mins later the hospital callled back and told him to get in now! Apparently the nurse had never seen a cell count so high, his was 382!

He was put in a side room, and doctors starting talking about blood, bone marrow etc.

Thursday morning, he ws told, whilst my sister wasnt there, that he has Chronic Myeloid Leukemia. A bone marrow aspiration was taken thurs afternoon, and they should get the results in a few weeks to see how far it has progressed, but the general feeling is that this has been brewing for around a year.

He has been started on Chemo already, but due to bed shortages, he still isnt on the correct ward.

His leukemia is a bit of a rare one, and atm doesnt have a cure as such, but they can hopefully get him into remission and keep him there for many years.

Its all come as a bit of a shock as Darren is the last person you;d expect to have cancer. I know that sounds daft, as cancer is no holds barr, it can affect anyone, but he is a fot healthy young man, who loves the gym and takes care of himself. When my sister called and said he was in hospital i thought he may have fallen downstairs and broke his leg, i didnt expect this. No-one did.

2009-03-13T20:38:00.001Z

I've become a baby bore

2008-11-27T22:37:00.002Z

But just look at her, she is soooooo cute. So can you blame me for being a baby bore?

Sophie

2008-11-18T09:47:00.004Z

Well, our newest princess arrived on thursday 13th november, 7.07am, 9lb 2.5oz, born at home with daddy and midwives presents, and big sisters waiting in the next room to meet her. Was the most relax birth i have had, and would recommend home births to anyone.

I look at her, and think, without Peters donor, she wouldnt be here. She is a little miracle, and has the girls besotted with her. She has gorgeous chubby cheeks, a red tint to her hair, and the cutest nose. She has a chin dimple like my mum, a cows lick hairline like Nicole, big hands like Lauren, and cries like Serena. She loves to be held, hates sleeping inher carrycot or moses basket, so sleeps with me.

Introducing Sophie Emily

2008-11-15T11:04:00.001Z

Another part of pre-transplant life left behind.

2008-10-11T09:59:00.003+01:00

For 4 years, we, as a family, have been living in a disabled adapted bungalow. It was great, meant Peter could access all parts of the family home easily, and could partake in a normal family life as much as possible.

Last weekend, we moved to a 3 bedroom house nearby. A place with [gasp] STAIRS!!! The girls are finding it a novelty to say the least, and i had forgotton how much floorboards can creak. When the girls come downstairs in the morning its like a herd of elephants trampling down all at once.

We have a touch more space here, its not mansion size by any comparisons, but its normal. We no longer needed the bungalow so decided to give it up for another family that did. 3 bedroom bungalows are a rarity to say the least.

Another Spot the Difference.

2008-09-19T18:49:00.002+01:00

hehe.

Once more, our lives have been taken over with hospital appointments

2008-09-17T20:29:00.003+01:00

Dont worry, nothing serious and not to do with Peter, for once.

Two and a half weeks ago, Serena, our youngest daughter, had a small accident involving her fingers and a door. Seeing her poor fingers mangled was, for me, worse than seeing Peter's LVAD for the first time.

So on the 31st August, we spent 4hours approx in A and E having her hand x-rayed and bandaged. The following day, Laurens 6th birthday, I spent with Serena in another hospital waiting for her to have surgery on her fingers. She had two broken fingers, which were treated as open fractures, due to the ongoing bleeding, and her nails had to be removed under GA, false nails put in to act as splints, and repairs to the nail beds. Three days later was back in A and E as she had started to bleed through the dressings after falling over.

We went back last Monday for a check-up, and her fingers were quite bruised still. So she was bandaged again until yesterday. She has now had all her bandages removed, and her hand is looking a lot better than it was. The false nails will drop off within the next 4 weeks or so, and new nails will grow in, but this can take around 6months. We have to go back to see the plastic surgery team in 2months to check everything is healing nicely and growing back the way it should.

One year On

2008-08-15T08:17:00.002+01:00

Today is one year since Peters heart transplant.

Instead of tossing and turing for 5hours whilst waiting to hear if he was out of theatre, i slept last night. Admittingly I was woken early by Serena demanding shreddies, but the night was normal and non-eventful.

Today, instead of driving to harefield, I will be packing. We are leaving our disabled adapted bungalow to move to a normal house next month.

Today, I may even sleep in the afternoon.

Things have changed so much in the last year. Nothing in our lives is extra-ordinary, we don't go around savngs lives of others, or performing miracles. But life is normal. That is one thing that was out of reach for so long in our lives. Normality is a wonderful thing. It gives the girls a chance to play without worry, to see their friends, attend parties they are invited to, they go to school sometimes Daddy collects them, sometimes it is me.

A year ago none of the above was possible. We couldnt be sponteous, we couldnt go out if it was raining in case the LVAD got wet, A long day out meant taking extra batteries and peters power pack. Overnight trips were impossible. In the last year we have been to the essex coast a few times, We have taken the girls to Butlins for their first proper family holiday in years, for Serena it was her first real holiday with Peter there. Peter has come with me into London for my own hospital appointments navigating the tube system like any normal person. Imagine doing that with an LVAD! We have been to the zoo and the farm. Been having picnics and normal days out.

I hope Peters donor family can take comfort in the fact that they have given us a normal life back. A life that will be lived to the full, it may not be amazing by most peoples standards in what we do, but to us its amazingly normal and we are loving every minute. The small things we do in our daily lives which were impossible before and like little miracles.

Every day I wake up and check Peter is still there beside me. To see his sleeping there is just brilliant. We had to sleep apart for many years, with him either in hospital or in his special bed down the hallway. At night the bungalow is silent. No LVAD ticking away loudly reverberating down the hall. If i listen closely I may be able to hear the girls gentle snoring, but that is it.

Our lives are no longer dominated by machines. Peter is wire free, machine free and doing brilliantly.

Thank you for our normal lives, we are loving every moment.

xx

My Nephew is on the NHS at 60 years old website

2008-07-10T22:32:00.002+01:00

NHS 60 years old

If you scroll through the pictures until you come to a picture of a lad in wheelchair with a purple cast right up his leg, thats him!

He has cerebal palsy (spastic diaplegia), and recently had an opertation on his leg to release the muscles so his foot can finally go flat on the ground. He has never been able to put his foot flat on the floor, even with leg splints and botox treatment. Now he can. They are discussing operating on his other leg at some point as well. He is very smart kid (on the gifted and talented register at school), and totally amazes me with his computer wizardry. He is now coming upto his final year at primary school, and is due to star secondry in 2009, and has got into a very good school, which is also disabled/wheelchair friendly, so my sister (the lady in the picture with the baby) is very happy with how he deals with everything.

Its a great picture as well.

And that is baby Callum in the picture as well. I blogged about his very early arriveal back in sept 2007, well as you can see, he is just blossoming perfectly. He is such a cutie-pie!

Oopsy!

2008-06-15T20:28:00.002+01:00

Ok, i have been rather rather bad at blogging, but with good reason.

I spent some time last week at St Thomas' Evelina hospital having a special scan done.

But Evelina is a chidlrens hospital, right?

Yes

But it also is one of the best fetal medical centres for heart issues.

Caught on yet?

;)

I am now coming up for 18 weeks pregnant with child #4.

Its been very hard and draining getting to this point, I have suffered a lot of morning (haha, all day more like) sickness, dizziness and migraines.

But the scan last week was very good and very reassuring.

The baby's heart chambers all look good, everything appears to be th right size, arteries etc all looking good. Overall, my consulant there is very happy, and I have to o back in 6 weeks just for a check for things like holes etc.

So thats why i havent been blogging much.

:)

I'm so sorry for neglecting you darling blog...

2008-03-11T09:34:00.003Z

What can i say? life is hectic :)

Peter is now 6months post transplant and had his MOT recently. He seems to be progressing well, and should be starting cardiac rehab soon. He took a fall over half term whilst we were at the zoo with the children, and badly bruised his leg. Its quite scarey seeing a 6 foot tall man take a tumble, he had such a long way to go to hit the ground.

Serena is now 3years old. She had a lovely birthday, learnt to ride her mini-micro scooter, and is learning how to ride a bike.

Nicole celebrated her 8th birthday at the weekend. I took her and her friend Summer to see the film 'Penelope' which was pretty good for a childs film. It wasnt mind-numbly boring, and i didnt fall asleep. In fact I think I was more entranced than the girls were. OOps! Then we met Peter and the younger two girls for a late lunch at Frankie and Benny's.

I did take part in the Hearts first jog. sadly I am noty anywhere near my target yet, so wont be posting any pictures yet. to donate then go to www.justgiving.com/sarahwilliams4

New Uktransplant adverts

2008-02-18T10:19:00.002Z

Its Half Term Holiday

2008-02-10T09:24:00.000Z

It feels far too early for the children to be off school already, they were only there for 4weeks and 4days. But they are off, and we are busy planning a jam packed holiday for them, without leaving the area.

Peter is doing really well. His bloods and biopsies have been good with little or no rejection present at any time. He is out and about more often, and, this is a big AND, he has his driving liscence back. I can forsee there being loads of arguements between myself and him about who is going to drive places, so maybe i should get myself my own car. heh. But we cant really afford to run two cars, so i will just give in and let him drive. maybe.

The girls had their parent teacher meetings last week. And it was a joy to hear how well and settled they both are now. Nicole has reallyu blossomed in class and is now known as 'The Giggler'. She has gone from being very serious and easily upset into a real character. Lauren has settled in well, is steaming ahead through phonics, writing and maths, but is a bit of a perfectionist about her work. No idea where she gets that from...

Serena is still at home with us, but is starting Nursery in Sept. I dont think she can wait, lol.

Update on the weight loss.

2008-02-04T14:22:00.000Z

Just so you know i havent slunk off an eaten the whole contents of the kids selection boxes...

I have so far lost 1stone. It is going slower than I expected BUT we did ofcourse have Peters first Christmas post-transplant in the middle of it all so far, and many meals out with family and friends in the run up to xmas, and i just couldnt say no the double choc chip, extra choc swirl, flake and sauce ice creams on offer (ok an exagaration there lol), but i did manage to eat my way through many mince pies. Especially the lovely delux ones santa got left on xmas, and he didnt manage to eat them all so i had to help out...

I am back on track, and last month, lost 7.5lb so coupled with the 3 charity fun runs i have offered myself up for (like a lamb to slaughter) it shouldnt be so slow getting rid of another 3stone by october.

I have been a major exercise avoider for many years. Since I left school and discovered the delights of socialising and drinking mmmmmm nothing beats a cold pint in the pub garden in the summer. Anyway, i had forgotton how good exercise can be, the lovely rush of endorphins afterwards. I am sorely tempted to dig my skates out of the cupboard and race the kids to school when they are on their scooters. But i think i would embaress them if i try that now. I am loving running, but find i run better by myself with my own thoughts for company, plus ican swear under my breath without people who know me being shocked at my foul language as i swear myself forward and swear at my 'personal trainer' Rob on the ipod. Ok , iadmit it, I do swear too much in real life, but not around the kids. Back to running, i am trying to do a different route each night, to give myself a bit of variation. But tonight I have to fit it inbetween dropping Nicole off at brownies and picking her up two hours later. which is a bit of a pain as it means its a bit later that i like to run, and thyere are [gasp] people about who may see me. I;m not the worlds best runner, and am still very slow, but at least I am out there doing it this year and not just talking about it or thinking about it as i have been doing the last few years.

I will do an update on Peter soon, but currently he is in good shape with no problems to report. :)

2 Miles? are you sure? Blimey

2008-01-31T21:02:00.000Z

yesterday i went out for a run. well more of a walk/run/walkrun and so on, for 30mins. Afterwards i went to Mapmyrun.com and it turns out i covered 2miles. i am gobsmacked and well chuffed.

Tomorrow is Aquafit and a run, if i have enough energy.

2008-01-27T09:31:00.000Z

Run, Fat Girl, Run

2008-01-24T13:27:00.000Z

I may have done something very very stupid. Iam only week 2 into a 9week training progamme to run 5k. But somehow, last night, I signed up for 'Hearts First Jog' at Knebworth House on the 24th Feb. [cold sweat] I am not going to push myself to run 5k by this date, but will carry on training and hopefully do a lot better than i currently am running.

Basically, my new years resolutions centre around my own health and wellbeing. As well as finishing the bathroom lol. So I have also said I will run at this years Race for Life and Harefield Fun Run.

Late Happy new Year

2008-01-13T22:31:00.000Z

Christmas passed us by with no major incidents, no rushing to hospital, no worries at all.

we got a wii! so have been playing boxing, tennis, bowling etc.

New year also passed by normally with nothing major happening.

And now we are mid-way through january, and aside from it being very wet and cold, life is still good.

but roll on spring please! There is so much to do in the garden this year. :)

This may be my last post before Xmas.

2007-12-18T09:22:00.000Z

I am between Internet connections atm, and this one is a bit hit and miss atm, and the new one isn't set up yet and isn't likely to be running before the New year. But there is a something I have to say, and it needs to be done now.

This is our first Christmas after transplant. The tree is decorated, the presents are wrapped, the stockings have been dragged from the cupboard, the outside of the house is lit up with twinkling lights. I still have to get a small amount of shopping done (we are having Christmas dinner at peters parents house), and attend the last of the school Christmas plays and carol services. This year Peter is joining in with much gusto, and its beginning to feel normal. I am still a bit nervous as since December 2004 our lives have centred around hospitals and heart machinery. I think maybe its all going to be snatched away with a cackle and 'no you cant have a normal life'. Silly i know. But while we are preparing for our first Christmas with Peter at home and well, somewhere out there, is another family torn by grief, and facing their first christmas without their loved one. I don't know how much they know about the organs they donated, but I hope they do know that they have have changed our lives forver. They have given us so much, in one small but enormous gift. I still can't belive it, I know its been over 4 months, but its still seems so unreal. I am still staggered each day but the beating in his chest, the way he has more energy.

Each year, people are dying on the list, as less organ are suitable for transplant and list is getting longer. This year, Peters, Emilys and Oli's lives have been changed by life saving transplants, as well thousands of other people as well. But unless more people register on the uktransplant donor list, and discuss their wishes with their families, more people will sadly die waiting. We lost a few heart friends this year, and it hits harder each time.

Life wont ever be completely normal for us, but at least we have hope at long last.

2007-12-04T21:49:00.000Z

i think I have found the source of my cold

2007-12-01T22:51:00.000Z

check out those rosy red cheeks on Serena! bless her little cotton socks.

Oli needs some ....

2007-12-01T12:14:00.000Z

prayers, vibes, zapping, ohhhmmming or whatever it is you do to send healing thingys.

he is back in ITU, under sedation and fighting a nasty infection, he has also been put on dialysis.

http://smilethroughit.wordpress.com/

so do your work people.

I was right, I have a cold

2007-11-28T22:40:00.000Z

dammit!

sorry if anyone calls me up and i'm like '[cough] hello, no sorry cant hear you, my ears are bunged up [sneezes]'

ah well, life goes on, got to take Peter to get his blood pressure checked in the morning, and will stock up on lemsip as well.

goodnight [sneezes]

Today was a long long day.

2007-11-27T22:23:00.000Z

And I'm not feeling 100% so spent a lot of the day nodding off in the transplant clinic, and hiding behind a book as didnt want to give anyone anything of what i have. I'm not sick sick, but just not feeling right. But that could be because Serena has been unsettled for 3 evenings now with a low level fever and cough, and keeps climbing into bed with me in the night for cuddles awww.

The day was long. It started off badly when traffic near the M25/M10 near st albans almost ground to a halt. I knew then it was going to be a long journey. We started driving to harefield before 9am, after dropping the children off at school and Nanny's house. We got to harefield after 10.30am. Its normally a 45 minute journey. Peters bloods didnt get taken till after 12. Then he had an ECG and was told to go to lunch. after lunch he had an echocardiograme, but then the doctors went ion their lunch, so we went back to the pavillions for a drink. Peter saw the doctors and we finally got home as the children were having their tea. The miserable weather didnt help today either. And i dont like how early it gets dark (god i'm a misery old woman today lol). Bring back summer and light evenings. At least then the day doesnt seem over befor its begun.

Good news was peter didnt need a biopsy today.

Bad news? There isnt any.

:)

Back at harefield tomorrow

2007-11-26T21:51:00.000Z

Peters last biopsy two weeks ago showed mild rejection again. So tomorrow, we are back there for the usual round of tests. Hopefully, the non-invasive tests will show good results and the biopsy wont be nesscessary. But we are getting readyto be there all day.

So fingers crossed.

More Angels.

2007-11-24T15:37:00.001Z

Sadly, the young man i posted about on Thursday passed away after surgey (not transplant). I also learnt of another liver patient who passed away recently. To the young mans family, and the other young angels families I extend my love and prayers.

Sometimes, it hits me hard, that no matter how hard you campaiegn, talk about organ donation, and just pray, not everyone will be saved and given a new chance of life. I know how lucky we have been, to have this new life, and we are embracing as many moments as possible, and starting each day with a 'wow, it really happened'.

Its been 4 months now, and I still ask 'Are you sure you're ok doing that?' when Peter helps out at home. He collected the girls from school the other week by himself, walking as DVLA still havent reissued his liscence (he had to hand it over when he had the ICD fitted). He cooked their tea as well. I was driving back to harefield to give his 24hour holter monitor back.

I never thought that a 'normal' life could be so wonderful and amazing. It still feels like there are sunbeams all around us.

Just so glad that we have this chance. Because Peter was almost an angel too many times.

Another Superman. This time its Oli's turn

2007-11-22T12:33:00.001Z

I have been beaming since I read Emilys blog yesterday about Oli. He had a double lung transplant earlier this week after being on the list 2.5 years. Seems like a lot of 'long timers' on the list are finally getting their new chance of list (hello other Peter).

But as i learnt of Oli's good news, I was on mumsnet.com reading about a ladies friends husband on there who has just been listed for an emergency liver transplant.

So if you have ever thought of organ donation, and still havent gotton round to registering then please do, you can do it online, on the phone 0845 60 60 400, or by post if you pick up a leaflet at most GP's surgeries.

watch this and give someone a hug

2007-11-19T23:32:00.000Z

Late night ramblings.

2007-11-19T22:27:00.000Z

now, do i change the title of this blog? because we are no longer 'waiting for the call' but i dont want to let this blog go. I have really enjoyed writing things down and in some ways it has helped me keep my brain from turning to mush.

tomorrow peter has to go to the dentist. he is not happy about it. neither am I because his appointment is at 4pm which means I have to keep 3 kids entertained in dentist waiting room. oh what joy!

Callum's appointment is tomorrow morning. Maria is very worried, but trying not to show it.

Also slowly, 3 years worth of clutter from our home is disappearing. I'd forgotton how good Peter was at de-cluttering.

big catch up

2007-11-16T23:34:00.000Z

sorry sorry sorry

Ok. Little Sis Lisa, is out of hospital .she scared the shite out of us by getting really ill, reacting to every anti biotic they gave her, and finally having her gall bladder removed, as well as over a dozen stones, about 2 weeks ago. She is doing ok and slowly getting back on her feet. She amazingly managed to keep her breastmilk going for her little baby girl by expressing and is now getting her daughter back to breastfeeding.

Peter is doing well, but has toothache. and due to the fact he was in hospital for so long our old dentist has kicked us off their list, and we are now in the process of trying to find peter a dentist ASAP and having to pay for private dental treatment. which he isnt happy about doing, but tbh if it stops him going on about toothache i will gladly pay lol. (i have never had toothache, fillings etc so apparently i cant know how bad it is).

Little Callum came home after less than two weeks in SCBU. But he is having weight gain issues and only reached his birth weight from 6 weeks ago last week. He is dropping off the charts. So he needs some 'get fat quick' vibes from everyone. He is totally gorgeous and big eyed little boy. He makes me very broody, as does jasmine, but I think after having three girls, 3x9months of Hyperemesis Gravidarium, which puts me into hospital on drips, I can pretty much say, no way to baby #4. lol.

I have been learning how to face paint, much to my girls delight. Its good fun, and allows me to paint without yelling 'where my paint book/sketch pad' as i can do paint doodles and working out things on my hands, arms and knees lol.

Diet is going well, slowly getting there. i have also started aquafit classes which Peter finds funny as the receipt says 'Over 55's Ladies aquafit' He says either I look older, or I have been lying about my age ;) lol.

dont tell anyone but...

2007-11-05T23:11:00.000Z

i just ate 3 chocolate covered caramel digestives.

eeek!

SAW IV review

2007-11-03T10:00:00.000Z

i have no idea really as watched it behind my hands

A family holiday? surely not!!

2007-11-01T20:17:00.000Z

Oh yes!

last thursday night, we decided to go away for the weekend. Just us. (and the girls of course). No extra equipment, no wheelchair, no wires, leads, bottles etc etc. Just packed suitcases, buggy and went on Friday.

We went to Clacton, to my families caravan. Fully heated of course(because it was bloomin freezing at night). We spent saturday at the pier, taking the girls on rides, playing silly games, and eating out. We spent the evenings in the clubhouse, watching the kids playing silly games (the eldest two rock at the limbo lol, they have an unfair advantage as are hyperflexiable), and having a drink together. the girls played on the site, and we went swimming!

Life is slowly becoming more and more normal.

tomorrow, myself and peter are off to the cinema. To see 'SAW IV'. I want to take a cushion to hide behind, do you think they will let me?

Tomorrow.

2007-10-22T21:03:00.000+01:00

Tomorrow, channel 5 are descending on us. at 9am.

that is far too early considering it half term.

so i am setting the alarms early and getting the children off to my mums.

so best be off to bed now.

think they are aiming for the lunchtime news.

maybe evening as well.

Breathe in, hold it, breathe out and relax.

2007-10-21T22:17:00.000+01:00

Well, things with peter are going really well. low grade rejection, thats about it.

However, my younger sister (the one who had the baby girl), has gall stones. She has been in and out of hospital all week, in immense pain. She has been on anti biotics as her gall bladder is inflammed with some infection there. The plan was to remove her gall bladder once things has settled down a bit. She has multiple stones. However. At least one stone has moved and blocked a duct in her liver. She has turned yellow, ir peeing bright orange wee. So has been readmitted tonight, for observation. The hospital are hoping the stone dislodges itself overnight, otherwise tomorrow she is facing surgery tro go in and remove the stone.

Poor sister.

See that new little widgety thing down the side bar there>>>

2007-10-18T13:08:00.000+01:00

Well ,that is keeping me very motivated now. There is no need to worry that any amount is too small, every penny helps.

I have now lost 6lbs. i had a bit of an all-out-week last week, involving film previews, and 3 meals out. oops. I also killed me back on thursday last week, and couldnt exercise. But still lost 2lb.

Yesterday, my new fancy bike trailer arrived. Its for Serena to ride in on the way to school. Nicole and Lauren pelt down the school on their scooters, and I'm usually about 100m behind them yelling 'slow down!' Today I kept up all the way, and managed to cycle all the way back up a very small slope. with no pushing allowed. My thighs hurt already, its been so so long since I've riden a bike, but it was great fun and very invigorating. Serena loved the trailer, but wasnt so keen on her cycle helmet. I hadnt been able to find one for me, as i have a big head (oi, no laughing lol), but managed to get one today in tesco. Finally. so this afternoon I will be fully kitted up to do it all over again.

Hopefully will get my half-stone on wednesday next week.

Why am i struggling to update?

2007-10-10T23:13:00.000+01:00

lately I have been struggling a little bit, and not being good at getting my head around stuff. the last few weeks, months even, have been frantic. There is now denying that. I have been pulled in all direction by many people who need me, and finally have a little bit of breathing space, and am feeling lost again. Life is returning to something resembling normal, and I cant seem to move on completly from the place we were in before. I still go to ask Peter if he has his back-up, mobile etc. And I still worry about leaving him alone in the house. This transistion from carer-of-husband-in-need-of-a-new-heart to normal wife is very very hard.

Also, Nicole has become very anxious and weepy lately. She is scared she will die, that Peter will die, that i will die. She has been asking about how parts of the body work and whats happens if they stop working. She is so scared, and has cried a lot over the last week.

I just want to weep with her, as a seven year old shouldn't be feeling like this. She shouldn't have had to deal with this at all. I know we have had a happy ending, but there was so much stress into getting to this place.

Last week, I started a sponsered slim. The link is in the post below. I am aiming on losing 4stone in 12months, but hoping to beat that. Today was my first weigh in, and I have lost 4lb.

rasing more money for harefield

2007-10-04T12:08:00.000+01:00

Updating takes so long.

2007-09-28T19:44:00.001+01:00

sorry about lack of updates, loads been going on, will tell you why at the end of this update ;)

Right, as Bev has commented on, the valganciclovir, well yes its very very expensive (60 tablets cost over £1000). Our GP has perscribed it, but has said he will have to go to the PCT about funding for peters medications. The fact is, that his cocktail of drugs to keep him alive are expensive, and not soemthing that apparently comes out of standard budget. So they have to request that they can get funding for them. In the end, its a load of red tape, they wont stop the medication, as they cant do that, and we will get the pills, wether its from GP or the hospital. So thats a small minor headache and generally not thinking about it, except for going 'How much?! really? bloody hell!' lol.

Peters biopsy went ok, no more now for a fortnight, just twie weekly trips to harefield for bloods and clinic.

And why have i been slack at updating?

well, as on a post made last week, I have a new neice called Jasmine. But on tuesday, arriving at 33weeks, 7 weeks early, callum came into the world. Callum is my new teeny tiny nephew, who mum is my big sister Maria. Callum is brother to Connor, Beth and Megan, son to Jason. He is not actually a bad size for a 33weeker, weighing in at 4lb 8oz. He isnt in an incubater, is in a heated cot only, no breathing assistance needed, and agpar scores of 8 +9 (i think). My sister has said i can post the montage here as well, so have a peek.

Photo and video editing at www.OneTrueMedia.com

Long overdue proper update

2007-09-27T09:48:00.000+01:00

Peter is at transplant clinic today. He will be having another biopsy to check on rejection. He really doesnt like this procedure, and itr tends to keep him at the hospital all day. His mum has taken him as otherwise I would have to get a sitter for the children and it disrupts thenm badly. So whilst Serena is glued to High School Musical 2, I am going to attempt to update properly this morning.

Peter has been home about a week and 5days now. We spent the first week making daily trips to Harefield still as he needed blood work done to check his tacrolimus levels, and his dressings done on the VAC pump. One week ago, he finally became wire free for the first time in over 2years. The VAC was removed as his hole from the LVAD in his side were healed enough. I embaressingly didnt notice straight away when he walked in the house with no VAC, it was a strange moment when i realised there were no wires commected to him. On friday last week, his wounds were checked and they have been ok-ed. So he also had his first shower in over two years at the weekend.

Life is slowly getting more and more normal. Peter is still tired at times, and occasionally falls asleep mid afternoon, but its getting less and less as the days wear on. The girls are loving him being home, and things are more relaxed round here.

I have had people ask if he will have to take this cocktail of drugs for the rest of his life. yes he will. Rejection of the new heart can happen at any time. anti-rejection drugs will always be part of his life. Peters donor also had something called CMV, which, for most people is pretty harmless. However for a transplant patient it can be quite nasty. He is on a drug called valganciclovir which apparenly quite expensive.

(serena acting up so will add more later)

New Life

2007-09-21T20:23:00.000+01:00

Introducing a new addition to the family. This my new little gorgeous neice, Jasmine, who was born early this morning. My sister, Lisa, had a quick labour, and Jasmine is a sister to their other daughter Tanisha, and their doting dad Darren.

Now we are just waiting for my other sister to give birth to her baby boy (get a move on in a couple of weeks Maria), and i think we are all done for a while lol.

Jasmine reminds me of Serena when newborn, with all that hair!

Summing up the last few weeks in pictures

2007-09-17T22:17:00.000+01:00

AKA I can't be arsed to type it all out at the moment, sorry!

Pink Peter is Home!

2007-09-16T11:11:00.000+01:00

Oh yes! four weeks and 4days after transplant and He has come home. i cant belive it. He really is superman.

He came home last night, and we had a lovely normal family meal together, watched a film together, and went to sleep in the same bed together. i slept all night for the first time in months, and woke up feeling a lot better. The niggling stressy headache which has pained me for months has gone. I feel lighter, and life feels good.

There is still a lot of things to be sorted out, daily runs to harefield for the time being to check his tacrolimus levels, and he does still have the VAC pump attached. But life is vaguely normal now. He has been in the garden with the girls, helped them play hide and seek, slept in a normal bed. He is not yet completely wire free, and I know when that happens it will be a major major change. There are no machines support his lovely new heart, it is doing the work all on its own now.

Its truly amazing, and I keep pinching myself as it doesnt seem real.

Go on dig deep and sponser us for the fun run tomorrow

2007-09-08T20:22:00.000+01:00

i am very very very unorganised this year (no surpise really) and almost said no to this tomorrow. But i have 3 little girls who love taking part, and who have a thing for all things to do with harefield. So I have to dig out my comfortable shoes, and I will be walking the route with Serena, Lauren and possibly Nicole as well. We havent been in training, and are doing this to purely raise money for harefield, plus we get to see Peter at the same time, which is always a bonus.

So dig deep and sponser us through our just giving page.

http://www.justgiving.com/misdee

Its Life Jim, but not as we know it

2007-09-04T21:05:00.000+01:00

Where do I start?

Lauren turned 5 on saturday. And even they Peter is still in hospital, i know that future birthdays for all 3 girls are very likely to be celebrated at home, not on E ward. Its still very hard to get my head round, that life has changed and we all need to adjust. Nicole had a mini-strop on the phone to peter earlier and demanded he came home 'NOW!'. If only tantrums worked haha.

haha!

2007-09-02T11:05:00.000+01:00

two steps forward, one step back.

2007-08-31T23:39:00.000+01:00

Peter is still progressing well. However there are two small minor issues which have appeared this evening.

The first, is the dreaded 'rejection' of the new heart. This isnt a case of heart being flung out of his chest in a moody strop, but just a small battle with his body vs donor heart. Its graded as grade 4, the lowest there can be. The hospital are monitoring the situation.

The second is, he has a small bleed on/in his new heart. The hospital feel this is likely to be where they did the biopsy yesterday to check for rejection. Again, he will be monitored over the weekend and extra echo's will be done to keep a close eye on the bleed.

ah life :)

2007-08-30T20:10:00.000+01:00

I last updated this breifly on Monday, late at night, after coming home after seeing Peter for the first time for a week. The photo just shows a fraction of how far he has come in two weeks. He is now walking around very short distances as well as working on walking the corridors. Today he should've been doing stairs, am waiting on an update on that.

He now has a new portable VAC pump. Which makes farting noises. Very social machine that one. I went him with him to have an ECHO done yesterday, and it hit me, I could go and get a drink if i wanted, i didnt have to stay there with him. He no longer needs 24hour care from an LVAD trained person. Which means, if we run out of milk/bread/wine(for me lol) then i can just pop out and get what we need. no more family trips to the petrol station just before bedtime. No more calling his or my parents to bring us stuff when its raining and he cant go out. This new wonderful heart in his chest, isnt just changing Peters life, its changing everyones life around him.

I went to see him by myself yesterday, and we (physio and myself) managed to get him to go outside in a wheelchair for some fresh air. It was a lovely day, not too hot, not too cold. It was nice to be outside. No LVAD ticking along beside us. No worries about batteries. Just the farting VAC pump. He also walked from beyond the transplant unit doors back to his room. He still has loads to do. But its wonderful to see how much progress he is making.

Today I took the girls in to see him. Serena was so unsure, all her life she has known Daddy with an LVAD as it was implanted when she was 5months old. The ticking black box has always been there. She tried to use the trolly as a baby walker many times. She set that alarms off on the spare machine by switching it on, oh her face when that happened was so so funny, poor baby. So today. Daddy-LVAD=confused child.
Then Laurens turn. I thought she would be ok, as she is 5 on saturday and a bit mroe aware. But she was really really not sure about the situation at all. She wanted to go straight away. Itstook some persuasion and reassurence that everything was ok before she would even give daddy a hug. But she did do it. It wasnt untill i really thought about it, she was only 2years old when this all started to get really bad. So its understandable really.

And Nicole, well she was pleased as punch to be seeing her Daddy again. She has always been a daddy's girl, and they have a great relationship, even if she is 7, going on 13. lol.

And to top it all off, I have just had a phone call rom a local ballet school about places for this coming term for Nicole. She has been waiting for a place for a while, but i was always unsure about starting her on dance classes whilst peter was on the transplant list as everything was so unpredictable. Everythign seems to be coming together nicely.

Lets Play Spot the Difference

2007-08-27T21:55:00.000+01:00

Peter taken 6 days before transplant

Peter today.

I haven't caught any bugs yet

2007-08-26T13:54:00.000+01:00

But the sudden change in weather did take me by surprise, and I was concerned I was getting a high temperature yesterday, untill I realised it was purely enviromental lol.

Peter is doing ok. His overnight feed did leak last night, so he woke up in a puddle, not at all pleasent. He says yesterday was a restful day. The Pacer has been removed but the pacing wires were still in place, not sure why, maybe as a precuation, or maybe they just forgot as lunch came round. His morphine has been stopped and is now on co-codamol. His feet are still puffy so is still on frusemide, and peeing greatly. Catheter is still in place, mainly due to frequency og peeing due to above diuretic.

I am hoping to see him tomorrow evening, for a light meal and trifle. I haven't been able to buy him a card, so tonight will try and get creative and make him one.

He doesn't know it yet, but he is also about to be hit by loads of cards sent by online people. hehe.

If you do want to send Peter anything, cards etc, then please feel welcome to contact me djmisdee@hotmail.com and I can pass on details. Please remember that flowers are not permitted on the ward.

many thanks for all those people checking on here for updates and on the various forums that myself and his parents use, you have all been a great support to us over the last few years, and it means a great deal that people are still thinking and praying for Peter during his recovery. Its like we are riding a wave of good thoughts, wishes, prayers and vibes.

sarah

After 5 days of dosing up my kids, mopping up sick and trying to keep them happy

2007-08-24T20:50:00.000+01:00

i think I have finally flipped out. lol. I ended up sobbing watching 'Oliver Twist' last night, err yeah ok then hmmm.

I am slowly going mad. I have barely steppd out the front door all week. I still cant go and see Pete, so am relying on his croaky husky voiced updates each day. He is doing well, is seeing physio, SALT and the usual round of people most days from what I gather. He was hoping that the temp pacer would be removed today as well. So slowly wires are disappearing.

I have had a couple of visitors this week, very few actually crossed the threshold into sicky kid bug hell though. Peters mum, bless her, popped round yesterday, but I couldnt let her in. Felt awful, but I just can't risk Superman getting ill at this stage of recovery.

He says he is being told that everything is going well, he just doesnt feel like it is yet. He did, however walk down the corridor today YAY!!

WEll thats three down, just one to go!

2007-08-23T12:11:00.000+01:00

Nicole now ill as well. Same bug as the other two. So i called my mum to bring round supplies ie milk, calpol and neurofen (i should buy shares in the last two items), and have set up a new meds timing sheet on the fridge door. Because i get easily confused.

I am hoping that i wont go down with this at all, as Monday is our 8year wedding anniversary. And Peter is still on very soft foods, so it looks like out meal will consist of...

CHOCOLATE TRIFLE!!

And i am not complaining, yum yum.

And how is the young man himself? He is doing well, has been on the exercise bike now. He does still have his feeding tube in, and also a new machine is being used. If you are of a squeamish nature then please do not read ahead.

Where Peters LVAD was, there are now two big holes leading to the diaphragm. They need to get these to close on their own without leaving any infection. When they removed the LVAD they packed the holes for a couple of days, then removed the wadding and bagged them to let the blood etc drain off. Yesterday then started using the vac pack to draw the gunge and stuff off and encourgae it to close up. They pack the wholes with foamy stuff, Peter says they pack it right up and it hurts. then they attach the pump and it sucks all the nasty stuff out. It will be used for about 3 weeks.

Media media media

2007-08-21T12:05:00.000+01:00

This is great fun. Every single day, I have been getting phone calls, telegrams and emails from various media departments. Seems that Peters story, and his unrelenting fight to survive has touched the hearts (no pun!) of thousands. The Daily Mirror reported that since Peters story first appeared in the newspaper on the 9th August, 25,000 people signed the organ donation register in 6 days!. WoW!! Bloody bloody hell. Whenever people have questioned my need to do this media stuff, i always said, 'if we can get just one more person to sign, then we'll be happy' so you can imagine how much this means to us.

There wasnt anything I could do to help Peter when he had dilated cardiomyopathy, health wise. I looked into stem cell treatments, but he was in the end stages and needed a heart transplant by the time I got the information pack through. I joined online support groups, I disregarded the 'most people die within 5years of diagnosis of DCM' that some sites were still saying (this was before ACE inhibiators and meds like carvidalol, betas etc), i looked up imformtation for LVADs read and digested as much information as possible. I asked questions, researched and researched. Bugged Em at LLTGL on msn, who was great and got me even more information regarding LVAD's and transplant list criteria, I think I made a general pain the ass of myself to everyone who ever met me about this, but all I had in mind was the survival of my husband and all the other people i met who had DCM. I cried when members of support groups passed away, when others got their transplants with relief, when a new young lad, younger than peter got admitted to harefield with DCM and had a pump as he was so so young and his whole life ahead.

DCM is a terrible illness/disease, and affects more people that thought. There are 4 different types, Arrhythmogenic Right Ventricular Cardiomyopathy, Restrictive Cardiomyopathy,Hypertrophic Cardiomyopathy and peters condition Dilated Cardiomyopathy.

I know I am generall waffling again, but its what i do best lol.

As soon as Peter is back on his feet and back home, I will carry on, and hopefully make another montage soon.

Because I think it may have worked.

Sarah

Still not well.

2007-08-21T08:40:00.001+01:00

Poor baby. ok i know she isnt a baby, but a very big 4year old, but she is really bad again today. she is getting pins and needles in her hands as well which is strange. Her temperature is back up as well. Neurofen seems ok with her, yesterday was the first time she had had it since being diagnosed as asthmatic earlier this year. And as some people know, with our girls, one day they can fine with soemthing, the next another allergy will appear. Its great fun. Not.

Lauren still burning up

2007-08-20T17:50:00.000+01:00

I have started her on neurofen as well as paracetamol now which is a tad risky as she is asthmatic, so I am keeping a close eye on her to make sure she doesnt start wheezing or doing anything strange.

Now some of the best news all day. Peter is back on the WARD!!! YAY!! He is still on infection control, so cannot really take the girls in yet, but that is just a precaution really.

Obviously, looking at lauren this evening, i dont think I will be able to go in tomorrow. Her toe looks ok, so am guessing its a bug of some sort. she looks so sleepy on the sofa, but wants some custard for her tea, so best be off to feed her something as she isnt wanting much really.

I cant do a proper update today

2007-08-20T10:05:00.000+01:00

Lauren isnt well. she woke up of a temperature of 38.4C, so she is calpoled up and we are playing a waiting game. She has been on anti biotics for an infected toe, and my gut feeling is it has something to do with that, but i just dont wanmt to risk it in case its something contagious.

Peter is making good steady progress. Still isnt eating much, but is drinking well. They are hoping to get him to the ward today, if there is a bed available. All drains are out, and he is looking so much more rosier than the picture in my previous posting.
Hopefully I can get some more information later on to type up. I hate being here and not being there. Its at times like this I wish I had a clone. I feel useless and like I am bailing out. So many times over the last two years I have had stay away from Peter due to things happening here, and its a right pain. I wish life could be easier, but I guess we will muddle through as we always do. I feel like I am just not doing enough, but am trying to hard to keep everyone happy and am pulling myself in two at times. My heart says go to him, my head says dont, if it isnt her toe then i could be incubating something myself and give to him. How long do i leave it? Is 24 hours enough, or do I wait 48hours? So so hard.

This was in the daily mirror on thursday

2007-08-19T22:42:00.000+01:00

Dad Peter Williams has finally been given a new heart after an agonising three-year wait for a donor.

Peter, 28, was yesterday recovering in intensive care after a ten-hour transplant.

And delighted wife Sarah said: "I've got my husband back and our kids have got their daddy back. There's a long way to go before he's fully fit and I'm still keeping everything crossed. But we've finally got something, to celebrate."

Advertisement
The Mirror told last week how Peter needed to find a heart within weeks if he was to survive. He was hooked to a machine that kept him alive for a record 763 days - but left him unable to play with daughters Nicole, seven, Lauren, four, and Serena, two. Ex-supermarket worker Peter, of Welwyn Garden City, Herts, suffered a bout of flu six years ago that caused his heart to swell.

His heart rate soared from 60 beats a minute to 220 and he had to be put on the machine to control his blood flow.

Now the transplant has brought hope of a new life. Sarah, 27, said: "Peter's expected to be in intensive care for at least seven days before he'll be allowed home. But we're past the worst of it - the waiting and the false alarms. He should soon be able to do the normal things a dad does."

Another good day. I think Peter read the intruction manual for this transplant

2007-08-19T20:20:00.001+01:00

He is making good progress. Today when i saw him I was a little concerned as he looked a bit flushed, turned out he was fine and it was a normal skin tone returning oops! Its been so long seeing him pale it is taking a bit of getting used to to be honest. But totally amazing. He has had his final two drainss removed now, and slowly the other lines in are coming out as well. Feeding tube is still in, but that will be removed once he starts eating a good amount again.

They were hoping to get him back down to the ward today, but due to lack of beds and short staffing over the weekend, it wont be happening till monday or tuesday. It will be so nice to have him back on E ward, as visiting hours arent so restricted, and once Peter gives the nod, then I can take the girls in to see him. They have been missing him lots, and are so so excited that daddy has a new heart and is getting better. And Nicole is excited about getting her own bedroom (previously serenas nursery, then Peters room for the last year), so have been busy gathering ideas for the new bedrooms for the children, Serena and Lauren want a dragon/knights bedroom, and Nicole wants a girly bedroom. Obvuiously that is a long way off, so for now i can just move beds around get all the equipment shifted that has been here for so so long. we are hanging onto the perch stool for the bathroom, but the rest can probably go.

Life seems to have a rosy glow about it. It has been raining all day, but I dont seem to notice if i get wet. I stil lwant to tell everyone, I told my postie yesterday, much to his amusment as was grinning like a loon. I have been hugged by neighbours, smothered in kisses, had cards through the door, its like one massive celebration. I never thought it would have this effect on us all. I really didnt expect it at all. Its lovely, but heartbreaking as I know someone had to pass away for this to happen. I wish i could fine out mroe about them, but I guess we will never know. All we know is that they were fairly young, with a good strong heart. thats it.

But thank you once again.

xx

We even made it into the Daily telegraph

2007-08-19T18:43:00.000+01:00

here never thought that would happen lol!

will update on peter later just getting kids in to bed.

Amazing day

2007-08-18T20:21:00.000+01:00

Despite being stressed to the eyeballs today has been lovely.

I have had several areas of stress in the last week apart from this and seems to be hitting today. My two sisters have both been diagnosed with a blood clotting disordered and have been started on clexane. Its genetic apparently, so I also need to get a blood test sorted out at some point. Trying not to think about it too much (needles, arrrgh, they cant get blood out of me and i am not having them try 7 times again). Also my Nan has had a heart attack this week, which is possibly linked to the blood clotting disorder my sisters have, so everyone is waiting on those results, if Nan has it, then all her children need to be tested, if any of those have it, then their children need to be checked, if they have it, then their great grandchildren need to be checked as well (and so on). Its all one big genetic mess really, and just at a point when i dont neeed to be thinking about it really. ah well, life goes on. Also my Nan has just tested positive for MRSA at the hospital she is at, so I cannot go and see her due to Peters delicate state and his open wounds. I am pretty thorough with the hand gels at hospitals, but its not a risk i would be willing to take.

Anyway, today. Peter is much more alert, a lot more pink and doing well. His swallow reflex is affected and is stil lstruggling a bit with pills, and now also has a nasal feeding tube down to help keep his strength up. He will see the SALT (speech and launguage therepist) early in the week to work on this and get him swallowing normally again. Thios also happened after the LVAD op, so not overly concerned at present.

He has had two chest drains removed, artirial line and a lot of stuff from his central line as well, so he is doing well. They are very pleased with his progress, and he has been moved from the isolation room to the ITU ward. One of nurses from the transplant unit popped in to see him as well. She said they would've put him back on the ward tomorrow, but the rooms on the 'square' are full, so hopefully he will be there on tuesday at the latest. fingers crossed.

I'm off to soak in the tub (too much information i know) and try and relax and not dream of needles tonight lol.

2007-08-17T23:26:00.001+01:00

Still utterly amazed, and PINK is a wonderful colour for a man!

2007-08-17T21:30:00.000+01:00

I think I have barely slept since this all happened. Have been at Harefield every morning. Ideally I would be staying relatives accomadation and be on site all the time, but feel I should be here in the mornings when the girls wake up and here to put them to bed, and try and keep them settled, afterall this is going to be a massive MASSIVE change for them as well when Daddy comes home. So am shooting up and down the M25 everyday for now, gives me a chance to sob a bit in wonder in the car whilst stuck in traffic, and also blare some good feel good tunes out. So if you see a scatty looking woman stuck on the m25 between watford and waltham cross, thats me lol.

Peter is doing, dare i say, amazingly well. His has pinked up really well, today his ears were pinker than yesterday and its like there is a glow beneath his skin. He feels warmer, and looks so good. I was watching his chest earlier in amazment, just seeing it move with each heartbeat, no mechanicial jolt which had been there for over two years. I had to feel his pulse, as he has had a false pulse for so long, and ooh it felt so so good. My superman is alive and well, and it feels wonderful. The balloon pump in his leg is gone now, and he had requested some food, an ommelette, yoghurt and build up shake. His mum says he couldnt manage the ommlette so had some chicken soup instead.

He has started to take his medication orally, is having a few troubles with some pills, particially his anti-rejection (MMF) pills as they are pretty BIG pills, so managed to take it in liquid form, any way it goes in is all good so not worried about liquid/pill meds realy.

He was pretty tired when i was there, so i left a little bit earlier than planned as he was falling asleep, and he needs his zzzz to get stronger, so left him with a kiss and a bye and 'see you tomorrow'

i will probably update later again over the weekend as there is so much emotion surrounding all this and i need to get it out somehow, and i have found writing this blog over the last 2 years so healing in some ways. its nice having somewhere i can put this all down and not have a notebook lying around waiting for one of the children to claim as theirs and scribble in lol.

Thank you, whoever you are

2007-08-16T15:53:00.000+01:00

Yesterday morning, someone was greiving. but in their deepest grief, they gave my husband a chance of life. They gave us hope, and gave our children something to smile about again. I will probably never ever know these people, who donated their loved ones organs, or how many other lives they saved yesterday, but i know one thing, and that is I can never ever ever thank you enough for this. Organ donation is a wonderful gift to give, if only i could capture all the high emotions myself, my extended family, his extended family are going theough right nwo, to give you an idea of what this feels like, i would but its impossible, its also impossible to describe the sheer releif i am feeling now. there has been a huge weight lifted off my shoulders, and the air is just thick with emotion. I keep breaking into manic grins and when i went to the shop earlier, i wanted to shout it from the rooftops, that my husband had been given the most amazing wonderful gift ever, a new life. but i didnt because they might think i was crazy. The world seems brighter somehow, i cant explain it, i really really cant, but life is better already.

thank you forever and a day, who ever you are.

today has been bloody mad, sad, amazing, cool, terrific, crazy, i just cant describe it really.

2007-08-15T21:07:00.000+01:00

And all because a very generous family gave Peter the best gift of all last night. The transplant went ahead at around 1am i think. I have lost track of times and days. My wonderful lovely cheeky funny husband is going to be ok. As he went through the doors to theatre, the transplant co-ordinator said 'I'll see you tomrorow in ICU' and he replied 'Well I won't see you' funny till the end my love.

I have been to see him today, and it wasn't 'that bad'. The last time he was there was for the LVAD recovery, and that was so so scary. He does have a small 'balloon pump' which is helping his blood flow, but its nothing like the LVAD. he is on assisted breathing only, and atm the heart is a little 'stiff' so they are given him adraline and something else to get it working well. He still hasnt pinked up, and has an infection. He may be on kidney dialysis tomorrow, which is comman after transplant and only temporary in most cases.

All in all, my bionic man, well he may not be part man part machine anymore, but he is bloody fantastic!

and just for you readers, this is the song Peter has been singing a lot over the last 2 and half years.

Its going ahead!!

2007-08-15T00:41:00.001+01:00

HI, am Sarah's sister. Sarah asked me to update this.
I have just recieved the text we all wanted!! the donar heart is suitable and the transplant is going ahead tonight!!
Best wishes and love to Harefield please!!
maria

the phone just rang

2007-08-14T17:36:00.000+01:00

we are back on standby now to find out if its going ahead.

pleeeease be the one. pleeease.

News reports.

2007-08-13T17:24:00.000+01:00

peter and myself on the news this will only be available for a little while, so view while ou can.

i wish i could Peter,

2007-08-12T23:05:00.000+01:00

fix you

Peter got called for transplant on Thursday.

2007-08-11T14:56:00.000+01:00

I was called shortly before 9pm, by his mum to tell me there was a possibility of a transplant, and she was leaving then to get there ASAP. I had to arrange for babysitters for the children, and said i would follow as soon as possible. I was frantically calling and texting everyone, that there was a chance things would be happpening that night, around midnight. I actually got to the hospital around 11pm (its about 45-60mins journey from our home). Then we began the waiting game. Assessment bloods had already been taken a while before thursday, and the morning bloods were all fine as well, so Peter didnt get any more needles. Peter was already Nil by mouth. And I was drinking too much tea.

Midnight passed, and the transplant co-ordinator came by, to say they were still checking on the donor heart and she would let us know as soon as possible.

1am. transplant co-ordinator came back, and we wait on Peter who had choosen that point to go to the loo. when he came back, we hear the dreaded words 'i have bad news...'

the heart was showing signs of disease, so it was decided that it was too risky to proceed. even now, 2 days later, i feel so down about it. There was a chance, it was dangling right in front of out noses, and yet again it was snatched away. This was Peters 6th call, and we all thought this would be the one. We got our hopes up again, maybe next time i wont allow myself to hope too much, so it wont hurt as much if it doesnt go through.

Thank you to that donor family, you gave us a little spark of hope back. it has been missing for so long. now we can belive that it will happen again.

Its been a mad mad day!

2007-08-09T18:04:00.000+01:00

First of all, hello Nicola, i will call you next week hopefully, hows the avon going ;)

Today, Peters story broke in the Daily Mirror. here and here. From 9am, before I;d even got my first cup of tea down my throat, the phone was ringing. ITV london, anglia and Five News all want to cover the story. They wanted to do it today, but it has to be monday at the earliest. I have been at Harefield today, without children, as was concerned yesterday that the youngest two monkeys were going down with Fifths diease (slapped cheek syndrome), due to rashes and high colouring yesterday. But today the rash has gone and no signs of illness, so am assuming they are fine and were just tired yesterday.

Peter was revelling in his new found fame again, and was very cheeky and full of beans (possibly jelly beans from the harry potter box of sweets a kindly lady deom the parenting group sent him). Despite the day being frantic with calls, it has been quite a laid back day so far.

Maybe the phone will ring tonight.

I've been wanting to update, but really there is nothing to update

2007-08-06T23:52:00.000+01:00

Life is much the same as it was. Peter is still waiting, I am still waiting for him, the kids are still on school holidays, and each days passes much the same as the previous one does.

But is anyone knows why the M25 is busier between watford and maple cross right now, please let me know (i suspect it has something to do with the M1).

Peter is now on the urgent list

2007-07-30T22:25:00.000+01:00

He was officially placed on the urgent list on friday. Apparently on Friday, a call did come in, but it wasnt suitable for use, so we werent even told. A doctor told him this morning.

So what is the situation now?

Peter is on the urgent list for a minimum of three weeks (from friday just gone). After that the situation will need to be reviewed. Initially there was talk of replacing his LVAD, this has now been changed to, if need be, they will replace the external parts of his current LVAD. Its too dangerous to leave him on his current one long term, due to the build up in the machine, adnt the problems it is causing.

Because of the amount of pain Peter is in, around the LVAD drive line site, we are hoping that a heart transplant happens and he wont be much longer on the LVAD.

We know the risks, we have been here before, i wont deny it, i am scared, peter is scared. our lives hinge on the next 3 weeks.

I am back, Peter is doing OK.

2007-07-25T08:30:00.000+01:00

I got back from a short break late on monday night. I have left my older two daughters with my parents at the caravan, so they are having lots of fun and adventures without me.

I saw Peter yesterday, and there is a marked improvement in his confused state. He can now recall details from the day before, and is definatly slowly getting back to normal. He still has a long way to go, and they are unsure of long term damage, but at least its a step in the right direction. He hasnt had a shave in almost 2 weeks, as forgot to pack his razor, so today, the beard is going lol.

On another note, I have had an email from a lady called Sally. Her brother, James, had been waiting for a lung transplant for over 3 years. He has CF. On monday he had his sixth call for transplant. This time it went ahead, and is he is now in ITU recovering. This family's life will have been transformed by a generous gift from the donor family. After waiting for so so long, finally, they can start on this new road. I will be thinking of them today as I drive to harefield, and pass by ITU waiting room as I enter the double doors to the transplant unit. Each time I see a family gathered there, I remember the times we spent there after the LVAD op. Its like a seperate world to the rest of the hospital at times, especially when you see the stressed looks of relatives and friends, and you know that somewhere in ITU is their child, spouse, friend, parent and they are clinging onto a new life. It sometimes feel intrusive to stop and say hello, as its a very strange time. Soon we will be back therem waiting to go in to see Peter, and watching people walking by, knowing that maybe they want to be where we are at the point.

I know, that for Peter to live, to even have a chance, as young James now has, someone has to die and their family will agree to this wonderful gift of life being given, and it makes me ache inside. So many emotions surround transplant, its hard to put it into words.

So tonight, I will raise a glass to James and his family, and to all the donors and their families, who have transformed the lives of many of our hospital friends.

Late night update

2007-07-17T00:19:00.000+01:00

I should be asleep, so please ecuse typos and anything that doesnt make sense.

Peter has suffered a brain bleed. We have no idea what has caused it. The CT scan is showing up areas of damage, how bad and how he will be in future is uncertain. He is having problems remember things that happened a few minutes a go, and is very confused and scared right now.

The pain is still there, his pain meds have been increased.

It has been discussed that for now, he is OFF the transplant list, to allow him time to recover from this as much as possible. He will be off the list for a minimum of three weeks.

After that time, he will be placed as urgent case for a heart. which in theory means, things will happen very quickly. He will not be coming home till after he has a heart transplant.

So for now, I am trying to as prepared as possible.

We had a holiday booked for me and the girls at the end of this week, we are strill going ahead with that as i feel the girls needs some normality during the summer holidays, and it might be the last chance we have for qute a while.

I am mentally planning everything right now, as transplant is becoming a reality again.

Well thats is all for tonight, will upate more tomorrow.

Peter is back in hospital, and not very well at all.

2007-07-14T00:08:00.000+01:00

For the last few weeks he has been in huge amount of pain around the LVAD site and in his back. It has been building up for a while.

Yesterday, I was at a primary school visit with Lauren, who is starting school in September. Afterwards, i nipped to the next town to do a bit of clothes shopping for the girls, as we are meant to be on holiday next weekend, so wanted to pick up some shorts and t-shirts (can only dream of summer at the moment). I got a phone call from his mum, asking if we had a thermonitor anywhere, as she was concerned about peter and he seemed a bit warm. I could hear him insisting that we didnt have one, which is very strange seeing as he uses it daily. I get back and he is in pain, and complaiing of pins and needles in his hand and foot on his right side. His mum had already called the hospital to get him admitted, and they called back to say bed would be ready at 5pm.
Peter seemed ok, was chatty, but in pain, nothing really setting off alarm bells at that point. By the time he got to thwe hospital, he didnt know his age, or where we lived. He phoned me up several times asking if he had taken his medication. i ended up calling the nurses station aksing them to make sure his medication was locked in his room and that he couldnt get access to it.

This morning i went to see him. He is very confused, and very forgetful right now. I have had to reassure him a lot, and go over things several times. He looks bewildered and lost in himself. He is scared and tearful. He needs constant care and constant reassurence right now. He is tired.

i am worried about what all this means. Is he going to be like this forever? Or wil lit resolve? Only time will tell.

2007-07-06T19:51:00.000+01:00

Gearing up for national transplant week 7-14 July

2007-07-05T11:18:00.000+01:00

Been reading emilys blog regarding CF

2007-07-01T08:17:00.000+01:00

Now Cystic Fibrosis doesnt affect this family. And I dont know much about it, I have asked Emmie a few questions so kind of know the basics.

Emily was talking about having further children knowing you carry the genes for CF and the 1 in 4 chance of future children having CF. Well, in a way, it has made me think.

We have a daughter of 2 years old called Serena. Peter was put on the transplant list 2 weeks after she was born. He was diagnosed with dilated cardiomyopathy 3 years previous to that, after Nicole was born and I was 20 weeks pregnant with Lauren. Serena was a planned baby. That fact alone takes some people by surprise. I have had people ask me 'why did you want another child knowing your husband was so ill?' It is something that I did think about a lot in the early days of his downhill stages. I was juggling a newborn and a seriously ill husband who was in and out of hospital for 5months. When I had given birth to Serena, I was taken to the ward in a wheelchair. Then the Porter used the wheelchair to take Peter to his car. When he visited me and serena in hospital (we were in for 5 days, thats another story), he would push Lauren in the buggy slowly to the ward, then rest for a while. I would put Serena in her goldfishbowl crib, set that alarms, give the crib to the midwives, take the keys with me, get a porter and wheelchair for Peter, push lauren back in the buggy to the car whilst a porter looked after Peter. The midwives were worried I was doing too much, but to me life was normal.

So why did we decide to have a 3rd child? At the point that we made the decision, Peter was fairly well. Yes he was struggling a bit, stairs were an issue, he was sleeping more, coughing more, but generally well. We were fighting for a more suitable house as we lived in a masionette with 2 flights of stairs. We wanted another child. We looked at the facts we had. Yes he had a heart condition which could deteriate rapidly, but he was stable. There had been no change in his heart function for over 2years. The doctors were happy with his progress. Life was surprsingly normal just at a little slower pace to most people. I had been told many times, that his condition was caused by a virus. After a positive pregnancy result, I was booked into seeing the midwives and consulatnt. Informed them of all the stuff regarding Peter. And was duley sent off to Guys hospital for foetal cardiac scans. I refused all other tests on the baby, just had my antibody tests done as i an Rh-, which means extra care and jabs. Nothing wrong with her heart. We moved into a 3 bedroom bungalow after a fight with the council. This was probably one of the best things we did, as within a matter of weeks, Peters health went downhill and fast. I was over halfway through pregnancy, and he was seriosuly ill. why then? The local hospital were next to useless. They kept diagnosing him with chest infections and pneamonia. They wouldnt admit him to cardiac ward. They did one echo, but without his previous notes on his echos, they didnt have anything to compare it to. We kept telling them many times over a two month period that he has a heart condition and was showing signs of progressing heart failure. His legs and feet were swelling up with water, all the way upto his hips. You could press your fingers into his skin and it would leave indents.
In the end, out of desperation and lack of faith in the local hospital, We took him to the hospital where he was diagnosed in 2002. By that point I was 5 weeks away from being due to give birth. Stressful, yes? Any regrets? No. I moved my own hospital care to the hospital where Peter was, as I figured if he was still in there, at least he would be close by. That hospital decided that I needed to be induced 2 weeks before my due date. Peter was transferred to harefield hospital. My first time there, I was very pregnant and waddling down to the transplant unit. He was being tested for suitability for the transplant list. He came out of hospital 2 days before my induction date after wrangling a deal with the medics. So he was there when I gave birth to Serena. We did have to explain many times, that although he was there, he wasnt to help out by fetching and carrying. Fortunatly labour was quick, and he was able to rest in the chair.

I was hoping to be out the following day, to get back home and look after my family. But Serena had low blood sugars and was admitted to SCBU. I will admit at this point i did have a few doubts sneaking in. Then some of her blood tests for liver function and blood count came back alarming low. They werent sure if it was a blip in the blood testing, but all i wanted to scream at them was 'NO!!!' They had to re-do the blood tests, which quite thankfully, came back all normal.

Two weeks later, Peter was placed officially on the active transplant list. He spent a lot of time between march to june in and out of Harefield hospital, mainly every other week to get fluid drained off. I didnt drive, so was catching lifts with people. A newborn baby with me everytime.

Any regrets then? No. Serena wasnt just a baby. She was, as well as the other girls, a reason for Peter to carry on fighting. He was determined to see her grow up. Still is. She has spent more time visiting hospitals than any other child her age that I know. She took some of her first steps in room 7, ward E.

I do worry about the impact all of this is having on our childrens lives. But to them, its normal. Lauren was just 2 years old and Nicole was 4, when Peter went downhill. They cant recall him being well really, which is sad, but I cant change that. They seem to say everyday 'when daddy gets his new heart....' and it breaks me everytime I hear it.

We made a choice in having Serena. If I knew then, what I know now regarding how Peters health would progress, would we still have had her? Yes, I believe so. You only have to meet my children to see that despite all the ups and downs, they are well adjusted, happy girls. Serena was, still is, one of the most laid back happiest baby i have met. She does keep us going. She is a fun little girl, who makes me laugh daily. Especially now with her Pirate obsession.

There are things that the girls and peter have missed out on, which is regrettable, but again, I cant change that, so try not to dwell on it too much.

We cant live out lives by 'what if's'. If we did, then we wouldnt do a thing.

ouch!

2007-06-21T22:43:00.000+01:00

and for once I am talking about myself and not Peter.

I spotted a rather suspicious looking mole a couple of weeks again (non-animal type, on my skin). So I went to the GP, who looked at it and suggested it be removed for tests. So it was taken off today.

Now bear in mind, I have never ever had an minor operation, never had stitches except after childbirth, and after childbirth anything should be a doddle.

But it wasnt. The numbing injection wasnt so bad. The cutting away of the mole, again not to bad. The stitches were fine.

But now, 12 hours on, my arm is aching all the way to my finger tips, my shoulder feels heavey, and anytime i move my arm i can feel the stitches tugging.

All I can say is, I would make the worlds worst patient lol! I am dosed on painkillers, and am very grumpy as am trying not to move my arm too much, which means i cant do too much today. which is a PITA as i actually want to do stuff.

stitches out in 10 days, results in 3 weeks.

This may not make much sense, because I am confused a bit.

2007-06-18T22:54:00.000+01:00

Today Peter got a call from the VAD team. There is a slight problem with some black boxes. They are meant to be set to alarm at 3000 hours for changeover for a new machine. But some have been set to 1500 hours. So to avoid early alarming as they dont know which ones are set to 3000 and which are set to 1500, they are changing Peters machine over next week. He will be issued with a new 1500 hour machine, which means that he will now have a new machine every 6 weeks-ish i guess.

And still the phone doesnt ring.

Eva

2007-06-16T22:50:00.001+01:00

Bad dreams

2007-06-10T09:14:00.000+01:00

:(

dont want to talk about it much. but it was bad.

Kinky

2007-06-09T21:54:00.001+01:00

Peter has a kink in his outward driveline. the one from his left ventricle to the bladder of the pump. It has been there a while and we have been instructed to keep an eye on it. Yesterday the dent was noticiably bigger.

So quick trip down harefield, seen and sent home within 40mins.

he has been swabbed for infection as well, just got to wait and see really.

still no call.

Hitting a brick wall? Maybe not, things are picking up.

2007-06-02T16:20:00.000+01:00

WEll. transplant news?

Nothing.

Nada.

Zip.

This week has been school holidays (yay from the girls, groans from me). We have been to the beach (sunny), the zoo (cold wet and short flurry of sleety snow) and the farm(today, very hot!) in the last week . The girls have scootered for miles, Lauren has had SALT daily and has been signed off till the end of september yay, so we have the full summer holidays with no appointments booked in so far Yippee!!!

And, a local hospice is going to look at helping us out. The situation that Peter is in, is a strange one. He isnt a terminally ill patient, so he doesnt automatically qualify for the 'benefits' that terminally ill patients do (the term benefits is joke, its not realy a benefit, but its what its called). our lovely district nurse has been searching for months for a way to help ease the strain. The hospice has said they will help, whether it be with childcare and taking the kids out so i can have a break, or taking care of peter (if they can be LVAD trained), and possibly freeing up a weekend so I can take the children away for a short holiday, which will please the kids no end, they just want a holiday and a bit of normality. When Peter was in hospital I did take the children on several short breaks to caravans site sin the UK, and always panicked when I couldnt get a phone signal. So a little sliver of hoe shinign through. We have a meeting with the hospice next week, so maybe more news after that.

Its back to school on monday, nicole has got a project about Life in the 1980's so I have been full of nostalgia, and need to hunt out a few photos for her from my own school days in the 1980's.

Any news m'dear?

2007-05-27T14:29:00.000+01:00

I'm afraid not. Things remain the same.

Peter has started hypnotherepy to try and ease his pain (or ache as he must now refer to it). It seems to be making some difference. He seems more peaceful, is awake more hours in the day, and slowly the backrest of his bed is getting lower.

The call hasnt come in, no false alarms.

Life carries on.

Small things

2007-05-17T14:31:00.000+01:00

First of all, that is Laurens thumb. Last thursday, about 6.30pm she delcared that her thumb hurt, and then showed me it. The joint had complately popped out. I asked her when it happened. she told me that it had happened during morning nursery! Oh yes. Welcome to a world of a child who doesnt think to tell you stuff, like when they are hurt. This is the girl who walked into the living room from the garden with every single one of her toes cut to shreds and didnt say a word. She doesnt tell us stuff like this, which can lead to infections. No idea why. She just doesnt. And never has. I seem to check each night for any unspotted cuts, bruises etc. She walks into walls, bouces off them and carries on. She can go skidding across the floor after falling off her scooter and not batt an eyelid. Other parents watch in amazment as she takes fall and after fall and doesnt cry. 'I'm ok' is a very popular phrase in this house. She has been poked and prodded by medical staff so often, due to this, speech delays and other little issues. I dont know if she does have any special needs (maybe different needs?) to NT children, but there is definatly something about Lauren that makes people think. People are very drawn to this gigantic 4 year old, and the puzzled looks of some of our elderly neighbours when they realise she isnt in school yet are just classic. I have uttered the words 'she is only 4' so many times since her birthday. At age 2, I was asked why she wasnt joing the other children in Nicoles school class (age5). Simple answer 'because she is two years old'. I sit and watch her at times, in amazment as she seems so grown up, but also so young. If i didnt know she was 4years old, it would shock me as well. Today I handed her a t-shirt for an 8year old.

I dont know why I am posting this, just feeling a bit strange, as soon another SALT week is starting (speech and language therepy, whoppeee more working on ssssssssss/shhhhhh for a whole week!). She starts school in september, and am preparing mentally for all the new professionals who havent met her yet, to start with the autism/dyspraxia/HFA/aspergers mentions, re-referrals back to clinics, more meetinsg etc etc, and doing it all over again. As we do every year. I am hoping she doesnt go completely silent for 6 weeks again. Because that was a major issue for her last pre-school. She was communicating, just wouldnt talk to them. Dont blame her at times to be honest. When people say 'oh arent you talking today' would you really want to, or just mentally think 'no, bog off'.

Second small thing. Serenas eyes. She had eye clinic yesterday. She isnt using her right eye at all. So we have to patch her left eye for two months and see if we can get her using it again. She has a very funky Elmo soft patch, which has to be worn for an hour a day. I am expecting tears and tantrums over this.

Overwhealmed really.

2007-05-16T22:51:00.000+01:00

Feeling very very overwhelamed right now. Dont really know why. Every now and then, this stuff hits me. The LVAd IS real, it IS part of our lives, and Peter is waiting for a transplant. The rest of the time, things seem normal. But when i stop and think about it, I realised, this isnt normal. Not at all.

Today I received an invitation for my aunts wedding. They want a RSVP but this saturday. They say they can plug Peter in, he is very welcome to come, will take care of him etc. But there is one thing stopping me from saying yes. and that is other people. We have a very very large family, my mum is one of elevan children. And they all have children, and some of those children have children now as well. The thought of being i na large hall with 100+ people, children running about and doing the wedding dance slide of the floor on their knees, with Peter and his wires there, well my blood run cold. All it would take is for one child to trip into his machine and it could be deadly. And then then adults having a drink, stumbling about (not that they are all dunkards, but its a celebration, i'm sure a couple will be tipsy), again not something that should be mixed with wires. But I am still reluctant to RSVP to say no we cant attend, as i am really still clining onto the tiniest shred of hope that transplant will happen very very soon and by the wedding date in june, life will be normalish.

I cant bear the thought of our lives carrying on in this neverending round of hospital visits, medication, nurses etc with no end.

WE're going to the zoo zoo zoo, you can come too too too, we're going to the zoo zoo zoo

2007-05-07T23:52:00.000+01:00

Critical Alarms

2007-05-04T18:34:00.000+01:00

Have been at harefield all day. went up intially to see pain team and train 4 new carers. saw pain team andthe training session was going well, Rob, the VAD nurse was just demonstrating the beep which happens when you unplug from the mains, plugged the lead back in and al lthe major alarms went off Totally freaked me and i said 'what did you do?' to rob. he was flummoxed, then before we could check everything it stopped and went back to normal.

had to try unplugging and plugging back in again to see if it happened again and it didnt. so they called thoratec (who make the VAD) who said they can get a replacement machine on tuesday. peters back up only had 50 hours, so he has a tempory machine which they use for training sessions which has been reprogrammed to his settings, and we have to go back there next week.

so a one hour visit took 5 hours. [sighs]

Very Late Farm Pictures

2007-05-01T14:24:00.000+01:00

Six months ago I took the girls to a local farm, and I am just uploading them now. It is also another place where Peter has never been with us. Its far too hilly for him to cope with his machine. Its a pain with a 9yr old in a wheelchair (my nephew), so certainly wouldnt be able to get Peter up the hills. Plus Eileen the sheep may want to eat his wires hehe.

The Diet

2007-04-29T13:03:00.000+01:00

I have lost around 1stone+ already. Its odd. I feel fine. I am not having mid-afternoon slumps where I am asleep on the sofa and having to drag myself off the sofa to pick up the children. I have energy, my garden is looking tidier, my trousers are looser. I can play with the children more without wanting to sleep afterwards.

bad points, insomnia. and constipation.

there you go.

only another 89days to go.

Frustrations

2007-04-28T22:34:00.000+01:00

I wish I could say that the reason I havent posted since Tuesday was because we had 'the call' but unfortunatly is isnt that at all. The hospital has rung, but that was for booking another LVAD training session for new carers over the summer holidays. A part of me is internally screaming 'stop talking about how we will be in this situation still over the summer, its not going to happen.' Its scary having our holiday cover booked months in advance, having to meet a whole new set of carers. I spoke to B, our youngest carer, the other day about how long did she think this placement would've lasted when she took it on,
'Not this long' she said,
'neither did I' said I.

Our lives seem to be taken over by Peter and his LVAD, and this wait for the phone to ring. Each day I wake up realising the phone didnt ring during the night, and that another day has begun. Each time the phone rings I pray its the call, and it never is. Each night I stay up later, willing for the phone to ring. I go through what to do over and over in my head each day, how best to not disrupt the children, who to call on to babysit, how we will get to the hospital, saying goodbye as he goes down for the op. Over and over it goes. Each day is the same.
I get up with the children at 7am, get them ready for school, get a shower, wake Peter up for medication, let the carers in, take the children to school, come home, do housework, talk to peter, on mondays and thurssday wait for blood nurse, take perscriptions to the doctors, pick up perscriptions from the chemist, on wednesday spend the day out as day off, pick up kids from school, cook dinner, serve dinner, gets kids off to bed, watch a film, do more housework, play on pc, go to bed and pray.

Peter cant do anything at the moment due to the huge amounts of pain he is in, he can just about sit in the chair I bought for him, and lie in bed comfortably.