Tuesday, December 18, 2007

This may be my last post before Xmas.

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.

Tuesday, December 04, 2007

Saturday, December 01, 2007

i think I have found the source of my cold



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

Oli needs some ....

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.

Wednesday, November 28, 2007

I was right, I have a cold

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]


Tuesday, November 27, 2007

Today was a long long day.

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.

:)

Monday, November 26, 2007

Back at harefield tomorrow

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.

Saturday, November 24, 2007

More Angels.

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.




Thursday, November 22, 2007

Another Superman. This time its Oli's turn

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.

Monday, November 19, 2007

watch this and give someone a hug

Late night ramblings.

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.

Friday, November 16, 2007

big catch up


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.

Monday, November 05, 2007

dont tell anyone but...

i just ate 3 chocolate covered caramel digestives.

eeek!

Saturday, November 03, 2007

SAW IV review


i have no idea really as watched it behind my hands

Thursday, November 01, 2007

A family holiday? surely not!!


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?

Monday, October 22, 2007

Tomorrow.

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.

Sunday, October 21, 2007

Breathe in, hold it, breathe out and relax.

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.

Thursday, October 18, 2007

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

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.

Wednesday, October 10, 2007

Why am i struggling to update?

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.

Friday, September 28, 2007

Updating takes so long.

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.

Thursday, September 27, 2007

Long overdue proper update

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)

Friday, September 21, 2007

New Life



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!

Monday, September 17, 2007

Summing up the last few weeks in pictures

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







Sunday, September 16, 2007

Pink Peter is Home!


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.

Saturday, September 08, 2007

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


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

Tuesday, September 04, 2007

Its Life Jim, but not as we know it

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.

Sunday, September 02, 2007

Friday, August 31, 2007

two steps forward, one step back.

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.

Thursday, August 30, 2007

ah life :)





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.

Monday, August 27, 2007

Lets Play Spot the Difference



Peter taken 6 days before transplant



Peter today.

Sunday, August 26, 2007

I haven't caught any bugs yet

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

Friday, August 24, 2007

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

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!!

Thursday, August 23, 2007

WEll thats three down, just one to go!

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.

Tuesday, August 21, 2007

Media media media

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.



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.

Monday, August 20, 2007

Lauren still burning up

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

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.

Sunday, August 19, 2007

This was in the daily mirror on thursday


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."

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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

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

here never thought that would happen lol!

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

Saturday, August 18, 2007

Amazing day

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.

Friday, August 17, 2007

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

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.

Thursday, August 16, 2007

Thank you, whoever you are

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.

Wednesday, August 15, 2007

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

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!!

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

Tuesday, August 14, 2007

the phone just rang

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


pleeeease be the one. pleeease.

Monday, August 13, 2007

News reports.

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

Sunday, August 12, 2007

Saturday, August 11, 2007

Peter got called for transplant on Thursday.


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.

Thursday, August 09, 2007

Its been a mad mad day!

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.

Monday, August 06, 2007

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

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).

Monday, July 30, 2007

Peter is now on the urgent list

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.

Wednesday, July 25, 2007

I am back, Peter is doing OK.

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.

Tuesday, July 17, 2007

Late night update

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.

Saturday, July 14, 2007

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

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.

Friday, July 06, 2007

Sunday, July 01, 2007

Been reading emilys blog regarding CF

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.

Thursday, June 21, 2007

ouch!

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.

Monday, June 18, 2007

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


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.

Saturday, June 16, 2007

Sunday, June 10, 2007

Bad dreams

:(

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

Saturday, June 09, 2007

Kinky

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.

Saturday, June 02, 2007

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

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.

Sunday, May 27, 2007

Any news m'dear?

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.

Thursday, May 17, 2007

Small things



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.

Wednesday, May 16, 2007

Overwhealmed really.

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.

Friday, May 04, 2007

Critical Alarms

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]

Tuesday, May 01, 2007

Very Late Farm Pictures





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.

Sunday, April 29, 2007

The Diet

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.

Saturday, April 28, 2007

Frustrations

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.

Tuesday, April 24, 2007

VAD (ventricular assist device) being fitted

Enbedding has been disabled, so you will have to follow the link. It appears to be a thoratec BiVAD in the video, meaning that both sides of the heart are being supported. Its probbaly best not to let children see this.

657 days on LVAD, record maybe?

taken from the thoratec website FAQ on the thoratec TLC-II

'What has been the longest duration of support with the Thoratec?


566 days.'


Peter has been on it 657 days so far.

Monday, April 23, 2007

I took it myself




dear me, i should've tidied up behind me before i did this one hahahahahahaa. in my defnece, i have no floors. i accidently flooded the kicthen over a month ago and we had to rip up the floors, some things have had to be packed away, and some things now have no home.

Sunday, April 22, 2007

Saturday, April 21, 2007

Down, down, down.



I am feeling lost again this morning. Lack of sleep may have something to do with that. The girls were playing musical bed all night.

But the sun is shining, its warm out, I am getting 3 hours off later, wish i could say I was doing something exciting and fun, but today I need to go shopping (the girls want home made pizza later, i need some tomatoes), pay some bills, put money in the bank, pick up perscriptions for Nicole and Peter, and laundry.

So aside from all boring stuff, I am going to try and list some things that make me happy.

1. Peter. He may be wired up all the time, but he comes out with some cracking one liners. He remains cheerful 99% of the time, and is always willing to do some publicity when I get it into my head that we need to do something. Yesterday I heard an 'Ow' come from him. He was a fair distance from his machine. i dont know if he forgot he was connected or what, but the look of amusement he gave the LVAD as he reluctantly went to move it to where he wanted to be was priceless. It was definatly a you had to be there moment.

2,3,4. My 3 daughter. Nicole, Lauren and Serena. They light up my life, even when fighting and squabbling. They have gone through so much stress in the last 2.6years but they are still amazing children. They behave very well, and we often get compliments on their behaviour when out. I was at the cinema with Serena the other week, and a lady stopped me at the end of the film to congratulate me on having a wonderfully behaved daughter and said how beautiful she is as well.

5. My dolls. I restore My Child dolls from the 1980's. I havent done many lately as I have been busy elsewhere, but I have two that now need work. Its great fun taking a filthy, sometimes mouldy doll with tangled hair who is nude, and cleaning it up, reweaving its hair, finding an original outfit and putting it on display or up for sale for someone else to enjoy.

6. Prams. (laugh at this one if you want lol) I also like tinkering with prams and buggies. Around xmas, I found an old silvercross coachbuilt pram on ebay and bought it for £13. When I bought it home, my mum said she wouldnt touch it with a bargepole. I spent a few evenings cleaning the frame, carrycot, hood, steaming it, washing it etc etc. Then eventually put it back up for sale, and got £130 for it. I was pleasently surprised.

7. Rollerskating. i havent been for over 10years,but I love it. I am hoping to restart it soon once I am fitter.

will think of more later.

Thursday, April 19, 2007

Feeling better

I actually got some sleep yippee! I got woken up at 6.45am which is pretty darn close to the alarm going off at 7am, so pretty pleased with that.

Diet is going well, but my hands are freezing. Very strange in this warm weather we are having, makes typing fun anyway.

Have spoken to Peter about height etc, and we are considering contacting a few 'chat' shows to discuss height being of importance with organ donaors. (Emmie, may need your contacts on this one). Basically I am in the frame of mind of NEEDING to do something to raise awareness, and I want to go further afield than the local press this time, nothing against the local paper at all, but maybe its time to go national again? There must be an organ donation awareness week soon which would be a good time to do it. Maybe Peter can do a Justine and get a call during transplant week :)

I also got the sponser forms through a few weeks ago for the Harefield Fun Run in September, so need to dig those out, fill them in and send them back with our registration fee. Peter is hoping to be able to do a mile this year again, but with his pain around the LVAD worsening all the time, I think he will only be able to do it if he gets a transplant this summer. The girls cant wait, and you never know by then, maybe I'll be able to run a mile or three lol.

Wednesday, April 18, 2007

I am a grumpy grouchey old bag today

Do not piss me off.

No idea whats going on in my little tiny mind. I feel like i have read far too many reports lately on transplants, sorting out charity stuff, back to school, asthma, doctors, perscriptions, shopping lists etc. I though I had every done and dusted today and when I bought the girls home from school I was looking forward to reading a book and then preparing dinner. Then I realised I had forgotton to get milk and bread. If I had run out of just one of those items, I could've fobbed the kids off with an alternative for breaksfast tomorrow, but running out of both, oh no no. So had to do a evening dash to the shop. Now, an evening dash isnt just me getting into the car and getting the stuff we need. Its a case of getting all three monkeys into the car and strapped into their seats, then helping Peter get into the car, move his LVAD off the wheels and into the footwell of his seat. Fold the trolly, put that in the boot, put the spare LVAD in the car, make sure house is locked and then go. Do all this in reverse when you get home. its a pain in the bloody arse.

So now my head hurts, I'm tired, so I am going to snuggle down with my duvet over my head and hope no one wakes me up till my alarm goes off at 7am.

Tuesday, April 17, 2007

time to get pro active

right, Peters height is a major major issue in this transplant business. So i may start slipping donor cards into tall peoples (6ft+) back pockets. what do you think? Will that work?


(please note, at times I get very strange in the head about this, do not take any comments seriously)

erm

Peter was at hospital today for Pacing Clinic, Transplant clinic, LVAD change over, and to see his consultant. He cant go on the ugent list. Fuck. The hospital need to pay-back three hearts into the organ donor system as they have had three urgent hearts recently. Fuckity fuckity fuck. But they are concerned about how long he has been on the LVAD and on the transplant list, and he is top of the normal list. If he was fucking top of normal list then why the feck is he still bloody waiting. Oh yes, I forgot, he is too bloody tall. So what can we do (apart from remove his legs). Nothing. well nothing but wait. Oh so back to normal life.

Peter met a young man who had been on the LVAD 2 years ago for 9months. I have to agree with what he said 'you may be alive, but its no life. We are just exsisting day to day, waiting for the call. two years ago I was full of hope that by the end of the year things would be better, and life would be back to normal. I never imagined this way of life. Who does? I want to be moving onto the next stage, unfortunaly the next stage of this families lives will go one of two ways. And right now, I cant think clearly about what to do if the call doesnt come in in time. We have talked about funeral arrnagments etc, but how do you cope in such a situation. I cant imagine it. I dont want to.

Moving on from my morbid thoughts of the day.........


Lauren and her asthma. GP has agreed with me about starting her on steroids. So anotrher item for the medicine cabinets (did i mention we have 3 of them plus a kitchen cupboard full). Have also got a spare inhaler and spacer for nursery. It will be kept in a central medicine cabinet which is in the morning building. They have also put a notebook in her bag so I can check on when it has been given. I will be passing on the asthma Uk site details to the nursery as well. I have had lots of 'sorrys' today about yesterday, and for once I didnt yell at them, but they know I am not happy.

Lauren seems a lot better today, I havent heard a cough or snuffle out of her for 3hours now.

Oh, and I am starting a rather strict diet (cambridge) tomorrow. Its my own personal battle to ward off diabetes if that is possible. I carrying a LOT of excess weight, and really do need to shift it. My last lot of fasting blood results came back as borderline for diabetes. My blood sugar level was slightly too high (by .1 i think, i like to do this a lot to the docs, gets them in a small tizz). I also dont want to be fat and thirty. So that gives me 3 years lol.

So a lot going on

Monday, April 16, 2007

I would like to scream right now.


I bloody detest schools+medical stuff. They do not go hand in hand at all. Last week, Lauren was diagnosed as having asthma. Last night i was in two minds about whether or not to send her to nursery school. By this morning she was doing well, no coughing, no wheezing and full of beans. So I took her. Laurens nursery is split between two buildings. In the morning she has a session at one builder, lunches there, and then moves to the second building. This strange arrnagment happened because of the current mad mad mad family situation. So I took her to the morning building. Handed over her inhaler and spacer, with strict instrictions that IT MUST go over to the second building after lunch. I filled in medical forms for both buildings in the office, instructions of how many puffs, maximums, when to give it (am very well practised with asthma) and went home.

Roll on home time. I go to the second building and Lauren is struggling. She is coughing, red faced and can barely talk. The nursery staff were very concerned. The inhaler hadnt been bought over with Lauren, the medical forms hadnt been sent over and no-one had bothered to inform the afternoon staff that Lauren now has asthma. So i had to play hunt down the inhaler. It was still in the first building. I am sick and tired of school playing with my childrens lives. A similar thing happened last summer at Nicoles school, where they totally missed the fact she was having an asthma attack and told her to take a drink of water. By the time she came home she needed a nebuliser and a weeks course of oral steroids. Since then I have insisted there is an inhaler in Nicoles classroom at all times and she has access it top it, afterall she has livedwith it since she was a tot, she knows better than anyone when she needs it.

So, what do i do? I am going to ask the nursery to look into the asthma uk site. and see if they can issue asthma cards. I did this with Nicoles school. Asthma is life threatening, and some people seem to forget that. My girls dont appear to be the usual wheezey asthmatics that are protrayed on tv programmes. They get the awful hacking coughs, and then they cant breathe as they are coughing so much. the wheezing happens right at the end of an attack.

I am booking another GP appointment this week and will also see if Lauren can be seen by the asthma nurse. I would to be able to issue both buildings an inhaler and spacer for Lauren so this situation NEVER EVER arises again. Until then, I hope they get it right because I will pull her out of there so damn quick otherwise.