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."

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

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).