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.

The black box of tricks.




To make a change over on the machines is quite simple. Where the two wires are ringed in red, That is the pneumatic lead and power cable for the LVAD. The blue section is for a RVAD, this machine can support both sides of the heart, Peter only needs his left side supported, but when they did the op they used this pump as his heart failure was so bad they thought he would need both sides supported.
You switch on a new machine, abnd wait for it to reset, this is very noisey. Then you unplug the grey electric cable, then the pneumatic lead. You then plug the pneumatic lead into the new machine, then the grey electric cable. thats it. quite simple.

Sunday, April 15, 2007

They look so sweet when they are sleeping



Lauren still isnt well. her chest is awful even with the inhaler. She hasnt been given steroids yet (becotide) which I feel she may also need. I do have an inkling that anti biotics may be needed as well as her temperature is back up again. She fell asleep very early after several coughing fits this evening. She is struggling. She wants to go to nursery tomorrow, but i feel she needs to see the doctor again.

Blog I Read

There are many blogs i glance at and never return to. But there are a handful i view daily for updates, and sometimes comment. Unsurpisngly they are generally about transplant patients, either written by their parents or themselves. I havent managed to find one written from a partners perspective yet, but I do email a few partners of transplant patients for the odd rant :)

Emilys blog. Emily has cystic fibrosis, and was also put on the transplant list, but for a double lung transplant, in March 2005. Finally in January of this year she got the call for a transplant. She is currently writing up the whole transplant story on her blog, and its very very interesting. She was at the same hospital where Peter attends and will have his transplant hopefully.

Moreenas. Moreena is a mother to two little girls, Annika and Frankie. Annika is currently waiting for her third liver transplant. And is currently under going more tests to see if she will get bumped up the list due to suspected hepatopulmonary syndrome

And this blog is one I found today through Moreenas, and I think it will be one I will return to, and i cant wait for the book. I am working my way backwards through it. i havent read enough to give you details, but do please read it.

The phone rang at 6.02am yesterday.

If i could getmy hands on the f*ckers who rang I would happily wring their necks. It wasnt the much needed, hoped for, prayed for call we have been waiting for so so long. It was a withheld number so I couldnt even call them back and scream abuse at them for waking me up at stupid o'clock for no reason at all. I may be coming across as angry right now (no shit sherlock) but I am sick to the back teeth of how much our lives depend on the phone ringing to say 'we have a heart for Peter'. We have almost resigned ourselves to the fact that the transplant may never happen in time.

He is running out of hours on his current LVAD (his eleventh machine since july 05) and needs to get a new driver fitted on tuesday. This is asimple procedure, basically switch one a new black box of tricks, then unplug his current one, and plugs the leads into the new black box. However we do get a bit nervous after this was done before xmas when the machine had a minor fault, beeping every minute as hours had run out. And that time he set off the alarms on 3 different boxes before they found one that worked properly. They have also issues him one before with a mashed up fan cover (the box is essentially a big box of air to pump the bladder, which then moves the blood around his body) which made the machinbe have a funny whirling sound to it. His appointment on tuesday will be the usual, checking he is stable, all organs working correctly, blood work, tests, echocardiogram and x ray. And I am guessing, aside from the LVAD change over, it will be the same as always. Nothing to report. Except that his mum is not going to be happy. We came across something on the Uktransplant site, thanks to Emmie from LiveLifeThenGiveLife, which states that people who are STABLE on LVADs can be listed as urgent on the transplant list at consultants discreation. We were told that Peter cant be listed as urgent because he is stable. Who knows what is going to happen, but my goodness If, big IF, the consultant agrees with my Mother in Law about this bit of ruling from the transplant people, then maybe, just maybe, heart transplant can become a reality once again. Its coming up to 2 years on the LVAD soon. Its been over 2 years since Peter went on the transplant waiting list. He has been through end stage heart failure, ICD op, open heart surgery to fit the LVAD, multiple organ failure, infection after infection. Dont you think its about time his turn came up? I know there are people currently in the transplant unit in a worse state, and in an ideal world they would also get a transplant in time, but a selfish part of me wants Peter to leap up the list, which could in theory mean another person waiting could die. But if he doesnt get a transplant, then Peter would die. The massive shortage of organs is the killer here.

I know this post is kind of disjointed, but I wont edit it. These are my thoughts on s sunny morning in April. A sunny sunday which would for a normal family mean maybe going out and doing something as a family. For us, it means nothing different to any other day. Peter is asleep, in pain. The girls are in the garden, and I am thinking about mowing the lawn, the same way i have thought about it for the last three days.

Thursday, April 12, 2007

Lauren has asthma now

Its not major, not in the grand scheme of things really, but it does make me feel sad. Nicole has had asthma since she was tiny, Lauren is 4. So at least Lauren has had 4 years of being able to breathe freely. Nicoles asthma has been awful over the last six months and has had several nebulisers, and one almost overnight stay at the hospital as the GP was worried the nebuliser hadnt worked and wanted her admitted. But she had a delayed response and was ok. I dont want this for any of my girls, its not fair.

Ah well, more medical forms to fill in at nursery now then.

Wednesday, April 11, 2007

Life without a pulse

Peter has a false pulse, due to his LVAD pumping for him. But there are other LVAD's which mean blood is 'pushed' rather than pumped, which means you dot actually have a pulse at all.

life without a pulse is one story of a man over the water, with a Heartmate II LVAD.

also on the www.thetransplantlog.com jonathon talks about his pump (a heartmateI i think). Jonathon was one of the youngest patients at harefield hospital on a pump. He seemed so young to be on the unit with loads of older people. Peter is also one of the youngest at 27years old. His log entrys on the website are back in april 2006. seems such a long time ago now.

I think its transplant week again soon, 2 months time? not sure how much we can do this year. Am hoping this year is Peters year. I want 2007 to be brilliant and full of hope

Tuesday, April 10, 2007

Its my birthday tomorrow

I honestly did not realise it was tomorrow. I have been thinking of other stuff so much, it has just snuck up on me. Its the school holidays as well so I have problems remember what DAY it is, let alone the date.

Not really expecting much present wise, obviously the best gift would be a transplant call that goes ahead. That would be ace.

Monday, April 09, 2007

My girls are home.


They arrived back in a whirlwind of exceitment. Lauren ran into the doorframe within moments, in typical Lauren style, Nicole was more elegant as she hitched up her shorts and gave me a grin. Then Lauren grinned, TOOTH MISSING!!! She lost her first baby tooth on holiday. And the tooth fairy doesnt visit my mums caravan, so she is coming tonight. Nicole has imitation Heelys eeeek! And several new freckles across her nose. Lauren has got thinner and taller in a week, her jeans are flapping round her anklesa but falling off her waist lol.

It has been a noisy mad afternoon, but i wouldnt change it for the world.

Saturday, April 07, 2007

For Moreena

Ok, i dont know if I am overstepping an invisable blogging line here, but I have just read your latest entry. And I have to say something. What you are feeling is perfectly normal, all the PAT (pre-appointment tension as coined on the childrens heart board) is normal. Each time my kids go for echos/scans (lauren has had two, nic has had one, serena has had one, plus serena has had kidney and bladder scans, nics due one soon), i spend ages reading into every tiny symptom possible. I was certain that at the echo appointment for all girls before xmas that Serena would be the one they flagged up as problem with her heart, as it was it was Nicole(minor mitrael valve leak, wait and see job). The sense of releif that it WASNT DCM was enormous, but it gave us a new worry. But we could deal with that. As you say the sky didnt fall in.

When Peter suffered his second relaspe in winter 2004, and the local hospital kept telling me it was pneaumonia,and i was telling them it was heart failure, I wanted myself to be wrong. When the second hospital confirmed it was end stage heart failure, I wanted THEM to be wrong and to tell me it was pneuamonia. I had worked myself up saying it was heart failure and the first hospital hadnt listened for over a month. I didnt want to be right. The same way you didnt want for this for Anni. Having it confirmed and then being transferred to transplant unit was absolutly gutting. But I still had to do all the normal family stuff, as you do as well. Heck luv, roll on the floor, kick and scream about it, scream from the rooftops, do what ever you need to, but we both know what eventually we have to do. Its written in the contract 'thou shall be the family glue' i swear it is.

What you are feeling about being tired and not being your fight, thats allowed. Right now i am exhausted with all this transplant stuff. Its been your life for 6 years, mine for 2years. People often focus on the patient and how it affects them, but some dont realise the effect on the whole family unit. My children know more about heart transplants, LVADs and hospitals than alot of children their ages. Its normal for daddy to take medicines, for there to be 3 lockable medicine cabinets in the house, for the chemist to know them and present them with books to read whilst I am busy dealign with a 24 item perscription and seeing whats its stock. And I get tired and angry as well. I just want our lives back. I want you and your family to have your lives back as well, for have some sense of normality, the kind that is never really available again to transplant patients, with all the follow up checks etc. Just one normal day for us all.

Will be thinking of you and your family on this new road to travel.

You can tell me off for this if you like and I will delete if you so wish.

Sarah

x

Friday, April 06, 2007

Down on the Farm

Peter is watching the football game on the TV so I am blogging again.


Today I took Serena to Willows Farm Village in London Colney. very very packed as its the easter holidays, and Good Friday to boot. We went with my neices and nephew. I forgot my camera so no pics of this one, but I do have some from our last visit in October still to upload.

We saw some lambs, sheepdog trials, piggies, rabbits, guinea pigs, rats, chicks, ferrets and loads more. ate ice creams, held baby bunnies. was great fun. came back very dusty and one very hungrey two year old.

Wednesday, April 04, 2007

A normal day?

Well normal ish.

Peter update, nothing to update. Wish there was ut nothing has changed.

Today We had a carer booked for 10.30am-6.30pm. Peter requires 24 hour care from an LVAD trained person. Which means getting outside carers in. So today, full day off for me. And only one daughter to take with me. I popped down the local shops to pay a few bills, then ws unsure of what to do next. I bumped into my old old friend Debbie and her son Connor. They used to live in the flat above us, so Debs is very aware of the situation. So i asked if they fancied a day shopping. They did, whoo hoo! I didnt need to spend the day mooching around alone.

We have lost many friends over the last few years as they havent been able to cope with the fact we cant drop things and be spontaneous, arent able to have visitors with young children over etc etc as this is what DCM and LVAD's can doto people. Its isolates you from most people. But at the same time, even though old friends are lost, there are new ones which are treading the same path as you. You knows those people will know what you say when you start spouting off about lvad, flow rates, flash tests, pumps etc etc and wont say 'what, can you explain?' because sometimes you dont want to explain.

Debbie is one friend who has been there for us, and is also someone Peter gets on with, which is great. So I took her and her son back to their to collect bags, car seat etc, and set off to Watford. There is one thing i should explain, Debbie's son is autistic. I am used to him, my kids are used to him. So a day out with them doesnt faze me. But at the moment, if he hears a child crying he screams and shouts as well. Which does mean he gots some awful stares and looks from other people. I find it hard as I want to give these people an 'education' but know that in the same way i dont want to 'explain' all the time, neither will Debbie. So i just try and let other peoples look wash over me. Which is hard. Hence, normal-ish day.

We had fun hitting the shops, went a little mad in the disney shop, a bag for me, mug, purse, Car for Serena, Cars for Connor. I also managed to get Serena some bright pink Mary-jane Crocs. They are very sweet and ideal for the hospital as apparently they can put in the dishwasher afterwards. means no nasty hospital bugs following us around lol. Also got some LUSH bath products, a glittery bath bomb, ooo it fun to shimmer after a bath :) I did some 'boring' shopping as well, which means buying socks, knickers and pj's for the children. But even boring shopping is fun after getting most of the stuff we need online over the last few years due to not always being able to go to the shops.

I made sure my phone was on loud all day. but it didnt ring. So a normal-ish day.

:)

Tuesday, April 03, 2007

Nicole and Lauren have gone on holiday

And left Mummy, Daddy and Serena home alone and with hardly any responsability. Never mind that Serena is only two years old, suddenly going from three children down to one is scarily easy to deal with. I have one pair of hands, i can now push the buggy with BOTH hands on the handle. I can talk on the phone and follow the one lone voice going 'mummy mummy bikki, want bikki and milk' and deal with that request without two others shouting their requests at me. I can put one to bed e4asily without other children escaping. oooo its strange.


Tomorrow, I am hoping to take Serena to the zoo if the weather is nice, if not she will have to cope witht he shopping centre holiday entertainment.

It is spookily silent here, and I am aiming on getting to bed before midnight tonight and maybe sleeping in till 8am [gasp!!!]

Sunday, April 01, 2007

More Alice




Her album is really great and is available from amazon you should buy it. ;)

Alice