Sunday, April 15, 2007

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.


Tim said...

Ugh, _I_ want to wring the neck of whoever called you. The heck were they doing calling at 6 in the morning anyway? If it happens again, scream down the phone or something - at least, it'll probably make you feel better and it'll give the person on the other end a monumental earache.

I hate telling people what to do, especially when their circumstances are so impossibly far removed from my own, but please, don't let yourself give up hope - don't tell yourself that it can't happen just because it _hasn't_ happened. Find something to hold onto - success stories, odds and probabilities, anything - and just keep telling yourself that it can happen to Peter as well. Each day is another day closer - you just have to believe that, some times. It'll help you when days like this come along, when the future is a vast expanse of smog and gloom and the promised land seems so impossibly far away.

I apologise if I sound patronising. It's just hell balancing on the edge of disaster, and I wish I could do something to make it easier for you. This is probably going to sound cold, and brutal, but I don't think it is selfish at all to want Peter bumped up the transplant list. You want Peter to make it through this, and getting bumped up the list is the best way for that to happen. There are just too many patients and too few hearts to let yourself be concerned with the equity of it all, with the fairness, no matter how much you might empathise with others in your position or wish that they might have their own personal miracles. If it happens, it will mean that Peter has a better chance of pulling out of the nightmare you're in. If it is selfishness to view that as all that matters, I think it is a kind of selfishness you need to have in order to keep yourself sane.

Ugh, I'm sorry this comment has come off the way it has, though. I've got a test in the morning, and I've been rushing this comment to try and get more cram time in... I really hope you're feeling better. I'm praying for you! Don't give up hope!

misdee said...

Thanks tim. the early morning call left me grouchy all day yesterday and this morning.

Another reason I want Peter put on urgent when he is stable, is that way he has the best chance of pulling through the transplant Op. Peter is a unique case at harefield with how long he has been on this type of pump. And also according the Thoratec website, he has also exceeded their previous amount of days on this type of LVAD by around 3months now (we are still trying to get that confirmed). So we are going itno unchartered teroity about this LVAd and its long term effects etc. Each day on this list is a day closer to transplant in theory, but there is always a nagging little voice in my head saying 'yes, but its also a day closer to death.'

Good Luck with the test, i dont miss all that, its been a few years since I took tests :)

Emmie said...

Hi Sarah
I was a bit scared about telling you about the document I had been reading, as I didn't want to raise your hopes unfairly. But then I thought "for God's sake, if this could save Peter's life or let him and his gorgeous family not have to suffer this wretched half-life for so long, than it's worth a try". After all, if it says you can be placed on the urgent list providing you are stable on LVAD, then what happens if Peter becomes unstable on it? Can he not then go onto the urgent list at all? I've no idea how the system works and it must be so hard for the consultants to make these decisions which can have such huge repercussions for people's lives. But you've all suffered so much and for SO LONG!!! What kind of quality of life can you all possibly have whilst Peter waits year after year on an LVAD? Sorry, I'm just desperate for you all to get that call. Please don't give up hope, I know it must seem like it will never happen some days. But with Emily, we all thought it was never going to happen and then suddenly, one day it just did and it all went so fast. And one day, hopefully flippin' SOON, that phone will ring and it will all suddenly go ahead.
Stay strong hunni
Thinking of you all xxxx

Emmie said...

Do you know what Hope is?
It's magic and it's free.
It's not in a prescription.
It's not in an IV.
It punctuates our laughter.
It sparkles in our tears.
It simmers under sorrows.
It dissipates our fears.
Do you know what Hope is?
It's reaching past today.
It's dreaming of tomorrow.
It's trying a new way.
It's pushing past impossible.
It's pounding on the door.
It's questioning the answer.
It's always seeking more.
It's rumors of a break.
It's whispers of a cure.
A roller coaster ride.
Of remedies, unsure.
Do you know what Hope is?
It's candy for the soul.
It's perfume for the spirit.
To share it makes you a whole.

Don't give up hope Misdee xxxxxx

Jessica said...

Oh Sarah! My heart is just bleeding for you and Peter. I truly know how you feel, to some extent. But your case is so much more painful than mine. With my brother, he passed away only a year and a little bit after the end-stage heart failure diagnosis. Dan was placed on the waiting list for about 9 months, and then, he had the LVAD operation. Unfortunately, he never made it to come home back to us. But still, there was so much heartache and hope that Dan would be saved. I can't even begin to imagine how hard you've had to struggle not to go insane with how long Peter's been denied a transplant. Sarah, you will always be such an inspiration to me. Your courage blows me away.

Tim's absolutely right; there's nothing wrong at all with wanting Peter to get a transplant. Yes, there are plenty of patients who are sicker than he is. But he is your husband and the father of your children. He NEEDS to be saved, because he needs to hang around to go through this journey called Life with his family. I don't think you're selfish at all. I think you're human and you want what is best for the man you adore. That's not selfishness, sweetie. That's love.

And about that phone call at the break of dawn, after Tim gets through with the caller, I wanna have some clobbering time with him or her!

I'm always praying for you and Peter, Sarah...always...

*big bear hugs*
~ Jess

PS/ Sorry I have finals now so I'm online less but your blog is always somthing I check for daily updates!

Jessica said...

Btw, you mentioned that Peter was being fitted for a new LVAD. Does that mean he needs yet another op???

misdee said...

no new op, it literally swapping wires over on his black box to a new one. will add a pic of the black box in a moment.

Em's way said...

Hope the tw*t who rang you at 6am, has karma cme and bite them where it hurts, maybe let their ears drop off, or their dialing finger !

Seriously, I cannot even begin to imagine what it must be like living your life. But reading your blog makes it so much clearer, more real . I hope more and more people read this, and are prompted to join the register.
Sending love and hugs.