Monday, December 05, 2005

Peter may be home for xmas!!

Yippee!!!

The hospital are talking of letting him out with his LVAD machine. they feel his recovery will be quicker at home than at the hospital as he will hopefully be more active at home.

Fingers crossed eh?!

Sunday, December 04, 2005

How do you cope? You must have a plan or stragedy in place?

one of the other patients is going through transplant assessment. he says him and his missus are going to pick mine and peters brains on how to cope. but how do we cope? i have no idea. the way i see it, we have two options in all this, option one, complain about how unfair it all is, and just lie down and give up, or option two, carry on as much as normal, and keep fighting.

Saturday, December 03, 2005

just a quick update.

Peter is being kept on the anti biotics for now, to try and keep infections at bay. they dont want him to have any infections in case a heart comes up. Is finding things hard going atm, being apart from each other and the girls is hard.

he has been insructed by another patient that if he gets a transplant then when he goes past his room he has to yell 'YANKY DOODLE DANDY' so they know its him gone down. LOL.

Tuesday, November 29, 2005

More to deal with..

Lauren, our middle child, is being referred for assessment as her pre-school feels she may be on the autism spectrum. dont know how much more this family can take.

Sunday, November 27, 2005

Soon it'll be christmas.......

The girls have been asking if we can put the christmas tree and decorations up today. Usually we dont put them up till the 9th december, but I am considering putting them up alightly earlier this year. Part of me doesnt want to celebrate it as we wont be at home for christmas day, we are booked into relatives accomadation at Harefield. It is very unlikely that Peter will be home in time for christmas anyway, he really needed a transplant by today to try and get home in time. And that hasnt happened.

If the girls werent abut i'd be going crazy by now, and i wouldnt even consider christamas at all.

Friday, November 25, 2005

Havent updated much.

Well its been a very eventful month. Peter was palced back on the list which was good, small stroke, infection, infection, and oh another infection.

He is in a lot of pain especially around his VAD site. The wound has been bleeding freely for a few weeks, he has had a haemotoma in his stomache, his INR went too high so he was just pouring blood after injections and blood tests. He was wanting to give up and i honestly dont blame him. He was on the phone so much telling me he couldnt do this anymore and it tore me apart as i was so far away and couldnt help.

He is on fairly strong painkillers, and they are talking about setting up a spinal block so he can painfree for a while, but due to his INR problems and the bleeding it could essentially make things worse with regards to bleeding. It weighing up the pros and cons, to be painfree will be amazing for him as he has been in pain for the last 5months, so even a few hours releif would be great, but what if they cant stop the bleeding from where they site the needle?

So far, no transplant call, It so hard waiting. If the phone rings too early in the mornings or late at night, then i feel a sense of dread in my chest continously thinking 'is this it? is this call going to change our lives?' And each day i pray that a call will come, but then feel guilty as in reality i am praying for someone who is a match to die. It really confuses me.

too late to be contemplating all this, so will try and fill the rest in in the morning.

Thursday, November 03, 2005

Its midnight and I cannot sleep, again :(

Peter has another possible infection. He is back on barrier nursing again whilst they await lab result to see what is making him ill this time. His LVAD tubes were a mess today when his dressing was done, very gungey. He also is suffering stomache problems.

Today I looked at a new school for our eldest daughter,Nicole. She will be starting there monday. Part of me feels that maybe this is the wrong time for her to be moving schools, but the main attraction of the new scxhool is how close to home it is, compared with her current school, which will no doubt make things easier.

And also, our youngest daughter, Serena, had an 8month health check today. she is doing fine, HV is slightly concerned at her slow weight gain and i have to take Serena back in 4 weeks to be weighed again.

Tuesday, November 01, 2005

RIP Clive

One of the patients passed away over the weekend. I just want to say a silent prayer and send good thoughts to his family.

xx

Monday, October 31, 2005

Suspended from the list.

Peter has been suspended for a minimum of 3 weeks from the list after his stroke. Its a major blow, and we cannot wait till he is back on the list. We are now stuck in limbo again and the future of life after transplant seems very far away. Being back on the list gave us a glimmer of hope again, now its back to square one. Hopefully the suspension wont be extended.

Saturday, October 22, 2005

:(

Peter has suffered some damage to his brain, but the docs are optimistic he should recover ok. he has lost some sight in his left eye. A CT scan showed some damage in the area of the brain connected to sight. the docs feel that a clot or some fibrous material has caused the problem.

So fingers crossed for the next week or so.

Friday, October 21, 2005

Back on the list

yesterday Peter was put back on the transplant list. But its now possible he has had a bleed o the brain or a blood clot on the brain as he has lost some vision in his left eye. he has had a CT scan done today which will hopefully show everything is fine, if anything is wrong then he'll be taken off the list until he recovers.

Sunday, October 16, 2005

Today

I have just got back from the hospital visiting Peter. He is looking very well, and has been messing about with his new mobile phone. We walked to the Pavillions canteen and had a drink together as a family, its nice sometimes to get out of the ward. His Mum commented that we will miss the LVAD machine when it goes, and its true, we will miss the noise, the contsant tick-ticking has become a part of our lives. To have silence will be very strange at first. I cant wait till the machine has gone, but as it is keeping Peter alive its something we have adjusted to having in our lives. I say we should name the LVAD lol. Answers/suggestions on a postcard to.........

Sarah

Saturday, October 15, 2005

One week till Peter gets back on the list, plus other worries

Hopefully. yesterday he was meant to have an angiogram done to check the pressures in his heart. It was cancelled at the last minute aand has been rescheduled for monday. then the team wil lmeet on thursday to discuss whether or not he is fit enough to go back on the list. I hopehe is.

But I also have other worries as well. My little brother has a problem with his esophagus, it has virtually closed off twice now in 2 years. the 1st time he had an op which involved inflating a balloon down his throat to open it up again. Then in January this year they operated as again he couldnt eat without being sick as food wasnt going into the stomache, it was sitting and rotting in the esophagus. It now appears the problem has occured again, he has lost another 2 stone, and is having to go for further tests. Life definatly isnt easy atm.


Sarah

i want to link to some news articles of interest

The first one is about stem cell research and dilated cardiomyopathy. http://news.bbc.co.uk/1/hi/health/4326698.stm Until now it has been considered a incurable condition, but these tiny little cells may hold hope for the future. I have called for a pack, which i should recieve soon, and maybe Peter will consider it as an option.

The second is all about Peter houghton, the man whose life was saved by a jarvik 2000 artificial heart pump. http://news.bbc.co.uk/1/hi/health/4598751.stm Again something that may be of more help in the future?

Jim Braid, another recipitant of the jarvick http://news.bbc.co.uk/1/hi/health/3514136.stm

And lastly, Jonathon Cropper whose donated heart started to fail, so was also given a pump. http://news.bbc.co.uk/1/hi/health/3197406.stm

Sarah

Thursday, October 06, 2005

March 14th 2005
Peter was officially placed on the heart transplant list. Even now i feel scared of the prospect, that to keep my husband alive, someone has to die and their family have to agree to their organs being donated. At a time when they are greiving they give this amazing gift of a second chance of life, well it blows me away. Peter had 3 calls in April and May of 2005, none of which were suitable to be used. In June we ventured down to All-hallows on sea for a short break, Peter was at that point using a wheelchair. He had to do an 24 hr urine collection the last day we were there, and his mum took him to Harefield for a transplant-clinic appointment that day as well. He came out of the clinic so happy as it was the 1st time he had been for anappointment and been allowed home the same day. But in the week following he went rapidly downhill. Another appointment was due on the 20th June so he held off till then. He was met at the clinic by a nurse who took him staight back to the transplant ward. The 24hr urine test had shown that his kidneys were not functioning correctly. The Doctors decided to try some high hitting meds (dopamine) to try and get his kidneys and heart functioning better, and also his liver which was also in a bad state. They also then talked about a LVAD being fitted soon as time was running out for transplant.
Peters 26th birthday was the 25th June, we celebrated it with a chocolate cake in his hospital room. It was a very strange experience.
The following week LVAD's were mentioned again. They are used as a 'bridge to transplant' and the hope is that the device would keep Peter going till a suitable donor heart becomes available.
Peter was fitted with a thoratec LVAD ( http://www.thoratec.com/ventricular-assist-device/thoratec_vad.htm )on the 6th July 2005. He spent around 5days in ITU, and then went back onto thetransplant ward. He suffered a massive blood clot in his leg in the 1st week back on transplant ward, and that set his recovery back a fair amount. he has also had a few infections, one of which set his ICD (http://heart.healthcentersonline.com/icd/icd.cfm) off 5 times in one day. The road to recovery hasnt been easy but slowly he is making progress. He has right now an infection which is holding up the tests to see if he can go back on the transplant list. Once he has receovered ad is deemed fit enough we can carry on with hoping.

Sunday, October 02, 2005

But there is more to get us upto date.

My 1st post is about the day that changed our lives. April 22nd 2002. That datewill be etched in my memory forever. Our lives fell apart, and i didnt know how to cope. still dont tbh. Two weeks after diagnoses, Peter was home with lots of pills totake and appointment cards for co-ag checks, cardio appointments. But no-one to contact for support. I had been searching the internet for information and had founds some sites saying life expentancy was 5years, which scared me, but then found the CMA website (http://www.cardiomyopathy.org/) which helped me deal with things better as it was very up to date with the latests treatments etc.
Peter remained pretty stable until Oct 2004. He had just had his flu jab and felt very weak. He was admitted to the local hospital several times during nov-jan, but the hospital said his heart was ok, stable etc, even tho Peter was showing signs of progressing heart failure. We got fed up with the to-ing and fro-ing so took him back to the hospitalwhere he was diagnosed. The admitted him back to cardio ward, and got him transferred to Harefield hospital for assessment for heart transplant. I was 35weeks pregnant with our 3rd child then. And due to be induced at the end of feb. Peter had the tests for transplant done and came home 2days before i was going to be induced. Two weeks after our 3rd daughter was born Peter was officially placed on the list for heart transplant.

Introduction.

All stories must have a beginning middle and end. So today i will give you the beginning of our journey, the start of our story. And then we will move onto the middle, the here and now, and hopefully one day this journeywill have an end.There will be tears, laughter, sorrow and happiness.

August 1997
I meet my future husband

August 1999
We got married

March 2000
Our 1st daughter is born

Jan 2002
Found out we are expecting our 2nd child.


April 22nd 2002.
Peter, my husband was seriously ill. The GP had been out twice and told him off for calling her out, the ambulance had been called and the crew gave him a nebuliser. But nothing was working. Fortunatly Peters mum came round and took us to the hospital. Peter was suffering heart pains, breathlessness and generally very weak. He was taken round to resus1, where we joked that he must be seriously ill to be in there. Heart attack patients were being bought in, and here lay a 22yr old man, with his whole life ahead of him. One of the junior docs came to see us and said he suspected peter had a blood clot on his lung or a collasped lung. Blood was taken, painkillers given, tests started. And the all important x-ray was going to be done. So we waited.
X-ray was taken. The junior doc saw it, and suddenly the doc on call was there, also looking at Peters x-ray's, discussing what it was that was wrong with my husband. I caught that there was something wrong with his heart. The dco came over to us, looking very grave and serious, sat down and explained that Peters heart appeared very large on his x-ray and she would like to do an Echocardiogram there in resus1. The machine was bought in, and about 20 different members of staff poured into the cubicle. The doc (who happened to be the hospitals cardiologist) explained things to the other staff members and it all went over my head.
After the bombshell. Peter was diagnosed with Dilated Cardiomyopathy (DCM, enlarged heart), and needed to be admitted to CCU that night. I went to call his mum. How do you tell someone their son has a serious life threatening condition? I couldnt do it. I just asked her to come to the hospital,and i let the nurses explain it. the situation was bad, and i didnt know what to do. When i got upto to CCU and saw Peter all wired upto machines it tore me apart. He looked so weak and fragile.
He wasnt allowed to move further than the side of his bed, and spent the 1st 3days in CCU before being moved onto cardio ward. His mum was told to expect the worst.

But its now Oct 2005, and he is still here. He needs a heart transplant, and the blog is here to tell our story and how we are waiting for the call that will change our lives.

Sarah