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.