Friday, 17 January 2014

Operation Porker

Had my three monthly check at Papworth this morning and was full of anxiety about it. Have I put on any weight? Will my increased water retention upset anything? Am I still on the list?

The last one is really stupid because I wouldn't be going to Papworth at all if I wasn't on the the list but I do worry having not heard anything for a whole year.

My appointment was late morning and it takes about an hour to get there from my house so we left around nine thirty to allow for roadworks etc. Typically, as we had plenty of time, there were no hold ups and we arrive half an hour early. This meant I had all my tests such as bloods and x rays before seeing the consultant. My blood pressure, oxygen sats and heart rate were all fine, but I knew that from last week's results at the Brompton. Then came the dreaded weigh in. A miracle has happened!!! I put on weight and I was about to get very excited when I was told it was only a pound or half a kilo if you want it in new money.

I have to say I was despondent as I've been eating my little socks off these last few weeks. I'm not little miss popular at work as while I'm indulging in Operation Porker everyone else is on Weight Watchers. I enter the rest room with a bacon roll, bar of chocolate or plate of curry and get glared at as my colleagues plough through mountains of salad. They all understand my plight but I'm sure watching me scoffing away isn't helping with the willpower.

Having been given the good news about my weigh and everything else I was sat in the weighting room to see a consultant. Amazingly I didn't have to wait very long and I was barely half way through my magazine before I was called in. This week I was seen by Dr Parmar, who I understand is the head honcho, and I was surprised at how lovely he was. He went through all my results, those from the Brompton as well as those done in clinic, and then we came to the tricky question of my weight. I'm still lighter than I should be but I am now over the crucial eight stone marker and that's what really counts. He asked how much I'd weighed at my heaviest ever and I told him that was when I was nine months pregnant with my third son and then I'd only just tipped nine stone. He said it was time to stop stressing about my weight as it was clear from my history and my bone structure that I'm never going to be anything other than slim. The most important thing for me to do now is to maintain my weight above eight stone, get my water retention under control, and keep myself as healthy as I can. Thank heavens for that! I was convinced I was in for another lecture. Maintaining weight will be so much easier than trying to gain more.

We then got on to my waiting time. He was astonished that I hadn't been called yet as 'there was not reason for it'. I have low level antibodies but other patients with higher antibody levels have been transplanted so that is unlikely to be the reason for my long wait. Dr Parmar thought the main reason for the wait was my size. I am unusually small for an adult as far as depth and length of my rib cage goes and if they can't find organs small enough to fit that becomes a problem. However he did say that the average wait for heart/lung is eighteen to twenty four months so from his point of view I still have a way to go. We did discuss having just lungs which would mean getting organs quicker but he would only consider that as an option for me if things got critical because he feels it would be quite dangerous. He did say that they would up grade me though as my heart is showing early signs of not coping, hence the water retention, and he would like to see me transplanted while I'm still quite well. Apparently the problem with PH patients is that once heart failure takes hold you deteriorate very quickly. Dr Parmar would rather avoid that if he can.

So I came out of clinic feeling a lot more relaxed about my weight and a lot more reassured about the efforts being made to find organs.

On the way home we stopped off at Tesco in St Neot's to do our weekly shop and took advantage of the cafe there to have lunch. The food wouldn't win any Michelin stars but it was filling and tasty. We arrived home, unpacked and then I made a nice cuppa and we relaxed. My next trip is in April, Dr Parmar's parting shot was that he was sure he'd be seeing me before that. If only I had his confidence.

Those with sharp eyes may have spotted a familiar face on the TV this week.

Anglia news was in filming at my work place to get an important message across. It seems there is an urban myth going around that dialling 999 increase the battery life of a mobile phone. It doesn't, so please don't do it.

Andrew has been taking exams at university all this week and so far they seem to be going well. He has his last one today and then he'll be home for the weekend, another reason to stock up the cupboards.

Also paying a visit will be Laurence, who is coming for lunch tomorrow. I am making cannelloni, always a firm family favourite, and apple crumble.

In the news I was saddened to hear about the death of Roger Lloyd Pack. This talented actor was most famous for his role as Trigger in Only fools and Horses and Owen in The Vicar of Dibley. He was a joy to watch and I will be paying my own little tribute this weekend by dusting off a couple of DVD's and laughing myself silly.

The is also bad news form the Schumacher camp. It seems that he is not making the progress medics had hoped or expected and now there are gloomy predictions that he could be comatose for the rest of his life. If he does come around, and at the moment it is a big 'if', he will not be the same Michael Schumacher. What a terrible shame and how awful must if be for those close to him to know all this. I just hope that he manages to pull one last 'fast one' and proves them all wrong.

Right time to get myself down to my paint box and see whay I can be inspired by this week.

I've included a few of my 365 challenge photos in this blog, hope you like them.