Tuesday, 10 September 2013

Hope for a Cure

Yesterday was very quiet, well for me anyway. I spent most of it dozing in front of the TV. The boys however had a much more interesting afternoon bike hunting and Andrew has ended up with three possibles. Another Honda, a Suzuki and a Yamaha, please don't ask me which models, I'm afraid that sort of thing goes in one ear and straight out the other.

His balloon has been slightly deflated this morning however as trying to get insurance is proving a bit of a trial. Of course a bigger, newer bike was always going to be a bit more expensive than his current model but some insurers are asking for an extra £1000, which is totally ridiculous, especially when I can insure the two litre 156 for him for just over £900.
Of course I have tired to tell him that at least he does have transport and he acknowledges this, but he'd just like something a bit more comfortable for the long journeys he does. I suspect it is going to be rather tense in the Roberts household over the next few days.

So with that in mind it is just as well that I'm feeling a bit perkier this morning I slept really well and that overwhelming fatigue I've been experiencing for the last few days seems to have lifted. My cold has retreated to a slight sniffle and scratchy throat and the 'full' feeling has also reduced. I've spoken to my doctor and as things seem to have settled, and in view of my cold, they will try and bring my clinic appointment forward rather than get me in as an emergency. I'm happy with that and have promised to phone them straight away if it happens again. They agree that it could just have been extreme stress or I might have been having these small irregularities for some time and it only felt really bad because it coincided with a hot flush. I can go back to work as long as I pace myself but if I'm not feeling up to it I'm to stay at home. As it's the anniversary of my diagnoses I'm due the full MOT anyway so if there is anything wrong they will find it. And as my original appointment is only three weeks away it is not too long a wait.



I was amazed and delighted to read today that a cure for PH might not be as far away as we all thought.

Stanford University School of Medicine are pretty sure they have isolated the cause of PH. And as we all known once a cause has been found a cure can be worked on. 'Pulmonary hypertension, a deadly form of high blood pressure that develops in the lungs, may be caused by an inflammation-producing molecular pathway that damages the inner lining of blood vessels and blocking that molecular pathway has reversed PH in rats'. This is really, really good news. Of course there is a long way to go before this can even be tested on humans and for me the cure, if successful, will be too late, but I can't tell you how pleased I am that soon this terrible condition might never again cause so much pain and anguish. Yes I know we are very, very lucky that we are able to effect a cure already through transplantation BUT transplantation is really swapping one condition for another and can cause even more health problems. To get the body to heal itself will always be the safer option. I hope and pray this discovery leads to bigger and better things for all PH patients, and soon.

To read the full report follow this link. http://med.stanford.edu/ism/2013/august/nicolls.html

Today is going to be another spent resting up and with a bit of luck I will be back in fighting form by the end of the week. Of course now winter is approaching there are going to be even more colds, flu and other nasty bugs floating around. I've booked my flu jab for the first week of October, more of less on the first day of the first clinic, as I do not intend to have flu if I can possibly help it.

A lot of well meaning people think I should more or less hibernate during the winter months to protect myself. Now while this is an attractive proposition it would never work. First off for it to be effective my entire family would also have to cut themselves off from the world and that's not going to happen. Secondly I'd go mental! I'm not the sort of person to be able to sit around watching TV and doing nothing for long. So as dangerous as it is the risk will be worth it. Though I'm secretly hoping to have had my transplant by the times the bugs really get going and so will be stuck at home anyway.

Well Andrew is off on another bike quest this afternoon so is cooking an early lunch. I am going to be given sausages, mash and peas and 'I'd better eat it all'.

I have a feeling he's going to be a proper little tyrant when he looks after me post transplant.