Thursday, 18 August 2011

Raindrops Keep Falling On My Head

It's been a sad day in the PH community with yet another of our number beaten by this horrible illness. When someone dies it sort of brings the rest of us up short because any of us could suffer the same fate at any time. This illness does not follow a defined path, you can't plot out the progress and outcomes as neatly as you can, say, cancer. Every single person diagnosed will be attacked by the illness differently and every single person will respond differently to treatment, that's what makes it so difficult to find a cure above and beyond transplant. Some will struggle for years, some will survive via transplants and some will go very quickly, without warning. You might feel you are winning the fight, your medics will tell you that you are doing well then bang, your heart just can't take anymore and you are gone. That is the ultimate cruelty of this illness. I did not know Jacqui but that doesn't matter, any death from this illness is sad and felt personally. By all accounts Jacqui struggled long and hard against this illness, I am sure she will be much missed.

Naturally after my news yesterday I've been doing some research and have come to a rather surprising conclusion. A lot of people talk of transplant as the 'cure', well if you think about it it isn't a cure. All you are doing is swapping one set of problems for another. Your life will still revolve around hospital appointments, you will still need to take pot loads of meds and you will still have to be careful with yourself. Not to mention the fact that by having a transplant you could actually be shortening your life and you might just survive longer on the meds. On the plus side, and it is a very big plus, is quality of life. Some people think that living, no matter how ill you may be, is better than taking the plunge and having the transplant. Living a long life is all very well if you are healthy and can get out and do stuff. What if you are bed bound? Attached to oxygen twenty four seven? Unable to feed, wash or dress yourself? That is where the transplant comes in. For me quality of life is much more important than quantity. I would happily sacrifice twenty years as I am for ten active, see the world, years. A transplant would give me a second chance to do all the things I've been putting off, how many people can say they will get a similar chance. What a gift! Lots of people will disagree and argue that I have a duty to stay alive for as long as possible for my family. The question I have to ask myself is would my family want to see me day in and day out in pain and distress for years to come and for my family the answer has to be no they wouldn't. I will continue to read and think about my options probably until the decision is taken out of my hands but I feel I'm making the right decision for me, and my family, for now.

What every PH patient wants is a real cure, one that doesn't involved major surgery. Medics say one day this will happen and maybe they are right. The stem cell research in Canada seems to have positive results so far but as yet there is no data on the long term effects of such treatment. Unfortunately it is doubtful that it will ever be an option for those patients with PH now. All we can do is trust our doctors to do the best they can for us.

Andrew did OK on his AS results but not as well as he hoped. Ideally he wanted two B's and two C's or above but he ended up with two C's and two D's, one of the D's in a subject he is dropping anyway. He can still end up with the grades he needs to do his Paramedic course but he's just going to have to work harder this school year. I'm sure he'll do it but understandably he's feeling a bit down at the moment.

Laurence got the letter he needed for his mortgage from his HR department and it is now winging it's way to the mortgage advisor. At least he has now cheered up.

It has rained continually since about seven this morning and I'm fed up. Typical isn't it that as soon as I start to feel better the weather prevents me going out. I have to grateful that I don't live in Dorset though, 50mm in six hours apparently, wow! It is bad enough here with the patio awash and most of the plants beaten flat by the force of the water. I'm dreading going out when it stops as I hate to think what damage it has done to the tomatoes.

I have the joys of the warfarin clinic tomorrow, joy!