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Today in the USA its Pulmonary Hypertension (PH) awareness day. I don't know if we have similar days over here in the UK but the Myspace I manage has alot of friends on it with PH and so I felt we should join in in raising awareness for this horrible disease. I can't even begin to find the words to describe how on a day to day basis how this disease makes me feel and of course it was the reason 5yrs ago Jamie had to endure a heart and double lung transplant. The differences between our diseases is that Jamie's was Primary Pulmonary Hypertension (PPH), basically meaning that was his lung disease and the reason he had his transplant. They discovered a hole in his heart and then when he began turning blue during activity PPH was diagnosed and he received a successful transplant aged 18. My PH is secondary (SPH) meaning it has a cause, the cause is my interstitial lung disease. My lungs are putting so much pressure on my heart it is now starting to suffer, the blood vessels around my heart and lungs are becoming damaged from that pressure. I was diagnosed exactly 12mths ago and although there are a few good treatments for PPH, SPH does not have so many options. SPH is a daily battle on its own beside my lung disease. It causes the blood vessels around my heart and lungs to go into spasm and constrict. I usually have some pre warning, signs that only I understand and are unexplainable but they are signs and when the Vasospasms occur my oxygen levels can drop at times below 60%. All I can do when this happens and it can happen upto 5 times a day is swap my oxygen mask for a high concentration mask and hope for the best. I doubt many of the readers of this blog will even begin to imagine how that feels. Every day upto 5 times a day I feel as if I'm going to die and theres very little anyone can do about it. The drugs have made very little difference to me in the last 12mths and the vasospasms SPH causes daily as I said are just another thing to put up with besides my lung disease. But as the saying goes 'You only live with what you have to'. I would not wish any sort of PH on even my worst enemy and I pray something is done to tackle this relentless disease soon.Moving on, I started with a tickly throat at weekend and have since gone on to develop a full blown chest infection. Unfortunately the hospice are not set up to deal with IV antibiotics which is what I will need for a few days, I suspect. I'm seeing my consultant in clinic tomorrow where he will decide if IVs are needed at this stage but I know from how nasty my last infection turned he will be keen to get on top of it sooner rather than later. But that means I will need sometime in hospital until I'm at least off IVs...
Well I think my picture speaks for itself but believe me when I say it has not been an easy week. Long story short I will be going to London for a lung transplant assessment, so theres a possibility I could get on the UK list but that leaves me wondering is it actually worth the risk? Do I have the time to wait in the UK? Can I afford to risk waiting upto 4yrs? Lots of things to think about there plus the journey is 210miles each way which isn't going to suit me so well but I know I have to keep my options open and so I probably will be going. I have a cardiac work up (whatever that means) at my local hospital planned for next week then I will be in London within the month if I decide to go. I was at the hospice today, wasn't a good or easy day, I have fluid on one of my lungs possibly cardiac related, I saw the physios and picked up some tips which I'm hoping will be helpful. Haven't seen Jamie due to the infections I've had recently he's had to stay away, I had a flu jab on Monday too which upset things even more I have been sniffly, clammy and headachy all week. So anyway I will do a longer blog soon and explain why I have ended up going back to London.