Wednesday, 26 May 2010

Feeling hmm and confused about anything

Hey guys (if anyone even reads this) I haven't blogged in a while, I didn't feel like blogging about recent events. Frankly I just couldn't be bothered anymore. But then I realised it was probably better than bottling it all up.
So I have been out of hospital nearly a week now. It was quiet a eventful admission.
I ended up in ITU once again and met a new doc he is the adult Itu consultant and resp/CF specialist. He didn't get my sudden drop in o2 SATS so he made me have multiple gasses at different Fio2's (Facially inspired Oxygen) More accurate then measuring it in litres. so I had gasses at 100% oxygen through bipap 70% 60% 50% and I would just plummet and below 50% and take a long time to get my sats back into the 90's my gases confirmed this.
They were confused a bit by this as my CO2 didn't rise but my PaO2 fell. So I had some special heart echos and a special CT scan. They were all fine showed nothing more than my Lungs being bad my heart was fine.
So they are still a bit confused but hey I've never been text book. So this Doc lets call him Dr smith offered to take over my adult care as he would be better than the Transplant team for when I get acutely ill as he part of the Adult Home Ventilation team.
So I slowly got better and Tx doesn't seem like its moving forward much at the moment and I'm home once again waiting for the next thing to happen. I can't be bothered pushing and chasing the whole Tx thing anymore if it they say I can be listed great if not no biggie.
Something happened yesterday that really hit me hard. Someone who I had just recently started talking to, who is in the same position as me I was in hospital when I last spoke to him, was on 10l o2 bipap 24/7 so was he minus the bipap 24/7 at the time. Like me he was fighting to be listed for Tx. Yesterday I heard he had passed away. I'm so confused as to why some people just go and others just bounce back why did he go and why didn't I. I don't think its fair. I think I'm correct in saying he had never been that unwell in the past. I have multiple times and bounced back. I don't understand why, why wasn't he given the chance. I just really don't get it.
Another thing getting to me is how some people get listed oh so quickly and others are practically dying and fighting for a place on that list. It isn't fair why should people have to suffer so much to get listed and others get listed so quickly get their call have fantastic superb recovery. A good Friend of mine recently got a Tx but she was on her death bed literally when she got listed yet other people I know OK they have restrictions etc but still get to do normal things. I know they are sick enough to be listed but it just annoys me that their people so much sicker waiting to be listed and fighting for the chance just because they are different.
I'm just all confused and my head is a bit of a mess atm. I don't want to be part of this world of oxygen, Tx, Illness anymore. I don't feel like talking to anyone I have met because of it. weird as that sounds you think I would talk to them more because they may understand.
I just feel like fading away and disappearing right now......


  1. You are very strong, and I think that everyone should admire you because you are an amazing person, and I don't know how you do it. Hang in their, because you are a great person. :)