My lung function was down and my weight was the same!
So, we've agreed the feeds aren't working for me, I have some form of allergy to milk or something in milk and it's not something that can be easily tested for, we've now ruled out lactose intolerance, so it could be milk protein. Anyway, the feed I was having, despite being the highest calorie one, is not for me :(
I've agreed to go back into Papworth on Monday for 3 days, to test a new feed, probably a soya based feed rather than milk based, which should help, if not we'll try another until we get it right. They wanted me to go in hospital for a couple of weeks and I said no, I hate being in anyway I don't see the need because I'm not having IV's, I don't eat hospital food so the 'feed regime' wouldn't be a true reflection of my life, so they've decided I'll go in for 3 days, then go home with the feed and test it out in my normal daily life, with normal eating habits and sleeping patterns and see how it goes. Then have a week or so out, then back for 3 days etc.
I'm really glad we've come to this arrangement, 3 days will be fine for me if I can see an end to the stay, 2 weeks is a long time and when you are trying to focus on going home, it can seem a lifetime away. 3 days will suit me much better.
I'll also be having a 3-day glucose monitor, which is a small needle inserted under the skin around the stomach area, attached to a monitor which checks your blood sugar levels every 3 minutes. This is so they can keep an eye on my sugars and get an idea of what happens throughout the day/night, without me having to prick my finger 100 times a day lol!
It wasn't all rainbows and butterflies, it was pretty frustrating. The weight thing annoyed me. The fact my lung function is down after IV's again annoyed me. The fact I've got to go back in hospital, annoyed me.
But the worst bit, perhaps the most reality-type-smack-in-the-fact bit, was that my consultant asked me if I was sure I wanted to go through with it all, because it's so much work and with how unwell I am, they aren't sure if it might all be too much for me - so was I sure, or did I want to 'give up now' and they will focus on just keeping me well and preparing me basically, for death..
No matter how annoying, frustrating and difficult this is, I will never give up. I am not a quitter and I don't want to die, simple as that!!
So I shall leave it there - I'm Still positive. Still focused. Still determined. Still very hopeful that all the hard work will, eventually, pay off.
&Then I don't even mind if I don't get a transplant, I'll just be so pleased and proud of myself that against all odds, I was on the list and I'd made the (in their words) 'not impossible but very unlikely' actually happen :)
If you are reading this and are faced with difficult things in your life, hard decisions, tough times, situations that seem like they will never sort themselves out. I have one message for you... :)
|(Photo taken form weheartit.com)|