Monday, 24 March 2014

Organ donation

Nobody can prepare you what it's like when someone dies, nobody can explain how it actually feels.
This past month there have been a lot of CFers gain their angel wings, the latest being the gorgeous Kerry Thorpe. Kerry was 23..what sort of age is that for somebody to die? She fought so so hard but unfortunately her body was tired of fighting. Her story is so inspiring and is exactly why you need to sign up to the organ donation register - get your family doing it, get your friends doing it, get anyone. I know it's been said a million times but you don't know when you or a loved one will need an organ.

I know people are busy and I don't expect you to give up hours of your time. But please, just sit there for one minute and really think hard. Imagine being in so much pain, unable to do anything, fighting so hard and wishing your second chance at life would come. Now think about the other perspective - your world being torn apart as you've seen your partner, parent, sibling, friend, go through agony for so long to then reach the end with no organs available, there's nothing anyone can do and you're left without them in your life.
I know that is blunt and horrible to think about but this is the reality of things. This is why it is vital you sign up to become an organ donor AND let your loved ones know you're wishes. People with rare blood types find it even harder to get organs so if more people sign up then surely there's more chance of them getting a match.
You can choose to donate any of the organs on the list, all of them or just one or a few. The more the better but the choice is yours. I've signed up on the internet and it genuinely only takes 2-3minutes to complete.
If one person signs up and two people who sign up who each tell another two people then hopefully it will get more and more people becoming organ donors. I know it's not nice thinking about what you want to do at the end of your life but just think that you could be the person that somebody thanks and thinks of everyday because your lungs, kidney or liver have saved their life.

It's really hard to cope when you hear that another CFer has passed away. Even if you didn't know them personally it hits home, especially if you've been following their story. It makes you think about your friends who are already up there, think of that person and their battle, think about their families who must be going through hell right now and to be honest once all the sadness has eased you think about your own mortality. I never really considered it much as a kid, I was pretty healthy with no major issues so why would I? When I was very very sick a couple of years ago I wasn't sure how much longer I'd be here for..that thought did cross my mind a lot laying that hospital bed on o2 and unable to barely eat, drink or talk as I didn't have the breath in me. Now I'm on Kalydeco I'm doing much better than that, however I still have rough patches and sometimes I do sit there and just wonder what is going to happen in the future - will I need a transplant? Will I become really poorly again anytime soon? But seeing as I can't see the future, however handy that may be, those questions will just be unanswered until a later date so it's pointless thinking or worrying at the moment!
It really helps that there's a big CF support group and when someone does loose their battle we do all chat, make sure each other are okay and offer support for those closest to the person.

Please sign up to become an organ donor and share this link with others

- Posted using BlogPress from my iPad

Thursday, 20 March 2014

Big update!

Sorry I haven't blogged for quite a while - I just feel like I've been so busy with one thing or another for the past month that there are so many things I need to get done and not enough time to do them all. Quite a few various things to mention and update you on!

1. In half term (I work in a school for children with Autism for those of you who don't know) I had another stomach blockage so spent the week at home feeling crap. The first day it started the stomach pain was excruciating - I was just in a pile on the floor in tears and just couldn't move because of the pain. We debated A&E although I have medication for it in the house so I wasn't too sure what else they could do for me so took some of the meds and painkillers & had an early night. Not exactly what I wanted although I suppose at least I didn't need to have any time off work.

2. My bedroom is finally finished - I absolutely love it! It was definitely worth the wait and the saving :-) Massive thank you to my Dad who helped paint it, build the furniture etc.

3. Last week I had my annual review follow up appointment. It was okay although it could have been better.  My lung function and weight have dropped although I'm not too worried about that at the moment - just hoping it doesn't continue to fall. Dr Higton said my vitamin D levels are VERY low and despite being on two tablets for it already they're going to add in a third to see if it helps and repeat bloods in three months. If there's not change there are other treatments they can use. Due to this my bone health has suffered and my latest Dexa scan showed Osteopenia which means my bone density is getting low.  Apparently you can't really get the density to go up much once you've lost it although with exercise plus the extra vitamin D tablets it can either stay stable or increase a little bit.  

I've never suffered with my kidneys but Dr Higton has said that the latest blood tests show that they're leaking and are starting to show signs of wear and tear! Unfortunately the diabetes and the IVs both can damage your kidneys so there's not much I can do about it apart from keeping an eye on it with blood tests and then adding in a treatment plan if they get worse. 
Other issues were discussed and things sorted out. 

4. My lovely friend Sammie got married! It was a wonderful day and she looked beautiful - I did get a tad emotional as she walked down the isle and when her hubby made his speech! So here's a big congratulations to Mr & Mrs Fletcher :-)

5. I currently sound like a 50 year old smoker - feeling okay in myself but my cough just sounds awful and in the evenings I'm getting very tight chested & temp is up..I'm keeping an eye on it for a few days in case it's just plugs moving around but if I start to feel poorly or my breathing gets worse I think a trip to the hospital will be in order - trying to see if I can make it till the Easter hols in case I need IVs but hopefully this'll just quieten down.

This weekend I'm off to see London Irish play Bath (rugby) for the St Patrick's day match - I can't wait!

Have a lovely weekend :-)