Follow, follow, follow, follow the yellow brick road....sorry couldn't resist, especially knowing you'll have that suck in your head!
Anyway today we have reached 456 days on the transplant list! I have run half marathons, completed military training, walked 900km in Morocco, but this is the hardest journey I have ever had to go on. I know I am 'ill' some days I feel totally crap and everyday I feel pain, but 8 out of 10 days I'm doing ok....I almost wish I wasn't....I feel like I am lying to people. Its so hard waiting for something that feels like it will never come and then having to explain to people that actually just because I don't sit at home, or complain about what's wrong with me, or take time off work that yes in actual fact what is wrong with me is life threatening and kinda important!
I just feel like some times I am walking my brick road to transplant but some bugger keeps adding more bricks every time I get close to anything, increasing my journey by months!
So there we go I have had my moment, time to move on! I hope you are all ok and winning the battle xx
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Chelle_
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Yes.. it's one of them isnt it .but i am sure you will get off that yellow brick road soon 🤞. Life is tough at the best of times and i know how you feel regards to "explaining " .i now have other health issues so my my mobility is now restricted .doesn't help when you cant move due to pain and addicted to choclate lol.. keep your chin up .. xxx
Click your heels together three times and say out load, "there's no place like home, there's no place like home, there's no place like home" and see what happens. You never know, it might just work. If nothing else it'll stop you looking at the sod that keeps laying the bricks!
Hey You, keep that chinny chin chin up .... ya, it's so weird to feel in reasonable health but know you DO actually need some help! Worst part for me is knowing I will get worse before (if I am lucky enough), I get better.. Still my Non-Profit is flying at present and all is not that bad (even the sun came out today in Lancashire)!! Keep Well Jx
Hey at least you have a heart and a brain,you keep walking that road and one day you will meet oz😊am much the same I work,excercise and keep smiling but there are days when you ache & hurt am 378 days an waiting
I was “on the list” for about 550 days (didn’t bother counting them exactly) before I got the call. My story didn’t have the expected ending as the procedure was aborted due to a major haemorrhage that I really had no right to survive from. You sound remarkably well and whilst the call is always front and centre of your thoughts, take some positives that you do not represent an emergency and as long as you are being regularly monitored everything should work out just fine. As time progressed I seemed to manage the waiting better. At the beginning it was frantic as my heart jumped out of my chest every time the phone rang or I entered a twilight zone with no mobile signal. I just believed that the call would arrive before the grim reaper and I was correct.
You may enjoy my blog that I write about my cancer journey especially the highs and lows around that never ending wait. It can be found at 1liver1life.wordpress.com
Just remember Dorothy had that road to follow that like yours felt never ending. She met some interesting people and she got a lot of problems but got back to Kansas. You have worked so hard I feel like one of the munchkins cheering you on. I can't do anything to help but I really want you to succeed.
I shouldn't have said munchkins, I'm now thinking of munchies, and I've still got some weight to lose.
Keep on walking Chelle. You’ll reach the emerald city soon enough.
I know exactly what you mean about almost wishing you looked worse, externally I looked ok apart from being yellow. I almost had to convince myself sometimes just how poorly I was. It’s hard having to cope with everything we do and also having to keep “convincing” others that you’re actually not feeling great today.
You’ll get through this. You’ve got a loving family, plenty of friends and all us on here to lean on.
Thanks everyone, you know how to give a girl a boost. I do still manage to work but don’t suffer with side effects, the only medications I am on the gives me trouble are the diuretics and needing to be near a loo.....besides that nothing else is an issue, not the warfarin; no excessive bleeding/or any bleeding really, not the chemotherapy (oral tablet) I have lost only two toe nails, no issues with propranolol, I think there were some problems in the beginning but my body is so used to it all now. I take paracetamol for the pain every now and again prescribed tramadol (I only use when I’m working from home or at weekends, I deal with it the rest of the time) I get sleeping tablets at times but again only use them on weekends and sleep when I can.
The problems I have definitely seem to all be internal I don’t have yellow eyes (very occasionally) my ascites is under control....my bloods are all ok.
honestly I feel well and often don’t believe that there is anything wrong with me; I am sure the doctors will call me One day and tell me they have made a mistake!
I never expected to be on the transplant list but here I am, varicose banded on a bi annual basis, scans too. My spleen is humungous about 28-30cm and causes my appetite to be littler than normal and gives me a bit of breathlessness....but really that’s it.
I used to be a personal trainer, delivering 5 classes a week, having 22 clients a week. I loved it....I’m not allowed to exercise anymore because I have blood clots. So I changed my job. But I thought transplant would be 10 years away at least! But here I am and I know I am so lucky still being able to do things, I do ignore my body a lot and probably should rest more but I want to live and wait not wait to live. There’s no option for me to not work, I would go insane, even when I don’t feel well I work from home.
I would just like it all to be done now so I can get on with planning life; new job, new house, new location.....having the chance to get fit again and go back to running.
We all have goals and we all deal with things very differently. I hope the mountains your climbing are getting smaller and the top is insight.
Thank you for your lovely words. Going for cake at my sisters now! X
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Donna 1968
Anaemia again 
Antibody mediated rejection 
