Wednesday, 16 September 2015

Getting closer to home

So today started off well, I've officially stopped using the commode now and walked to the toilets, I still walk like I have a stick up my bum ha and legs are like jelly, since not walking. Since frimley, I have beyond imaginable muscle waste. Every time I stand my calfs feel like there not there and my legs are going to give way! But I'm pushing it cause if I don't il get know where! 

So today I done stairs! Wow hard work. Did about 6 steps up and down twice I think it was or maybe. 3 times. My left leg isn't as strong as my right so I have to go up on my right and down on my left. I've been given a walking stick to help now for when I go home. My have to get lee to pimp it up, the wood effect makes me feel like an 80 year old woman! Hahha

So I was impressed I done that, felt quite faint after, but I still done it! And Dr and another surgeon walked pass so always feel good doing stuff Infront of them! Feel proud! Didn't cry this time! Getting back to less cry baby George! Ha 

So something I wanted to mention, although I'm very positive and head strong, I want people to know that it's normal to feel over whelmed by all this, today I started some tablets to help with anxiety. 
Now I would never in my life agree to anything like this, I'm a true believer in self healing but I've never experienced quite an ordeal like all of this in my life! And I'm not ashamed to admit I do need help! I think it will make me stronger and heal me mentally quicker. I think and I'm first one to admit that taking stuff was always a sign of weakness and not being strong but far from it! These people know what there doing and I trust them so i know won't be forever but until I go thru this rehab process I'm going to go with the support! 
I'm still crazy little Sprog who will prob say all the wrong things and  inappropriate things at times sorry mofos that's me! Haha   

Anyways so today in the afternoon I felt quite faint and tummy had the worse cramps and felt awful I was in a lot of pain, I ended up being sick and then slept for 2 hours. Tummy still not 100% and it seems to be happening every other day so just need to take it easy with food and keep moving lots. Get this tummy back to normal hopefully soon, come along way with it, worse part of this bloody process! 

I felt great after a sleep and then I had a little chat with nurse about things I can and can't do 1St get home meeting. I also got new Nebuliser and lung function machine and medicine record book! All crazy! Tomorrow is last of my tac on iv I hope as levels getting better! Off all ivs apart from that one. It's a good feeling, feels like home is close! 

I'm still very very week and I think if I do go home it's cause I don't live far but il be back twice a week all day so although home il be in isolation and basically swapping hospital for my mums house! Got along way to go yet! 

I think people think wow new lungs home she's better back to normal! Far far from it. It's gna be at least 3-4 months or could be longer! Just being in hospital your more open to infections. So cause I live closer I can get home quicker! But anything could happen and I could be back just got to take it day by day! 

Now onto brighter note I can whistle, makes up for not being able to talk yet as vocal cords are paralysed! And I can proper kiss lee without it being a pathetic peck on the lips! Laughing hurts learning to use tummy muscles from the op! I sneeze weird and learning to cough again is so weird.. I yawn weird, like I take about 5 deep breaths whilst trying to yawn, it's quite funny at times! 

Trying to think of the things that are different, I can't wait to try blow up a balloon without using my nebuliser the cheating way or a bike pump! And in summer both up inflatables. It's the small things people don't even realise! 

Iv had a few visitors now pass few days other than my usual mum and lee bless them they need a break from this place! But now getting more steady shall I say I don't need them at my beck and call! Just want them haha

So Tuesday has been so amazing in different ways. 
I woke up and went through my tablets with nurse so I'm self medicating and no what I'm on and not on now, still on iv tac but should be last one, again changes daily! 

My Physio showed my lung function machine for home and explained about it all and drops and where to write it down in my little medicine book along with tablets etc. 

Then we done 6 minute walk test! Now I can't tell you how frustrating it is now being able to breathe but my legs not letting me move! My body is so weak but my lungs want to run and run miles ahead of myself but I just physically can't. I've lost all muscle literally my legs have never been so thin and I have twigs anyway, you can see the bone so clearly it's horrible. My weight is only 36kg and it's true what they say about weight pre tx cause you loose so much muscle and weight after. 

Anyways I sat down once on walk test and had my walking stick haha but was so slow and didn't walk back I was so weak! Still those baby steps but I'm still going well! 

I have to be so careful eating at the moment, tummy still not 100% and sometimes I have no choice I'm just sick so have to eat little and often which when your a fatty on steroids all you wanna do is eat everything in sight! Haha 

Now the best part of my day, they had an open day for the theatres where people have there transplants going on at Harefield today, mum and I wanted to go but then thought nah can't be bothered. Until one of the hca (healthcare assistant) came in and said we must go see it, so she was so excited we made the little trip and so glad we need, Everyone was lovely and it was nice to see people who were Involved in my journey awake. 
Had a few people say hi and obvs being so new having it all everyone was happy to introduce me to the mayor who was there at same time as me, lovely guy and he had had heart surgery so was nice to talk to him about his experience with Harefield too. They wanted a pic for paper, I looked so rough great!! Really gonna have to make some effort once home so people know I can scrub up ok! Haha

So I felt and saw a pair of lungs which was fascinating! 

And mum did a blood gas on a fake arm! I was too shaky couldn't do it! So annoying! 

So I came back buzzing from that! And then chilled for evening! New fav problem the hotel inspector! Haha I want to own a b&b now hahaha 


So normally big ward round but everyone's away at a conference so no consultants. I was hoping today would be the day where I would be off iv tac, but no :( 
Review tomorrow they said but everything. 
They forgot to request bloods so didn't take tac as on oral too till late cause have to have bloods before I take it at 10am it's like my kalydeco days 10am and 10pm. Btw that's something I haven't mentioned I am now off kalydeco since transplant as the drugs clash but I always new this, possible contribution to tummy problems, kalydeco helped all aspects of cf and creon amount was a lot less and in icu they just gave me creon and stuff cause on drug chart. That's my theory! 

Anyway back to today so bloods finally done about 11.30 then I had to wait an hour to eat as you can't eat hour before and hour after you take tac. 

Around 1.30 Dr came in and said Dr Carby wants to stop iv tac and had to take another 2.5mg of tac. So happy iv stopped now so hopefully neckline should be out tomorrow!! Happy happy on no ivs now! 

So today done stairs again and did one level so happy and down again!! Lee videoed it but don't think I can add videos to blog! 
So Physio said that's it now passed all home bits so getting closer just need a day/date! 

I had a little episode with tummy again around 4ish but I'm not sure it's tummy probs or me trying to get use to the amount of creon I need to take now! I forget cause my lungs work that cf effects other parts hahah it's always been my lungs my main focus! 

That's my little update I am going to go they pics when home and add once home so I can do the full journey in pics! Writing gets boring I'm sure everyone's bored of me rambling on haha 

Love love to all xxx


  1. Wow!!!Congratulations on your transplant so happy for you..

  2. Thank you for all the updates. Such an anazing story. You have been through SO MUCH. Be kind to yourself. Overwhelming is an understatement! Hope you get home real soon, and then post tx life can really begin. Wowsers! Lizzy x