Sunday, 4 October 2015

First post Transplant clinics!

First two weeks since being discharged! 

So I had my first post transplant clinic at Harefield on Monday 21st which Lee took me to! we had to be there for 9-9.30 so I could get my bloods done before taking my tac. Was interested to see what my tac levels were because I had been told not to take tac over the weekend! 
Also had weight and blood pressure and love having my obs done and seeing my sats at 99-100! Best feeling ever!


I was surprised how clinic was, I thought post transplant it would be different but it's pretty much the same as before! 
You do all the tests in the morning, I only had bloods then took my 0.5mg of tac. Then lung function and X Ray! Simply! Then didn't have to be back until 2! 

The only thing different this time was I had to have a meeting with the pharmacist to go over my drugs, make sure I understand and happy with it all. My god the walk from clinic down to the place was hard work! I'd ditched the wheelchair now and completely reliant on my stick at this point but still so weak on the old twigs (legs) I got half way and we found a wheelchair and stole it.


We still had a long day ahead and I'd only left Friday so muscle in leg were still non excitant and I felt like I was going to collapse, legs like jelly, I was shaking! 

I had to go to the ward I was on because I'd left my purse and make up bag when I was discharged on Friday! Quite essential things but when you have a hubby and staying in a house full of girls not so much of an issue over the weekend. Hahaha I sound like such a brat! I promise I'm not!


We went to pub for lunch but I started feeling so fever like, my temp was fine and everything is good, I think it's my lovely hormones and girly part of my body telling me it's still working and not changed! Which I suppose is a good thing considering I'm so underweight!! Plus I'm still not completely back to normal with tummy!

Just seems to be bloated constantly and food when I can eat doesn't want to digest properly! 
So I couldn't enjoy lunch which annoyed me and I was so cold! All I wanted to do was curl up in the car with the heating on and heated seats and have a rest before the afternoon clinic carried on! 
So we drove back to the hospital and did just that! An hour rest really helped boost me for the afternoon! Plus it was a miserable cold rainy day, and those days you just want to be in bed with an hot water bottle and a good girly chick flick!!


Afternoon was much better and I finally met a fellow tx patient who I've been chatting to and has been so supportive for so long Sharon! 
It's so lovely to finally be able to meet the people who help you thru the crap stages and who reassure you that post tx things are normal or what your new you is like! I'm very lucky I have a lot of people I can turn to for advice as well as the hospital Obvs! And I finally got to see one of my besties Veronica!!!! We all had a chin wag together before carbs (dr carby) called me in!


Everything went well, I was told to get walking more outside and get a good coat, raining is not an excuse not to go out!! Ha and my tac levels were 10.3 so all good and now on 2mg twice a day! along with 500mg of mmf and 10mg of steroids.

Second clinic I had on the following Thursday, i dragged mum this time.. I smashed it! Ha it's such a long day of waiting around but done my lung function in the morning which had improved slightly I was told, don't actually know what it was. Then we had some treats and thank you cards to take to the ward for being so amazing, they really were, the staff go above and beyond and they are so supportive ESP on my low days. and I got to see my fav nurse, hard to single out because literally I got on so well with them all but grace really was a star and felt like a friend!

also saw my super hero surgeon Aron, popped in to say hey! I think this pic is  appropriate, my donor maybe my hero, but without Aron and his super skills I wouldn't be here either!! Haha 



saw one of the reg I think she is, so lovely Italian lady wish I remembered her name, I keep saying it but everyone is so lovely! was literally in there for 5 mins, all my levels were good, to stay on 2mg of tac now and off I went! see them again the following Monday!

Two weeks seems crazy I feel like I've not stopped every day I've had one day where I've just slobbed out in pjs! 

Still getting tummy problems, but it's so much better than it was in hospital! Frimley have taken over the tummy problems now which I'm happy about, I missed them all too, I turned up in November 14 and didn't leave! It was lovely to go back and visit everyone without being in a wheelchair and stuck to oxygen! 

The last time I saw them was me being taken in an ambulance off to try get the stent out of my heart the first time when it fell into my heart, that's when I ended up in icu and wasn't aloud to leave Harefield! All back in July so long time ago! 

So tummy issues, after visiting them and feeling great, I ended up being heavily sick and sent off for a tummy X-ray, turns out I'm still full of shit! Haha my bowls have just gone sluggish and need to start back on the gastrogavin and movicol, not been keen as limits me going out as you can imagine!!

Anyways I tried the movicol, then the few days after I felt so sick and if I burped I was sick, pretty rank! So I stopped that was getting the worse cramps and just felt crap. So started back on the seena tablets which are a bit more gentle and natural type of laxative! 
It's bollocks all of this! Pre transplant I didn't get any of these problems I've always gloated and been very lucky how it's just my lungs, well kinda lucky! Haha 
Now the lungs are sorted, tummys a mess, voice has gone, legs are pathetically weak and I'm deaf as fuck! Hahaha small price to pay I suppose I love being able to breathe and all the other bits will sort out eventually! 

Anyway onto non moaning bits. I've been going on some lovely walks with lee and Mason to get me nice and fit and these legs a bit stronger, also didn't realise how beautiful the area is around me! 

These photos were off the A3 in Surrey place called Oakham, we're all the dodgy doggers go! Dirty men! 
Haha lovely walk though! 


Me and my Mason 

Me and lee 
Had to add this photo because it had us in hysterics, fail of a photobomb!! Thanks Mason! 

Also we went up to newlands corner 

Some beautiful views! 

So last week I had to have some nuclear medicine test. This is a routine post transplant test 

Like a ct scan but you don't go into it, well you do have a ct scan after. They lay you on this bed. Then they inject you with a tiny bit of radiation stuff into your veins. Then they make you breath in some gas stuff for 15 mins and they see how much fills up your Lungs etc.
I was really worried about the breathing in for 15 mins, I thought I'd be exhausted after, but no I need to forget about my old lungs, it was easy! Wasn't exhausted at all, my head has not caught up with these new lungs and here ability! 

The scanner thing goes around you and gets all your lungs, you can see your lungs come up on a little screen. 
So yeah all good and I was radioactive and had to keep away from preggers woman and children and babies for 24 hours! 

It's been so lovely to get back into normal life, being with lee again, like a proper married couple! 
I missed it so much, I spent most of this year in hospital getting visited, now we can be together and enjoy our new future together! 
Like I keep saying it's the small things! 
And pizza nights!!
And had a lovely lunch with mum and auntie Pam! And enjoyed a lovely pina colada or two hehe 

So that's my life summed up ish I've prob left loads out, but I'm loving life, nothing can prepare you for this, it's amazing to be able to breathe and enjoy the small things the most! I will update more regularly so I can keep track on my new lungs life!! 

Oh and I was featured in bella magazine last week!


It was a lovely little article so thank you to Amy at bella! 

Thought I'd end this blog worth a little plea for anyone reading who is still unsure or hasn't signed up for organ donation please consider and sign up here if you agree or my story has made you decide, it only takes two minutes and don't forget to speak to your family about your wishes as hey have the final say! 
https://www.organdonation.nhs.uk/register-to-donate/register-your-details/


3 comments:

  1. You go girl. Can't believe you superimposed Aarons head onto superman. Has he seen it?
    Cannot wait to see you soon xxxx

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  2. Such a wonderful entry to read! I'm still checking in on you and am so glad to see that things, for the most part, are going splendidly! These are some wonderful photos and how great it must be to finally be back with your husband, just where you should be! You keep on doing good young lady and enjoy those new lungs of yours. You'll be making your donor so proud. Live for yourself, your husband and for your donor! Hugs from Texas

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  3. Nice post Georgina.Glad your doing well now(as for the make up thing though dont worry about what you look like as true beauty is inside).

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