Wednesday, 9 March 2016

A reply from my donor family!

I Always feel so excited writing my blogs because i am just so full of life these days! I don't always get the chance to write as much but my life feels like there is no pause button at the moment it's all go go go! And I bloody love it!!

Makes up for all those years of writing about how rubbish my health was but how positive I was keeping when half the time, if I didn't have that train of thought I wouldn't have coped, and to be honest it probably just explains why I am still here!! Blogging and bugging you all!


So since my last blog I had some exciting news which explains the title of this blog!! Yes that's right I had a reply back from my donor family!! 

My cousin and little seb, her son had come to stay at mine for a few days, we were talking one evening about the letter I had sent to my donor family, we were bathing seb at the time, and she asked me if I had heard that the letter had been received or anything? I sent the letter off to the family back in November time as I wanted them to have it before Xmas, as it  was their first Xmas without my donor. 

So I told Sally nope hadn't followed it up but I knew the letter had been sent to the donor family's hospital. It has to go through people and be checked before it can be handed to the family and obviously the family can choose if they want to recieve the letter or not. 

I told Sals that I would email my transplant co ordinators that night to see if they knew if the family had received it or wanted it or not. 

Anyways as we were talking about it, my phone starting ringing, I left it as we  were busy and it came up as unknown and just thought well it prob someone trying to sell something, If it's important they will leave a voicemail and I carried on with sally and seb.

Then I went to my phone and saw there was a voicemail, so I listened to it, and my tummy went all funny, it was the transplant co ordinator asking me to call back to discuss something! 
Well it wasn't a transplant call obviously as i have new lungs now! Haha 

So it could only have been about my donor! My instant thought was, I've written too much in the letter about myself and that I need to re write it, and I just thought oh god I just want the family to see my letter and know how grateful I was etc!


I called her back straight away!!...She told me over the phone how lovely the letter was, and they had given me a lot of information and even included pictures of my donor! I was shocked to have even gotten a reply let alone that much information! She had to warn me that they had written about how she had died and talked about her funeral and where they were from and if I was comfortable and ready to know about it all! Of course I was! I was excited to see what had been said and so so grateful that they had made contact! She asked me when I was next in clinic to collect but I told her I wasn't till March but could I come up the following morning as I was eager to recieve it! I even asked if I could come up that night but was told wasn't really appropriate haha she was right and I was getting ahead of myself, I could wait till the morning!!


So I told Sally and she got emotional, and rung mum straight away and lee!! 

So the next morning I was up so early, couldn't wait to get mum and get to Harefield ASAP! 

We arrived and told them at clinic why I was up and could they contact rob! 
(The transplant co ordinator) it felt like ages before he came down! 

When he arrived he took me, mum, Sally and seb into one of the clinic rooms and handed me my letter! 
I was in total shock that I actually had the letter and straight away looked at the photos! 

My donor was a beautiful lady! Slim, blonde hair and a gorgeous smile! She looked like such a friendly lady and my heart felt so warm! 

The letter was from her husband, he was pleased I had made contact, and that I was the first one of the people who she had donated too and the youngest one! Made me feel happy to know she felt strongly about organ donation! And that she had managed to donate more than just her precious lungs! 

They told me about the type of person she was.
The more I read the more real it became now that I had someone else's lungs inside me, someone had saved my life! 
Not that I didn't feel it before, but now I have a name, a face and a story about her, it makes me feel very close to her and she's even more of my hero than before!! 

They asked to keep in touch, so I'm writing my letter back and will send some photos so they have a face for a name! I hope they're not disapointed! And I hope I do her and her family proud! 

After receiving the letter we decided to go to the local pub were mum had gone the day of my operation to celebrate her life with some bubbles! 



We also went to the park after back in Cobham :) 

I'm 6 months now and still doing so well! So I hope it continues like this! I'm getting stronger all the time, I'm enjoying life so so much! 

So it was lovely to have Sally and seb down! I even changed a nappy and looked after him for the day and took him to a kids soft play area with mum Libby and my friend Gemma and her little one Logan! And despite Sally probably wanting to kill me! I gave seb his first MC Donald's hahahahahaha and he absolutely loved it! A whole chicken nugget happy meal to himself with a fruit bag for pudding! 



So had a crazy night out again recently with some of my favs! 
Our first night out now bilbo is back from Australia for good! We had lots of fun and lots of drinkies and dancing!! 

These our the times I missed when I was unwell and life was on hold, sounds cheesy but I dreamed of doing all This and it makes me appreciate these nights even more with my friends! 

Good fun in our fav place! 

We also welcomed a new member to our family, my cousin mark and Becca his girlfriend had their second member to their clan little baby girl Lilly! So cute and so tiny!!! 

Auntie Pam, a proud granny!! 


So last week I had my icu visit! Lee came along with me, they do this for people who stay in icu for longer than 4 days at a time. Normally people in icu don't tend to remember much of the experiance or suffer with post traumatic stress from it all. I don't have any problems with that I just don't remember much of it-most of the time I wasn't actually awake so that's not my fault! Haha but the bits of it I was awake for are very fuzzy! And what I think happened turns out was all in my head and not real! 

So going back and them explaining where I was and what happened during my stay was interesting! Plus I got to meet some of the staff who looked after me, felt rude because I had no idea who they were but yet they knew me and my name very surreal! 

Got shown around by angie, the icu sister, she is so lovely and made me feel less of a weirdo after telling me some of the things people experience in icu, made mine seem normal. 
Although I thought there was a swimming pool behind a cupboard door and that one night all the anthethatists were in my room having a party and hiding gin behind my bed!! Haha I was told this wasn't in my notes and most likely didn't happen, and Harefield do not have any swimming pools attached to icu rooms Hahaha

Then I met Alex after the consultant of icu. I vagely remember him from when I woke up in icu the first time after they tried to remove my stent from my heart and it failed, he was so lovely and I asked him lots of questions and we went through some of my X-rays and bits from before and after my transplant! So interesting! 

This was the xray taken the night of my transplant! 


All this fascinates me! 

So had clinic this week 
Arrived at Harefield at 9.30 and got a gorgeous breakfast and then mum said to me can I eat that? I was like oh I don't know look how amazing it was and I had to chuck it 

Signed in for clinic and went off to do lung function which I was buzzing from it was now 75% whoop getting closer and closer to that 100% mark and I am so determined to get there!! And I will!! 

Back down to wait for bloods... Had them done and a nice to surprise to see my resting heart rate was 74!!! That's amazing for me! And sats were 100 whoop old fatty here weights 44.5kg  and everyone telling me how "healthy" I look and I said you mean fat! Hahaha 

So I have had to do the dreaded acid Relfux test! This is normal procedure post transplant. It's common in cf Anyways as most of you know, but routine for double lung transplant patients to check that the reflux isn't coming back up and causing it to go into the new lungs and damage them, which in the long run can cause rejection! 
They do it just like passing an ng tube down your nose and into your stomach then they pull it back to make sure it's in the right bit before your stomach! 
Google description 
    Esophageal pH monitoring is used to check how much stomach acid is entering the esophagus. It also checks how well the acid is cleared downward into the stomach. It is a test for gastroesophageal refluxdisease (GERD).
So if you had asked me to do this a year ago I wouldn't have had any problems, wouldn't even have thought twice about it, but now i am so out of touch with any of this stuff! I've been so well I've  forgotten what it's like to be ill and go through stuff!! Nice feeling most of the time but it meant I was shitting myself before  Monday! Literally couldn't sleep the night before- being the biggest woose ever!!

So it came to the day and just got my "fuck it" head on and went for it! I was so fussy, so use to do ng tubes before I have my own routine and I had to do it myself! Got it down, don't even know why I was working myself up so much! The tube was tiny!! And once it was in apart from it sitting a bit uncomfortably in  my Nose it was fine!! 
I had to do it myself and Infront of the mirror, not because I'm vein, lol but because I find it easier to guild it down! 
And most importantly constantly keep sipping my drink!! 

If I had known I didn't have to use water, I would have used what I use to do to put my ng tubes down, bit of apple juice mixed with maxidul  to make it slimmy so it goes down a lot easier!! And you can eat before but let's face it once it hits your gag reflex your going to gag and chances are you'll be sick!!
So once I got it past the gag bit I let Anne do her thing! (The lady who does the tests at Harefield) 

So as you can see from the picture the probe sits in your esophagus but when I put it down I had to put it into my tummy and then she slowly pulls it back and on the machine it lets her now when it is in the right position.
She then explained what I had to do for the next 24 hours. 
So I had the button I had to press when I was sitting up and laying down, so they know my position. 
My eating and drinking start and stop button. 
Had options 1,2 and 3. 
1 was heartburn so if I experienced that I had to press it. 
2 was if I coughed, pressed it! 
And 3 of i cleared my throat! 
After this I went for a cheat xray to see it was all ok and to make sure it was in the right place! Was looking forward to seeing my xray, been a wile since I'd seen these beautiful lungs of mine and was hoping they would be a lot more black on the xray! Wish I got a photo of them because they were lovely and clear! And the probe was all in the right place! Whoop. 

So we went off for lunch at the harvester in ruslip and then came back for clinic. All went well, bloods all good, tac levels good, lung function still going up each time so that's good. I'm still getting a lot of pain in my right leg when I do exercise and walking after a while, had scan on my leg not long again and that all came back normal, she thinks it could be caused my nerve damage from groin line, I'm not convinced but see what happens. I just hope it's going to be ok in June for my great strides walk!! Il do it either way! No pain no gain haha

Don't have to be back for clinic now u til may! Whoop 

I was told to eat good that made Relfux worse so they could see what happens...so lee got me a lovely Chinese for dinner that evening!! 

And then I went to bed with my little friend attached to me, pushing away at the buttons when I need to! 

Then the next day I was off back to Harefield to get it taken out and I coudknt wait, it actually felt better the next day as I was use to it now but still couldn't wait to blow my nose and have my normal non tubey nose back haha 
Cheeky bathroom
Selfie to show u what it looks like! Haha

So hopefully il get the results back in a week or so and see if they need to do any further tests or if I'm ok! I had to stop omperzole 7 days before and donperidone 3 days before so I'm glad. It's over and done with now and back to tAking those tablets again!! 

So that's it for the long old post! 
I sent my reply back to my donor family at clinic this week so hopefully they will get that soon!! 
Saw this and wanted to share with you all 

Much love to all xx

1 comment:

  1. What a wonderful blog today! How extremely exciting to hear back from your donor family so quickly! I got a lump in my throat just reading the emotion in your blog. I'm so excited for you. I hope your test came back good. Thank you for taking a moment from your amazing new busy life to let us readers know how you're doing. Keep on living it to the fullest!

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