Saturday, 31 October 2015

Harefield stay and lots of chit chat x

Firstly im loving my new blog layout! hope anyone reading this likes it to compared to my old layout. I chose the colour as its the birthstone colour for the month I got my transplant and I love the colour too anyways so all works well! 
massive thank you to Abigail Elkins Design !!


So since my last post things have been a bit rocky, nothing serious though and these lungs are still working a charm. 
but transplant isn't all straight forward! 

last week I had my bloods done at clinic on the Monday and the results showed up that my white blood count was 0 so I was told to sit away from everyone in clinic and once I saw my consultant simona I was told to come off my MMF, Valgancyclovir  and my Septrim drugs, to increase the levels. 

I was told to do my temperature twice a day and if it was to go up to 37.5 or above I would have to be admitted or if I felt unwell. 
With my levels that low I am more prone to infections! 
long story short it didn't go up, well it kinda did they went up to 0.2 on the wednesday. 
I woke up Thursday morning and didn't feel 100% I mean this is going to sound mega dramatic compared to the past not feeling well but so early after being transplanted you have to be extra careful and as my levels were so low I wasn't going to take any risks! 
I had a scratchy throat and lung function had almost dropped 10% so I emailed them straight away as I knew they wouldn't be in clinic yet and I had to go to Frimley for my hearing aids to be fitted at 9am so I went to the appointment and waited to hear from Harefield. 

Here's me looking extra special getting my hearing aids fitted! 


So that was all custie, still trying to get use to them, they're  so big and bulky in my ear and to be honest I don't feel that different with them, just louder! I'm still deaf as fuck!! 

So after I came out of the appointment I had a voicemail from the transplant nurse saying to call back and could I get to clinic asap. So off we went from One hospital to another! 

Got to Harefield had bloods, I'd already taken my tac so couldn't do those levels but had rest of bloods, then X-ray and lung function which was low. Fev1 1.26

In the afternoon waited to see what the crack was. 
Was called in to see Rohan, he's a really lovely dr! He said my xray looked good and it did...
compared to the one I had done not long after leaving Harefield, but my white blood count had gone back down to 0 again so stopping the drugs had not helped, he also said my crp had gone up.

 I asked him what to as he seemed concerned so imagined it being high...I burst out laughing when he told me it was 17!! I was like seriously that's classed as high! I was over 300 pre transplant but I suppose you have to be careful with all this now and they are suppose to be between 4-11 I think! 

Anyway I couldn't escape it this time I had to be admitted! Had a cannula put in at the clinic and was told to wait in treatment room until a room was ready for me on fir tree ward! 

Lee got himself comfy on the bed! But I was much happier in the special chair!! 


So finally got to the ward around hour later, walking up there with my nurse Fiona, she handed me a mask and said I had to wear it to protect myself lol I looked ridiculous!! 
Waiting for my room! 

Then I got to my room and it was either I wear a mask or anyone who comes into my room has to wear one and be gowned up! I was so shocked, I felt fine!
My nurse Kat! 

Me and auntie Pam! 
I got upgraded masks on the ward! Hahaa was told if I needed the loo I would have to use a commode as the toilets are shared on the ward... But there was no way I was going back to using a commode, so I whacked my mask on and sneaked off to the toilets each time, they secretly knew but couldn't stop me!! and I never asked to use a commode haha so the next day I was moved into a room by the desk which was en suite! 

The first night I was giving an injection called 
Granulocyte-colony stimulating factor (G-CSF or GCSF), also known as colony-stimulating factor 3 (CSF 3), is a glycoprotein that stimulates the bone marrow to produce granulocytes and stem cells and release them into the bloodstream.

That was a cheeky Internet explaination haha But yeah, well Fml I woke up around 5am the next morning in a weird pain, was like a spasm in my upper thigh!

 I'd never felt anything like it!! unlike a muscle pain where you can rub it to help, it wasn't helping because it wasn't the muscle it was the bone!
 I didn't know what it was and I started to think my body was really run down so was scared to mention to the dr as I wanted so badly to go to the James Bond premier that lee had got tickets for from work as he worked on the film sets and the premier was for the construction crew members in Leicester Square! 

So I didn't want any reason apart from the obviously low immune system to stop me from going, but I assumed my levels would have come up by Saturday morning so I could go! 

Well when the Drs came around Friday I decided to be sensible and tell them...turns out I was fine it was a normal side effect to the drug! Kinda relieved but wish they had told me first! 
My levels hadn't gone up on the Friday so it was looking more and more likely I wouldn't be going to the premier on the Saturday morning!!

Anyways I asked still and he said He can't physically stop me but i shouldn't be going as its a cinema and people could be full of colds and bugs! 

So later he comes in with the pain nurse and he kept quiet and after a few minutes of being lectured into how serious it is being this low and how she had cancer and she was that low for 87 days etc etc I knew where the convo was going! ESP as soon as she mentioned I shouldn't go to busy places like a CINEMA! 

Anyways as gutted I was too be missing the premier and seeing sexy bond, which I'd been so so so looking forward to going to as we didn't get tickets for last years one, I was being sensible, I've not come this far to risk my health over a film! 

Anyways I had to have another injection that Friday evening, and omg went to bed about 11pm and woke up screaming in pain and in floods of tears!! The pain was out of this world! I would rather have a transplant all over again than go through that! 

My upper bum lower back was in agony!! I ended having to have double tramadol, morphine as the paracetamol didn't even touch the pain. I think I finally got to sleep around 5am and woke up again at 8 in pain! Was just horrible. 

Found out my levels had gone up to 0.7 so was going in right direction and dr said they wouldn't do another injection and see what levels were like on Sunday..... And we did and they jumped up to 9.9!! Haha so good bye masks and hello freedom I was allowed to go home!! 

Whilst in hospital I done my bit to help Ashley's campaign and to get her those magical lungs!! 

 Before we packed up my room, we Went for a little harvester dinner first 

Was so happy to be going home that night as we had booked to go to the Isle of Wight to visit lees grandparents on the Monday evening and I had to pack and do washing! So going home Sunday worked a charm but had to be back Monday morning for clinic! 

Clinic all went well and my white blood count had then jumped up to 17 and was likely it would go up more!! So now they were too high! Haha so started me back on my MMF tablets but at the lower dose of 250mg twice a day instead of 500mg previously! 
Lung function was highest so far at 58% it's so nice to be at that but wish it would be a lot higher already! Determined to get it to at least 75-80% for Xmas!! More walks and get me into a gym!! 

So off we went to the Isle of Wight Monday evening! 


We got all the way to Southampton went for a cheeky MC Donald's as I'm addicted to their cheese bites at the moment for about 18.50!! Our ferry was booked for 19.15 and we so just enough time to eat and to get on. As we were eating I said to lee, you did put my drugs box in suitcase didn't you!!

Long story short he didn't , I didn't and of all the drugs to forget when we were going away off the mainland for a few days, I would forget my anti rejection tablets. I didn't even have enough in my handbag to cover me for a few days and no steroids! 
There was a lot of swearing in the car for the next 10 minutes haha then luckily my dad saved the day, lee rang the  ferry port and explained the situation and my dad went to my house picked up the box and drove half way to meet us! Life saver! And we got on the ferry at 9pm instead! :) 

We had a lovely few days over

 there seeing lees grandparents! Haven't seen them in such a long time and not been over to the Isle of Wight I think we worked out at least 3-4 years! 

Whilst over there we tried to go on the needles ride but it was lashing it down with rain and neither of us were feeling that tbh! 
So we went shopping in Newport instead!! And had a lovely dinner out with the family at a pub called the crab tree that evening In skanklin! 
The next day we visited monkey haven! It was a small, cute place but more for kids! Something different to do anyways!
 
Yeah I'm just too cool!! Lee is so lucky to have such a cool wife! Hahaha we went out for a nice Italian that night! I'm so deaf they spent the evening either laughing at me cause I couldn't hear or just repeating themselves a million times whilst I sat there smiling and nodding! Haha the restaurant was so loud it gave everyone a run for their money on the old hearing! 

I wake up in the morning to a picture message on my phone from lee, the little fucker!! 

Then the last day we chilled in for the day... 

weather wasn't great again and we was going home that night! We had a lovely roast cooked by grandad and sue in the evening and chilled a bit more then set off to the ferry home! 

I returned to Harefield the next day for blood tests to check all, and then after that I had to go to Frimley to pick up more gastrografin as I'm still getting problems with my tummy, also had an X-ray which I got a photo of! Basically I'm still full of shit! 
On way back from X-ray I bumped into my fav person on the ward!! Gotam! Prob spelt his name wrong! 
Missed him so much ESP when I was in Harefield, I had one of his pens he gave me just before I left and I used it all the time! I lost it after and was gutted!!, gave him a big hug and got him a can of redbull Incase I bumped into him!! He's my redbull buddy! 
That was last Friday. 

Sunday we celebrated my little sister Hannah's 19th birthday at breakfast at fego, I sound old but can't believe she is 19, I feel old, but look the youngest so all good ha
Her the night before ha 
Libby, me and Hannah the birthday girl!! 

Today was mine and lees 3rd wedding anniversary, we weren't  in a massive mood for celebrating, lees been in agony with a tooth abscess so no fancy meals or alcohol, he's on lots of painkillers and antibiotics and he has a puffy half face! Haha bless him! But I looked after him well and Cooked him his fav for dinner a nice roast! 


I was in Frimley park cf clinic again today to see Chris my consultant to try see if we can come up with a plan for this stupid tummy of mine! Typically it was better today but gone massive and bloated again this evening!

So I've got to continue with 100mls of gastrografin until Monday, go back for an abdominal X-ray to see if much has changed from last one! 
Change my domperidone from 20mg twice a day to 10g 3 times a day. 
 And see what happens. Klean prep was mentioned, but would have to be admitted for that and not feeling going in at the moment in there!! 
But he said he doesn't think I'm at this point yet! But that's the back up plan!
Got to drink at least 1.5litres of water a day and redbull and lucozade doesn't count towards it! Lol 
I asked him when will I get my flat tummy back!? Not so soon!! 

Unfortunately this might not be a quick fix and could take a long time to get sorted as I was in bed not moving for 8 weeks and had my transplant and was sedated twice and all that rubbish so naturally even for normal people things would Take a while to get back to "normal" and they aren't dealing with cf bowls, plus I have had to also stop the ivacaftor (kalydeco) now  because you cannot take them with anti rejection tablets, no matter how much I'm trying to persuade them to let me be a Guinea pig! I even have a pot left!! Haha so all in all my tummy isn't happy! 
But il get there whatever it takes!
I also saw my lovely Charissa dietian, we opted not to be calling her the poo lady! Poor woman, all I talk to her about now is  poo!! She wants me to do a little food, creon and poo diary until Monday to get an idea of what's going on with  creon too etc (creon is the tablets that digest the fat in my body as due to cf we cannot digest fat without the enzymes we take) 

As I'm not the smartest cookie I told her instead of saying how much I've had to eat etc I'm going to take pics of my food and send to her so she has clearer idea of how much exactly I'm eating and how much creon I'm taking with each food to see if it's enough or too much. And the lovely diary of what my poo is doing, she wasn't keen on the idea of me sending her poo selfies. So that I will just have to describe! Which she then mention there's actually a poo chart which they compare to chocolate bars!! 
Normal one 
Alternative one! 
Sorry I'm talking a lot of shit now hAha anyways so that's my homework until Monday, don't I live a glamourous life!

Another annoying thing, my scars are generally healing quite well but one of my drain scars has gone very raised and red and slightly itchy! Been told it's a keloid scar so not much I can do, surgery could help but would have to discuss with Drs and as I'm only 2 months I doubt they will touch it yet. 

It's only one of them which I'm lucky with considering where else they have cut me open! 
I'm still doing my bio oil at least once a day sometimes two or three!

One more thing I wanted to mention, which is important for me to write down about... I've started to write up a draft letter to my donors family! 
This is something I have always felt very strongly about! I feel they have given me such a huge part of their loved one and my donor was an amazing woman to have said yes and agreed to organ donation, and her family giving the last say! Such a tough decision at such a tragic time in their lives! 
Most people take months some even years to write to their donors family's. Some do it straight away! I wanted to do mine or at least start mine now so I don't forget all the life charging things these lungs have given me! Thankfully doing my blog helps me document it all too! As often late at night I  look back at old posts to see my thoughts and feelings at that time! ESP my very early entry's! 

But this has got to be one of the hardest letters I have ever had to write! I want to tell them all the amazing things I can do now and I want to tell them I'm so thankful to be here, but I also have to take into consideration that as great as it is for them to hear they have helped me and my donor has done the most heroic thing, they are also greifing and still very early days! Once they get this letter If they choose too, which I am 100% prepared for them not too, it is going to bring up a sad time in their lives!
 So I have to have a balance when writing this! I also have to be prepared for them not wanting to see my letter or if they do I hear nothing back. Again this is totally up to them and all I want is for the family to be happy and be proud of their loved one! And most importantly I want to do them proud too! My donor will live on in me, she is very close to my heart. She is the reason I wake up every morning, take a deep breath in and am thankful to still be here and to have more time with my husband and family! 
So this is to be continued, but the process has started from my end! 

Anyways sorry for such a long blog but this is prob one of the most important parts to my blog, they say save the best till last! 

My gorgeous Ashley Moore finally got her lungs! Been so hard to keep to myself in glad I can talk about it now!! 
I've been so worried, and although I had absolute faith she would get them, there was always that niggling feeling that it wouldn't come in time, and I didn't want her to be one of those that didn't get the chance like so many people sadly don't!!  #hopeformoore has made a change and been a massive global campaign now, although started and aimed for Ashley, it signifies all those desperately waiting for that second chance too! And there simply isn't enough people donating to save everyone who is waiting for that gift! 

But Ashley's story will change this, I really hope! She has had a massive support from alot of celebrity's via Twitter! And just because she has had her transplant, I'm sure Ashley will not want this to stop #sayidonate #hopeformoore needs to carry on!! 

This is a photo with Ashley's lovely family and friends! I spent a lot of time with Ashley's mum Diana over the past few weeks and she is such an amazing woman along with her lovely dad bob and her wonderful husband Alastair! And I can't forget the woman who got us in contact and who continues to push the campaign the lovely Pamela!! 

And not forgetting Ashley joining in on Halloween with her eye drops 
I cannot wait for Ashley to be up on her feet and running out of that place! And when I can give her a big hug! She's incredible! And everyone should inspire to be like this woman! She could so have easily given up! But she didn't and that is one of the bravest things to ever have to deal with!!

That's all from me, my life big catch up!!
Lots of love!! 
Sprog xxx

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