30.9.14

Lush Gift...


Yesterday I got sent such an amazing gift from the lovely Kath and Rob who you all know as I mention them often! Here is Kath's blog incase you don't know who I'm talking about. It was such a lovely surprise and this just shows how well they know me :). 

It came in the loveliest box and the box is called "Wonderful You" and it came with so many things! A lot of them I haven't tried either and I'm really looking forward to trying them too! A lot of them seem to be really moisturising which if you know me is something I'm always looking for.

Working from the top down we have:- 

Flying Fox || Honey-rich shower gel with essential oils 

9 to 5 || Almond oil and dove orchid cleansing milk

Dream Cream || A gentle cream for upset skin with oat milk, rose water and charmomile blue oil to calm things down. 

Ro's Argan Body Conditioner || Smells like roses and is loaded with fragrant oils and butters

Honey Trap || Lip Balm for extra dry lips 

Gorgeous sample || moisturiser made with freshly juiced fruits and organic oils

Godiva || Made with nut oils and butters and leaves a lovely jasmine sent

Aqua Mirablis || Nutty body butter that scrubs and polishes skin

Sultana of Soap || An oasis for parched skin

Tender is The Night || A bit like King of Skin

I'm really looking forward to trying the Sultana soap the most it smells amazing and I can't wait to see what it feels like. The 9 to 5 smells gorgeous as well and that looks like it is going to be a particular fave. Basically I'm looking forward to it all. I cannot thank Kath and Rob enough they are way, way too generous! 
Hope you are well
As always, thank-you for reading guys and chat soon 
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28.9.14

A million thank-yous...

Original picture source || Edited by me
This is probably going to be all over the place but I just know I have to write it. 
Thursday was intense for so many reasons my 1st and 2nd false alarm were no where near as emotional or intense as that was on Thursday. All I can think about is what the donor family must be going through right now, what Hazel's family must be going through and what the 3 other families who were called that morning must be going through too. 

I know me and my family WILL get through this because that's what we do and I have the MOST AMAZING support system behind me, but do they? 

On Thursday I experienced something I have never experienced ever! I felt so unbelievably loved. The love and support pouring out from people was insane and although I couldn't see it all I could feel it and my sister was telling me the messages you guys were leaving me, and a bunch of you were texting me. Although I was extremely anxious when we thought it was going to go ahead I could just feel everyone willing me on to do well and to just get through this bit and then I would be on the road to my amazing future. I don't completely know how to explain it to you. When I got home that day I could see messages from people I don't even know on twitter and private messaging me on Facebook who had obviously seen what was happening through mutual friends and I just couldn't wrap my head around the fact that people I don't know wanted me to do well and were willing me on too. I'm probably being the most inarticulate person in the world right now... 

I wrote a status that night as I got home just really apologising to every one for putting them through that day because it was a long day for me and I was there getting all the information so I couldn't imagine what it would have been like for everyone else waiting anxiously for any minute detail of information from my sister. I honestly don't like having to put people through that.

I don't know how to thank everyone for all the love, strength and support they gave me on Thursday besides doing this blogpost. This is like my massive hug to you all. 

My family were amazing on Thursday, Megan and Mum kept me distracted from what we all thought was about to happen. Candice being a wonderful messenger ;-). Then Kath, Bernice and Gina for all the support throughout the day especially at the 11th hour Bernice and Kath's great advice definitely kept me calm. Then EVERYONE for the love and support I could feel throughout the whole day and got to fully appreciate when I could read all your lovely messages. 

This journey sometimes feels like a lonely one but whenever I feel like that I just have to remember all of you who get me through this in the dark and lonely times and I know that I could never be alone, not with all of you behind me willing me on always. I know you could have given up on me long ago but the fact that you are all still here with me, means so very much and the only way I can say thank-you to guys is like this, and I know that is never going to be enough but for right now that is all that I can do. So I hope you all know that I appreciate and love you all for your continued love and support throughout all of this and I will never take it for granted, ever, I promise! 

THANK-YOU!  

As always, thank-you for reading guys and chat soon 
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26.9.14

3rd time certainly wasn't the charm...

So guys I'm going to get right down to it. Yesterday at 8:53am I had my transplant call. I was informed that it would be quite a long day as it was still pretty early days but they just wanted to get me in to be ready. They had also called 4 other pre-transplant patients as back-ups for the organs incase one wasn't good enough for me. It just so happened that I knew the back-up for the double lung procedure as we are fellow PH patients and transplant patients and have known each other for a few years now and so that is where the story begins. 

I had all my specific people I needed to ring I rang my sister first because she had to go pick my mum up from work and bless her she didn't even get dressed out of her pyjamas don't worry though guys when she got to my house she borrowed one of my dresses. I called my mum at work and she basically just said by I'm going LOL. Next up was my older sister Candice who is the mediator between me and my Facebook as she has to stay home with her kids and then my Dad. Next I rang Bernice who was hard to get hold of because she was actually at clinic so being the smart old noggin I am I rang the clinic where a rather rude woman answered the phone who didn't seem to want to let me speak to her until I promised I would be on the phone for 1 minute. Then finally was Kath and Gina and we all seemed to get very excited. I think it was about 20-25minutes between me answering the initial phone call to being on our way. I think I forgot a lot of stuff, my toothbrush, one of my pumps and other silly little things. I think we just expected all calls to be in the nighttime so we just weren't prepared for a daytime call. 

It was a long drive about 2 and half hours which actually isn't that bad for getting to Papworth and I was quite excited for this one because it felt "different" compared to all the other ones.  When I got there I immediately got put on Mallard ward in a nice room with no other patients and I got to see Bernice pretty much straight away. We were both very excited as we thought "Finally!" I got to meet her granddad who I mistakenly thought was her dad thats a good thing though LOL. I then got to see the Co-ordinators who were dealing with the transplant that day they told me that I was the priority and that the transplant was mine all being good with the heart and lungs but just so I knew they had called in 4 other people as back-ups just in case to which I told them I knew that already as I knew one of the other patients which I think they found unusual. 

Honestly it was just a lot of waiting because there were a lot of delays with the donor hospital and they were waiting for operating theatres to let up and all that kind of thing. After getting ready and pepped talked into what was going to happen in the anaesthetic room at which point anxiety was building because I don't like arterial bloods done let alone an arterial line but lucky for me I text Kath and Bernice and they both told me they hadn't remembered that part so that calmed me down a bit. This was at about 8:05pm. At about 8:45 the transplant co-ordinator came in with a shake of the head and said "I'm so sorry it's not going to happen" I honestly felt my heart drop! I shouted and cried which I think was the anxiety leaving my body to be honest but I was just SO angry and then she proceeded to tell us that the heart had coronary artery disease that wasn't visible in the all the other tests they had done throughout the day. She apologised profusely because the kind of wait time we had isn't normal and was definitely unforeseen. I had to wait a further hour and half for transport to get home but had definitely calmed down a bit by then.

The lungs that were still okay went to Hazel my fellow Pher and transplant awaitee unfortunately we found out from Hazel's husband that Hazel died this morning from uncontrollable blood loss. A very sad ending to a horrific 24 hours it is definitely going to take a long while to recover from this one :( 

I did take some pictures throughout the day and thought you might like to see them...

Excited ambulance journey going to Papworth
Me and my bestie Bernice
Bored Peggy and I 
Another me and Megan bored one
Waiting to go home
As always, thank-you for reading guys and chat soon 
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24.9.14

When will my day come?

On Monday I had my Pulmonary Hypertension clinic which was just a general How are you? What's going on in your life type thing. So I told them about the constant dizziness and lightheadedness that I'm still getting and they believe it to either be a inner ear thing which apparently is not uncommon in people on my type of medication and because all my other readings like BP, heart rate etc. were all good they don't think it's the heart so they have prescribed me with another medication which if it is in fact a inner ear thing should sort it out. If the medication has no effect they'll start looking and seeing if it is my heart which it could be but we're trying to rule out easy things first :)  

In my 6 mins walk test I managed around 90 metres with one stop in the middle which I know doesn't sound like a lot at all but that's what I've been walking for around the last year so it's good in the sense I'm stable and it's not decreasing. I have to go in, in December/January (if my transplant doesn't happen in the mean time lol) to have a in depth echo as I haven't had one since August of last year and a bike test as well since I also haven't had one since last year. These test will tell them much more than the standard tests they normally do on me. I think they avoid doing echo's on me generally because they take quite a long time I'm usually there for around an hour and half because there are so many pictures they need to get of my heart because of all the different things that are in there but it's worth them doing every now and again just to keep an eye on things :). Although I abhor the bike test that's also worth doing just to get lots of different reading and me doing the bike tests means I have managed to avoid having a Right Heart Catheter for quite a number of years ;). 

However since my appointment all that has been on my brain has been getting my transplant. I try not to moan because I know that is never going to solve my situation but some days my brain just cannot comprehend the fact that I'm still stuck in the same situation that I was in nearly 2 and half years ago. I just want to be able to move on with my life and not be that poor sick girl that I have been known as for well my entire life but more so in the past 3/4 years. I just feel like "The List" is some form of torture and someone somewhere is getting their jolly's off of the fact that I'm still waiting trying to stay positive but slowly failing. 

You honestly start to ask yourself if you did something wrong and thats the reason you're still waiting or whether there is something you can do to make it happen. I don't think I've ever done anything bad or wrong and sometimes I just can't understand why I'm in this situation when there are murderers and rapists running around in perfect health.... Yes I do realise that your health is not subject to your life decisions but surely there should be some sort of karmic justice?!

The thing is it's not just for me that I want it for. I'm obviously the main reason because it's my life that we're trying to save but it's for my friends and family too. Bernice just text me (its 1:30am) telling me that she had a dream that I got my transplant and then woke up sad because it wasn't real and Kath told me she still sleeps with her mobile next to the bed incase I ring in the night. Bernice and Kath are Post transplant they shouldn't still be having transplant dreams and having to keep an eye on the phone. Then my family are constantly on call if someone wants to do something we have to make sure that there is at least one person who is able to drive to get down to Papworth and so we're always kind of constantly on standby. It's hard to explain but I want this not only for me but for my friends and family too. 

When will my day come? 

As always, thank-you for reading guys and chat soon 
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22.9.14

Instagram Diary...

Instagram --> @staciep90
You guys seemed to enjoy my last Instagram Diary and I haven't done one since the beginning of August so here is the next installment.

1. Me in my Princess Jasmine oufit  2. And again  3. Yummy strawberries  4. Daisy Necklace 
5. Albus Dumbledore wisdom  6. "Never Grow up" blogpost  7. My Kerry Alex Thorpe trust t-shirt  
8. My Kerry Alex Thorpe band  9. Ant and Dec time  10. Ant and Dec stage  11. Yum nutty chocolate 
12. Ant and Dec blogpost  13. Me and meggy in Reveal magazine  14. Good old Book 
15. Really gross coke  16. Millies Cookies  17. Smoothie!  18. In the Mail Online  
19. Toffee Popcorn!  20. Getting our Bake on  21. Eyes...  22. My baby Oliver  
23. Old school Jumanji  24. Xfactor goodies  25. My baby Alfred  26. Magic Tea  27. New Necklace  28. Pretty!  
29. Maggs London Make-up bag  30. Ready for Papworth  31. Nutella goodness  
32. Papworth blogpost  33. Little late night treats  34. Getting all snuggly  35. Snuggly with Oliver  
36. 2 YEARS 5 MONTHS blogpost  37. Trying to be healthy  38. Ready for Hammersmith

As always, thank-you for reading guys and chat soon 
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20.9.14

Acceptance...


THIS IS YOUR LIFE AND ITS ENDING ONE MINUTE AT A TIME, LIVE IT! || source
2 YEARS 5 MONTHS ON. 

I don't know how to explain entirely to you guys what waiting for a transplant is like especially if it isn't something you've had to experience or unless you've known someone who's experienced it, you'll kind of know but also not entirely either. 

Someone once said to me "It must be like waiting for Christmas?" No it's not is the simple answer to that one. Christmas will happen, it's inevitable the 25th of December will come round every year and you know it will, there are no ifs or maybes it will happen full stop. Transplant is something else entirely. I suppose the easiest thing to compare it to is the lottery, as long as you're on the list (or in lottery terms have a ticket) you're in the running to win the prize, the prize in this case being the organs I need but like the lottery you have no idea if you will ever be picked or meet the requirements to win. In the lottery you need the matching numbers with transplant you need to match your tissue type, blood type, body type, antibodies numbers etc. That however is where the metaphor ends if you don't win the lottery your life does not end it will carry on, however if I don't win my personal lottery the outcome won't be so nice. 

2 years and 5 months is a really long time and it is nearly 10% of my life so far which is crazy. While I've been waiting there have been times where I've been reluctant for it to happen on certain dates because I've planned something and already paid for it or I just have really wanted to do something I've planned. I've got to the point where I don't care. In jest with my consultant on Friday I requested that it happen around now so I could be recovered enough to be home for my birthday and christmas and I'm also determined that I want it to happen in 2014, they all laughed at me because obviously you can't just schedule it in like that, how I wish it were that easy. I have a few things planned in the next couple of months like the Cosmo Blog Awards, Bernice's 'Live Life Give Life' party, going to Harry Potter Studios with Megan, Bernice, Gina and Rosie for mine and meg's birthday. As much as I want to do all of those things I just feel like my transplant needs to happen now, no matter what I have planned. 

I wasn't ready last year and I know I wasn't. This year has prepared me for what I need to do, what I have to have done. My disease is so unpredictable though because I have days where I'm seemingly well and you think "Yeah, I could live the rest of my life like this. Maybe." Then you aren't well, you can't get out of bed even going for a shower is not an option, the energy just isn't there for you to waste it on that you need to conserve it so you aren't asleep for the entire day. They are the days when  you think "Nope, I have to do this because life isn't supposed to be like this." I still have the good days and I take advantage of them but now I know no matter how many good days I have there will always be ten times more bad days and no-one should have to live their lives for the occasional good day. I know transplant will be hard and I will have to fight like I've never done before, but it is the life that I have dreamt of that I will be fighting for and it will be so worth it in the end and I don't care what I have planned because what I'll be fighting for is something I've been planning, for so much longer.

This journey is a hard one and one I willingly chose so although I complain often about how long I have been waiting it IS what I signed up for even though I didn't anticipate this wait I knew it was a possibility though, I just drew the short straw. My long wait has given me perspective I might not otherwise have had. I have gained life long friends from this experience and no matter how long the rest of my wait is I know they will always be there for me. My long wait has fully prepared me for what is to come even though you can't always be entirely prepared I suppose, there are some things you just have to experience, dive in head first and I think transplant has a lot of that aspect going for it. If you knew entirely what was going to happen no-one would probably ever do it.

I just want to thank all of you have been with me on this exceedingly long journey whether you simply read my blog, post the occasional comment, tweet or Facebook message me I appreciate the support you all give me so much, it means a lot.   

As always, thank-you for reading guys and chat soon 
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17.9.14

Alton Towers getaway...

This weekend my little nephew turned FOUR which is insane in itself. I brought him transformers toys which he really wanted and seemed to really enjoy, he had a little super hero party were he was supposed to be batman but kids being kids he kept the outfit on for about 10 minutes and took it off. Little spencer got to be Hulk he wasn't fond of the wig bless him but looked SO cute in his outfit. 

On Monday Megan, Candice, Warren, Jaydon, Spencer and I all headed off to Alton Towers for a little surprise for Jaydon's birthday. We all stayed in the Splash landing hotel which is clearly aimed entirely for kids it kind of reminded me of Neverland from the "Hook" movie, you know the one with Robin Williams in? We left at stupid o'clock aka 5:30 on Monday morning and got to the Hotel for about 9:15ish and got straight to the fun. IT was obviously mainly for Jaydon and Spencer so we headed straight to the CBeebies land part of the park. I think Jaydon entered his version of heaven bless his little heart. 

WE spent most of the Monday in the CBeebies part of the park and did a few other things on the rest of the park like Pirate ships and Water rapids which I could actually do (YEY) and then the Tuesday we made our way round to the big rides for Meggy and Warren, they did a bunch; the smiler, Oblivian, Air and bunch others that I don't know the name of but because of my issues and Candy being pregnant we couldn't do them but it was so funny watching Meg she can't help but scream. 

Me and meg left about 1pm on Tuesday and left Candy, Warren and the boys to do some more CBeebies land and the aquarium we had so much fun though! Honestly I wouldn't say the place is the most disabled friendly place on the planet even if you are in a wheelchair the hills are insane and I feel so bad for Meg and Warren for having to push me up and down them but they had a nice workout LOL. I will definitely be going back there after my transplant :)   

Photos are either off of my camera or from my sister Candice :)
Hotel Lobby
Hotel Lobby
Hotel Lobby
Splash park in the Hotel
Jaydon in his bunk bed  in his hotel room that he loved!!
Hotel Lobby
Warren and Meggy on Air
Jaydon enjoying a ride
Cute Family pic on the "Night Garden" boat ride
Tired Jaydude 
Happy Spencer!
As always, thank-you for reading guys and chat soon 
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12.9.14

Pointless yet rewarding...


Hello my lovely lot

Today, being Friday the 12th of September, I had my Papworth clinic appointment. For those not in the know that is my pre-transplant clinic where they just check to see everything is all good with me and they take some more detailed bloods than my normal GP do. 

Honestly today was slightly ridiculous on the clinic front I was literally there for all of 10 minutes I spent longer talking to my friends Kath and Rob than I did actually doing the hospital bit. I know they have to have us come in every 3 months it was all part of the contract I signed when I agreed to have a transplant but honestly 6 hours in a car just to have some bloods and talk to a doctor for all of 5 minutes. Does that not seem pointless to anyone else but me? 

One good thing was that my Doctor did say after they last saw me they had the surgeons review my CT scans, X-rays and echo's and they have all finally agreed with me (Because I'm always right don't cha know ;-) ) that just doing a double lung transplant is not an option for me, there is a minimum of 5 things wrong with my heart that would pose very dangerous problems in that scenario and I would very unlikely survive that situation. Told you I was right ;-). In all seriousness though I understand why they tried to find an alternative route to go down because at the time I was pretty unstable and they just wanted to give me a better chance at getting a second chance at life. I did what I always do though I soldiered on and I'm much more stable now and they seem much more happy to carry on waiting now that my body has pulled its act together. So although a exceedingly boring clinic still positive. 

Afterwards I got to see two of my favourite people in the entire world Kath and Rob who were at Papworth for a patient meeting thing about the new hospital Papworth are planning on building, which is super exciting. I got to give Kath some flowers for her upcoming "1 year transplant anniversary" which has honestly just flown by! I also got to see a lovely lady who I have been Facebook friends and twitter friends with for quite some time which was lovely too. It's always nice to see people that you only ever talk to on social networks it actually makes them feel real LOL. 

Lets hope for yet another stable 3 months or even better my transplant call ;-) 

As always, thank-you for reading guys and chat soon 
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10.9.14

Afternoon Tea...

As days go today has been pretty busy, for me anyway. I was a bit of an idiot and scheduled in several different things at once which all had to be done before midday but the treat at the end of it was Afternoon tea with my twinny and bestie Gina. 

First off I had to get up at 7am which was most annoying for a person who stays in be till about 1pm usually but I did I peeled myself out of my bed and managed to make myself look somewhat presentable for the day ahead. First off I had a opticians appointment, it has been 2 years since my last appointment and as well as it being one of my guidelines for being on the transplant list it was time to upgrade the glasses. Luckily my prescription stayed the same and I ordered 2 pairs of new glasses very similar to my current ones but quite satisfying to have that done even if it was stressful picking them out. 

Then onwards to my Pharmacy to order all my meds and I would have left this till another day but I was a bit of an idiot and left it to very last minute and had actually used the very last of one of my pills the night before, whoops. While they did that which takes about 45 minutes to do because my prescription  is about 4 pages long lol we headed off to the Hospital to have my INR levels checked and once again a lovely stable result and won't have to go for another month, my body is doing me proud. Then after that which only took about 15 minutes we headed back to the pharmacy and they were on point today and already had my prescription ready to go. 

We were then joined by Gina at my house as Gina had just had a job interview and we all made our way to a place called Chiseldon House which is in our area and had a lovely afternoon having afternoon tea :). Little Cakes, Little Sandwiches, Scones with Jam and Clotted Cream and lots of tea and hot chocolate of course! It was nice to just have a chilled out afternoon especially for Gina and Megan as Gina is stressed trying to find a job and it was Megan's day off so it was good for them :) 

Here are some photos of our afternoon if you would like to see I really should have vlogged as I did so much but hindsight hey? I have also added another link to my features page as I was in my local newspaper today so if you would like to see that then just click here to go to the feature page and check it out :) 


As always, thank-you for reading guys and chat soon 
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