Hey guys! So as of late I've been spending a fair bit of time in the Norfolk region of the country and I don't share a lot of what I get up to whilst I'm there mainly because it's been winter and the weather has been horrible and therefore I'm not very motivated to get out and about when it's freezing but that being said I thought I'd share a little place that I went to this week called Blickling Hall. Warning Picture heavy post lol.
Pre transplant, these type of places were really a no go for me because there would just be too much walking involved in visiting a place like this and we know I was always a little bit stubborn when it came to using a wheelchair. Blickling Hall had all these beautiful gardens and are beautiful to wonder around and even though we're only just getting into spring even without leafy trees and lots of flowers it was all still really pretty and kind of just reminded me of "the secret garden" before the end of the movie when it becomes all beautiful and flowery at the end and there actually was a secret garden as well! You can tell we're reaching spring as well because there were so many Daffodils around, some may have gotten a little squished though after someone may have rolled down the hill in them lol!
It was lovely to just be able to walk around there and it kind of made me happy that I managed to do 10,000 steps in one go because I've just not been up to scratch lately with my steps but I have been feeling unusually tired lately so I'll be asking Papworth about that next week at clinic :) hopefully it's just a bug coming on or maybe my iron's a bit low of something, I'm sure it's nothing a little blood test won't figure out.
I can't wait till we're in full blown spring and summer though and I'd love to visit it again when all the flowers are out and the trees are all leafy and green again. I'm really starting to look forward to summer and spring and getting out and about in it. Summer has never been something I've really looked forward to because heat is just not something I've ever dealt very well with and although I still imagine that's the case I think I'll appreciate it all much, much more now and probably deal with it much better than I ever used to because at least now my lungs will be able to breathe in the heat which I reckon will make everything so much easier :) So I'm a very excited Stacie at the moment.
I've never really had a problem writing, writing my feelings down like I do on here because to be honest I'm never worried about who's reading this. You know people don't have to read this if they don't want to, when you click on my blog I assume you want to read whatever it is that I have written and if you don't like it you just click off, easy peasy. I don't really have to think of whether I'm offending anyone and I don't have to try and impress anyone either. This is my space and I put what I want on here with no fear of what happens when I do I mean I"m not that controversial and I'm unlikely to post anything ground breaking so this is just for me.
Last week I had to write a letter, I say had to I didn't have to write it I chose to write it but it felt like something I had to do. I wrote my letter to my donor family. In total it took me a week to write, I went back to it everyday and changed it everyday. It was so hard to write! The problem for me was I don't know who I'm writing to, based on her gender and age I can make an educated guess based on those things but that also makes it even harder. What do they want to hear? People say to me that they just want to know I'm alive but is that really the case? I mean I could be alive but what if I was having problems? Would they want to know about those? No. I'm positive they probably wouldn't. I guess they need to know that whoever my donor is their family needs to know they made a difference and I found it extremely hard to write because maybe the things that I think are amazing aren't amazing to them. The fact that I can now walk up my street is incredible to me but they might think that's pathetic, but they don't know that walking up my street was a dream a year ago. It was very hard how do you explain to someone how hard something was? How getting through each day was simply a struggle whilst also trying to express the gratitude towards them and their dead loved one that you will always have.
I kind of went with a blogpost approach, that was easiest for me, I typed it up first because that made it easier if I needed to change it and I could come back to it when I needed to. I wrote to them as me. I didn't try to sound like someone I'm not, I didn't try to impress them. I simply told them how it really is. How what they did for me changed my life, I told them all the little things that may not seem miraculous or amazing but were miraculous and amazing to me. Like having a Bath up to my neck for the first time, something that may not seem like anything but at one point in time that was everything to me I spent 2 years craving it and missing it so, for me, it was something I will never forget and never be able to thank them enough for. I wrote it up after a whole week of editing writing it out on writing paper it took a whole two hours because I was taking more care writing that letter than anything I've ever written in my life but I'm pleased with the end result.
I don't know if whoever my donors family are will want to receive my letter, if they will ever read it but for me it's something I had to do because even if they don't read it or don't want it I will know that I thanked them the only way I was able to.
So this is more than likely just going to be a ramble of thoughts rather than a coherent blog also just to clarify as well it's not a blog about me complaining about Mothers day and saying it shouldn't exist and all that kind of stuff it's just simply a few thoughts that I have that I'd like to get out.
I find the concept of Mothers day and Fathers day odd, I mean I get it in a sense. I love being able to buy my mum a bunch of flowers and it's nice to really let her know how appreciated she is because she does a lot for us and has always been there for us and especially this year my mum has been through a lot in that she had to go through the emotional turmoil that was my transplant and she was in hospital every single day with me, she didn't leave the hospital at all that entire time! So Mothers day is great in that I get to show my mum how much she is appreciated. I just have a few gripes with the whole Mother and Fathers day thing.
This started from a Facebook status that I posted the day before Mothers Day and I asked "On a side note I'm still waiting for my 'I can't have/don't want children' day..." Now just to clarify I can physically get pregnant that is not the reason I can't have children my body is perfectly functioning in that way but the reason I can't have children is more because I'm not really allowed to have them. I've mentioned this before but just so all the information is you know here I'll say it again, when I was put onto the Transplant List one of the first questions they asked me was "Do you want children or ever plan on having children?" (I was 21 years old, my answer was no to both and that answer has not changed in the past 4 years) they replied that, that was good because after transplant I would not be allowed to have children. They can't physically stop you from having children as that is still your choice but they really don't advise you having them because of how physically demanding carrying a baby is and how much strain that would put on your new organs especially a heart. There would also be the medication side of things where a lot of the medication that transplantees are on could adversely affect any child you carry so a lot of changing of medications would need to happen and even doing this can risk you, your baby and your organs. This is why if you do plan on having a baby they like you to let them know so they can sort things out before you get pregnant to get your body used to different medications to try and eliminate the risks that, that side of things carries. Anywho for me children have never been on the table I was told when I was eleven that I couldn't have them and therefore I've very much grown up knowing that they just wouldn't be in my future when I was told at 21 even after transplant they still wouldn't really be an option it didn't massively affect me on any level it was simply rehashing old information. People do ask me whether or not I would risk it and simply, no I wouldn't, I'm very selfish in that sense and I wouldn't risk my life to bring a child into the world and I wouldn't risk a baby or my new organs. It's taken a lot to get me to this point in my life and would not risk that for a child.
Some people suggested adoption and fostering and both I have thought about over the years but the problem with having a transplant is that this generally puts the people that deal with that off. Although transplant gives us extra time it doesn't give us the same life expectancy as everyone else and this puts them off letting transplantees from adopting or fostering because they don't want to put children who have already been through a lot through more in the potential scenario of you dying which is more likely than a person with no medical problems at all. Even though we can all say "Who knows when any of us will die?" with a transplantee you can at least say without doubt that the probability of us dying within 5 years of our transplants is much, much greater than someone else who has not had a transplant at all. So would that be fair to put a possibly already emotionally affected child through even more emotion turmoil?
Now my thing that I have with mothers and fathers day is I feel like it rubs it in our faces and by our I mean those of us who are unable to have children. People said to me there is son or daughter day or there's aunty day but I mean come on! These aren't really days that get celebrated are they? Have you ever seen a Aunty's day card in a shop or a Daughters day card? NO. I'm not even saying I want to be celebrated for being a aunt or a daughter or a sister because I feel very much appreciated especially by my little nephews and niece they show me all the love in the world whenever I see them and just to be able to see them develop and turn into the little characters they are is more than enough for me, I don't need a card to know that they love and appreciate me. My question is why does the fact someone chooses to have a child get celebrated more than someones choice not to have children? Even if I could have children I really probably wouldn't because to be honest it's just not my thing but I mean there are some people that didn't even actively choose to have a child it was a complete accident they simply slept with some-one possibly made the decision not to protect themselves, so why does that get celebrated over some physical choice not to have a child?
This shouldn't be construed. Mothers and fathers should be appreciated by their children because there are so many mothers and fathers out there who sacrifice so much for their children and they provide for them and give them all the love and support that they could ever need I just don't know why we need a day for that? It should be something shown always. It's like Valentines day what the hell is that for really? The only thing I can think of is, it's a reason to have chocolate, I like Valentines day because I do like to see all the love thrown around but we shouldn't need it and why is mothers and fathers day always on a Sunday?! I'm sure my mum would much prefer mothers day to be on a day she actually works and she could have that day off instead not a day she already doesn't work.
Anyway that's my opinion on it. It's just a bit of a ramble really.
Hello my lovely, lovely lot. SO I know it's been a while since I blogged but I thought one nice big blog to get you all up to speed with life lately although saying that the past 5 days have been super lazy on my part but I still have a few things to update you on so lets do it.
Last week I got to go to my wonderful Friend Kath's Book Launch which I blogged about in [this post] and I was so excited to go because I knew there was going to be quite a few of us transplant folk there (although this also made me nervous too.) Kath held it in the same place that her daughters Wedding reception was in which I was meant to attend back in June but of course my transplant had only just happened and apparently according to doctors going to a wedding a week after you have a transplant isn't a good idea. I think I was perfectly fine though ;-) It was so lovely though, it was in a barn which was beautiful and Kath did lots of signing of her book she was like a proper little celebrity and she looked so amazing! Me and Bernice kept saying how it felt like being a proud parent. Rob made a speech and he mentioned how there were lot of different transplant people there One kidney (My lovely friend Jacqui) Two Heart transplant people, Two Double Lung Transplant people and Six Heart and Double Lung Transplant people. To be a majority is very unusual for a Heart and Double Lung transplant recipient but it was very cool. We got to have tea and cakes and scones as well so I think me and Bernice were in our element :-D
The Day after that I got to go to another Book thing where Mark's friend Keiron Pim was doing a talk before a showing of a film called "Performance" because he wrote a book called Jumpin' Jack Flash: David Litvinoff & the Rock'n'Roll Underworld which has a lot to do with that film :-) Honestly I was a tad confused through the movie but then it was from the 70's and I'm pretty sure it was meant to make you feel like you were on drugs whilst watching it. I may have made a stupid comment afterwards as well as there was this dude in the movie who apparently was Mick Jagger, I thought it was a bloke playing Mick Jagger but apparently not it was Mick Jagger playing a down and out musician person anyway I may have said afterwards "So was Mick Jagger in a band?" I can only simply roll my eyes at myself but in my defence I know very little about current pop culture, let alone pop culture from the 70's and yes I know The Rolling Stones are supposed to be these legend type people but still that means very little in my head lol. I'm going to have to read the book now though as it did seem really interesting!
My little Niece turned ONE on Wednesday! That year went by So unbelievably fast although it feels like a lifetime ago as well It's hard to remember what life was like without Skyler in the world and I was also extremely ill when she was born as well yet it's hard for me to really remember how ill I felt the day she was born I just know that I did feel horrid. It's very strange to not remember what that kind of pain feels like especially when it was this all encompassing thing in my life for so long and Skyler will never know the me I was when I had Pulmonary Hypertension she'll only know the me I am with my transplant which is nice, she'll probably see me in a bad state at some point but hopefully that's far off in future and she'll be old enough to understand what's going on as will her brothers. She had a little party today to celebrate which was fun and she's becoming more a little person every-time that I see her.
Other than that though I have been fairly lazy this week as my FitBit can testify. I'm a bit chesty at the moment and quite frankly the weather has not been very inspiring either lol. So TV marathons, lazy sofa days, a drink in a pub or two and a bit of socialising has been just what the doctor ordered :-)
I'm in my 20's and after waiting 3 years,
I underwent a heart and double lung transplant because I suffered from a illness called Pulmonary Hypertension.
This blog is where I documented that journey and will continue to document all the amazing highs and the lows post-transplant. I hope to continue to raise awareness for both PH and organ donation and I would love for you to continue to share this journey with me.