Following on from love on the transplant list here's a documentary by gloustershire universitys Charlotte Miller Kirstie: My New Lungs Please share and help spread awareness for Cyctic fibrosis and Organ Donation.
I really like this doc, I feel it shows me honestly. I hope you like it to.
Showing posts with label Organ donation. Show all posts
Showing posts with label Organ donation. Show all posts
Monday, 6 April 2015
Thursday, 6 March 2014
Transplant troopers
So I have been very busy here's one of the projects iv been really busy with Transplant troopers calendar a vintage calendar featuring transplant recipients and those still waiting for transplant.
I'm one of the four girls organising the calendar, on the team is Victoria Glenn, Charlotte Davies and rachel Prosser.
Here is a sneaky peak of my month, which we have released. The final one is different form this and even more exciting so you will have to buy the calendar.
It's released in August. Our website is www.transplanttroopers.co.uk and our Facebook group https://www.facebook.com/transplanttroopers?ref=hl
I would like to give credit to
Matt Austin - photographer
Make up - kylie bosense
Hair - Jessica Littlewood
Venue - barnfield theatre
This photograph will be featuring in Devon life on the 13th march
I will be updating my blog in the next few days on a few other things iv been working on including, two more magazine articals, a photoshoot, my website, toastmasters and my new training schedule!
- Posted using BlogPress from my iPad
I'm one of the four girls organising the calendar, on the team is Victoria Glenn, Charlotte Davies and rachel Prosser.
Here is a sneaky peak of my month, which we have released. The final one is different form this and even more exciting so you will have to buy the calendar.
It's released in August. Our website is www.transplanttroopers.co.uk and our Facebook group https://www.facebook.com/transplanttroopers?ref=hl
I would like to give credit to
Matt Austin - photographer
Make up - kylie bosense
Hair - Jessica Littlewood
Venue - barnfield theatre
This photograph will be featuring in Devon life on the 13th march
I will be updating my blog in the next few days on a few other things iv been working on including, two more magazine articals, a photoshoot, my website, toastmasters and my new training schedule!
- Posted using BlogPress from my iPad
Monday, 10 February 2014
6 month
Today 6 months ago I received my second double lung transplant. My gratitude to both of my donors is un explainable.
I am so sorry for the family's loss, I hope that in there hearts they can find some peace from such a huge grief. I know that grief doesn't fade or lessen but I hope that maybe through this donation they can find some comfort. With every breath I am thankful for this gift, the gift of life that both my donors have given me. I live every second with the purpose to live it to the full.
For now that is all I can say, I'm planning to write to my second donors family soon.
- Posted using BlogPress from my iPad
I am so sorry for the family's loss, I hope that in there hearts they can find some peace from such a huge grief. I know that grief doesn't fade or lessen but I hope that maybe through this donation they can find some comfort. With every breath I am thankful for this gift, the gift of life that both my donors have given me. I live every second with the purpose to live it to the full.
For now that is all I can say, I'm planning to write to my second donors family soon.
- Posted using BlogPress from my iPad
Thursday, 9 January 2014
Getting signed with an agent
So approximately a year ago I decided I would like to get into tv presenting. Something that probably sounded very far fetched at the time. I even questioned myself. Was it asking to much to have all I have and wish for the dream career? Would it be simply to unobtainable with my health constraints! It's certainly a hard career to get into anyway let alone after having a double lung transplant, cystic fibrosis, diebeties, osteopenia and juvenile chorionic arthritis. These were all my thoughts before I had faced chronic rejection and had a second double lung transplant.
I did a piece with itv west-country which I presented myself, then shortly after my health started to decline.
With my second transplant my confidence was knocked and all idea of tv presenting seemed impossible. The on dec 30th 2013 myself and Katie gammon appeared on itv daybreak http://youtu.be/MUFAZMawqwk and with that the presenting dream was reignited and conversation in the green room led to what I hope will be my big chance! I was put in touch with a agent.
This agent represents many of the great tv presenters and faces I aspire to. Most of all Katie piper. Katie piper was burned by acid a attack and left disfigured and gravely injured. She proves to me that even through great adversity people can still achieve careers within media, that may seem beyond our grasps. Does a world of glamour and pretty people have room for chronic illness and disease?
So I have been in contact with the agent, who I'm being signed with. Firstly to start doing more public speaking, but paid work unlike all my public speaking so far. This means things like corporate events. After time it will lead to more media appearances and progressing to TV presenting. They also work at book deals, which the past month I have been thinking a lot about writing my story down properly, not as a blog but a novel. I feel like I've hit the jackpot and I'm extremely excited to start my career.
I'm also doing some work experience with itv West Country which has been on the back burner for some time now. It's in Paignton zoo filming a baby oragutan. I'm looking for lots of opportunities like this to get experience in tv. Just shadowing tv journalism, radio and presenters as this is the only way I can get my experience up and improve on my knowledge of the media world. I hope to specialise in health presenting and journalism drawing light to other people's illnesses and helping them with there campaigning just like so many have done for me.
Im aware iv been given a unique window of opportunity, it may shut at any time, but while it's open I'm going to make the most of it, does TV and media have a place for someone like me? Will my health become an obstacle? As I have been telling everyone if I fail because I didn't try, I don't deserve it, if I try and fail then it was never ment to be.
I did a piece with itv west-country which I presented myself, then shortly after my health started to decline.
With my second transplant my confidence was knocked and all idea of tv presenting seemed impossible. The on dec 30th 2013 myself and Katie gammon appeared on itv daybreak http://youtu.be/MUFAZMawqwk and with that the presenting dream was reignited and conversation in the green room led to what I hope will be my big chance! I was put in touch with a agent.
This agent represents many of the great tv presenters and faces I aspire to. Most of all Katie piper. Katie piper was burned by acid a attack and left disfigured and gravely injured. She proves to me that even through great adversity people can still achieve careers within media, that may seem beyond our grasps. Does a world of glamour and pretty people have room for chronic illness and disease?
So I have been in contact with the agent, who I'm being signed with. Firstly to start doing more public speaking, but paid work unlike all my public speaking so far. This means things like corporate events. After time it will lead to more media appearances and progressing to TV presenting. They also work at book deals, which the past month I have been thinking a lot about writing my story down properly, not as a blog but a novel. I feel like I've hit the jackpot and I'm extremely excited to start my career.
I'm also doing some work experience with itv West Country which has been on the back burner for some time now. It's in Paignton zoo filming a baby oragutan. I'm looking for lots of opportunities like this to get experience in tv. Just shadowing tv journalism, radio and presenters as this is the only way I can get my experience up and improve on my knowledge of the media world. I hope to specialise in health presenting and journalism drawing light to other people's illnesses and helping them with there campaigning just like so many have done for me.
Im aware iv been given a unique window of opportunity, it may shut at any time, but while it's open I'm going to make the most of it, does TV and media have a place for someone like me? Will my health become an obstacle? As I have been telling everyone if I fail because I didn't try, I don't deserve it, if I try and fail then it was never ment to be.
Monday, 6 January 2014
When do you get back to work
Something iv been thinking about is when do you go back to work post transplant? Especially double lung transplant?
Well my first transplant is as keen to get back to work, but then I went Back to fitness pole dancing 3 months post transplant it was at my leisure, I could choose when and how often I taught. I enjoyed it and it was enough to keep me occupied, but not stress me out and over work. I think they were both important because I was still recovering mentally and physically after the trauma of ecmo and transplant. I'm happy I did that.
This time I was forced back to work as I wasn't entitled to incapacity/esa benefit and with being homeless because our rented house was full of mould (not good for lung transplant, especially newly transplanted lungs) we had to put our dream, buying a house, into fast forward. Living with my nan and then in my mums annex when she was able to move into her house as she had just bought and was renovating. Therefore I had to go back to work to be able to afford rent and bills. So exactly 3 months post this transplant, despite being heavily depressed and anxious which I was seeing the phycologist for, I went back to work.
Let me explain a little about my mind set at the time, I was anxious because as you may know I'm still at high risk of chronic rejection, I was trying to get over another dance with death, saying goodbye to my family and friends, grieving for my donor whilst feeling forever grateful to them and dealing with the confusion that I had said goodbye to the lungs that had saved my life although my connection with my first donor is always in my heart. I didn't know if I'd recover or how well I'de recover. My doctor suggested I didn't go back to work yet for medical and mental recovery, feeling maybe. The last two years had caught up with me.
I didn't want to go back, getting out of bed on some days was hard, I was still extremely physically tired and having various other recovering issues i went back and It was hard at first I'm not going to lie. Sometimes I wish I had had 6 months to recover but being back at work gave my Mind other things to think about and then buying our home and being busy with that to, there wasn't time to think and that was just what I needed.
So I guess when people ask me, when should I return to work? It's different for everyone but most important thing is when is right for you and in my opinion whether you go back to work or not having something to keep your mind from Everything can be really good, but remember all our thoughts and fears have to be dealt with in the end. The phycologist gave me a specific time and day I could think about it all deal with as much of it then and then lock it away till the next week so I could function as a human being and be happy.
- Posted using BlogPress from my iPad
Well my first transplant is as keen to get back to work, but then I went Back to fitness pole dancing 3 months post transplant it was at my leisure, I could choose when and how often I taught. I enjoyed it and it was enough to keep me occupied, but not stress me out and over work. I think they were both important because I was still recovering mentally and physically after the trauma of ecmo and transplant. I'm happy I did that.
This time I was forced back to work as I wasn't entitled to incapacity/esa benefit and with being homeless because our rented house was full of mould (not good for lung transplant, especially newly transplanted lungs) we had to put our dream, buying a house, into fast forward. Living with my nan and then in my mums annex when she was able to move into her house as she had just bought and was renovating. Therefore I had to go back to work to be able to afford rent and bills. So exactly 3 months post this transplant, despite being heavily depressed and anxious which I was seeing the phycologist for, I went back to work.
Let me explain a little about my mind set at the time, I was anxious because as you may know I'm still at high risk of chronic rejection, I was trying to get over another dance with death, saying goodbye to my family and friends, grieving for my donor whilst feeling forever grateful to them and dealing with the confusion that I had said goodbye to the lungs that had saved my life although my connection with my first donor is always in my heart. I didn't know if I'd recover or how well I'de recover. My doctor suggested I didn't go back to work yet for medical and mental recovery, feeling maybe. The last two years had caught up with me.
I didn't want to go back, getting out of bed on some days was hard, I was still extremely physically tired and having various other recovering issues i went back and It was hard at first I'm not going to lie. Sometimes I wish I had had 6 months to recover but being back at work gave my Mind other things to think about and then buying our home and being busy with that to, there wasn't time to think and that was just what I needed.
So I guess when people ask me, when should I return to work? It's different for everyone but most important thing is when is right for you and in my opinion whether you go back to work or not having something to keep your mind from Everything can be really good, but remember all our thoughts and fears have to be dealt with in the end. The phycologist gave me a specific time and day I could think about it all deal with as much of it then and then lock it away till the next week so I could function as a human being and be happy.
- Posted using BlogPress from my iPad
Sunday, 20 October 2013
Saturday, 7 September 2013
Recovering
I have had a short break from my blog, so I apologise to those who have asked for updates. The reason for my break was to take time to heal, reflect and recover. Although I'm writing this it certainly doesn't mean I have finished that process, post transplant recovery take months, some say your not recovered physically for about a year, emotionally I guess everyone is different, but I don't know if we ever truly recover from near death experiences although they do get put to one side and for us to carry on life in the most 'normal' way possible. As I said in a previous blog before my chronic rejection set in I felt the most recovered and 'normal' as I would ever get. Now my goal is to get back to that and rushing emotional recovery isn't something I would ever do.
So where am i now? I am out of hospital I have been for a week and a day, it's been 4 weeks today since my transplant, 4 weeks since some stranger once again gave me the gift of life, 4 weeks and some where there is a family out there grieving, please think of them and wish them peace and my donor rest peacefully in heaven.
I am at my nans with my husband while I recover and we look for a house, our first house to buy. It's so exciting and at the same time scary, it's such a huge decision when looking at houses whether we are going to pick the right one for us. I can't tell you how happy I am that I have such a normal worry such as buying a house!
Physically I am weak, but no where near as weak as I was the first time, but still I have a way to go, I am walking lots and sometimes I forget to rest in between, my mind thinks I can just go back to how things were before, my body is in need of time, but I know we will get there.
Finally I just want to take a minute to thank you, thank all of you who have supported me, helped my hospital packs in the last few months which will be ready to go out for Christmas. I have been buying lots of fun crafty things and exciting goodies for them and it has provided me with much needed distraction from myself and my own situation. I want to thank everyone who had donated to the packs and to the fund which my friend set up for me personally, I have no Idea what I will spend that on, but I will put it to good use. I also want to thank all the lovely people who sent me cards, present and simple messages of encouragement. These message in those hours of darkness brightened my day and on good days widened my smile. Simple things have such a great effect and I cannot thank everyone enough.
- Posted using BlogPress from my iPad
So where am i now? I am out of hospital I have been for a week and a day, it's been 4 weeks today since my transplant, 4 weeks since some stranger once again gave me the gift of life, 4 weeks and some where there is a family out there grieving, please think of them and wish them peace and my donor rest peacefully in heaven.
I am at my nans with my husband while I recover and we look for a house, our first house to buy. It's so exciting and at the same time scary, it's such a huge decision when looking at houses whether we are going to pick the right one for us. I can't tell you how happy I am that I have such a normal worry such as buying a house!
Physically I am weak, but no where near as weak as I was the first time, but still I have a way to go, I am walking lots and sometimes I forget to rest in between, my mind thinks I can just go back to how things were before, my body is in need of time, but I know we will get there.
Finally I just want to take a minute to thank you, thank all of you who have supported me, helped my hospital packs in the last few months which will be ready to go out for Christmas. I have been buying lots of fun crafty things and exciting goodies for them and it has provided me with much needed distraction from myself and my own situation. I want to thank everyone who had donated to the packs and to the fund which my friend set up for me personally, I have no Idea what I will spend that on, but I will put it to good use. I also want to thank all the lovely people who sent me cards, present and simple messages of encouragement. These message in those hours of darkness brightened my day and on good days widened my smile. Simple things have such a great effect and I cannot thank everyone enough.
- Posted using BlogPress from my iPad
Saturday, 10 August 2013
Here we go again!!!!(Stu's update)
Ok this is unfortunately not Kirstie sending you this message but her wonderful husband Stu. Kirstie has asked me to pass on what happened today so you guys are up to date.
Well I'll start from Friday morning as Kirstie has already covered Wednesday and Thursday so mine should be a happier blog with less tears ( except for my dad.)
Started off as a normal day really nothing to strange from the last few days wake up go pee, drink, talk, watch TV and play on iPads and phones.
Visitors of the day were me(Stu) Kirstie's mum, Chris,Caz,Luke and Logan (Kirstie's brother and his little family) and also Lee (Kirstie's older brother).
20:40fri
After that not alot when everyone left me and Kirstie just chilled out on her bed watching TV, when we had a knock on the door to which a face appeared. I hadn't seen this face for two years so just thought he was working tonight and he just wanted to pop in and say hello. I didn't even registrar that it was Rob ( TRANSPLANT CO-ORDINATOR) so I just said "hello" he must of thought "twat". Which I was, he then went on and said its very early but we may have some lungs for you. I got up and started walking around the room in complete shock looking into my wife's eyes and knowing that we were both thinking ' already! That's crazy we only sorted this yesterday and now we are here' all I wanted to do was hug the guy as all he does is bring me good news ( he was the one who said it was ago last time ) be went over it was very very early and there are still tests and obstacles to get through first.
Once Rob left we just looked and said ' ok let's do this' we took the phones out and called the parents we decided it was far to soon to let everyone know as we were so far off. Kirstie then had to go on bi-pap as breathing became difficult because of the situation and she was struggling her mum came over later in the night as she couldn't sleep and waited with us for any updates on what's happening she was worried about Kirstie as she was visibly struggling and in the early hours we had to get more pain relief so she could get some sleep.
7:00sat
Rob came back and said everything was looking good even our biggest worry which was the anti-bodies, remember Kirstie's were at 80% which really put the odds against her. There was just the final checks and it would be all go. More phone calls to family letting a few more people know as we were getting close.
8:30sat
Ok it's ago 'your going down at 9:15' this was it phones out iPads going Kirstie wanted people to know she couldn't keep it bottled up any longer it was happening and we didn't have long. Kirstie got worse during this time her breathing was awful and it was defiantly time to do this. I guess for her this was her first time waiting going through the stages and waiting to go down as last time she was on ECMO and didn't have a clue. I was so happy for her this could give us more time together to complete her goals and fulfil her dreams.
9:15sat
We start the walk down to theatre we get there take a few photos say good luck give Kirstie a kiss then let them take her through.
That's it my mind now thinks about her previous donor and there family and the two years they gave to Kirstie and what she did in that time you all know so I won't go into detail, Im just praying that they know what Kirstie did and that they got Kirstie here, she really did do the donor proud she was non-stop in her goal to get people to be organ donors enjoyed life to the full and finally she had a bond with them one that I know played on her mind. She didnt want to let these lungs go they gave her so much she had so much respect for what they gave her.
I was also thinking about the current donor praying that they didn't have to suffer and thinking about the pain there family must be in I really have no idea how they are dealing with such a tragedy. I was in pieces after Wednesday and I still had Kirstie in my arms for a few more weeks. I'm so sorry for their loss and all I can do is promise you Kirstie will give these lungs the same respect and love she gave to the last. And thank you everyday for the great gift that they have given, we will also never forgot the last ones also thanking them everyday as without them she would quite simply not be here. Thankyou
22:30
So here I am now putting all this down after spending 10mins with Kirstie this evening, she was sedated and will not be woken until tomorrow and we have been told the op went well.
it was a long day of waiting checking the time and trying to answer messages texts and calls that were coming through. I didn't realise how many people follow her and the amount of messages she gets daily I know she try's to talk to everyone as she well loves to talk to people and hear there journeys and help people through there tough times whether it be patients going through tough times or family's watching loved ones struggle she always does what she can to help and she always gets upset when she can't.
I have so much respect for what she does and how she battles she has honestly changed my life for the better. It makes you realise the important things in life and makes you wonder what others do and some people's lack of respect for life.
So that's it all up to date any questions just ask and I will try to answer until Kirstie's back up and running then she can have this back not really my thing but I have been told I have to do this or I would get a slap. Trust me she isn't afraid to hit me given the chance.
Thankyou again to the donors and their family's as without I wouldn't be doing this right now. I will never go a day without thinking about you and thanking you everyday for your gift not just to Kirstie but to me and the rest of Kirstie's family and friends we are all very very grateful
Xxxxxxx
Stu
- Posted using BlogPress from my iPad
Well I'll start from Friday morning as Kirstie has already covered Wednesday and Thursday so mine should be a happier blog with less tears ( except for my dad.)
Started off as a normal day really nothing to strange from the last few days wake up go pee, drink, talk, watch TV and play on iPads and phones.
Visitors of the day were me(Stu) Kirstie's mum, Chris,Caz,Luke and Logan (Kirstie's brother and his little family) and also Lee (Kirstie's older brother).
20:40fri
After that not alot when everyone left me and Kirstie just chilled out on her bed watching TV, when we had a knock on the door to which a face appeared. I hadn't seen this face for two years so just thought he was working tonight and he just wanted to pop in and say hello. I didn't even registrar that it was Rob ( TRANSPLANT CO-ORDINATOR) so I just said "hello" he must of thought "twat". Which I was, he then went on and said its very early but we may have some lungs for you. I got up and started walking around the room in complete shock looking into my wife's eyes and knowing that we were both thinking ' already! That's crazy we only sorted this yesterday and now we are here' all I wanted to do was hug the guy as all he does is bring me good news ( he was the one who said it was ago last time ) be went over it was very very early and there are still tests and obstacles to get through first.
Once Rob left we just looked and said ' ok let's do this' we took the phones out and called the parents we decided it was far to soon to let everyone know as we were so far off. Kirstie then had to go on bi-pap as breathing became difficult because of the situation and she was struggling her mum came over later in the night as she couldn't sleep and waited with us for any updates on what's happening she was worried about Kirstie as she was visibly struggling and in the early hours we had to get more pain relief so she could get some sleep.
7:00sat
Rob came back and said everything was looking good even our biggest worry which was the anti-bodies, remember Kirstie's were at 80% which really put the odds against her. There was just the final checks and it would be all go. More phone calls to family letting a few more people know as we were getting close.
8:30sat
Ok it's ago 'your going down at 9:15' this was it phones out iPads going Kirstie wanted people to know she couldn't keep it bottled up any longer it was happening and we didn't have long. Kirstie got worse during this time her breathing was awful and it was defiantly time to do this. I guess for her this was her first time waiting going through the stages and waiting to go down as last time she was on ECMO and didn't have a clue. I was so happy for her this could give us more time together to complete her goals and fulfil her dreams.
9:15sat
We start the walk down to theatre we get there take a few photos say good luck give Kirstie a kiss then let them take her through.
That's it my mind now thinks about her previous donor and there family and the two years they gave to Kirstie and what she did in that time you all know so I won't go into detail, Im just praying that they know what Kirstie did and that they got Kirstie here, she really did do the donor proud she was non-stop in her goal to get people to be organ donors enjoyed life to the full and finally she had a bond with them one that I know played on her mind. She didnt want to let these lungs go they gave her so much she had so much respect for what they gave her.
I was also thinking about the current donor praying that they didn't have to suffer and thinking about the pain there family must be in I really have no idea how they are dealing with such a tragedy. I was in pieces after Wednesday and I still had Kirstie in my arms for a few more weeks. I'm so sorry for their loss and all I can do is promise you Kirstie will give these lungs the same respect and love she gave to the last. And thank you everyday for the great gift that they have given, we will also never forgot the last ones also thanking them everyday as without them she would quite simply not be here. Thankyou
22:30
So here I am now putting all this down after spending 10mins with Kirstie this evening, she was sedated and will not be woken until tomorrow and we have been told the op went well.
it was a long day of waiting checking the time and trying to answer messages texts and calls that were coming through. I didn't realise how many people follow her and the amount of messages she gets daily I know she try's to talk to everyone as she well loves to talk to people and hear there journeys and help people through there tough times whether it be patients going through tough times or family's watching loved ones struggle she always does what she can to help and she always gets upset when she can't.
I have so much respect for what she does and how she battles she has honestly changed my life for the better. It makes you realise the important things in life and makes you wonder what others do and some people's lack of respect for life.
So that's it all up to date any questions just ask and I will try to answer until Kirstie's back up and running then she can have this back not really my thing but I have been told I have to do this or I would get a slap. Trust me she isn't afraid to hit me given the chance.
Thankyou again to the donors and their family's as without I wouldn't be doing this right now. I will never go a day without thinking about you and thanking you everyday for your gift not just to Kirstie but to me and the rest of Kirstie's family and friends we are all very very grateful
Xxxxxxx
Stu
- Posted using BlogPress from my iPad
Location:Harefield
Thursday, 8 August 2013
'We can't relist you'
So yesterday me, stu and my mum sat while my dr, nonnie told us that there was no way I was going to be put on the transplant list and that they were arranging palliative care. I had only a few weeks left to live. We were devastated, my mum and stu were in tears and I was just shocked. This was based on my reflux test still coming back positive. We rung loved ones in tears and watched as our world fell to pieces.
Today we had another test, this time the team came and told us that the test had come back ok and although i still had reflux, they were willing to put me back on the list and would be able to do a emergency op afterwards to sort out any reflux but I would have to be peg fed to stop any reflux damaging my new lungs. I still only have a few weeks window for transplant as I'm so ill and unfortunately I have extremely high anti bodies of 80% meaning the likely hood in getting a match is very slim and there is no way they can bridge me on ecmo this time. So once we miss the boat it is truly missed and there's no more tricks up our sleeves.
This means palliative care is still very important but we have a chance, a small window of hope. They repeatedly said if anyone can do it I can! Please keep praying for me and hoping that this small window is all we need. We have had some desperate and devastating times in the last 24hrs. I am now using bipap when needed and unable to walk anywhere. Just to visualise how far we are into the rabbit hole already.
- Posted using BlogPress from my iPad
Today we had another test, this time the team came and told us that the test had come back ok and although i still had reflux, they were willing to put me back on the list and would be able to do a emergency op afterwards to sort out any reflux but I would have to be peg fed to stop any reflux damaging my new lungs. I still only have a few weeks window for transplant as I'm so ill and unfortunately I have extremely high anti bodies of 80% meaning the likely hood in getting a match is very slim and there is no way they can bridge me on ecmo this time. So once we miss the boat it is truly missed and there's no more tricks up our sleeves.
This means palliative care is still very important but we have a chance, a small window of hope. They repeatedly said if anyone can do it I can! Please keep praying for me and hoping that this small window is all we need. We have had some desperate and devastating times in the last 24hrs. I am now using bipap when needed and unable to walk anywhere. Just to visualise how far we are into the rabbit hole already.
- Posted using BlogPress from my iPad
Monday, 8 July 2013
National transplant week
I know for those of you out there waiting for transplant, or perhaps considering being listed for one my previous post may have been some what scary. I'm not going to lie, it is scary, but iv always been an honest blogger, someone who shares the highs and the lows, because surely without the lowest of moments we cannot see how high the next peak is? Also I believe the truth however scary it may be can only leave you informed and ready right? Ad I hope those of you who read my blog are prepared for every truth, otherwise you may be on the wrong page.
So where am I going with this, well it's national transplant week, this week also marks my transplant anniversary. 2 years ago, I was dying, kept alive on the most invasive horrendous machines, my call came in what was the last hour of my life for sure. Thanks to the generosity, kindness and courage of a family I do not know and person I will never meet. This week I will mourn my donor, I will celebrate them, I will be thankful for every little precious moment they have allowed me and I will pray for there family because I know they lost there loved one this week 2 years ago. I do this every day but this week I'm not going to shut up about how grateful and lucky I am and how I believe giving the gift of life is the best gift you can give.
So although for me this time is hard at the moment with chronic rejection, my lung collapse and a chest infection, I want you all remember how amazing these last 2 years have been for me, how I have achieved to me things I never thought possible e.g cycling 180 miles, raising lots of money for charity, meeting new people, going on my honey moon, sharing a 1st & a 2nd wedding anniversary with my husband, reaching 23, working at next. Some of these things are so simple, so normal, but to me they were like a dream elusive and unreal, until I went out and I did them. I did them because of my donor and I will carry on doing and achieving to me what were impossible dreams and something's that are even to big for me to dream.
So please think about giving someone the gift of life, think about it, talk about, do something about it. Sign up today.
https://www.organdonation.nhs.uk/how_to_become_a_donor/registration/consent.asp
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So where am I going with this, well it's national transplant week, this week also marks my transplant anniversary. 2 years ago, I was dying, kept alive on the most invasive horrendous machines, my call came in what was the last hour of my life for sure. Thanks to the generosity, kindness and courage of a family I do not know and person I will never meet. This week I will mourn my donor, I will celebrate them, I will be thankful for every little precious moment they have allowed me and I will pray for there family because I know they lost there loved one this week 2 years ago. I do this every day but this week I'm not going to shut up about how grateful and lucky I am and how I believe giving the gift of life is the best gift you can give.
So although for me this time is hard at the moment with chronic rejection, my lung collapse and a chest infection, I want you all remember how amazing these last 2 years have been for me, how I have achieved to me things I never thought possible e.g cycling 180 miles, raising lots of money for charity, meeting new people, going on my honey moon, sharing a 1st & a 2nd wedding anniversary with my husband, reaching 23, working at next. Some of these things are so simple, so normal, but to me they were like a dream elusive and unreal, until I went out and I did them. I did them because of my donor and I will carry on doing and achieving to me what were impossible dreams and something's that are even to big for me to dream.
So please think about giving someone the gift of life, think about it, talk about, do something about it. Sign up today.
https://www.organdonation.nhs.uk/how_to_become_a_donor/registration/consent.asp
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Friday, 5 July 2013
Lung collapsed, chronic rejection, radiation therapy
I haven't done a blog recently as a lot has been going on, so much that I wanted to wait until I had some answers. I still haven't got all the answers, well definite ones. So here it is.
Ever since my fundoplication, my lung function continued to drop and I felt more and more breathless, have more time off work and generally struggling.
I decided to get a check up at harefield and st Mary's as I was having problems with eating to.
My st Mary went ok.
Unfortunately, harefield didn't. Very out of breath in clinic and a lung function then of only 36% I was in for a bronch next day.
The bronch didn't go well, I woke up In incredible amounts of pain on high litres of oxygen and gasping for breath.
It wasn't until later that afternoon when I was sent for X-ray did we find out why, the nurse came in and announced the surgeon was here to fit a chest drain, I said what? And that was how I was told they had collapsed my lung. This is a small possibility during bronchoscopy when they take a biopsy and due to my continuing decline they decided it was appropriate to take a large biopsy.
The surgeon came in and described he would fit a drain and that should instantly make me feel better.
It was one of the most horrific sounding things iv ever had done, there was no pain, the surgeon made sure of that. But the sounds we horrific, the pushing pulling and general discomfort and feelings of suffocation were horrible. But I didn't cry once, I stared my dad in the face as he held my hand and stayed strong. I didn't want to upset him.
Since then my drain has been removed as my lung had come up, unfortunately not all the way and the bronch didn't come up with any conclusive results. Also the collapse gave me a nasty chest infection making me much worse.
So at the moment, I'm stuck on oxygen, very breathless when I walk and struggling to do stairs and exercise but preserving as its will help my lung come up.
So we get back to what's wrong with my lungs in the first place, well, it looks like I have chronic rejection although its not full confirmed, but I am starting radiation therapy and hopefully this will get me back to pre fundoplication lung function of about 45-50% if not it will stabilises me and we will have to look at my options from there. I'm also in talks with the surgeons about have my lung surgically restuck, but hopeful it will come up on its own.
So things have been really tough and how I feel about it all? Well I'm obviously very upset, I'm upset things have got this bad so quickly and I'm back to a very scary place of limbo, not knowing what the future will be. Can I say that you ever truly leave that place, where you think maybe you can see a future, that you can stop worrying that death is waiting around every corner, I think I was there. Either way, I'm loving, living and still breathing and that's what's important and I thank my donor every day for that gift.
Also here's a link from the week before I came in, of me on daybreak for cf week promoting organ donation and raising awareness of cf. Im very proud of this as I was extremely breathless and still managed to reliever my message, which is transplant saves lives and is a huge gift that I am forever grateful for.
http://www.itv.com/daybreak/health/cystic-fibrosis-transplants/#.Ucisoe4cHLY.facebook
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Ever since my fundoplication, my lung function continued to drop and I felt more and more breathless, have more time off work and generally struggling.
I decided to get a check up at harefield and st Mary's as I was having problems with eating to.
My st Mary went ok.
Unfortunately, harefield didn't. Very out of breath in clinic and a lung function then of only 36% I was in for a bronch next day.
The bronch didn't go well, I woke up In incredible amounts of pain on high litres of oxygen and gasping for breath.
It wasn't until later that afternoon when I was sent for X-ray did we find out why, the nurse came in and announced the surgeon was here to fit a chest drain, I said what? And that was how I was told they had collapsed my lung. This is a small possibility during bronchoscopy when they take a biopsy and due to my continuing decline they decided it was appropriate to take a large biopsy.
The surgeon came in and described he would fit a drain and that should instantly make me feel better.
It was one of the most horrific sounding things iv ever had done, there was no pain, the surgeon made sure of that. But the sounds we horrific, the pushing pulling and general discomfort and feelings of suffocation were horrible. But I didn't cry once, I stared my dad in the face as he held my hand and stayed strong. I didn't want to upset him.
Since then my drain has been removed as my lung had come up, unfortunately not all the way and the bronch didn't come up with any conclusive results. Also the collapse gave me a nasty chest infection making me much worse.
So at the moment, I'm stuck on oxygen, very breathless when I walk and struggling to do stairs and exercise but preserving as its will help my lung come up.
So we get back to what's wrong with my lungs in the first place, well, it looks like I have chronic rejection although its not full confirmed, but I am starting radiation therapy and hopefully this will get me back to pre fundoplication lung function of about 45-50% if not it will stabilises me and we will have to look at my options from there. I'm also in talks with the surgeons about have my lung surgically restuck, but hopeful it will come up on its own.
So things have been really tough and how I feel about it all? Well I'm obviously very upset, I'm upset things have got this bad so quickly and I'm back to a very scary place of limbo, not knowing what the future will be. Can I say that you ever truly leave that place, where you think maybe you can see a future, that you can stop worrying that death is waiting around every corner, I think I was there. Either way, I'm loving, living and still breathing and that's what's important and I thank my donor every day for that gift.
Also here's a link from the week before I came in, of me on daybreak for cf week promoting organ donation and raising awareness of cf. Im very proud of this as I was extremely breathless and still managed to reliever my message, which is transplant saves lives and is a huge gift that I am forever grateful for.
http://www.itv.com/daybreak/health/cystic-fibrosis-transplants/#.Ucisoe4cHLY.facebook
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Friday, 24 May 2013
Kate Hennessy - it's time we talked
When I met Kate Hennessy in September after my bike ride, I knew we shared a bond, knew things no one else knew. Not only did we both have cf, but we had both been on ecmo and received life saving transplants. At that point no one knew the rough path Kate still had ahead of her and I never knew she would become such a good friend. Kate's path post transplant was very traumatic, infections, surgery and countless days in hospital.
She finally started to get her life back, her smile came back and we all thought that her rough start was coming to an end. Then an infection struck her down within 24 hours she was back on 10 litres of 02 unable to tolerate a bipap and talking invasive ventilation.
I can't tell you how scared I was Tuesday morning as Kate's mum told me she wasn't likely to make the day, that she was being made comfortable and my friend who had already been through so much was going through it all again. I cried and cried that morning, knowing by the time I finished my shift, Kate would probably already be gone. I felt so helpless and scared.
Only Kate didn't die, she once again fought the odds and battled through. On Thursday I went up to clinic and walking into Kate's room, she was already off oxygen! I held her tight and cried so grateful to have her still here and recovering.
Kate's had a hard time post transplant, but I thank her donor everyday, their the reason she is still here, the reason I got to meet someone so amazing and so special. Not only did I meet Kate but her mum to and they are two of the most amazing people!
So I would like you to watch this video on Kate spreading awareness of organ donation and how important it is.
Kate Hennessy - it's time we talked
Please share this video and get people talking about organ donation.
Here is a link to there event Hen fest 2013 please feel free to donate.
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She finally started to get her life back, her smile came back and we all thought that her rough start was coming to an end. Then an infection struck her down within 24 hours she was back on 10 litres of 02 unable to tolerate a bipap and talking invasive ventilation.
I can't tell you how scared I was Tuesday morning as Kate's mum told me she wasn't likely to make the day, that she was being made comfortable and my friend who had already been through so much was going through it all again. I cried and cried that morning, knowing by the time I finished my shift, Kate would probably already be gone. I felt so helpless and scared.
Only Kate didn't die, she once again fought the odds and battled through. On Thursday I went up to clinic and walking into Kate's room, she was already off oxygen! I held her tight and cried so grateful to have her still here and recovering.
Kate's had a hard time post transplant, but I thank her donor everyday, their the reason she is still here, the reason I got to meet someone so amazing and so special. Not only did I meet Kate but her mum to and they are two of the most amazing people!
So I would like you to watch this video on Kate spreading awareness of organ donation and how important it is.
Kate Hennessy - it's time we talked
Please share this video and get people talking about organ donation.
Here is a link to there event Hen fest 2013 please feel free to donate.
- Posted using BlogPress from my iPad
Thursday, 31 January 2013
Keep the ball rolling
So recently I feel my life is coming together in lots of different ways. I'm busy and I love being busy. Working at next, attending the gym with a new hard regime, training on pole, starting hoop regularly and teaching pole is really picking up nicely. The best thing tho is, yes, presenting might actually be getting some where, I'm doing a few pieces for BBC radio Devon on pause for thought in march and also I got asked to be interviewed for itv West Country as part of there 'from the heart' campaign for more donors, but a new twist has developed I'm presenting my own piece! Which will be used in my show reel! How awesome is that! I'm applying for workshops and experience with channel 4s 4talent to! I just love it when a plan comes together!
It's nice to feel the momentum of life picking me up and rolling with it. I just hope that health complications don't stop this ball from rolling. There's only so many times I can push it all to come back together. But hell ill keep trying every time because I know my healthy patch won't last forever and unfortunately I have been struggling the last few days with a lower than normal lung function, tackicardia and palpitations. I'm due up to Harefield Monday where I plan that my orals will have worked, I won't be kept in and will feel miraculously better! Come on my beautiful lungers we can do it. It turns out were a pretty awesome team after everything we've already faced in our short little relationship.
So wish me luck guys and hope I can keep this ball rolling
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It's nice to feel the momentum of life picking me up and rolling with it. I just hope that health complications don't stop this ball from rolling. There's only so many times I can push it all to come back together. But hell ill keep trying every time because I know my healthy patch won't last forever and unfortunately I have been struggling the last few days with a lower than normal lung function, tackicardia and palpitations. I'm due up to Harefield Monday where I plan that my orals will have worked, I won't be kept in and will feel miraculously better! Come on my beautiful lungers we can do it. It turns out were a pretty awesome team after everything we've already faced in our short little relationship.
So wish me luck guys and hope I can keep this ball rolling
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Saturday, 29 December 2012
Oh what a lovely Christmas and here's to a happy hopeful new year
My Christmas, well what can I say. I started work at next over Christmas and it has been great, hard, crazed but great. I loved the buzz of being busy and not having time to over think silly things. I worked hard and it was repaid with A perm position of up to 20hr a week. I feel less stressed about people not turning up to pole lessons already and I'm enjoying teaching.
My Christmas Day, well it was everything that to me Christmas is meant to be, that life is meant to be about. Family. I spent the day with my nan, grandad, stu, mum and her partner ash. I had a roaring laugh, helped mum out with the dinner, played games and felt the joy of giving them all presents which I had thought long an chard about. The joy of there faces lightning up. That to me is the best, but I was of course royally spoilt and I am very grateful, but my Christmas would have just been as good just for being with my family.
I can't tell you when the last time I really had such a nice Christmas, it really just felt special.
Which brings me on to a special family and a special person who will always have a place in my heart, soul and mind. My donor and there family. I hope my donor had a splendid Christmas wherever they are up above, shining on us all. I also hope my donors family were able to have a great Christmas, knowing there loved one isn't far. I once again cannot say how grateful I am my donor signed the register and there family also choose this decision with out them I would not have seen this or the last Christmas and all I can do is wish them love peace and happiness with every fibre of my being.
I now look toward the future, a future of opportunity, fun and not wasting one second. I have so many plans for my life and I am now going to take hold and live them. I hope to start my career in presenting in 2013, to have a proper holiday, in fact to have a few, to not forget or neglect my beautiful family and my gorgeous husband for where ever 2013 year takes me and I hope that that is far, I will be taking them with me.
I wish you all a happy new year, I wish that all your wishes and dreams come true and I wish 2013 will be the year my friend Kerry thorpe gets her call because she will not last much longer without it. Xx
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My Christmas Day, well it was everything that to me Christmas is meant to be, that life is meant to be about. Family. I spent the day with my nan, grandad, stu, mum and her partner ash. I had a roaring laugh, helped mum out with the dinner, played games and felt the joy of giving them all presents which I had thought long an chard about. The joy of there faces lightning up. That to me is the best, but I was of course royally spoilt and I am very grateful, but my Christmas would have just been as good just for being with my family.
I can't tell you when the last time I really had such a nice Christmas, it really just felt special.
Which brings me on to a special family and a special person who will always have a place in my heart, soul and mind. My donor and there family. I hope my donor had a splendid Christmas wherever they are up above, shining on us all. I also hope my donors family were able to have a great Christmas, knowing there loved one isn't far. I once again cannot say how grateful I am my donor signed the register and there family also choose this decision with out them I would not have seen this or the last Christmas and all I can do is wish them love peace and happiness with every fibre of my being.
I now look toward the future, a future of opportunity, fun and not wasting one second. I have so many plans for my life and I am now going to take hold and live them. I hope to start my career in presenting in 2013, to have a proper holiday, in fact to have a few, to not forget or neglect my beautiful family and my gorgeous husband for where ever 2013 year takes me and I hope that that is far, I will be taking them with me.
I wish you all a happy new year, I wish that all your wishes and dreams come true and I wish 2013 will be the year my friend Kerry thorpe gets her call because she will not last much longer without it. Xx
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Wednesday, 19 December 2012
Harefield, fundo operation, Neil and thought for Kerry
I have been rather quiet everywhere, on Facebook, twitter and even here. I have needed some breathing space time to just be me. I have to say I think it's worked, I feel so much better inside myself. I have thought about my life inside and out. I started to think about what I actually wanted and what was stopping me, in conclusion I decided I didn't want to live this life where I'm struggling for money, bored out my brains. I came up with a ultimate career goal and smaller ones that will help me get there. I decided I love teaching pole and love pole but as a main career it's to stressful, people cancelling on you all the time, never knowing what your income is from one week to another, it was zapping all the fun out of it.
Thinking about what sort of lifestyle I want, what makes me happy and what I enjoy, I decided I would like to be a presenter, I think my background in media has prepared me for the highs and lows. I have contacts in this industry and thinking about all the different aspects of presenting there's not many areas I don't like. I mostly love public interest stories and journalism side. So to get to my main career goal I have lots of little goals, first being, get a part time job on top of pole to supplement my low wage, well done that, I start of Friday with a temporary contract with next in women's wear, which I'm looking forward to. Next goal, a portfolio and show real, both of these I'm organising. Then there's also contacting all my contacts which iv done and had some feed back from. I know this is going to happen over night but I know I can do it.
So other things I've been up to, Iv been up to London for Harefield check up where everything's all well, I was prescribed a drug for nerve pain that's been agony, but good to say that's all sorted. I also had a appointment at st Mary's for a operation I need, I have had bad reflux for years, before transplant and now after, so they have decided to do a fundoplication, basically wrapping the opening of my stomach with flesh from the stomach, by pulling it up and around.
This is a very common operation post transplant. It's done through key whole and is a minor op. unfortunately mine may not be so minor, it turns out that due to various stomach ops I have had micolium isleus and appendix, I may have a lot of scar tissue, they think this because of all the blockages I get that the scar tissue may be one of the reasons. If they can't do it through key whole they will make a scar from the bottom of my sternum to my belly button. A substantial scar. I was devastated to be honest, I take pride in my body and my looks, I don't think there's anything wrong with that, I have near 40 scars now, I get over them each time a new one appears but for some reason the idea of this one really upsets me. I hope that it doesn't come to this. It's strange though my transplant scar never bothered me.
While I was up there I took the time to catch up with friends and saw Neil who's doing amazingly and on the last day I said goodbye had the best smile on his face. Transplant is no easy journey but when you get to where your going its amazing.
This is a picture of the scrap book I made Neil, it's one of the hardest and best presents iv ever done for anyone, following his journey from his call to when he gets home, leaving him space to put other stuff in. There's spaces for firsts, first Christmas, golf game post transplant.
All my Christmas decs are up and I've been baking. Feeling festive.
I'de also like to leave you with one last thought, while your wishing
for those pair of jeans for Christmas, or new straighteners. My friend Kerry thorpe is wishing to make it to Christmas, she is wishing for her call to come. Without that call we don't know how long Kerry will survive, so when your making your lists for Santa please make sure you fill out the organ donor form and get all your family to, when your making your Christmas wishes, make one for Kerry. She is now suffering regular respiratory arrests, I went through many of these and I cannot express how scary they are because you are literally staring death in the face.
Stay strong Kerry we are all thinking about you xxx
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Wednesday, 9 May 2012
A reply
I went to clinic on Thursday. It was a great clinic I got to meet Sarah who's from Cornwall, so my neck of the woods and It was great just chatting about things with someone who's been through the same sort of thing. I have to say, I find I have such a connection with other transplant patient especially Lungs and heart. Something about your chest being cut open really brings you together. Which is why I eventually want to set up a Lung transplant Support group for the southwest. Its something I have though about and if theres one already out there, then well there not doing very well as I don't feel very supported. I know It could be a great deal of work as I want anyone in the southwest to know that the group exists and have regular get together, once a month. Iv decided It's my next project after Sept 9th the date I finish my bike ride, that is if I can hold off till then. I've got great ideas to make sure south west patients know we exists and I think It could be a really great thing. My Lung function was the highest yet.
Anyway, as I was in clinic waiting. Rob the transplant coordinator came up to me and asked to speak in private. I knew what it was about, My letter. He said there was a reply and that it was quite detailed and that my donors family also know who I am. I knew I would accept this letter and said yes. He went to go get it. I went back and sat with my mum and burst in to tears. I had been waiting and wondering and now the time was here, suddenly I felt great fear, would they like me? Have I done enough for them to be happy about there donation? What if they were disappointed or upset by anything I had done? Rob arrived back with he letter and saw I was very upset and asked again, 'are you sure?' I was, I knew I would be upset but I had to read, I had to know.
It was one of the loveliest letters I have read, So many beautiful memory's of my donor, things I could only wish to know. I feel so lucky to have been given this information, I already owe my donors family so much, but this was just that one step further. I can never say thank you enough to them. The letter was left open for me to write back. I'm sure I will, when I have had time to absorb the many facts.
Its leads me to a film I was watching earlier, based on a real story, I can't remember the title I was to absorbed in the story. I switched it on and little did I know It would lead to organ donation. A teenager had died in a car accident and the family were approached about organ donation. I burst into tears, thinking of what my donors family went through and the hurt they must of been feeling. The deep pain I felt watching this, just made me feel so grateful and thankful to them.
So I will leave my post there today.
Thank you for reading.
Anyway, as I was in clinic waiting. Rob the transplant coordinator came up to me and asked to speak in private. I knew what it was about, My letter. He said there was a reply and that it was quite detailed and that my donors family also know who I am. I knew I would accept this letter and said yes. He went to go get it. I went back and sat with my mum and burst in to tears. I had been waiting and wondering and now the time was here, suddenly I felt great fear, would they like me? Have I done enough for them to be happy about there donation? What if they were disappointed or upset by anything I had done? Rob arrived back with he letter and saw I was very upset and asked again, 'are you sure?' I was, I knew I would be upset but I had to read, I had to know.
It was one of the loveliest letters I have read, So many beautiful memory's of my donor, things I could only wish to know. I feel so lucky to have been given this information, I already owe my donors family so much, but this was just that one step further. I can never say thank you enough to them. The letter was left open for me to write back. I'm sure I will, when I have had time to absorb the many facts.
Its leads me to a film I was watching earlier, based on a real story, I can't remember the title I was to absorbed in the story. I switched it on and little did I know It would lead to organ donation. A teenager had died in a car accident and the family were approached about organ donation. I burst into tears, thinking of what my donors family went through and the hurt they must of been feeling. The deep pain I felt watching this, just made me feel so grateful and thankful to them.
So I will leave my post there today.
Thank you for reading.
Sunday, 27 February 2011
Even the sickest of us can donate, think about it.
So something I wanted to post about today was organ donation, despite obvious reason that i am hoping to receive a lung transplant if i am to get on the transplant list. I also wanted to post about it from another aspect. Me and my nurse were chatting away the other day and she asked me if i thought about donating, I said obviously I wouldn't be a very good advocate for organ donation if i wasn't willing to give. We discussed that with the way i was likely to die with CF, I would be a non beating donor and therefore would not be able to donate my heart, but possibly the valves, I would be able to donate my kidneys and many other things. Even the sickest of us have things we can donate. Despite this sounding like a morbid conversation, it wasn't. Death is a very likely prospect for me and if transplant can't save me then perhaps i can save someone else through it. That would make me very happy indeed.
So those of you who thing you can't donate, its a myth, there are very few reasons people can't donate. Those who have organ related disease there are still other organs that are transplant able. Those who smoke, you can even transplant a smokers lungs, vigorous tests are done on all organs, they won't transplant organs if there deemed not suitable. But this shouldn't hold you back from signing the organ donor register.
Those of you who have other reasons holding you back from signing the donor register, they won't try to save me if I'm an organ donor? Yes they will, no body's life is more valuable then anyone Else's. Every one is equal in a doctors eyes and they will try there hardest to save you, but in the tragic event of your death, you might be able to save someone, you might be able to give the greatest gift of all, the gift of life. There are many other myths of organ donation. please check out www.lltgl.org.uk to dispel them and if you wish to sign the organ donor register please go on to here. It takes 2 minutes.
Please just think about it. The gift of life is the greatest gift of all.
So those of you who thing you can't donate, its a myth, there are very few reasons people can't donate. Those who have organ related disease there are still other organs that are transplant able. Those who smoke, you can even transplant a smokers lungs, vigorous tests are done on all organs, they won't transplant organs if there deemed not suitable. But this shouldn't hold you back from signing the organ donor register.
Those of you who have other reasons holding you back from signing the donor register, they won't try to save me if I'm an organ donor? Yes they will, no body's life is more valuable then anyone Else's. Every one is equal in a doctors eyes and they will try there hardest to save you, but in the tragic event of your death, you might be able to save someone, you might be able to give the greatest gift of all, the gift of life. There are many other myths of organ donation. please check out www.lltgl.org.uk to dispel them and if you wish to sign the organ donor register please go on to here. It takes 2 minutes.
Please just think about it. The gift of life is the greatest gift of all.
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