It's been a long time since I wrote on this blog..... I have had my transplant!! I received my new lungs on 23rd November 2011 after a very eventful and dramatic few months and left hospital on 10th January 2012. I'm now recovering at home and so far so good....
You can catch up on my story at:
http://kerrym82.wordpress.com/my-blog/
(This is the blog I keep more up to date!)
Love Kerry xx
Tuesday, January 24, 2012
Wednesday, July 13, 2011
Up to date blog
I keep forgetting about this blog but I hope anyone who is interested has found my other one. The link is:
http://kerrym82.wordpress.com/
Ideally I wanted to keep both going but as you can see this just hasn't happened!
Xxx
http://kerrym82.wordpress.com/
Ideally I wanted to keep both going but as you can see this just hasn't happened!
Xxx
Tuesday, January 25, 2011
Jan 2011 big catch up!
Big Catch Up!
It's been a very long time since I set this up and a lot has changed for me! I will give a quick synopsis to bring you up to date.
I actually have another site which will be my main blog for everyone I know to see which will be kept more up to date than this one- .http://kerrym82.wordpress.com/
Think this is the best way to make sure people don't get left out as it's really hard to keep in touch in hospital.
Unfortunately my hospital days seem to have begun. I didn't have a very good summer, I was consistently Ill with colds and chest issues but nothing major the doctors could really treat or do much about. Then at the end of November, it was time for my six month check up at Harefield. I had a nasty cold in the two weeks leading up to the appointment and was only just well enough to go. It was a very big thing doing the travelling over which I managed but that night in the hotel had a terrible night and when I got to my appointment the next day, I really wasn't feeling well. They agreed I wasn't well and admitted me which thankfully was a very wise decision! I stayed in Harefield hospital for a week then managed to get an air ambulance flight back to jersey (in the snow!) and stayed in jersey hospital for another 3 weeks getting better and putting some weight on as I had gone down to 35kg. The minimal weight safe to operate on is 40kg so I was taken off the transplant list until this was achieved. It was also decided I now needed oxygen therapy 24/7 which is a shame as I have always held my levels well. Lung function at this point is down to 12% which is pretty dire!
I managed to get home 2 days before christmas and had a Lovely quiet few days with Phil and Disney and the family. The wednesday after Xmas I went back to hospital for a check up, my chest was all clear and my weight was a whopping 38.5 kg. Dr luksza was going to call Harefield right away to say how well I was doing :-)
THEN, I started getting a little cough and by New Years Eve had missed a few nights sleep and was feeling really drained so I decided to call the hospital. I went to A&E via ambulance and to cut a long story story short ended up very poorly indeed in Intensive care by Sunday. I spent a week in ICU and have now been on a ward for just over 2 weeks I think (very easy to lose track of the days in here!) My weight plummeted after ICU but am slowly regaining.
They are still bafflled as to what I actually had, possibly the dreaded swine flu, we will never know, but it was viral and my body definitely didn't like it. It has been a real shock to all of us and a big wake up call as to how urgent this transplant is.
The trouble is now that every time I get close to a decent weight or going home, I pick up another bug. This week has seen a gastro virus and a chest bug again which hopefully they have caught quickly with the antibiotics. It's not been much fun to be honest.
Anyway the good news is I have amazing husband, family and friends who help me along all the time. Thank you so much for all your messages- please keep them coming, they always make me smile and I'm sorry I don't reply much. This update has taken days to type!!
Tue 25 th Jan
My weight yesterday was terrible, it is right back down to what I left ICU at after the gastro bug which is very frustrating! It takes me two weeks to put on 2kg but 3 days to lose it! Anyway now I have started eating again it should hopefully bounce back up fairly quickly.
The main news is I am back on the transplant list. Harefield have agreed not to wait for my weight to go up and have advised me that I have much more chance of getting my transplant sooner by being closer in the uk. So the plan is once I'm ready to leave hospital I will be going over to stay in the uk and hopefully the op will follow soon! There is a lot to arrange for the move so more info to follow on this when we know!
Think thats all for now! Xx
It's been a very long time since I set this up and a lot has changed for me! I will give a quick synopsis to bring you up to date.
I actually have another site which will be my main blog for everyone I know to see which will be kept more up to date than this one- .http://kerrym82.wordpress.com/
Think this is the best way to make sure people don't get left out as it's really hard to keep in touch in hospital.
Unfortunately my hospital days seem to have begun. I didn't have a very good summer, I was consistently Ill with colds and chest issues but nothing major the doctors could really treat or do much about. Then at the end of November, it was time for my six month check up at Harefield. I had a nasty cold in the two weeks leading up to the appointment and was only just well enough to go. It was a very big thing doing the travelling over which I managed but that night in the hotel had a terrible night and when I got to my appointment the next day, I really wasn't feeling well. They agreed I wasn't well and admitted me which thankfully was a very wise decision! I stayed in Harefield hospital for a week then managed to get an air ambulance flight back to jersey (in the snow!) and stayed in jersey hospital for another 3 weeks getting better and putting some weight on as I had gone down to 35kg. The minimal weight safe to operate on is 40kg so I was taken off the transplant list until this was achieved. It was also decided I now needed oxygen therapy 24/7 which is a shame as I have always held my levels well. Lung function at this point is down to 12% which is pretty dire!
I managed to get home 2 days before christmas and had a Lovely quiet few days with Phil and Disney and the family. The wednesday after Xmas I went back to hospital for a check up, my chest was all clear and my weight was a whopping 38.5 kg. Dr luksza was going to call Harefield right away to say how well I was doing :-)
THEN, I started getting a little cough and by New Years Eve had missed a few nights sleep and was feeling really drained so I decided to call the hospital. I went to A&E via ambulance and to cut a long story story short ended up very poorly indeed in Intensive care by Sunday. I spent a week in ICU and have now been on a ward for just over 2 weeks I think (very easy to lose track of the days in here!) My weight plummeted after ICU but am slowly regaining.
They are still bafflled as to what I actually had, possibly the dreaded swine flu, we will never know, but it was viral and my body definitely didn't like it. It has been a real shock to all of us and a big wake up call as to how urgent this transplant is.
The trouble is now that every time I get close to a decent weight or going home, I pick up another bug. This week has seen a gastro virus and a chest bug again which hopefully they have caught quickly with the antibiotics. It's not been much fun to be honest.
Anyway the good news is I have amazing husband, family and friends who help me along all the time. Thank you so much for all your messages- please keep them coming, they always make me smile and I'm sorry I don't reply much. This update has taken days to type!!
Tue 25 th Jan
My weight yesterday was terrible, it is right back down to what I left ICU at after the gastro bug which is very frustrating! It takes me two weeks to put on 2kg but 3 days to lose it! Anyway now I have started eating again it should hopefully bounce back up fairly quickly.
The main news is I am back on the transplant list. Harefield have agreed not to wait for my weight to go up and have advised me that I have much more chance of getting my transplant sooner by being closer in the uk. So the plan is once I'm ready to leave hospital I will be going over to stay in the uk and hopefully the op will follow soon! There is a lot to arrange for the move so more info to follow on this when we know!
Think thats all for now! Xx
Monday, August 30, 2010
It has been a shocking amount of time since I have blogged! Not had a great month or so unfortunately, caught a nasty cough and cold which hit me fairly hard and taken a long time to get back to anywhere near normal. I'm still extra tired and wheezy and not been up to using my computer hardly at all so feel like I have been very out of touch- thank goodness for facebook mobile!!
Not going to be a long post this time but hope everyone is doing well and I'll get back in touch soon!
Just to end on a nice note- it was my 28th birthday this week and I have been thoroughly spoilt by my lovely family, didn't do much but had a lovely day- and lots of cake! Fingers crossed I have just entered my transplant year :-) xx
Not going to be a long post this time but hope everyone is doing well and I'll get back in touch soon!
Just to end on a nice note- it was my 28th birthday this week and I have been thoroughly spoilt by my lovely family, didn't do much but had a lovely day- and lots of cake! Fingers crossed I have just entered my transplant year :-) xx
Saturday, July 17, 2010
Dreaming about the call...
I have been really struggling to sleep properly recently even though I am absolutely shattered every night and every time I do fall asleep I seem to be right in the middle of some action packed dream which makes no sense at all! No wonder I'm exhausted every morning when all night, I've been saving the world and everything else you can possibly think of! I wake up feeling like I have done all the things I've dreamt about!
Anyway, last night was particularly annoying- I had dream after dream that the phone was ringing with my call for my transplant. It's the first time I have dreamt about it- Im actually surprised at how calm I've been since I became active on the waiting list. I know it is highly unlikely I will be called so early on in my wait but I did think I would be more panicky about it all. However, last night everytime the phone rang in my dreams I woke up and wasn't quite sure if it had really happened and it was very unsettling!
I think it's my mind realising how much I just want to get on with it all- I'm terrified of what the operation and the first few months will be like but I know I have to go through that before I can even think about being normal again and doing everything I keep hoping for, and the sooner it starts- the sooner it's over! Some days I don't feel ready to face it at all but most of the time now I am sick of being ill and just want that phone to ring!
Think I had better get used to waiting though- so many people wait far too long for that right donor- why should I be any different? I think I would actually feel guilty if I queue jumped other people who have been so desperately waiting for a year or more but I guess it can't work like that and I don't think I can wait too long- my last lung function was down to 17%.
Anyway, last night was particularly annoying- I had dream after dream that the phone was ringing with my call for my transplant. It's the first time I have dreamt about it- Im actually surprised at how calm I've been since I became active on the waiting list. I know it is highly unlikely I will be called so early on in my wait but I did think I would be more panicky about it all. However, last night everytime the phone rang in my dreams I woke up and wasn't quite sure if it had really happened and it was very unsettling!
I think it's my mind realising how much I just want to get on with it all- I'm terrified of what the operation and the first few months will be like but I know I have to go through that before I can even think about being normal again and doing everything I keep hoping for, and the sooner it starts- the sooner it's over! Some days I don't feel ready to face it at all but most of the time now I am sick of being ill and just want that phone to ring!
Think I had better get used to waiting though- so many people wait far too long for that right donor- why should I be any different? I think I would actually feel guilty if I queue jumped other people who have been so desperately waiting for a year or more but I guess it can't work like that and I don't think I can wait too long- my last lung function was down to 17%.
Saturday, July 10, 2010
Other Blog!
I really liked the idea of having 2 blogs as some of you have done, one for people who know you and one for people who don't! I don't feel I want all my family and friends around me to read all the ramblings of my brain so I have set up another blog that will follow any transplant news if and when it happens. All updates will be on there and this one won't be updated until I'm back with it!
If anyone is interested- the other blog site is http://kerrym82.wordpress.com/
This all seems a bit over-organised but I suppose it's best that way- I won't be able to update anyone once I'm called!! xx
If anyone is interested- the other blog site is http://kerrym82.wordpress.com/
This all seems a bit over-organised but I suppose it's best that way- I won't be able to update anyone once I'm called!! xx
Monday, July 5, 2010
More About Me!
I started my blog originally for the sole purpose of meeting people and sharing experiences about lung problems and tranplants etc and I have now done 2 posts on the subject and realise my blog is already sounding rather moany and depressing! So, in an attempt to change that I thought it would be nice if I told you a bit about myself- not just my life as an ill person! :-) So, here goes :-
I live in Jersey which is a lovely place, a little small and annoying and expensive to travel to the mainland but it makes up for that in it's beauty and friendliness. It is a great place to live, you are never far from the beach and it's slightly warmer than the UK usually! I have a lot of great friends over here and feel very lucky to have been brought up here.
I live in a small house on the outskirts of the main town here, which I own with my husband Phil and we have a 2 year old cavalier king charles spaniel called Disney (or Dizzy or Dis!) She is a complete spoilt little baby and although she is supposed to be my puppy- she only has eyes for her 'Daddy'! Disney is such a happy, friendly little doggie, just wants to be loved and cuddled constantly and is great company for me at home. One of my main goals in life is to be able to take her on lovely walks everyday! (Picture above of the cheeky little thing on my bed!)
Phil and I got married earlier this year, having been engaged for a year (before I got properly ill). Phil is great and very supportive.
I used to work in Finance, the main industry over here but gave that up last summer. I enjoyed my job but mainly because of the friends I had there. I am looking forward to doing something else when I go back to work- haven't decided what type of thing yet tho. I would love a wedding dress shop!!
I have a great family, 2 brothers and sister who are all younger than me and apart from 1 brother, they all live in Jersey too. My parents also live here and my Mum is with me most of the time at the moment at home.
I LOVE the following (in no particular order):
laughing, talking, holidays in the sun, happy people, manners, shopping, fancy dress parties, pink, purple and girly things, clothes, shoes & jewellery, friends & family, socialising, pyjamas and duvet days, sleeping, music, reading, films, big brother, cheese, capri sun drinks, thai takeaways and McDonalds cheeseburgers!!
I'm sure there is lots more I should be putting on that list but my mind has gone blank!
Think that's about all for now, hope that's not all too boring! xx
Wednesday, June 30, 2010
A learning curve
Firstly, thank you to those who have made contact with me, I can see that you are a close network of friends really helping and supporting each other from your blogs and I really feel like I want to be part of it! I've really enjoyed hearing from some of you and hope the list will keep growing! Unfortunately I can only do so much on the computer in the day and it's not enough for me at the moment to start my blog, read up on others and message people- I'm sure I'll get quicker tho!
So many of you have CF, rather than a condition similar to mine. It's been quite a shock for me to realise that I seem to not be doing as much as most of you are / were before your transplants. I don't live with the same problems and endless medication you do and I don't have the strict physio routines etc but I do seem much more less mobile. I don't cough, and I don't even need oxygen hardly ever, my heart is strong which keeps up my SATS but I just can't breathe the minute I move. I can't really leave the house at the moment- just getting in and out the car is mission impossible, I can't eat, bath or talk easily, I can just about walk between rooms after a nebulise or inhaler!
What I'm wondering is how much of this is in my head and I'm stopping myself because I'm scared of being breathless or is it really physically impossible? I discussed this with Phil who has pointed out that different lung conditions are very different to live with but I'm concerned I'm not perhaps pushing myself enough. Or is it dangerous to push that barrier?? The doctors don't say much about it cos I don't think they know.
The other trouble is my body is working so hard to breathe and I'm constantly fighting to keep my weight but I get so exhausted by the end of the day that then I cope less well with the breathlessness.
The other main thing that makes me feel like I could do better is I won't be left at home on my own- even for 10 minutes- has anyone been like this? You all seem very self-sufficient and confident- how do you do it?? Luckily I have really supportive family and friends who have not left me on my own at all but I would really like to address this.
When I first became properly ill last year I started having bad panic attacks when I felt scared and these were making things alot more difficult. I have worked really hard to put on a few vital kgs since then which has made me feel less weak and I was coping a lot better. However, the last month or so (really since my transplant assessment) I have become a lot more scared again. I haven't had any panic attacks but I feel quite close to them sometimes. I have spoken to the transplant co-ordinator about this and they seem to think the best thing I can do is talk to people who have been through this and it will probably get easier!
I find it so frustrating cos I have always been a strong, determined person but I just can't seem to rise above the fear this time.
I'm sure it's all just anticipation of what is to come- I'm more scared of how long it will take (if I'm lucky enough to ever) get the call and I find it hard that when I look at my diary and people discuss arrangements- I'm constantly thinking- will i be here then or in hospital or even worse still be waiting?! Will I feel better or worse? No one can answer these questions but does that get easier with time?
My final fear for this post is about flying. Since my decline last year I become extremely claustrophobic and always have been quite scared of flying- how am I going to get through the flight to Harefield when the call comes? I have already been warned it's not a nice air ambulance plane to be in and will take over an hour plus I'm sure I will be panicking! Finally I have to choose between Mum and my husband to come over with me- the other will have to wait for a normal flight to the UK- I couldn't possibly choose!!
Anyway, these are my concerns about my current condition! Next time- I will detail some questions about tranplants that I have- you lucky people!! It really feels good to get some of this out and if anyone has any suggestions or ways they cope- I would be very interested! xx
So many of you have CF, rather than a condition similar to mine. It's been quite a shock for me to realise that I seem to not be doing as much as most of you are / were before your transplants. I don't live with the same problems and endless medication you do and I don't have the strict physio routines etc but I do seem much more less mobile. I don't cough, and I don't even need oxygen hardly ever, my heart is strong which keeps up my SATS but I just can't breathe the minute I move. I can't really leave the house at the moment- just getting in and out the car is mission impossible, I can't eat, bath or talk easily, I can just about walk between rooms after a nebulise or inhaler!
What I'm wondering is how much of this is in my head and I'm stopping myself because I'm scared of being breathless or is it really physically impossible? I discussed this with Phil who has pointed out that different lung conditions are very different to live with but I'm concerned I'm not perhaps pushing myself enough. Or is it dangerous to push that barrier?? The doctors don't say much about it cos I don't think they know.
The other trouble is my body is working so hard to breathe and I'm constantly fighting to keep my weight but I get so exhausted by the end of the day that then I cope less well with the breathlessness.
The other main thing that makes me feel like I could do better is I won't be left at home on my own- even for 10 minutes- has anyone been like this? You all seem very self-sufficient and confident- how do you do it?? Luckily I have really supportive family and friends who have not left me on my own at all but I would really like to address this.
When I first became properly ill last year I started having bad panic attacks when I felt scared and these were making things alot more difficult. I have worked really hard to put on a few vital kgs since then which has made me feel less weak and I was coping a lot better. However, the last month or so (really since my transplant assessment) I have become a lot more scared again. I haven't had any panic attacks but I feel quite close to them sometimes. I have spoken to the transplant co-ordinator about this and they seem to think the best thing I can do is talk to people who have been through this and it will probably get easier!
I find it so frustrating cos I have always been a strong, determined person but I just can't seem to rise above the fear this time.
I'm sure it's all just anticipation of what is to come- I'm more scared of how long it will take (if I'm lucky enough to ever) get the call and I find it hard that when I look at my diary and people discuss arrangements- I'm constantly thinking- will i be here then or in hospital or even worse still be waiting?! Will I feel better or worse? No one can answer these questions but does that get easier with time?
My final fear for this post is about flying. Since my decline last year I become extremely claustrophobic and always have been quite scared of flying- how am I going to get through the flight to Harefield when the call comes? I have already been warned it's not a nice air ambulance plane to be in and will take over an hour plus I'm sure I will be panicking! Finally I have to choose between Mum and my husband to come over with me- the other will have to wait for a normal flight to the UK- I couldn't possibly choose!!
Anyway, these are my concerns about my current condition! Next time- I will detail some questions about tranplants that I have- you lucky people!! It really feels good to get some of this out and if anyone has any suggestions or ways they cope- I would be very interested! xx
Saturday, June 26, 2010
Getting Started!
Hi there,
I'm not very good at this internet stuff- shopping and facebook are my usual limits, so sorry if this takes a while to get going!
So, I've been accepted onto the lung transplant waiting list and not sure what to do now really! I know all the information that the hospital give you, what I don't know is what it's like to be a young person waiting for and going through a transplant! There are so many questions and things that I don't feel anyone else really understands. I live in a small island where only a few people have had transplants and really want to make some friends in similar positions to me.
Although I've always struggled with asthma and breathlessness, I lived a normal life until a year ago, when suddenly my lung function dropped dramatically as did my weight and I've spent a year unable to walk and even bath without some assistance. I also started having panic attacks which don't mix too well with a lung condition! Not much fun and a big shock. I fought needing the transplant for quite a while and have now realised that I am lucky to get the chance to get back to a normal life. I am very glad that I haven't spent years in this condition and very much hope I won't spend too much longer, although I have a huge task ahead of me!
I started to look on the internet for people like me and have found huge comfort in reading about their lives and journeys to and through transplant. Their honesty has been so comforting to me and I hope that one day my blog will provide inspiration to others, the way these have for me.
So, would love to hear from people
Kerry xx
I'm not very good at this internet stuff- shopping and facebook are my usual limits, so sorry if this takes a while to get going!
So, I've been accepted onto the lung transplant waiting list and not sure what to do now really! I know all the information that the hospital give you, what I don't know is what it's like to be a young person waiting for and going through a transplant! There are so many questions and things that I don't feel anyone else really understands. I live in a small island where only a few people have had transplants and really want to make some friends in similar positions to me.
Although I've always struggled with asthma and breathlessness, I lived a normal life until a year ago, when suddenly my lung function dropped dramatically as did my weight and I've spent a year unable to walk and even bath without some assistance. I also started having panic attacks which don't mix too well with a lung condition! Not much fun and a big shock. I fought needing the transplant for quite a while and have now realised that I am lucky to get the chance to get back to a normal life. I am very glad that I haven't spent years in this condition and very much hope I won't spend too much longer, although I have a huge task ahead of me!
I started to look on the internet for people like me and have found huge comfort in reading about their lives and journeys to and through transplant. Their honesty has been so comforting to me and I hope that one day my blog will provide inspiration to others, the way these have for me.
So, would love to hear from people
Kerry xx
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