Quick blog to let you know how dreaded clinic went. In actual fact, (I think I have all your positive thoughts to blame) clinic went pretty well. My weight was still 44.2kg the same as when I did it in the week, but was up on my last clinic visit. My lung function had actually improved a tiny bit, not enough to matter an awful lot but I am still very grateful to have improved slightly. Everyone seemed pleased with me, I saw a registrar and they were really impressed that Im this far down the line and doing well. Next appointment in 4 months! (YAY!!!!)
The slightly downside was a conversation with my gastric dr, he was lovely as always but had nothing new to help with my problems and had some thoughts about feeding immediately post transplant. Also the fact that the clinic was packed and everyone had hacking coughs wasn't good. Obviously no one can help it, but it does mae you feel very vulnerable when you are relatively well and at risk of picking something up.
All in all a better day than I could have hoped :)
It took us 3 hours to get home which was a bit rubbish after a long day. We sailed through London but got stuck in traffic nearer to home and it was total gridlock. Still we got there in the end!
Thanks to everyone who thought and prayed for me, Its very very uch appreciated! Especially Laura who left 2 comments wishing me well, hope your feeling better now and enjoyed Disney when you went? I tried to email you to say thank you but couldn't find an address or contact details.
Anyway thats my visit in a nutshell, I'm so pleased its over and that it went well. Hope you all have a good week, I'll update again soon xxxxxxxx
Tuesday, 27 January 2009
Tuesday, 20 January 2009
I dont want to go!
I'm at my CF clinic on Friday and I dont want to go! (Im assuming you guessed that already though).
I feel ok in myself etc but I always worry immensely when clinic beckons. I worry that I will pick up bugs from other patients, I worry something unexpected will show up, I get disappointed by the crappy test results (inevitable at transplant stage but still hard to take) and I get extremely worn out from the day and the journey.
Weekly weigh in shows more slow progress, now 44.2kg which I hope will continue to gain steadily. Please please please send all your positive thoughts, prayers and vibes in my direction on Friday, I really appreciate knowing that I have you all behind me and I definately need some support.
I feel ok in myself etc but I always worry immensely when clinic beckons. I worry that I will pick up bugs from other patients, I worry something unexpected will show up, I get disappointed by the crappy test results (inevitable at transplant stage but still hard to take) and I get extremely worn out from the day and the journey.
Weekly weigh in shows more slow progress, now 44.2kg which I hope will continue to gain steadily. Please please please send all your positive thoughts, prayers and vibes in my direction on Friday, I really appreciate knowing that I have you all behind me and I definately need some support.
In non-hospital news I have had the result of silly market economy essay and I got a B unbelievably! I was very suprised not least because I still dont understand any of the concepts, but am pleased all the same. (next time I may write my essay about a completely unrelated subject and see what mark i get...)
I have felt a bit down this week. There have been a few transplant patients that despite recieveing that all important gift have sadly had bad results. One has found out they have chronic rejection, and two have passed away from complications. I dont know these people well at all but my heart breaks for them and their families. I cannot imagine how devastating it must be to get that all important call, start making plans for the new life you so desperately wanted and to have it snatched away from you. When transplant goes well it is the most life altering, amazing, miracle, but it is easy to forget that it is a hugely risky and complex procedure that doesn't work for some. I have found these cases very hard to deal with this week but it comes down to one question, do I still want to take the risk as well as the benefits of transplant? Yes I do. What hope is there if I dont? I would rather go down fighting than wondering what might have been. To those who lost the fight this week, you are an inspiration to everyone and your courage and spirit live on.
On a happier note today brings the news that the number of organ donors in the UK have reached an all time high. This is excellent news and there are many promises from government to increase these further. All the campagins and media attention is working really well but we still need to get those numbers even higher. The supermarket chain Tesco have taken up the challenge to which is fantastic news as they have the ability to reach a huge number of people. They have a big spread in their free magazine, which includes my story about waiting. You can read mine and the other stories here
Just before I go, I hope you like the new look blog, I really do! Also congrats to my American readers on gaining such a great president, Obama seems really clued up and I felt a huge sense of pride and emotion when I watched him being signed in. A day for the history books.
Please remember to send out some prayers and thoughts if you can on Friday, I really do appreciate it. I'll try and update over the weekend to let you know how it all went. xxxx
Wednesday, 14 January 2009
market economy... Done!
Hello,
Just a quick post today. Not much to report but thought I would drop in and give you an update.
I finished my very difficult and throughly boring essay yesterday. Hopefully it will be ok but to be honest by the end i was just desperate to finish it rather than caring to much about the content! After two weeks of trying to understand the market economy, the price mechanism,externaliites and some weird guff about an invisible hand and elbow (seriously dont ask....) i had offically had enough! Its strange but although ive struggled with other courses this one is the hardest even though its actually a level down from my last course. I suppose its just a case of what clicks in your mind and what doesn't.
I did a weigh in this week and am now up to 44kg, slightly disappointed as i thought it would be more, but at least its up and I wont moan about that! My chest is feeling a bit rubbish today but im sure it will clear up in a few days.
I've had a worrying week with a good friend of mine (my piratey friend mentioned in previous posts) has been very very ill in hospital. He also has CF and had caught one of the nasties going round which caused his lung function to drop to a low level and fighting what seemed to be a losing battle. It has been very touch and go but in the last few days he seems to have turned a corner and is coming on really well. He is a strong, caring, inspirational guy and I am so glad that he is on the mend and am proud to call him my friend. Well done hun!
I had a good weekend which involved simple but nice things. It is getting very scary at the moment with the amount of bugs going around and the severity of them. Most of the seem to go straight to peoples chests and perfectly healthy people are taking weeks to recover, I cant imagine the effect on my poor little lungs while they are so week. Many hospitals have closed there doors recently because they have no more beds and pneumonia is at a high. That said I am trying to avoid going out as the risks seem too high. So I settled for a ride out in the car at the weekend, safe and getting out of the house for a while and on Sunday my sister S had us over for a post Christmas buffet. I got to play with my nephew who seemed to enjoy spending time with us, laughing and showing us all his toys! It was a really lovely evening. Just getting out for a few hours did me the world of good and lifted m spirits without extra worry.
Hoping you all have a great week and speak again soon xx
Just a quick post today. Not much to report but thought I would drop in and give you an update.
I finished my very difficult and throughly boring essay yesterday. Hopefully it will be ok but to be honest by the end i was just desperate to finish it rather than caring to much about the content! After two weeks of trying to understand the market economy, the price mechanism,externaliites and some weird guff about an invisible hand and elbow (seriously dont ask....) i had offically had enough! Its strange but although ive struggled with other courses this one is the hardest even though its actually a level down from my last course. I suppose its just a case of what clicks in your mind and what doesn't.
I did a weigh in this week and am now up to 44kg, slightly disappointed as i thought it would be more, but at least its up and I wont moan about that! My chest is feeling a bit rubbish today but im sure it will clear up in a few days.
I've had a worrying week with a good friend of mine (my piratey friend mentioned in previous posts) has been very very ill in hospital. He also has CF and had caught one of the nasties going round which caused his lung function to drop to a low level and fighting what seemed to be a losing battle. It has been very touch and go but in the last few days he seems to have turned a corner and is coming on really well. He is a strong, caring, inspirational guy and I am so glad that he is on the mend and am proud to call him my friend. Well done hun!
I had a good weekend which involved simple but nice things. It is getting very scary at the moment with the amount of bugs going around and the severity of them. Most of the seem to go straight to peoples chests and perfectly healthy people are taking weeks to recover, I cant imagine the effect on my poor little lungs while they are so week. Many hospitals have closed there doors recently because they have no more beds and pneumonia is at a high. That said I am trying to avoid going out as the risks seem too high. So I settled for a ride out in the car at the weekend, safe and getting out of the house for a while and on Sunday my sister S had us over for a post Christmas buffet. I got to play with my nephew who seemed to enjoy spending time with us, laughing and showing us all his toys! It was a really lovely evening. Just getting out for a few hours did me the world of good and lifted m spirits without extra worry.
Hoping you all have a great week and speak again soon xx
Wednesday, 7 January 2009
2009.....
Happy New Year everyone and welcome to the first post of 2009! I hope you have all had a fantatsic Christmas with those you love and that 2009 will be a very happy one for us all.
Our Christmas was quiet but good. My sister S, was still too ill on Christmas eve and we begrudgingly acknowledged that she wouldnt be able to come over for the big day. Instead my nan and her friend came to us instead (she was originally going to my aunts) so we had 2 guests on Christmas day.
My favourite part of Christmas day is when we first get up. I see my tree all twinkly and then go into my mum and dads room to open presents, its quiet and just us three, and I love it. I had a huge sack of presents (im a lucky girl) all wrapped up in pink paper and housed in a sparkly disney princess bag! Yes I am just a big kid! I had some lovely gifts and my mum and dad seemed to like their presents too.
The rest of the day was quiet but exhausting for me. I was only slightly more active than usual, hardly doing anything physical, but by the afternoon I was shattered, breathless and tired. It is a huge scary wake up call when i feel like this, because it forces me to realise what i already know but push to the back of my mind whenever possible, I am in serious need of those new lungs and my body is struggling. It of course stirred up some awful thoughts, and fears about what will happen next year if that call doesn't come. I had been expecting some feelings like this but it was still horrible to contemplate and I wanted to hide my feelings from everyone else. Even though we had a nice day we could all feel the unspoken "thing" hanging over us. We had all hoped that we would be off answering a special call instead of eating xmas dinner.
Boxing day was another quiet but exhausting day. My other sister, nephew and partner came over for lunch but by the evening of this second day i felt in a pretty bad way. I had tired even faster than the day before and ended up coming upstairs and sitting in bed for the rest of the evening. My chest and throat felt all tickly from the extra effort, I ached all over and I was very tired.
After a few restful days I picked up again and my sister recovered enough from her cold to be able to visit on New Years eve which was lovely. They left by about 9.00pm which meant I didnt get too tired. As a family we have never really celebrated new year, and this year we especially didnt feel like celebrating. For me although I am very pleased to be here and still kicking, 2009 is a very daunting prospect. As I filled in my calendar I saw all the things I'd enjoyed doing, simply memories now and as 12 months stretch in front of me I wonder when if ever that call will come and what the year will hold.
Last year I hoped that my transplant would come this year but it hasnt. One of the worst aspects of transplant is the utter helplessness I feel, as someone who is very pro active and takes comfort from knowing I'm doing all i can with an issue, the prospect of having no bearing on such an important situation is heart breaking. I want to ensure I get that call, but there is nothing I can do to change it either way. 2009 will have highs and lows, the same as any other year and I think the only way forward is to take each day as it comes. There is nothing more anyone can do. 2008, despite me being very restricted, offered some amazing opportunities and great high lights. I ve written quite a lot today so maybe next time I will elaborate on those highlights. For now, enjoy each day as much as possible!
Much love to you all xxxxxxxxxxx
PS. sorry if im not updating so much at the moment but I have a lot of work on. Something has to give time wise and unfortunately its my blog at the minute, just to give you a heads up in case you were worried! xxx
Our Christmas was quiet but good. My sister S, was still too ill on Christmas eve and we begrudgingly acknowledged that she wouldnt be able to come over for the big day. Instead my nan and her friend came to us instead (she was originally going to my aunts) so we had 2 guests on Christmas day.
My favourite part of Christmas day is when we first get up. I see my tree all twinkly and then go into my mum and dads room to open presents, its quiet and just us three, and I love it. I had a huge sack of presents (im a lucky girl) all wrapped up in pink paper and housed in a sparkly disney princess bag! Yes I am just a big kid! I had some lovely gifts and my mum and dad seemed to like their presents too.
The rest of the day was quiet but exhausting for me. I was only slightly more active than usual, hardly doing anything physical, but by the afternoon I was shattered, breathless and tired. It is a huge scary wake up call when i feel like this, because it forces me to realise what i already know but push to the back of my mind whenever possible, I am in serious need of those new lungs and my body is struggling. It of course stirred up some awful thoughts, and fears about what will happen next year if that call doesn't come. I had been expecting some feelings like this but it was still horrible to contemplate and I wanted to hide my feelings from everyone else. Even though we had a nice day we could all feel the unspoken "thing" hanging over us. We had all hoped that we would be off answering a special call instead of eating xmas dinner.
Boxing day was another quiet but exhausting day. My other sister, nephew and partner came over for lunch but by the evening of this second day i felt in a pretty bad way. I had tired even faster than the day before and ended up coming upstairs and sitting in bed for the rest of the evening. My chest and throat felt all tickly from the extra effort, I ached all over and I was very tired.
After a few restful days I picked up again and my sister recovered enough from her cold to be able to visit on New Years eve which was lovely. They left by about 9.00pm which meant I didnt get too tired. As a family we have never really celebrated new year, and this year we especially didnt feel like celebrating. For me although I am very pleased to be here and still kicking, 2009 is a very daunting prospect. As I filled in my calendar I saw all the things I'd enjoyed doing, simply memories now and as 12 months stretch in front of me I wonder when if ever that call will come and what the year will hold.
Last year I hoped that my transplant would come this year but it hasnt. One of the worst aspects of transplant is the utter helplessness I feel, as someone who is very pro active and takes comfort from knowing I'm doing all i can with an issue, the prospect of having no bearing on such an important situation is heart breaking. I want to ensure I get that call, but there is nothing I can do to change it either way. 2009 will have highs and lows, the same as any other year and I think the only way forward is to take each day as it comes. There is nothing more anyone can do. 2008, despite me being very restricted, offered some amazing opportunities and great high lights. I ve written quite a lot today so maybe next time I will elaborate on those highlights. For now, enjoy each day as much as possible!
Much love to you all xxxxxxxxxxx
PS. sorry if im not updating so much at the moment but I have a lot of work on. Something has to give time wise and unfortunately its my blog at the minute, just to give you a heads up in case you were worried! xxx
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