I don't really know how to write this blog, I know alot of this stuff is just in my head and I don't know how to make it go away. It all starts a few weeks ago when I was talking to a close friend (who is also a family member) about organ donation and she said that she wasn't keen on been an organ donor because she wanted to look pretty in her coffin. She is on the donor register but only to give her kidneys because aparently they are small enough to leave too big a dent in the body so won't make her body look ugly. Anyway I know everyone is entitled to their opinions about organ donation but after having someone so close to her go through a transplant I just didn't think her reasons would be so selfish and it quite upset me.
Like I said this was about 3-4weeks ago and it's starting to ruin my friendship with this person as I just seem to see pretty much everything this person does as selfish and narcissistic, she hasn't changed at all but I can't help it. I've probably always thought she could be a bit selfish at times but now I don't really even like spending time with her but it's complicated as we live together so I can't just drop her as a friend, and I wouldn't really want to because we used to have loads of fun. Maybe I'm just been stupid but I really don't know how get past this and it's really getting me down to the point where I've even thought about moving out. I understand this sounds mad but I've got to the point where I hardly talk to her, she said she will only come to my 'Liver Party' if there is birthday cake and I nearly punched her.
I'm hoping getting this down will get it out my system, with her being family and we share most of the same friends there isn't anyone I can talk to about this but I need to get it all out before it drives me totally crazy.
Tuesday 23 February 2010
Sunday 21 February 2010
Let's Party!!!
Ooh I'm starting to get excited about my 10th Birthday!! Well it's not really my 10th Birthday but the 10 year anniverary of my transplant, it's in 5weeks and I've decided to have a party! Nothing huge, just a bit of a 'pick-at-what-you-want' dinner, hopefully with some liver in there! I want a cake from ASDA where you have a photo on and I know it sounds weird but I have a photo of me in ICU after so I want that on, only problem is that it's a poloroid and I don't know if you can use them on the cakes! Anyhoo, I'm going to get balloons and banners with '10' on them and have a game of pin the liver on the body! And to finish... party bags, although slight twist is I'm going to put forms to join the donor register in them along with the usual slice of cake, sweets and a jokey toy of some form! I know it's a bit silly and over the top but I feel so grateful to have got to this milestone with so few problems! The day before all this madness is going to be my 'donor day.' I haven't completely decided what I'm doing but I plan to do a few things to say 'Thank You' and remember the life of someone who although I never met became the most important person in my life.
Thursday 18 February 2010
Silly lungs!
OK I'm not happy!
I blew my little lungs out on Monday and I got 1.67/1.98! 12weeks ago I had 2.13/2.something... (I'll look out the letter and edit it in later) I had FEV1 of 68% and my rough calculation for now is 54%, this is after 8weeks of oral antibiotics an 3weeks of IV's in these 12weeks. I do feel loads better, even the night time is a bit better so why is the spiro worse?
I saw the top doc in clinic, he has asked me to move my Dnase to the morning, and do it religiously and come back in 4weeks and if it's not up then... well I don't know... my lung function will be up!
On pluses my weight is up .2kg and I realised it has been rather a long time since I've had any blood in my sputum, just a bit post running in Spain over xmas so I'm thinking that's rather good.
Not a lot is happening in my life right now, well actually it is but it's all mundane crap, and stuff that's not really my crap to tell you about but still taking up my time! My nan's birthday went well, she seems very well at the moment, it's hard to explain but my Grandad was here whole life, she never went and did stuff socially because she just enjoyed been with him (and because she was a bit lazy as well.) Now she has to go out and have a social life or she is stuck in alone in a big house and it's doing her good, she looks well, healthier. She hates the nights though, going back home and being alone all night and waking up and making breakfast for one. We are hoping to take her to see 'The Phantom Of The Opera' soon as a late birthday treat. I'm really hoping it all comes together as I would really like to go myself. I remember making my ex taking me to see it at the cinema as a date and he wasn't impressed but I was really blown away with it, when I watched it on the small screen even though it was still really good it had lost a little sparkle which I think my have something to do with the 14" screen and no surround sound! LOL!
I HATE SNOW!
I blew my little lungs out on Monday and I got 1.67/1.98! 12weeks ago I had 2.13/2.something... (I'll look out the letter and edit it in later) I had FEV1 of 68% and my rough calculation for now is 54%, this is after 8weeks of oral antibiotics an 3weeks of IV's in these 12weeks. I do feel loads better, even the night time is a bit better so why is the spiro worse?
I saw the top doc in clinic, he has asked me to move my Dnase to the morning, and do it religiously and come back in 4weeks and if it's not up then... well I don't know... my lung function will be up!
On pluses my weight is up .2kg and I realised it has been rather a long time since I've had any blood in my sputum, just a bit post running in Spain over xmas so I'm thinking that's rather good.
Not a lot is happening in my life right now, well actually it is but it's all mundane crap, and stuff that's not really my crap to tell you about but still taking up my time! My nan's birthday went well, she seems very well at the moment, it's hard to explain but my Grandad was here whole life, she never went and did stuff socially because she just enjoyed been with him (and because she was a bit lazy as well.) Now she has to go out and have a social life or she is stuck in alone in a big house and it's doing her good, she looks well, healthier. She hates the nights though, going back home and being alone all night and waking up and making breakfast for one. We are hoping to take her to see 'The Phantom Of The Opera' soon as a late birthday treat. I'm really hoping it all comes together as I would really like to go myself. I remember making my ex taking me to see it at the cinema as a date and he wasn't impressed but I was really blown away with it, when I watched it on the small screen even though it was still really good it had lost a little sparkle which I think my have something to do with the 14" screen and no surround sound! LOL!
I HATE SNOW!
Saturday 13 February 2010
As different as Day and Night
So went yesterday to watch the filming of the How To Look Good Naked naked catwalk shows in the Bullring yesterday and it was amazing but such a long day and so far it feel like it's undone most of the good work of that final week of IV's. I'm hoping after a day of mostly rest today and a good night sleep I will feel good again.
Although I'm not holding my breathe on the good night sleep as I'm not sleeping well at the moment, my lungs wont let me, I feel quite well in the day but at night I just can't stop coughing, the really annoying sort of coughing where I have to fight to get the air in behind the sputum to move it. I can't work out why I feel fine in the day, tired but fine. It's like two different sets of lungs. Also I have this annoying pain that feels like my stomach is overfull and makes it painful to breath in past about half way. Not good with the coughing! Adding in the fact I'm waking up every few hours to go to the loo I'm really not getting much sleep. Did I mention my breathing is perfectly normal for me in the day? It's frustrating but what to do?
I treated my self to some clothes the other day, I haven't brought clothes for ages, I suppose I have been disillusioned with clothes shopping lately, my weight has been so up and down (mostly up) for the last year that I just felt it wasn't worth getting nice stuff for it just not to fit soon after. I didn't go crazy, got a nice skirt from the last of Topshop sale for £3 and a dress for £12 and a few bits from Primark. Quite versatile stuff that feels quite summery but can be styled very easy for winter too, so if I do put on or lose weight I can just save it for later and I won't be wearing it in the wrong weather!
Not much else to say, I'm going to see my Nan tomorrow, it's her birthday on Monday so we are having a big meal for her tomorrow, going to be rather weird with out my Grandad there. Monday I'm back over at the hospital, fingers crossed for lung function been up, if not it's a stay in Costa Del Heartlands... maybe the Bullring yesterday wasn't the best idea... oh well, sometimes I need to do things just for me, fuck if they are going to make me ill, obviously there are limits but sometimes pushing myself too far or missing an odd treatment needs to be done to keep the life balance, can't let CF rule too much ;-)
Although I'm not holding my breathe on the good night sleep as I'm not sleeping well at the moment, my lungs wont let me, I feel quite well in the day but at night I just can't stop coughing, the really annoying sort of coughing where I have to fight to get the air in behind the sputum to move it. I can't work out why I feel fine in the day, tired but fine. It's like two different sets of lungs. Also I have this annoying pain that feels like my stomach is overfull and makes it painful to breath in past about half way. Not good with the coughing! Adding in the fact I'm waking up every few hours to go to the loo I'm really not getting much sleep. Did I mention my breathing is perfectly normal for me in the day? It's frustrating but what to do?
I treated my self to some clothes the other day, I haven't brought clothes for ages, I suppose I have been disillusioned with clothes shopping lately, my weight has been so up and down (mostly up) for the last year that I just felt it wasn't worth getting nice stuff for it just not to fit soon after. I didn't go crazy, got a nice skirt from the last of Topshop sale for £3 and a dress for £12 and a few bits from Primark. Quite versatile stuff that feels quite summery but can be styled very easy for winter too, so if I do put on or lose weight I can just save it for later and I won't be wearing it in the wrong weather!
Not much else to say, I'm going to see my Nan tomorrow, it's her birthday on Monday so we are having a big meal for her tomorrow, going to be rather weird with out my Grandad there. Monday I'm back over at the hospital, fingers crossed for lung function been up, if not it's a stay in Costa Del Heartlands... maybe the Bullring yesterday wasn't the best idea... oh well, sometimes I need to do things just for me, fuck if they are going to make me ill, obviously there are limits but sometimes pushing myself too far or missing an odd treatment needs to be done to keep the life balance, can't let CF rule too much ;-)
Thursday 11 February 2010
I hate dentists
Just going to skim over the gap between now and the last post... my Grandad's funeral went really well considering, it was a very beautiful service that summed up him perfectly, simple, heartfelt with a few things thrown in to make you chuckle. I spent most of the wake in a side room having problems with my port, next day got I got my 4th needle and a few days later I had some Urokinase put into it and that seemed to do the trick. I ended up having a third week of IV's and finished Monday just gone and go back to clinic on Monday so hopefully my lung function has travelled in a different direction to the last 3 clinics and I have made up at least some,if not all of the 10% I've been down. I do feel better if not 100%.
I went for my Liver ultrasound yesterday and everything seems OK, my spleen is 16cms which is a little bigger than when the doctor measured it about a year ago. I'm showing no signs of other liver damage on the scans, the doctor doing it said it doesn't always show so they may want to do a biopsy anyway or it could be that the blood tests have picked something up before it's showed up on my liver or it might be that the blood tests are a bit off but there is nothing wrong. I'm hoping for the latter!
I can't remember whether I mentioned my learn direct course on here but I'm starting to learn stuff on it now and really enjoying it. To start with I was just going over very basic word processing and I was a little bored but now I'm getting to learning new stuff I'm really enjoying it and hopefully it's a start on getting somewhere in the whole job scene.
I went to register with a dentist, the receptionist was a bit shocked when I said I hadn't been to a dentist in 5/6years especially been post transplant, I've kinda been shouted at by my hospital for not going to the dentist so I thought I should finally bite the bullet and be a good little girl and brave it! LOL!
On a side note I am nearly 10years post transplant, just over 6weeks so I am trying to plan a few things. Something for my donor, to say thank you for giving me the gift of life and for a celebration of his life and something for me and family to mark the anniversary of my new start! Have a few ideas but not putting anything down just yet but will do something for my donor on the 28th March and something for my 10year on the 29th which is the day I actually had my transplant.
Anyway I'm off, I need sleep!
I went for my Liver ultrasound yesterday and everything seems OK, my spleen is 16cms which is a little bigger than when the doctor measured it about a year ago. I'm showing no signs of other liver damage on the scans, the doctor doing it said it doesn't always show so they may want to do a biopsy anyway or it could be that the blood tests have picked something up before it's showed up on my liver or it might be that the blood tests are a bit off but there is nothing wrong. I'm hoping for the latter!
I can't remember whether I mentioned my learn direct course on here but I'm starting to learn stuff on it now and really enjoying it. To start with I was just going over very basic word processing and I was a little bored but now I'm getting to learning new stuff I'm really enjoying it and hopefully it's a start on getting somewhere in the whole job scene.
I went to register with a dentist, the receptionist was a bit shocked when I said I hadn't been to a dentist in 5/6years especially been post transplant, I've kinda been shouted at by my hospital for not going to the dentist so I thought I should finally bite the bullet and be a good little girl and brave it! LOL!
On a side note I am nearly 10years post transplant, just over 6weeks so I am trying to plan a few things. Something for my donor, to say thank you for giving me the gift of life and for a celebration of his life and something for me and family to mark the anniversary of my new start! Have a few ideas but not putting anything down just yet but will do something for my donor on the 28th March and something for my 10year on the 29th which is the day I actually had my transplant.
Anyway I'm off, I need sleep!
Subscribe to:
Posts (Atom)
