Just a quick update to say I haven't forgotten about my blog, I haven't had internet for a while now.
Things aren't too different, I have a chest infection and the docs wanted me to have IV's but I'm waiting til Jan after I get back from Spain. I did get my passport back in time. WOOP WOOP! Going first thing Thursday morning, getting uber excited!
Just at my Mums at the moment having a 'first christmas' having a well good time, feels like real christmas and to think I still have the real thing to go! :-D
Anyway back to the party, will update properly as soon as I get back online...
Byeeeeees!!
Sunday 20 December 2009
Friday 11 December 2009
Queen Elizabeth
Woop woop, I should have my passport next week! Cost over £15 extra in photo's, postal fee's and stuff but I should be getting there! Yay! I'm getting really excited again now, I was looking at the pictures that my Dad sent me of the new house and remembered there is a gym so I'm hoping to get a decent amount of fitness. I ran (well I say ran, most people can fast-walk faster than I can run) to go get my train yesterday (well Weds) and OH MY GOD!! And the worst bit, I still missed the bloody train! The next train was only a few mins later on the next platform across and some how I made that! I was pulling myself up the stairs by the rails.
Anyway this all brings me to my first transplant clinic at the Queen Elizabeth in about 18months, wasn't the best one I have ever had. I woke up late, I didn't manage to get sleep when I got back from town Tuesday and finally fell asleep just after midnight, slept over 12hours! Got my train to Brum with one min to spare and like I already said I missed my connecting train at New Street Station and when I got on the next one I was pretty breathless and the train was packed and very, very hot. Thankfully I only had to be on it for about 10mins but even so I was dripping with sweat (not exactly attractive) when I got off so I must have looked really weird walking round in the freezing cold with no coat on. Now has anyone been to the QE? It's a mental place, it's huge and they always seem to be building new bits. I walked round the corner to the hospital and was lost, straight away, I asked a woman if she knew where Nuffeild House was and she gave me directions which actually sent me nowhere near, then I asked this really nice lady and she gave me perfect directions but by this time I had been walking round for ages and quite was breathless but I was late at this point, inside Nuffeild House was like a sauna, even hotter than the train which set off my chest, took a while to get me checked in because I couldn't speak for coughing so the second my CF doctor clocked me she was talking about IV's. Any I think I did convince her that I'm not actually that bad, maybe need orals, but I think she is going to try and make sure she sees me next week at clinic rather than one off the SHO's. She said 'see you next week' more than once and something about seeing what my blows are next week.
Anyhoo! Away from the CF, the liver doc isn't too happy with my diabetes control but he is happy with the weight I have gained and the stability that that and my compliance has given me. He mentioned something about my bloods and I can't for the life of me remember the name of it but some level in my blood isn't good so he asked when I last had an ultrasound scan and it has been years so he asked my CF doc to book me in for one soon and check for a long word I can't remember and sent me for more bloods and dependant on the results I might need to have a biopsy just to see whats going on. I can't remember when I last had a biopsy, I've had 5 but all pre transplant and all under GA but if I do need a biopsy I don't think that would be a good idea as my liver kicked up a bit of a fuss last time I had a GA. Hopefully won't come to that though, keeping my fingers crossed. Good thing is that they got blood very easily which shows my port is defiantly giving my veins a rest, the QE have tried before to take blood out of my wrist just by my palm and out my foot! If anyone ever tried to put a needle near my wrist again they would regret it, I've had venflons in my feet before and they tried to put on in my leg about 2" above my ankle and that HURT and I let the doctor know, LOL!
Anyway I'm going off point... I missed the first train home! HAHAHA!
When I got back home I was shattered, got into a taxi and told them where I was going and the taxi driver actually said to me I was lazy and it was in that very moment I realized why they have that plastic screen, it's to stop people hitting arsehole taxi drivers. I mean if I want a taxi to 3 streets away then that means I don't want attitude I want a taxi to 3 streets away!
Sorry for the moaning, I've actually been in a well good mood today! :-D
Anyway this all brings me to my first transplant clinic at the Queen Elizabeth in about 18months, wasn't the best one I have ever had. I woke up late, I didn't manage to get sleep when I got back from town Tuesday and finally fell asleep just after midnight, slept over 12hours! Got my train to Brum with one min to spare and like I already said I missed my connecting train at New Street Station and when I got on the next one I was pretty breathless and the train was packed and very, very hot. Thankfully I only had to be on it for about 10mins but even so I was dripping with sweat (not exactly attractive) when I got off so I must have looked really weird walking round in the freezing cold with no coat on. Now has anyone been to the QE? It's a mental place, it's huge and they always seem to be building new bits. I walked round the corner to the hospital and was lost, straight away, I asked a woman if she knew where Nuffeild House was and she gave me directions which actually sent me nowhere near, then I asked this really nice lady and she gave me perfect directions but by this time I had been walking round for ages and quite was breathless but I was late at this point, inside Nuffeild House was like a sauna, even hotter than the train which set off my chest, took a while to get me checked in because I couldn't speak for coughing so the second my CF doctor clocked me she was talking about IV's. Any I think I did convince her that I'm not actually that bad, maybe need orals, but I think she is going to try and make sure she sees me next week at clinic rather than one off the SHO's. She said 'see you next week' more than once and something about seeing what my blows are next week.
Anyhoo! Away from the CF, the liver doc isn't too happy with my diabetes control but he is happy with the weight I have gained and the stability that that and my compliance has given me. He mentioned something about my bloods and I can't for the life of me remember the name of it but some level in my blood isn't good so he asked when I last had an ultrasound scan and it has been years so he asked my CF doc to book me in for one soon and check for a long word I can't remember and sent me for more bloods and dependant on the results I might need to have a biopsy just to see whats going on. I can't remember when I last had a biopsy, I've had 5 but all pre transplant and all under GA but if I do need a biopsy I don't think that would be a good idea as my liver kicked up a bit of a fuss last time I had a GA. Hopefully won't come to that though, keeping my fingers crossed. Good thing is that they got blood very easily which shows my port is defiantly giving my veins a rest, the QE have tried before to take blood out of my wrist just by my palm and out my foot! If anyone ever tried to put a needle near my wrist again they would regret it, I've had venflons in my feet before and they tried to put on in my leg about 2" above my ankle and that HURT and I let the doctor know, LOL!
Anyway I'm going off point... I missed the first train home! HAHAHA!
When I got back home I was shattered, got into a taxi and told them where I was going and the taxi driver actually said to me I was lazy and it was in that very moment I realized why they have that plastic screen, it's to stop people hitting arsehole taxi drivers. I mean if I want a taxi to 3 streets away then that means I don't want attitude I want a taxi to 3 streets away!
Sorry for the moaning, I've actually been in a well good mood today! :-D
Tuesday 8 December 2009
I'm not a terrorist, I just wanna go see my family for Christmas!
Hmmm it's December so tis the month of Christmas! YAY!
I'm excited about Christmas, well I'm trying to stay as excited about it as I have been. I have been having problems with my passport, the application has been in for nearly a month now and I only found out today, well yesterday, my brain has shut down from lack of sleep, that my pictures are un-scanable and they have a problem with my address! Now I may be viewing this a little bit simplistically but if I had 3 pieces of contact information for someone, these been home address, email address and mobile number, and I was unsure if one of these was correct, the home address, then I would try and make contact through the email or mobile, but no they sent me a letter! How f**king clever?
Anyway the address they had for me was right so I don't know where my letter is! But even so I have my mobile switched on 90% of the time (and an answer machine as well) & I check my emails quite regular as well, I wouldn't think to send it through the method I was unsure about!
But that's by-the-by, I have new passport photo's done, and I'm them I am wearing bronzer, they said I was too pale, I mean that's nice to be told, that I'm too pale to go on my own passport! I also took my glasses off as they said they couldn't see my eyes properly as they were too thick (now I'm too blind for my own passport!) And the last problem with my passport photo is.... (and this 1 is the oddest) they can't see my ears!! Why, why, why??? I really can't see them asking me at passport control if they can see my ears!
Still as soon as town opens in a few hours I'm going to get another set of pics done (so if 1 set is wrong the other may be OK) and then send them to Peterborough and them cross my fingers and pray (and ring them everyday to find out whats going on!) I'm hoping to get all this done before about 10am so I can go to bed! I am so pumped on adrenaline about getting all this sorted I can't sleep, and I am very tired, I nearly fell asleep in Tesco about 9pm. I was sitting on the seats by the till waiting for my mum to finish and I was resting my head on the trolley and could feel myself drifting off but then some woman started yelling at her kid nearby!
I know I have really gone on about this passport but I love Christmas and for a good few years now I've been needing and refusing IV's till after NY although last year I started on 29th Dec so this year I was really looking forward to having a really good xmas than CF didn't put a damper on, it's the first xmas in years my Dad hasn't been working and it's Marcus' first xmas! So you can see why I'm so desperate to get it sorted.
OMG I'm watching Big Cook, Little Cook! I'm such a geek! LOL!
I'm excited about Christmas, well I'm trying to stay as excited about it as I have been. I have been having problems with my passport, the application has been in for nearly a month now and I only found out today, well yesterday, my brain has shut down from lack of sleep, that my pictures are un-scanable and they have a problem with my address! Now I may be viewing this a little bit simplistically but if I had 3 pieces of contact information for someone, these been home address, email address and mobile number, and I was unsure if one of these was correct, the home address, then I would try and make contact through the email or mobile, but no they sent me a letter! How f**king clever?
Anyway the address they had for me was right so I don't know where my letter is! But even so I have my mobile switched on 90% of the time (and an answer machine as well) & I check my emails quite regular as well, I wouldn't think to send it through the method I was unsure about!
But that's by-the-by, I have new passport photo's done, and I'm them I am wearing bronzer, they said I was too pale, I mean that's nice to be told, that I'm too pale to go on my own passport! I also took my glasses off as they said they couldn't see my eyes properly as they were too thick (now I'm too blind for my own passport!) And the last problem with my passport photo is.... (and this 1 is the oddest) they can't see my ears!! Why, why, why??? I really can't see them asking me at passport control if they can see my ears!
Still as soon as town opens in a few hours I'm going to get another set of pics done (so if 1 set is wrong the other may be OK) and then send them to Peterborough and them cross my fingers and pray (and ring them everyday to find out whats going on!) I'm hoping to get all this done before about 10am so I can go to bed! I am so pumped on adrenaline about getting all this sorted I can't sleep, and I am very tired, I nearly fell asleep in Tesco about 9pm. I was sitting on the seats by the till waiting for my mum to finish and I was resting my head on the trolley and could feel myself drifting off but then some woman started yelling at her kid nearby!
I know I have really gone on about this passport but I love Christmas and for a good few years now I've been needing and refusing IV's till after NY although last year I started on 29th Dec so this year I was really looking forward to having a really good xmas than CF didn't put a damper on, it's the first xmas in years my Dad hasn't been working and it's Marcus' first xmas! So you can see why I'm so desperate to get it sorted.
OMG I'm watching Big Cook, Little Cook! I'm such a geek! LOL!
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