I have now reached the stage where I am counting down the days until my IVs finish.
On thursday my physio came out to do halfway lung function to see if things are improving- they slowly are! My lung function was upto 62%. So thats an improvement of about 3%. Not brilliant but at least slowly going in the right direction. Whilst my cough is becoming less often, when I do cough it is still in quite a large coughing fit and still more often than not ending up in me being sick. It's not pleasant but I am bringing up alot of phlegm off my chest, so it can only be a good thing in the long run.
My physio is coming out again this thursday as well, to do end of ivs lung function. She will also actually do a good session of physio with me as well so hopefully that will do me some good.
On friday I had to go to a funeral. It was my boyfriends grandmas :o( It was very sad and quite a few tears were shed that morning. I did alright until I actually saw the coffin and we got into the church for the service. It was very tough and sad saying goodbye, but A did really well in reading the eulogy (which made me cry even more). It was really tough seeing both him and his sister really upset and also his mum. It was his dad's mum who we were burying and he did really well with it. After the service we moved to the cemetery for the burial which was also quite difficult. It was the first burial I had been too and I couldn't stop the tears when they lowered the coffin into the ground :o( . His grandad had died a few years earlier and after it was all over A's mum told us that his grandma had been placed on top of his grandad's coffin. Which was nice to know that they were both together again. Afterwards we went back to A's uncles house for a small get-together. There was only a maximum of 25 people at the funeral anyway. There was about 16 of us back at his uncles house for about an hour or so before we left to go back to A's house. For tea that night we had fish and chips from the local chip shop- it was her favourite meal and if she could of had it every day I think she would of. Everytime A took his grandma out to do her food shopping they would have lunch in morrisons cafe and without fail she would order fish and chips. When we took her out for her birthday on new years eve to a local pub/restaurant she had loads of things to choose from and she still picked fish and chips. I will miss her, even though I hadn't known her long.
A little by the by about the funeral- I thought the vicar was a little strange. If anyone has ever watched the film '3men and a little lady' , the vicar reminded me of right at the end when the actor Ted Danson (I cant remember the characters name) dresses up as a vicar to delay the wedding. Well the character of that vicar in the film reminded me so much of the vicar who conducted the funeral. When I first met him outside the church before we followed the coffin in I had to try very hard to not laugh at him. I couldn't help it when I first saw him!!
Yesterday I didn't do alot except do some relaxing really.
Thats now me pretty much upto date for now.
Wedding!
Sunday, January 31, 2010
Friday, January 22, 2010
Clinic and IVs
Yesterday I went to clinic to start my IVs. Things went alright, port was needled first time and things are going through it lovely. It's not bleeding back, however I'm not too worried about that as my ports have always been temperemental things when it comes to that. Sometimes it will bleed back and sometimes it won't, but as it is flushing fine and everything else there is no need to resite the needle just to say it was also bleeding back. Ringing up and asking to start the IVs proved to be a good thing, especially when the figures came in. My weight was down by about 3kgs since I was last at clinic, my sats were sitting at 95% in air, they normally sit at 98% in air no matter what I'm doing (even during excercise!). The highest registered lung function I got was 59%, which was down by about 20% on what it was in December. Out of 6 attempts at doing my lung function, that was the best I could do but more worryingly the lowest one I recorded was only 25%, however this was followed by a very long coughing fit which brought up alot of sputum (I'm sure they appreciated the amount, lots to send off to test!) and I then managed to get the 59%. I guess it just goes to show just how much clearing your chest can actually help. Although scared me a little when I realised just how badly I can be affected, especially at the minute where I go through mini episodes of coughing quite awhile, knowing its not all clear but not being able to clear it for 5-10minutes before coughing again. These coughing episodes have also caused me to be sick a number of times as well. So worringly I could be operating on such a low lung function during these times, yet I still carry on as normal!!
I have been put on colomycin and tazocin for 2weeks. Both of these drugs are three times a day. The tazocin is in a syringe and is pushed through over 5minutes, the colomycin is in an intermate and takes about 30minutes to go through.
Unfortunately for me I woke up feeling pretty rough this morning, with a very bad headache, tingly lips and tongue and also oral thrush. I was also feeling pretty sick and abit unstable and wobbly when I tried to walk to the bathroom. I wasn't sure if this was an allergic reaction to the antibiotics, but when I rang my team up I was told that it was just side effects of IV colomycin! I have been given some nystatin for the thrush, but otherwise have to try and cope with the tingly lips/tongue, sickness and headaches as there isn't alot they can do about it. If they get to bad then they can stop the drug and give me something else, but it is a good antibiotic and effective against pseudomonnas, so they would prefer me to battle it out against the side effects for as long as I can. The headache has gone now, but I've still got the tingly lips and tongue feeling, along with abit of feelings of sickness. I think I can cope, just hopefully get lots of sleep which will help.
Thats me for now, I'm going to log off, get my IVs and then go to bed for some much needed sleep.
I have been put on colomycin and tazocin for 2weeks. Both of these drugs are three times a day. The tazocin is in a syringe and is pushed through over 5minutes, the colomycin is in an intermate and takes about 30minutes to go through.
Unfortunately for me I woke up feeling pretty rough this morning, with a very bad headache, tingly lips and tongue and also oral thrush. I was also feeling pretty sick and abit unstable and wobbly when I tried to walk to the bathroom. I wasn't sure if this was an allergic reaction to the antibiotics, but when I rang my team up I was told that it was just side effects of IV colomycin! I have been given some nystatin for the thrush, but otherwise have to try and cope with the tingly lips/tongue, sickness and headaches as there isn't alot they can do about it. If they get to bad then they can stop the drug and give me something else, but it is a good antibiotic and effective against pseudomonnas, so they would prefer me to battle it out against the side effects for as long as I can. The headache has gone now, but I've still got the tingly lips and tongue feeling, along with abit of feelings of sickness. I think I can cope, just hopefully get lots of sleep which will help.
Thats me for now, I'm going to log off, get my IVs and then go to bed for some much needed sleep.
Tuesday, January 19, 2010
Milo!
Also I just had to post this picture of the beautiful Milo. He's my boyfriends dalmation, and they compete in Agility together. Milo is abit of a dippy dog and really quite big and heavy (he weighs 36kg!) but is just full of love. A got Milo when he was about 6months old from a rescue centre. They knew he had been badly mistreated in the first few months of his life and unfortunately those things still affect Milo know. He can be quite aggressive and territorial but I've learnt to not shout at him and remain calm and give him love, even when hes growling and showing all his teeth, helps him more than shouting. Me and Milo get on great, the problem becomes though is he thinks when I am giving him a cuddle that if anyone walks in they are going to attack me, so he goes into protection mode!! It's quite hard keeping a big old dalmation calm and convince him to lie back down and that my boyfriend isn't going to hurt me (I think Milo gets jealous if he sees me giving A a cuddle after I've just been giving him some attention). Anyway I just love this picture because he just looks all sweet and innocent. I think he is just misunderstood, but unfortunately quite a few of A's family are scared of him and think I should be too, because in comparison to them I really am quite small (in all ways-height, weight) and they worry he will hurt me. So far I have had a few bruises where hes trampled over my legs to try and protect me but overall I love Milo!!! Just thought I would share the picture of one of the most beautiful dogs in the world.
A working boiler and other things
Hooray! My boiler is now fixed!!
After alot of hassle, the part finally came in yesterday for the boiler. Someone came out to fix it but 10minutes after he left it had broken again!! It appears while he was fiddling around inside putting the new part in an electrical wire had come loose on the hetaing side of the panel and so it stopped working again!! Luckily British Gas could get someone out again the same afternoon and they managed to fix it. Therefore I have spent a nice lovely warm evening back in my own house again and things are fine.
I also got my new tv set-up last night, ready for the lovely virgin media people to connect me upto their tv service today. I decided to go for the V+ box, as that now gives me HD tv, and allows me to record some of the programmes I like to watch but dont always get to see. So now I dont ever miss out. I have rearranged my living room and put my tv at the other end where my chair was. So the chair is now where my tv was (I will take a picture later when I get my memory card back from my bf!). I wasn't so sure about it last night because I thought the chair was looking really stupid, but this morning it has really grown on me. In fact I am sat in the chair now. I rarely used it before, as it was to far away from the tv really (I had a small tv!!) but my new tv is alot bigger and its just comfy. I have got a little foldable table next to the chair, which I am going to get a lamp for. Then it will be like my own little reading corner!! I'll be able to curl up in the chair with a good book, the lamp on next to me and a cup of tea on the table as well-perfection! It's not quite my own little library that I've always envisioned but its certainly the image I have for the chair and lighting where I can escape into the world of fiction.
The not so bright spot on the horizon at the minute is that I will be starting IVs on thursday. I am oughing through the night now and at times to a point where I am sick, so I rang up the CF team and we decided to just start IVs when I go to clinic on thursday rather than wait until clinic and see what my lung function and stuff is doing before making the decision. So whilst I will have a warm house and nice new tv and V+ with lots of new channels to watch on there, I won't be able to make use of them for long before I go to my parents for the IVs.
Will blog again soon.
After alot of hassle, the part finally came in yesterday for the boiler. Someone came out to fix it but 10minutes after he left it had broken again!! It appears while he was fiddling around inside putting the new part in an electrical wire had come loose on the hetaing side of the panel and so it stopped working again!! Luckily British Gas could get someone out again the same afternoon and they managed to fix it. Therefore I have spent a nice lovely warm evening back in my own house again and things are fine.
I also got my new tv set-up last night, ready for the lovely virgin media people to connect me upto their tv service today. I decided to go for the V+ box, as that now gives me HD tv, and allows me to record some of the programmes I like to watch but dont always get to see. So now I dont ever miss out. I have rearranged my living room and put my tv at the other end where my chair was. So the chair is now where my tv was (I will take a picture later when I get my memory card back from my bf!). I wasn't so sure about it last night because I thought the chair was looking really stupid, but this morning it has really grown on me. In fact I am sat in the chair now. I rarely used it before, as it was to far away from the tv really (I had a small tv!!) but my new tv is alot bigger and its just comfy. I have got a little foldable table next to the chair, which I am going to get a lamp for. Then it will be like my own little reading corner!! I'll be able to curl up in the chair with a good book, the lamp on next to me and a cup of tea on the table as well-perfection! It's not quite my own little library that I've always envisioned but its certainly the image I have for the chair and lighting where I can escape into the world of fiction.
The not so bright spot on the horizon at the minute is that I will be starting IVs on thursday. I am oughing through the night now and at times to a point where I am sick, so I rang up the CF team and we decided to just start IVs when I go to clinic on thursday rather than wait until clinic and see what my lung function and stuff is doing before making the decision. So whilst I will have a warm house and nice new tv and V+ with lots of new channels to watch on there, I won't be able to make use of them for long before I go to my parents for the IVs.
Will blog again soon.
Thursday, January 14, 2010
Broken boiler :o(
I have a broken boiler! It is constantly dripping dirty water when the boiler is on, even if the heating is off and I'm not running the hot water. It's also not heating properly either. Therefore I spent last night at my parents house as it's too cold for me to be in a house with no heating.
Today a british gas engineer was meant to be coming out sometime between 8-1pm to fix it. When they had not turned up by half one I rang the estate agents who I rent from (who organised the appt), they rang back at half past 2 saying there had been an error on british gas end and that they would be now coming out sometime between 4-5pm but definitely no later than 6pm. Which is the time they stop coming out for the day. It is now 6.05pm and no british gas engineer!!!!! Therefore I am now spending tonight at my parents house as well. Not a happy bunny.
Today a british gas engineer was meant to be coming out sometime between 8-1pm to fix it. When they had not turned up by half one I rang the estate agents who I rent from (who organised the appt), they rang back at half past 2 saying there had been an error on british gas end and that they would be now coming out sometime between 4-5pm but definitely no later than 6pm. Which is the time they stop coming out for the day. It is now 6.05pm and no british gas engineer!!!!! Therefore I am now spending tonight at my parents house as well. Not a happy bunny.
Wednesday, January 6, 2010
Very long time
It's been a very long time, but I thought I would start doing some more blogging again!
A quick catch-up on my life- I've now been with my boyfriend 5months, my diabetes control has got alot better so I have alot more energy now. My CF is still fluctuating and in the last year my baseline lung function has dropped by about 10% and there is no explanation for this, so it is something I just have to accept. I am now an Assistant Scout Leader and loving it, I have been placed in charge of all the paperwork side for the scout group, which I love, as does our GSL because she knows that everything will get done like she asks. The GSL is a friend of mine who I have known all my life and we are also in another group together, so she knows I'm a good bet. If she asks for something to be done, she knows it will be done within 24hours and be back with her. We have a scout troop that consists of 11members now- which is fantastic because it was a new one that only started at the end of September.
I hope to blog alot more regularly and keep upto date with things.
A quick catch-up on my life- I've now been with my boyfriend 5months, my diabetes control has got alot better so I have alot more energy now. My CF is still fluctuating and in the last year my baseline lung function has dropped by about 10% and there is no explanation for this, so it is something I just have to accept. I am now an Assistant Scout Leader and loving it, I have been placed in charge of all the paperwork side for the scout group, which I love, as does our GSL because she knows that everything will get done like she asks. The GSL is a friend of mine who I have known all my life and we are also in another group together, so she knows I'm a good bet. If she asks for something to be done, she knows it will be done within 24hours and be back with her. We have a scout troop that consists of 11members now- which is fantastic because it was a new one that only started at the end of September.
I hope to blog alot more regularly and keep upto date with things.
Saturday, August 22, 2009
Bit of a lapse in blogging!
Hmmm..... so I think my last blog was the pictures from my holiday (I really should of checked that out before I started this one!)- Ok I was wrong! I just went and checked quickly.
So since I've last blogged there has been a mixture of good things and bad things happening.
As I write I have currently been dating somebody for 17 days (woop woo!) and we are very happy at the moment :). We have taken a daytrip down to great yarmouth! His parents were away on holiday and had forgotten some medication, so we took it down to them, had a game of mini golf and a carvery before heading back home again. On this particular trip he learnt that I am a rubbish navigator!! I was supposed to be helping him with directions from about King's Lynn, which is all he really knew upto, but I fell asleep within about 20minutes of the journey and didn't wake up again until about 10mins away from Great Yarmouth-oops!! Good job he had borrowed a sat nav!!!! :)
The not so good news is that my brother and his partner were expecting a baby and she sadly lost it on thursday. They believe it is a miscarriage but there is still a slim chance that she is actually still pregnant but it is an ectopic pregnancy, which means it isn't a viable pregnancy. She is still having some more blood tests done to confirm which it is and whether more investigation will need to be done or not. I felt so sad for both of them, when they came to my parents house from the hospital after hearing the news. One of the hardest things I've ever had to do is comfort and hug my twin brother while he is in such obvious distress. My mum didn't know what to do either- they were both crying and she didn't know whether to go her son or his partner, she ended up hugging her and holding her, while I had my brother. I was so close to tears but we had someone else in the house and my little rational head kicked in and I went and kept them occupied in the garden (they are only 4), while the others all had a good cry together. To be fair the young one was very good and responded very well to a bribe of a gold penny (£1) if they played outside until me or mum said they could come back in and even more so when offered a biscuit and some apple juice (big treat!!). Although this pregnancy hasn't been successful they did go for carrier testing and found out that both are free from the CF gene, which means should they try again they know that CF is something they never have to worry about. I was pleased for my brother knowing that it means its not something he had to worry about. Before the results were back he had had some serious thinking to do anyway as if the baby was born with CF, I would never of been able to spend anytime with it knowing that im chronically colonised with pseudomonnas, as it just wouldnt of been fair on the baby. I think that really hit him, as I know he goes into denial about alot of aspects of CF, which isn't overly surprising and I think he sometimes feels guilty that he doesn't have CF but as his twin I do. So while I was happy for him to not be a carrier I also had a very selfish moment (and quite a few tears) over the fact that I ended up with CF and that he wasn't a carrier and it seemed so very unfair!
So that's all the sad bits ( I hope!).
Today I went to see the Bikers Branch of the Royal British Legion set off on a sponsored bike ride for the RBL. I got to have a ride on of their bikes- very exciting:
And the other two photos I've just tried to add have just disappeared! So I may try again later with them :)
My best friend is coming today as well to stay with me until tuesday-extremely happy and excited about this. I haven't seen her in nearly 3months!!!! Then on wednesday its my birthday-woop woo!
Will try to blog more regularly
So since I've last blogged there has been a mixture of good things and bad things happening.
As I write I have currently been dating somebody for 17 days (woop woo!) and we are very happy at the moment :). We have taken a daytrip down to great yarmouth! His parents were away on holiday and had forgotten some medication, so we took it down to them, had a game of mini golf and a carvery before heading back home again. On this particular trip he learnt that I am a rubbish navigator!! I was supposed to be helping him with directions from about King's Lynn, which is all he really knew upto, but I fell asleep within about 20minutes of the journey and didn't wake up again until about 10mins away from Great Yarmouth-oops!! Good job he had borrowed a sat nav!!!! :)
The not so good news is that my brother and his partner were expecting a baby and she sadly lost it on thursday. They believe it is a miscarriage but there is still a slim chance that she is actually still pregnant but it is an ectopic pregnancy, which means it isn't a viable pregnancy. She is still having some more blood tests done to confirm which it is and whether more investigation will need to be done or not. I felt so sad for both of them, when they came to my parents house from the hospital after hearing the news. One of the hardest things I've ever had to do is comfort and hug my twin brother while he is in such obvious distress. My mum didn't know what to do either- they were both crying and she didn't know whether to go her son or his partner, she ended up hugging her and holding her, while I had my brother. I was so close to tears but we had someone else in the house and my little rational head kicked in and I went and kept them occupied in the garden (they are only 4), while the others all had a good cry together. To be fair the young one was very good and responded very well to a bribe of a gold penny (£1) if they played outside until me or mum said they could come back in and even more so when offered a biscuit and some apple juice (big treat!!). Although this pregnancy hasn't been successful they did go for carrier testing and found out that both are free from the CF gene, which means should they try again they know that CF is something they never have to worry about. I was pleased for my brother knowing that it means its not something he had to worry about. Before the results were back he had had some serious thinking to do anyway as if the baby was born with CF, I would never of been able to spend anytime with it knowing that im chronically colonised with pseudomonnas, as it just wouldnt of been fair on the baby. I think that really hit him, as I know he goes into denial about alot of aspects of CF, which isn't overly surprising and I think he sometimes feels guilty that he doesn't have CF but as his twin I do. So while I was happy for him to not be a carrier I also had a very selfish moment (and quite a few tears) over the fact that I ended up with CF and that he wasn't a carrier and it seemed so very unfair!
So that's all the sad bits ( I hope!).
Today I went to see the Bikers Branch of the Royal British Legion set off on a sponsored bike ride for the RBL. I got to have a ride on of their bikes- very exciting:
And the other two photos I've just tried to add have just disappeared! So I may try again later with them :)
My best friend is coming today as well to stay with me until tuesday-extremely happy and excited about this. I haven't seen her in nearly 3months!!!! Then on wednesday its my birthday-woop woo!
Will try to blog more regularly
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