I had a clinic appointment recently and the Dr sat down and said that she needs to have a serious discussion with me but shes not pushing anything on me and that whatever my decision is they will respect that and help me in any way they can. I instantly knew it was about my weight and about the PEG so i prepared myself for an ear bashing about not eating enough and that i need to try harder etc etc...
But it didnt come! I was shocked, the Dr was really nice about it and she showed me the chart of my weight tracking since i joined them and it was shocking to say the least!
I was in 2009 around 54kg and since then with each infection getting worse and taking more of a toll on me, my weight is whats been suffering the most. I knew that it wasnt the best it could be or should be, but i didnt realise it was THAT bad. Its like ive been slowly disappearing and not realised it really.
So she discussed my options with me.
Option 1 :- To carry on as im doing so and just eat as much as i can and include a range of supplements as well. I can manage one supplement a day at the moment and use Polycal in most things i can, but i want to be having at least 3 supplements a day to give myself a chance. But it was made clear that if i chose this option that i would need to be having at least a minimum of 6 supplements a day plus my ordinary meals and snacks. This didnt seem realistic to me at all!
Option 2:- NG Feeding. This was right out the window from the start. I cant handle the thought of passing a tube up my nose and so i just wouldnt be able to actually do it. So thats two options out the window really.
Option 3:- I knew what this one was going to be. This was the PEG.
I have had lengthy discussions with the dietician about this and i nearly had it done in March. I was halfway there on the train and they rang me to say my bed has been cancelled and not to bother coming in. They had known this all day and decided now to ring me when they knew i would be travelling in. We went home and after lengthy phonecalls and people being so inept at communication i cancelled the whole thing and told them to forget about it.
I felt like it was fate telling me i didnt need it done and as i wasnt 100% about happy or wanting to have it done i felt it was the right thing to do at the time to cancel it.
Now i feel that it is my only option and so i have made the, for me, rather huge decision to have another go at having it done. This time i think it will go ahead as its fairly urgent now.
The Dr said if my weight drops any more and my lung function in turn gets worse that i am referred for being considered for a transplant, that they wouldnt even look at me due to my weight being so low. This scared me as i dont want to ever be in the position of needing a transplant, (though i know it is still possible with this disease being so unpredictable) and them turning me away for my possible second chance just because i cant keep myself weighty enough.
So after discussion with mum i decided i am going to have the PEG done. I rang the hospital on the Thursday last week to say i will go ahead with that option and the Dr has sent off my referral to the Endoscopy team. So its just a matter of waiting for that to be sorted now and then a plan of action wil be made for me to go in for a few days before the procedure for some IVs. I will stay for a while after the procedure as well to make sure my IVs are doing the trick and i am fully trained to manage my PEG at home.
I discussed my fears with the Dr then and there and for once i felt like she understood them! Anyone else ive told on the team ive always felt like they have just thought im being rediculous and to stop being so stupid. I didnt feel any pressure this time and i think thats partly because i know it is the best option for me now, where as previously i didnt think it was the right time at all.
Showing posts with label decisions. Show all posts
Showing posts with label decisions. Show all posts
Tuesday, 5 July 2011
Tuesday, 22 March 2011
PEG
As some people know i am getting my PEG put in on the 29th and i am bricking it about the procedure!
I was also before bricking it a lot about the afterwards part of the PEG and i was worried that it just wouldnt work for me and would have been a waste of my time.
But ive just seen the perfect video on youtube about a girl who had a PEG put in, it wasnt about the procedure bits, it was about the "afterwards" parts, like the weight gain, the being even more body conscious, things like that. But watching that video has settled me a lot now about it all. I deffinetly feel like im doing the right thing for myself by getting this PEG done. I keep sitting here, when im meant to be doing coursework, and thinking about all the benefits i will feel and even see hopefully a few months after the PEG has been in use with me. I will be a bit weightier, i should have more energy, i should have a bit more colour in myself, i should fit my clothes better! Hell i might even need to go shopping eventually for new clothes if things work really well!!
So i do still feel like i was really pressured and forced into having the PEG done, by CF and by my dietician putting the pressure on me constantly about gaining weight and my drops in lung functions from not having the energy to fight infections etc. So im still pissed with her about it, but i dont think there will ever be a time when a CFer isnt pissed off with their dietician from things ive heard/read!
But i dont think that i will be making the wrong decision. I mean when she first mentioned it all months ago i declined outright, i wouldnt even hear of how well it worked for other patients or anything about it. Point blankely refused to listen to her about it. But when i was like that i still felt a part of me wanted to know how it all worked and that it could be my answer and bit of help for taking this great pressure of "you must eat more" off my shoulders. But i didnt want to show weakness and give in and ask about it. It was stupid!
With me, approching subjects such as the PEG and the Port and what i consider for me in my life to me to be a pretty huge deal, have to be done delicately, otherwise i just shut down and wont listen to you. Its my stubborn streak coming out in complete force, ray guns included! I feel like they are telling me that i cant manage on my own, that im failing on my own and that i need the help. And even tho part of me is yelling inside saying "yes, help me! please im struggling so much here i cant stand it!" i ignore that and stamp my feet saying i can do it on my own, i can take care of myself and im not failing and dont need the help. Its part of the reason its taken me so long to make the decision to have this PEG done, where as with the Port it was me who approached the Dr about it. Albeit just asking for information about it as i didnt know what it was, and he ended up saying its a route we needed to start thinking about. But it was an easier decision to make for me as it was me who brought it all up, it was me who opened that door and started walking down that road. It wasnt me who brought up the PEG.
So now ive gotten a lot better about the "afterwards" parts of having the PEG, i just need to figure out how to feel better about the procedure. I dont like how they do it. Ive not had a local before or sedation. They said i wont remember it as the sedation is from the same family as the date drug Rohypnol(sp?). But im worried that the local wont work and i wont be able to communicate that im in pain. Something like that is really worrying me, i dont know what the chances are exactly of that happening really, i asked the nutrition nurses about it and it was like she just thought it was the worlds stupidest question to ask! All she said was that it will work and they will check. Yeah like that totally settles me. Not. The psychologist is meant to be coming to see me the day before i have it done as she knows how scared i am, so hopefully she can give me some techniques to calm myself down or something.
I was also before bricking it a lot about the afterwards part of the PEG and i was worried that it just wouldnt work for me and would have been a waste of my time.
But ive just seen the perfect video on youtube about a girl who had a PEG put in, it wasnt about the procedure bits, it was about the "afterwards" parts, like the weight gain, the being even more body conscious, things like that. But watching that video has settled me a lot now about it all. I deffinetly feel like im doing the right thing for myself by getting this PEG done. I keep sitting here, when im meant to be doing coursework, and thinking about all the benefits i will feel and even see hopefully a few months after the PEG has been in use with me. I will be a bit weightier, i should have more energy, i should have a bit more colour in myself, i should fit my clothes better! Hell i might even need to go shopping eventually for new clothes if things work really well!!
So i do still feel like i was really pressured and forced into having the PEG done, by CF and by my dietician putting the pressure on me constantly about gaining weight and my drops in lung functions from not having the energy to fight infections etc. So im still pissed with her about it, but i dont think there will ever be a time when a CFer isnt pissed off with their dietician from things ive heard/read!
But i dont think that i will be making the wrong decision. I mean when she first mentioned it all months ago i declined outright, i wouldnt even hear of how well it worked for other patients or anything about it. Point blankely refused to listen to her about it. But when i was like that i still felt a part of me wanted to know how it all worked and that it could be my answer and bit of help for taking this great pressure of "you must eat more" off my shoulders. But i didnt want to show weakness and give in and ask about it. It was stupid!
With me, approching subjects such as the PEG and the Port and what i consider for me in my life to me to be a pretty huge deal, have to be done delicately, otherwise i just shut down and wont listen to you. Its my stubborn streak coming out in complete force, ray guns included! I feel like they are telling me that i cant manage on my own, that im failing on my own and that i need the help. And even tho part of me is yelling inside saying "yes, help me! please im struggling so much here i cant stand it!" i ignore that and stamp my feet saying i can do it on my own, i can take care of myself and im not failing and dont need the help. Its part of the reason its taken me so long to make the decision to have this PEG done, where as with the Port it was me who approached the Dr about it. Albeit just asking for information about it as i didnt know what it was, and he ended up saying its a route we needed to start thinking about. But it was an easier decision to make for me as it was me who brought it all up, it was me who opened that door and started walking down that road. It wasnt me who brought up the PEG.
So now ive gotten a lot better about the "afterwards" parts of having the PEG, i just need to figure out how to feel better about the procedure. I dont like how they do it. Ive not had a local before or sedation. They said i wont remember it as the sedation is from the same family as the date drug Rohypnol(sp?). But im worried that the local wont work and i wont be able to communicate that im in pain. Something like that is really worrying me, i dont know what the chances are exactly of that happening really, i asked the nutrition nurses about it and it was like she just thought it was the worlds stupidest question to ask! All she said was that it will work and they will check. Yeah like that totally settles me. Not. The psychologist is meant to be coming to see me the day before i have it done as she knows how scared i am, so hopefully she can give me some techniques to calm myself down or something.
Tuesday, 18 January 2011
Weight
I had an appointment recently and things are good and bad really. For once my efforts have been paying off and I've gone from 38% lung function up to 45%. Which still isn't the best, but its heading in the direction i need it to go, so ill take it for now and just work a bit harder to get it further increased.
Weight is a huge problem for me right now. Its getting me quite low and really frustrated. I cant seem to gain any weight on my own. I'm about 46kg right now and the dietician keeps going on about how I'm so underweight. Doesn't she think i know that!! I'm not that keen on my dietician especially after that remark she made once about being able to teach anatomy with my arms 'coz they are so skinny.
Ive been given 6 weeks until my next appointment and if I've not gained weight enough for them to be remotely happy then I'm in serious discussions about getting a PEG. This i really obviously do not want!!
Its just extremely frustrating beyond words, that I'm eating and eating and its just not sticking to me at all. I'm even making myself drink my Ensure+ shakes again and I'm trying to use Maxijul powder again in my drinks and things like cup a soups i have at lunch time. I had to give a full rendition of what id eaten for the past week to the dietician which pisses me off when i have to do that, as even if I've sat and eaten like 6 full on family sized cakes all to myself everyday she still isn't happy with me! I give up with her. I don't listen to her really, just glaze over and think about where id rather be. Its not as if she gives me any advice to listen to anyway!
I had the PEG feed talk every time I've been there for the past like month now, and its really pissing me off that they wont take "no" for an answer. I said i don't want NG feeding coz i just cant handle the thought of it let alone actually having it happen. So they've now moved onto PEG feeding. Which is worse, so god knows where their thinking is that I'm going to say "yes" to this when i already said "no" to NG feeding.
I realise it would help me out greatly and if my weight went up then it would help me out a lot with other things as well. But i just don't think PEG feeding is the way for me to be going yet. Its like an instinct that's telling me i don't need that yet and to stick to my guns about doing this myself. Imagine how pleased ill feel if i can get back to 54kg on my own without interference from another horrid foreign body in me. I understand that some people are just not in a position to say no to such help, and i might well be one of them people one day, i just don't know. But while I've got the chance to do this on my own, and feel my own work and efforts paying off myself then I'm going to take it.
The Dr, as nice and lovely as she is, explained in a better way why they want me to do tube feeding. She said that if I'm ever in the unfortunate position to need a lung transplant, then there is the strict rules to follow for weight amongst other things. Which i fully understand and do comprehend to an extent (without being in such a position i can only understand it to an extent i think) but it almost felt like she was slightly using that what she said as a scare to get me to do tube feeding.
Even if at my next appointment I've gained weight, I'm still going to look into PEG feeding while I've got the chance to ask all i can think of to ask, then if the time comes that i really really do need it, then I've got a lot of info and its not all going to be new to me like now. Perhaps it will terrify me less as well.
Weight is a huge problem for me right now. Its getting me quite low and really frustrated. I cant seem to gain any weight on my own. I'm about 46kg right now and the dietician keeps going on about how I'm so underweight. Doesn't she think i know that!! I'm not that keen on my dietician especially after that remark she made once about being able to teach anatomy with my arms 'coz they are so skinny.
Ive been given 6 weeks until my next appointment and if I've not gained weight enough for them to be remotely happy then I'm in serious discussions about getting a PEG. This i really obviously do not want!!
Its just extremely frustrating beyond words, that I'm eating and eating and its just not sticking to me at all. I'm even making myself drink my Ensure+ shakes again and I'm trying to use Maxijul powder again in my drinks and things like cup a soups i have at lunch time. I had to give a full rendition of what id eaten for the past week to the dietician which pisses me off when i have to do that, as even if I've sat and eaten like 6 full on family sized cakes all to myself everyday she still isn't happy with me! I give up with her. I don't listen to her really, just glaze over and think about where id rather be. Its not as if she gives me any advice to listen to anyway!
I had the PEG feed talk every time I've been there for the past like month now, and its really pissing me off that they wont take "no" for an answer. I said i don't want NG feeding coz i just cant handle the thought of it let alone actually having it happen. So they've now moved onto PEG feeding. Which is worse, so god knows where their thinking is that I'm going to say "yes" to this when i already said "no" to NG feeding.
I realise it would help me out greatly and if my weight went up then it would help me out a lot with other things as well. But i just don't think PEG feeding is the way for me to be going yet. Its like an instinct that's telling me i don't need that yet and to stick to my guns about doing this myself. Imagine how pleased ill feel if i can get back to 54kg on my own without interference from another horrid foreign body in me. I understand that some people are just not in a position to say no to such help, and i might well be one of them people one day, i just don't know. But while I've got the chance to do this on my own, and feel my own work and efforts paying off myself then I'm going to take it.
The Dr, as nice and lovely as she is, explained in a better way why they want me to do tube feeding. She said that if I'm ever in the unfortunate position to need a lung transplant, then there is the strict rules to follow for weight amongst other things. Which i fully understand and do comprehend to an extent (without being in such a position i can only understand it to an extent i think) but it almost felt like she was slightly using that what she said as a scare to get me to do tube feeding.
Even if at my next appointment I've gained weight, I'm still going to look into PEG feeding while I've got the chance to ask all i can think of to ask, then if the time comes that i really really do need it, then I've got a lot of info and its not all going to be new to me like now. Perhaps it will terrify me less as well.
Sunday, 27 June 2010
Feeling a bit more optimistic!
So my last blog wasn't a very happy or calm one really!
I did as a few people suggested and just thought calmly about the situation, whey up my options, sleep on things a little. I didn't want to rush into a decision i might regret. No matter what my last post suggested. I do love Uni, and i love my course (certain things excluded about that) and i don't really want to leave Uni, unless i got really really very ill and had no choice, or some other situation occurred and i had no choice but to leave.
So i thought and slept and thought some more. I took a look at my results again with a clearer mind and didn't just see the negative side of it all. I did 6 modules and i passed 3 of them, and failed the other three, but only the exam side of them modules. So i did actually pass half my second year!
I worked out the results as well, and to pass on coursework or exams, you need to get 40% + well on one exam i got only 24, but that's only 16 marks from a pass, and most of my question were worth about 8+ points, so really that means i only messed up on two questions! Not bad for a 2 hr exam!
The other two i missed a pass by 7/8 marks, which again each question was worth 8+ marks and so that means i only messed up 1 question on each of them exams!
This made me feel a little more smarter than i had previously felt. It showed me that i was clearly on the right track somewhere along the exam paper line, just not quite there. Plus i have a feeling that i know where i fell down and lost my marks for the exams i missed a pass by 7 or 8 marks on, and so I'm hoping that i just need to really improve them weaknesses and refresh all the other things and i should be better at the exams enough for a pass! I even thought of the point that i might have lost some marks simply because they couldn't read my writing or it didn't make sense!
So i managed to put a positive spin on the negative a little, and I'm pretty happy i managed to do that, as otherwise id still be curled in a ball crying on my bed about what a failure i am, and why do i bother with anything when i always seem to fall flat on myself lol!
I think the sunshine has definitely helped lift my spirits :D Long may it continue!!
So i just need to find £150 to pay for my resits as its £50 a time if the student doesn't have extenuating circumstances accepted or submitted. Which i didn't - that's a very long story and ill tell anyone who really wants to know, as long as they are willing to accept a very long emailed explanation haha!
I think that that was what i was worried and upset about the most, that i wouldn't be able to find the money to resit and then as they are core modules that i have to pass to continue with my course, then i would have to leave Uni. As i said, something i don't want really!!
I think i can find the money. And being at home will help with the revision process again as ill be in a more relaxed place. Not somewhere i feel a lot of pressure, etc...
I actually got out the house today as well for like the first time in about a week. Ive been sitting in my garden and things, but I've not ventured past the front door threshold. I went to town this morning with my mum, insisting on completing my hunt for a nice pair of sandals that actually fit my skinny feet! The hunt was successful and i got a pair of black studded gladiator style sandals :D I managed to save £1.30 with my student card as well so it made it all the more a happy occasion! Got myself 3 more reading books for the summer as well, as I've read everything on my bookshelf. Some of them two or three times haha! They were on a 3 for 2 offer as well so saved some money there as well!
The only thing that hindered my good day today was - no not the football! - that when i was in town, and it was starting to heat up a bit more, i got suddenly really tight chested and found it very hard to breath. I had to sit down and use my inhaler and have a drink. Luckily i had one in my bag. Then due to the lack of breath - at least i think that's the reason - i ended up getting a really bad stitch in my side :( It made it hard to breath as well, so me and mum ended up having to get a taxi home instead of a nice walk. Oh well never mind, I'm all grand now! Just part of the heat i think!
Hope every one's enjoying this glorious weather :D
I did as a few people suggested and just thought calmly about the situation, whey up my options, sleep on things a little. I didn't want to rush into a decision i might regret. No matter what my last post suggested. I do love Uni, and i love my course (certain things excluded about that) and i don't really want to leave Uni, unless i got really really very ill and had no choice, or some other situation occurred and i had no choice but to leave.
So i thought and slept and thought some more. I took a look at my results again with a clearer mind and didn't just see the negative side of it all. I did 6 modules and i passed 3 of them, and failed the other three, but only the exam side of them modules. So i did actually pass half my second year!
I worked out the results as well, and to pass on coursework or exams, you need to get 40% + well on one exam i got only 24, but that's only 16 marks from a pass, and most of my question were worth about 8+ points, so really that means i only messed up on two questions! Not bad for a 2 hr exam!
The other two i missed a pass by 7/8 marks, which again each question was worth 8+ marks and so that means i only messed up 1 question on each of them exams!
This made me feel a little more smarter than i had previously felt. It showed me that i was clearly on the right track somewhere along the exam paper line, just not quite there. Plus i have a feeling that i know where i fell down and lost my marks for the exams i missed a pass by 7 or 8 marks on, and so I'm hoping that i just need to really improve them weaknesses and refresh all the other things and i should be better at the exams enough for a pass! I even thought of the point that i might have lost some marks simply because they couldn't read my writing or it didn't make sense!
So i managed to put a positive spin on the negative a little, and I'm pretty happy i managed to do that, as otherwise id still be curled in a ball crying on my bed about what a failure i am, and why do i bother with anything when i always seem to fall flat on myself lol!
I think the sunshine has definitely helped lift my spirits :D Long may it continue!!
So i just need to find £150 to pay for my resits as its £50 a time if the student doesn't have extenuating circumstances accepted or submitted. Which i didn't - that's a very long story and ill tell anyone who really wants to know, as long as they are willing to accept a very long emailed explanation haha!
I think that that was what i was worried and upset about the most, that i wouldn't be able to find the money to resit and then as they are core modules that i have to pass to continue with my course, then i would have to leave Uni. As i said, something i don't want really!!
I think i can find the money. And being at home will help with the revision process again as ill be in a more relaxed place. Not somewhere i feel a lot of pressure, etc...
I actually got out the house today as well for like the first time in about a week. Ive been sitting in my garden and things, but I've not ventured past the front door threshold. I went to town this morning with my mum, insisting on completing my hunt for a nice pair of sandals that actually fit my skinny feet! The hunt was successful and i got a pair of black studded gladiator style sandals :D I managed to save £1.30 with my student card as well so it made it all the more a happy occasion! Got myself 3 more reading books for the summer as well, as I've read everything on my bookshelf. Some of them two or three times haha! They were on a 3 for 2 offer as well so saved some money there as well!
The only thing that hindered my good day today was - no not the football! - that when i was in town, and it was starting to heat up a bit more, i got suddenly really tight chested and found it very hard to breath. I had to sit down and use my inhaler and have a drink. Luckily i had one in my bag. Then due to the lack of breath - at least i think that's the reason - i ended up getting a really bad stitch in my side :( It made it hard to breath as well, so me and mum ended up having to get a taxi home instead of a nice walk. Oh well never mind, I'm all grand now! Just part of the heat i think!
Hope every one's enjoying this glorious weather :D
Wednesday, 19 May 2010
Decisions...
I went to the hospital yesterday to do a gym session with my physio. I also went last week and managed to get to a fast paced walk for 20mins. And i was still able to breathe okay and hold a conversation with the physio. I went yesterday and was knackered and breathless before id barely started! I struggled to make it for 20mins but was adament i would and really pushed myself to make it that long. This time it was just a regular walking pace and i was really breathless and couldnt really hold a conversation with the physio. This sent her into a bit of a worry mode as never seen me like this before i dont think...
I was then asked if i wanted to do a lung function test. I said yes to this and was happy to do one as i was being nieve and telling myself im sure its all in my head, it wont come back as bad as im feeling. Im just tired is all. (Considering id spent the weekend at my mums and rested plenty!) So i did the lung function test and could barely do a long breath out without it sending me into a state of manic coughing (all the while aware i was going red in the face lol) my "calm down" time was a lot longer than should be. Physio went to get the doctor who basically told me in no uncertain terms i need IVs. I had already figured this one out for myself.
She sent me off for a chest xray - which i was annoyed i couldnt see as the system was down bah! - and it made it slightly better that the radiographer was very yummy :p
Then we had a chat and we talked about my results of lung function. I was 66% and ive been feeling rubbish for a while now which is why i had bought my previous appointment forward as i have exams happening atm, and this is what i wanted to avoid entirely. I was put on a colomycin neb, cipro and a salbutamol neb as id never done that before (how much does it make everyone else shake?!) all of which seem to have not done anything at all. I told the dr the cipro wouldnt do anything as it never does. I always drop after being on that! But never listens to me.
My lung function has dropped from that 66% to 48% in about a week as thats how long ive been feeling like this. That clearly is not good at all, hence the battle comencing about IV treatment. I was told that ive lost 1/5th of my lung and dropped about 18/20%. I was also told im pretty much operating as if i only have one lung. This proper freaked me out and i cant stop thinking about that.
My decision is a very tough one for me, maybe a simple one for others reading this i dont know. But ive got to make the decision to do IVs or not by tomorrow. Im reluctant to do them because of my exams happening atm. I dont want to resit them in the summer time, and with the Unis regulations (which are pathetic and dont help the student one fucking bit!) it will be a long time before i know if i can resit them, as if i dont turn up then im not entitled to a resit. How can i turn up if im in hospital!? These facts do not compute for them people!
I know i need to put my health first and i would go on IVs if not for my exams. Ive worked far far too hard - literally blood, sweat, and a lot of tears have gone into getting myself this far - and despite the amount of interuptions ive had from this stupid disease this academic year, im extremely reluctant to let it take away my POSSIBLE passing of exams!
Im missing out on a placement because i know i wont be able to handle the amount of work for it because of everything to do with health. I feel like im daily putting my life on hold for this pathetic disease and i cant control it right now. I want so madly to finish this degree so i can prove to myself and others who have constantly told me i cant do anything that i CAN do something and will make something of my life
But yet i cant make a decision to put my health first. I know i need to and i know that this should be such an easy and quick decision. If i didnt have exams or even didnt have Uni to tend with i would be currently in a hospital bed receiving my IVs... But thats not the case here and this is so hard for me to decide.
I was trying to find my program leader today but hes like trying to find a needle in a haystack really. I also tried to book an appointment to see student advisors about this and some other things and they said to come back tomorrow as they are fully booked until next week. How, if i cant see the people i need to see to help me make a decision am i meant to decide by tomorrow?!?!
I really feel like just giving up right now as whenever i try to do something, CF stands up and says "i cant let you do that, god forbid your happy and healthy!" :'(
I was then asked if i wanted to do a lung function test. I said yes to this and was happy to do one as i was being nieve and telling myself im sure its all in my head, it wont come back as bad as im feeling. Im just tired is all. (Considering id spent the weekend at my mums and rested plenty!) So i did the lung function test and could barely do a long breath out without it sending me into a state of manic coughing (all the while aware i was going red in the face lol) my "calm down" time was a lot longer than should be. Physio went to get the doctor who basically told me in no uncertain terms i need IVs. I had already figured this one out for myself.
She sent me off for a chest xray - which i was annoyed i couldnt see as the system was down bah! - and it made it slightly better that the radiographer was very yummy :p
Then we had a chat and we talked about my results of lung function. I was 66% and ive been feeling rubbish for a while now which is why i had bought my previous appointment forward as i have exams happening atm, and this is what i wanted to avoid entirely. I was put on a colomycin neb, cipro and a salbutamol neb as id never done that before (how much does it make everyone else shake?!) all of which seem to have not done anything at all. I told the dr the cipro wouldnt do anything as it never does. I always drop after being on that! But never listens to me.
My lung function has dropped from that 66% to 48% in about a week as thats how long ive been feeling like this. That clearly is not good at all, hence the battle comencing about IV treatment. I was told that ive lost 1/5th of my lung and dropped about 18/20%. I was also told im pretty much operating as if i only have one lung. This proper freaked me out and i cant stop thinking about that.
My decision is a very tough one for me, maybe a simple one for others reading this i dont know. But ive got to make the decision to do IVs or not by tomorrow. Im reluctant to do them because of my exams happening atm. I dont want to resit them in the summer time, and with the Unis regulations (which are pathetic and dont help the student one fucking bit!) it will be a long time before i know if i can resit them, as if i dont turn up then im not entitled to a resit. How can i turn up if im in hospital!? These facts do not compute for them people!
I know i need to put my health first and i would go on IVs if not for my exams. Ive worked far far too hard - literally blood, sweat, and a lot of tears have gone into getting myself this far - and despite the amount of interuptions ive had from this stupid disease this academic year, im extremely reluctant to let it take away my POSSIBLE passing of exams!
Im missing out on a placement because i know i wont be able to handle the amount of work for it because of everything to do with health. I feel like im daily putting my life on hold for this pathetic disease and i cant control it right now. I want so madly to finish this degree so i can prove to myself and others who have constantly told me i cant do anything that i CAN do something and will make something of my life
But yet i cant make a decision to put my health first. I know i need to and i know that this should be such an easy and quick decision. If i didnt have exams or even didnt have Uni to tend with i would be currently in a hospital bed receiving my IVs... But thats not the case here and this is so hard for me to decide.
I was trying to find my program leader today but hes like trying to find a needle in a haystack really. I also tried to book an appointment to see student advisors about this and some other things and they said to come back tomorrow as they are fully booked until next week. How, if i cant see the people i need to see to help me make a decision am i meant to decide by tomorrow?!?!
I really feel like just giving up right now as whenever i try to do something, CF stands up and says "i cant let you do that, god forbid your happy and healthy!" :'(
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