Decisions

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.

days like today...

I had a hospital appointment on friday just gone (29th October) and i knew it wasnt going to go well weeks before the date even arrived. Partly my own fault and partly due to the cold weather starting to set in and that always makes me rougher than normal. At my last appointment i had 55% lung function and that was the best it had been since May this year! Hence them being happy and didnt need to see my until 3 months later, which was the 29th Oct appointment. My lung functions now down to 45% and my weight has dropped .6 of a kg... now making me weigh in at about 47kg! Light as a feather.

I had to see a "doctor" i dont like. I say doctor in quote marks as i dont think she is a real CF doc, not like the other one i see. I really dont like her, i find her so patronising and she doesnt listen one bit. Not the best thing to not listen to the patient when surely they are the best ones to know really how they are feeling?!

Anyway i had a right attitude problem with her and with the dietician as thats what happens with me, if i dont like them my attitude comes out loud and clear and im not a pleasant person at all.
Sometimes i feel a bit bad when i know they are just trying to do their jobs, but then when they ask me stupid questions like "so do you have an increased cough?" after ive just told her how bad ive been lately with not doing nebs and things and also seeing that my l.f has dropped a further 10%, i dont feel so bad any more.

The dietician tried to get me to talk to her about having NG feeding tubes. I told her the same as i told her when i was in hospital - no way! - i realise it would help me to gain weight considerably, but i just cant stomach (no pun intended) the thought of a tube being stuck up my nose, down my throat and into my stomach. I cant do it. Especially when my appetite is fine, granted i could do with eating a bit more but im doing the best i can right now with what appetite ive got. The dietician doesnt get that. She asked me if i was okay as i seemed a bit upset. At first i wasnt going to say anything, and then i found myself saying to her that she would be like this as well if she had someone constantly telling me that i need to gain weight! I told her its a lot easier said than done for a CF patient especially! She said she understands but i honestly dont think she does, and shell be giving me the same lecture next time about weight gain. And ill be giving her the same attitude.

So its days like today that really sucks. I feel shattered, even though i slept well, and i woke up coughing to the point where i just couldnt catch my breath. Its always really scary when that happens, feels like you just cant breath again and you'll pass out. Freaks me out. It must not look like a pretty sight for mum either.
Some days i have where im feeling really great, but they seem to be rare lately. Im always waking up during the night now coughing, and sometimes its hard to get comfy enough to get back to sleep. Also knowing that the alarm will go off soon doesnt help either...

This 45% lung function is grating my nerves. I feel crap all the time, no matter if i clear my chest quite well one day. Im shattered just walking up the stairs, which is beyond stupid! I could literally sleep all day right now, and still be shattered beyond belief. I finished Uni today at 1pm, and i got home around 2.45ish. I had to get some meds from the pharmacy but mum ended up going up for me, as would be much quicker. When she was out i fell asleep totally unintentionally on the sofa! I only woke up as i heard the keys in the door.

Im stacked up full now with coursework. Im doing 5 modules - all compulsory so no chance of dropping something - and ive got a piece for each one now. The due dates are fairly well spread out, but thats because they are big pieces of work that require me to do a bit on them each day... this hasnt exactly gone to plan as im totally unmotivated from being shattered all the time and i feel like a bag of crap 24/7. This means im heading a bit into "panic mode" and unless i can catch up im screwed. With the uni im at, its hand in your work on time or fail. Simple as that, no extentions for people who deserve/really need it such as myself. You can hand in an extenuating circumstances form, which basically means they'll go a bit more easy on grading your work coz itll be a bit slack compared to others on the course, but thats about all it does. So pretty much fuck all really. Id honestly rather have my work capped at 40% and be allowed an extention than just have "a leniant marking criteria". It was all grand in the first year as we had a 24 hour window and also a 10 day window and if you handed in extenuating circumstances it was a case of, "okay do the work, and use the 10 day extention window and you'll be fine", ten days doesnt sound an awful lot but for me it was usually the difference between 40% and 80% or something. But they took all that away at the beginning of year 2 as apparently all the other uni's didnt do things like that. Who gives a crap about the other uni's!?!

So its back to the usual "You really need IVs" which is what it was on the 29th, and me replying with "can't. wont. uni work really important, cant afford time off at home on ivs or in hospital on ivs." Them being all moody and giving me the speech of "well we can write you a letter, were just looking out for your best interests health wise".
Which i totally get, they are just doing their job. But this is my future im trying to get a pass for. At this rate ill be surprised if i even graduate! I realise i dont really have a future without my health blah blah.... but with the uni not being helpful when i go on IVs and into hospital, what other choices apart from failing have i got?! And as much as i appreciate the letter writing from the hospital and any other help they offer me, it just doesnt cut it because of the Uni's regulations that do shit all for the students in my position. This isnt primary school where i can have a note written to get me out of P.E. that day/week.

Honestly sometimes i really wish id never bothered with Uni. :(

Anway this is a long post already, and my finger joints are screaming at me more so from typing so much, so ill call it a day...

Update...

I'm, not really sure what this blog is about today, but i feel like i wanted to make an update...

I (hopefully) start back at Uni soon... It all depends on my resit results, which I'm supposed to get around the 17th September! If you don't pass all your resits then you have to attend some silly registration session at the uni to fill out paper work and the letter i got says to arrange to pay your fees.... I'm a bit worried that means they are implying the student loans company wont pay it if you don't pass resits, i need to look into that. If so that puts me in a situation as I've not got £3grand+ !
Well see, I'm sure the loans company would still pay it. I think if i had a sponsorship it would be a different situation.

Mums back at work now :( so its back to being on my own most of the day. I'm a bit concerned I'm going to slip back into that slump i was in 'coz i was so lonely and bored at the beginning of the summer hols, but I'm trying to make sure I've got something to do. I'm working through some more of my PHP text book today.

My next appointment at the hospital isn't until October now :D Ive gone from have an appointment every 2 weeks for ages to not needing one for 2 months!! My last appointment was one of the best I've had probably all year! Its been really crap health wise for me this year, and so to have such a good appointment was the best thing in the world! I actually left the hospital smiling for once instead of ringing mum up in a rage and being all moody.
My lung function had been doing really crap and i was down to the 40's region. 42% was what it had been in an appointment i had on the 6th August and i was booked in again for 2 weeks after that. I really put a lot of effort into getting it up there in those 2 weeks. I was doing physio and nebs twice a day, i was really trying to eat better (which was still very hard and i was on the anti sickness tabs) i was doing everything i could think of doing within the limits of what i felt i could do without collapsing. It worked that well that i ended up gaining 13% in my lung function on the 20th August :D Putting me now at 55% ! I realise this still isn't the most amazing number to have for lung function, but for months of effort not paying off, and being in the 40's region for so long, i pretty much cried when i saw that increase!! Considering i didn't think lung function test had gone that well!!

My weight was down, but as i tried to explain to the mean dietician about the sickness feeling when eating, and how hard it was to even eat a yogurt some days. But she doesn't get it. I hate her even more now, as i was sat in the room i was placed and as it was a bit hot in there i took my hoodie off just before she came in. Now i know my arms aren't exactly the fatest in the world but there was no need for what she said to me. She looked at my arms, and chuckled and said looking right at me, that you could use my arms as an anatomy lesson they are that skinny. I was fuming so much i actually wanted to choke her! It still makes me angry about it now thinking about it. I am really conscious of my arms, and when i was younger would wear baggy jumpers to hide the skinniness of them, it took me years to get the courage to sit outside wearing my vest top and actually showing my arms and collar bones (they really stick out and i hate it). So I'm trying to not let her ridiculously unfair and nasty comment affect me too much, and I've not told the team. i don't know if i will, as it doesn't look like shes eaten anything more than a sugar cube in the last year anyway so i don't see how she has the audacity to sit there and tell me to put cream on my porridge and eat more "filling foods", when she could nearly turn to the side and people might report her missing!!
Argh! I'm thinking of requesting to see another dietician but the other one doesn't seem to be around a great deal, which is a real shame as shes so lovely!

Rant over.

Otherwise i don't think theres much else to report on. Still waiting on the gym to be sorted, last i was told the payment was being sorted out, but that was weeks ago now, and i really want to get to the gym and put more effort in rather than puffing on a neb at my desk while playing solitaire all the time :p So I'm going to ring the physios and see whats happening.

Quick question for the CFers who read this before i go:


How do you sort out your chest when it feels really dry when coughing?
I'm drinking lots of fluids and eating much better as well, but every time i cough i can feel stuff on my chest, but cant shift it properly even with a neb as my chest and throat feels so dry when i cough...

Thanks in advance for any answers :)

Hospital and IVs

So I got my IVs two weeks ago today, and i felt so so much better after just 48hrs!! My energy came back, my appetite picked up, my cough started to die down a little, everything just started getting better! It was like a weight was being slowly lifted off my shoulders, and that's the first time I've ever felt IVs do that... Finally I feel them doing what the team always tell me they are meant to be doing! :D

Ive never been more excited to be able to have a proper shower ha ha! Ive been washing my hair over the bath and its not been a struggle, i was naughty and couldn't stand it any longer and had a shower yesterday 'coz i was itching so much it was driving me insane! But i washed my hair under the shower rather than over the bath and it wasn't a struggle as much as it has been in the past :D I still got out of breath but not as bad, which made me happy.

When i had my mid way appointment my numbers weren't really changed much. My weight was still 49.4KG and my LF was still 47%, but i explained to the nurse that when i went home on the IVs, the Saturday and the Sunday morning i threw up from coughing so much (i was definitely sure it wasn't a reaction) and so it made me very wary to do my Neb's properly if at all, which didn't help with the whole clearance of my chest. They accepted it and understood (thankfully) and wrote it on my notes. Thankfully those were the only days i was sick as after that my coughing started to get easier in the morning and more controllable for me to catch my breath.

I can now sleep at night without waking up coughing all the time, which is bliss :D my energy and appetite is still picking up, for the first time since i moved back home my snacks are diminishing ha ha! Me and mum are doing the food shopping tomorrow so ill get some more things.

I was quite disappointed today when i went for my "end of 2 weeks IVs" appointment. It started off fine, i had a session with the physio to start with and had a go on the NIV machine, (its meant to replicate the BIRD machine, if any ones tried that?). It was okay, I'm not sure of it at the moment, but the machine I used was being a bit temperamental and so the physio is going to look at my next clinic appointment and I'm going to have another go but with a better machine, and then if i get along with it, then shes going to look into getting me one for home. Which will be good, as it did work to an extent as i shifted and loosened a lot on my chest.

After that i had my clinic appointment. Which also started off well, i was in a really good mood. Got weighed, which has gone up to 50.4 from the 49.4KG it was, so that improved my mood even more :D My blood pressure and pulse was down to a more normal rate, which is another improvement as its usually racing way too much. Then came Lung Function. The dooming part of any clinic for me...
It was a little tough as i kept coughing halfway through a breath out :| But i did it all and then got the results and found out its so say dropped from 47% to 44% ! I honestly don't think the results is correct. The physio had listened to my chest and said it was really clear, and usually when my weight goes up, so does the lung function for me.

I think its because i had done all that physio before hand, even though id had a break between sessions, everything was all mixed up on my chest and so of course when i blew out quickly it made me cough and interrupted my breath out. I said to the nurse that it doesn't reflect how i feel at all. Not one single bit, and she spoke with the registrar, and i was given two options, to ideally carry on IVs for another week, or to come off them today and then come back in two weeks. I chose that one. So I'm back on the 6th August to reassess.

So between now and then I've got a lot of work to do, to prove that machine and my lungs wrong :p
But with my new found energy, it'll be easier to do this than before. Plus with no IVs happening i can go swimming :D