Sunday, September 10, 2006

Things are tough at the moment. My lung is persistently misbehaving – not only is it refusing to come up, and sitting about 1/3 of the way down in a fairly deflatey and obstinate manner but I am getting slightly more symptomatic, although these symptoms seem to appear at the most unhelpful time such as 8pm at the weekend, so that my consultant has to trek all the way in (which to her credit she does) and then said symptoms seem much reduced again come the morning when all the doctors are there fresh-faced and ready to tackle things in actual daylight.

The bottom line is that 5 days on, there has been no improvement. This means that the only option left will be a drain. the sooner the drain goes in the better, as the longer the lung is down the harder it is to encourage it to reinflate, due to it’s now cardboard like properties as opposed to nice stretchy elastic behaviour that healthy lungs exhibit. They want to hold off putting the drain in overnight or at the weekend as they want the top dog (not sure what their real title is) to do it under CT guidance due to the air pocket’s tricky location, so hopefully we are on hold till tomorrow. Unfortunately due to said persistent naughty behaviour (of lung not me) I am now confined to my room and not allowed to do any exercise (not even allowed to do physio properly!!) to try and keep it as stable as possible. Whilst one might imagine enjoying the freedom of not having to work on lung fitness I am finding this quite unsettling; I am desperate to keep whatever stretch and reserve I have in my lungs and so even 48 hours is not fun as it feels like I am just letting things degenerate, although obviously this is not the case as they are monitoring me carefully and it’s a very short period of time.

When the team came to talk to me this morning, my doctor said that she was very aware I need a life outside these walls. But herein lies the problem – to ensure that this lung “sticks” and does not come down, there are a number of options, the most successful being gluing. The aforementioned however, along with a few others would prove a contraindication to transplant. She asked me outright if I would like this done and explained that many patients by now would be saying “ok enough is enough I need my life back now do what it takes”. So two choices laid at my door, do I chose a “get out of hospital now” card and put an end to my lung collapsing escapades, but on doing that close a potential future portal, or do I ride it out, putting my hopes in the transplant basket as it were? Do I wish I had a crystal ball, and would knowing what the future holds actually make things any easier?

The thing is, it wasn’t really a choice I had to make. The gluing isn’t for me. Knowledge isn’t what makes the future easier for me, but hope does. Transplant is my eventual goal and aim, it is a long term “improvement” which I am fighting for, and when at my worst, hanging on for. Whilst I am fully aware it is a target I might not attain, I need it as a guide light for when things get tough. I don’t want that taken away. The team readily agreed that vetoing gluing is the right option for me, but wanted to ensure they are offering me every possible route. So it looks like we shall be proceeding with a second anterior drain, but my doctor is going to talk through some other possibilities with the transplant team to make my lung stick that little bit more, but to keep the balance so it doesn’t interfere with potential transplant. I have been feeling quite down and scared of this drain, as the previous anterior one was such an unpleasant experience, but have just had a very reassuring chat with a physio (see support work, councillor, they do it all!) about much more attention to pain management and control, so I am going to go into it with the thought that it wont be anything like the last one.

On a lighter note, not only did I manage to get out for a picnic with A yesterday day (which was just gorgeous) before lung started mucking about again, but then my mother came up to stay the night as I was sporting a somewhat pouty face, which she promptly managed to eradicate by bringing a sense of normality back. She arrived in a loud and blustery manner, went searching for a video and came back gleefully clutching “Chitty Chitty Bang Bang” (which as we started watching I realised isn’t quite the seamlessly edited and tightly constructed narrative my childhood memories would have me believe). Sense of normality continued on to this morning, when she woke me up at about 8am “just to check” what time breakfast should be served, in case by some dire misfortune I (and by that she meant she) had been missed out. What would I do without her…


Tasha.x said...

Sorry to hear things arent very good hunni. Hoping things will start to pick up very soon & that ur wee lungs will start to behave! Im hoping & prayin ur call will come asap..Keep fightin little pink one. Lots of love & get well hugs comin ur way x

livvy said...

I wish there was something I could do to guarantee you got those nice new shiny lungs - I'm sure I'm not the only one who feels totally helpless.
Your charms have been ordered - they'll be winging their way to you soon with massive wishes for that call to come soon. XX

lil fairy said...

sweetie am really sorry to hear about your lungs being naughty again! i hope they start to behave themselves very soon tho otherwise i shall be having mean words with them! am really hopeing that your call cimes uber fast sweetie, you so deserve a pair of shiney nu lungs like yesterday!!!
yay for your mummy being very lovely and solving the pouty face and being very lovely in general!
senging lots of love your way sweeite pie xxxxxxxxx

Jac said...

All I can say, is that you are 100% making the right decision here. You know I'm going to rely on you to be the 'old pro' full of wisdom and advice when my time comes. And then of course, we will go shopping and buy lots of bags and shoes. If that doesn't keep you going, I don't know what will ;-)
Many super-sized higs
Jac xxx

Anonymous said...

Sending more and more inflatey, pink, shiny, sparkly thoughts. May that call come very, very soon.
Hugs and more hugs and even more hugs
Oh and Ocean sends slobbery kisses.


Simba said...

:( Awww Angely cake, I'm so sorry to hear that things are being most diffcultist and horrible. You are having to make some yucky yuck yuck decisions but I know you are v good at making the right ones as you are a superstar wise sweetiebobble owl. :)

Lots of love Ms Simba xxxxxxx

Anonymous said...

Sorry to hear your escape plan didn't work out but am sure you have made the right decision on the gluing front. Desperately sorry to hear abut the loss of your friend Mary. Lots of thoughts, love and crossed fingers...Love Kate & Alice

Anonymous said...

Sending huge hugs and much love to "Lucy's Emily". Have been thinking about you a lot today. I do so hope that you get that call. I just wish there was more we could do to help you get them. I feel so helpless.

Take care sweetie

Bev and Lucy xxxx

Sarah Milne said...

Oh Emily, I am so so sorry your lung is misbehaving so much again. It must seem so hard being stuck there. I'm glad Adam and the family are to cheer you up and make things as much fun as possible. I hope the new drain is not too painful. I'll be thinking about you tomorrow. I am praying so hard that your new lungs will be there for you really really soon.
Loads and loads of love
Sarah xxx

Anonymous said...


hurray for mums :D sorry to hear ur lungs misbehaving again, could you please tell ur lungs i said STOP MISBEHAVING AND DO WHAT ITS MEANT TO? :) keeping fingers and toes crossed that you get ur new shiny pink lungs soon, cant think of anyone who deserves them more.

Big hugs and smiley pink thoughts xxx

Anonymous said...

Sending you all kinds of inflating thoughts, Em! Really sorry to hear that things are tough at the moment, and I hope that the drain isn't too nasty. Fingers crossed the top dog can work some magic! Thinking of you, and don't have too many nightmares about the Child Catcher... xxx

Anonymous said...

Hi Em,
So sorry to hear things are not going so well at the moment especially after such a star performance last weekend. Hopefully lungs are just attention seeking after fantastic effort walking 500m and raising so much money for C.F.Maybe a drain, rest and some TLC will 'kick' them back into behaving and infating properly!Hope not too painful - hang in there - thinking of you.
Much Love

Anonymous said...

Bums. Have been scanning Ebay for lungs but only come up with second-hand Elvis records instead. Hope you feel stronger real soon. Of all the lungs in world, why aren't there a pair for you yet? We hope you get out of RB soon and get that call.

Thinking about you always and know how crummy it is to be down and how great it is to have a good day. Hope more good days come back soon (i.e. like, tomorrow). Squeezing your hand over these Internet lines...

p.s. you do know that everyone who comes across you thinks you are the most special person ever and an inspiration to thousands of people. Don't ever forget that when sitting with a bl**dy drain in. Some people with problems sit in a corner. You work tirelessly for all of us despite feeling like sh*t. When the damn thing hurts just think of soon being with A and all the people who love you.

Bill H & Jax

Anonymous said...

Sorry to hear your lungs are misbehaving at the moment, Em, but keep holding on - I'm sure those new lungs will be your soon :) Lots of pink sparkly hugs xxx

Anonymous said...

Dearest Emily,

I know today is a difficult day for you so I have a candle burning here beside me at work. Hang on in there. Remember to use your mind to control your body - refuse to feel any fear, pain or discomfort during the procedures you are enduring and ask for guidance for the doctors helping you. And remember too to refuse this illness, to keep giving thanks for your perfect health. We are all rootin' for you every second of every day so take care and may your day be successful and peaceful.

Lots of love,

Anonymous said...

Dearest Emily,

I am taking a wild guess at some email addresses as I don't have one for you. I know today is a difficult one for you so I have a candle burning here beside me at work. Hang on in there. Remember to use your mind to control your body - refuse to feel any fear, pain or discomfort during the procedures you are enduring and ask for guidance for the doctors helping you. And remember too to refuse this illness, to keep giving thanks for your perfect health. We are all rootin' for you every second of every day so take care and may your day be successful and peaceful.

Lots of love,

Anonymous said...

Hi Em
Really sorry to hear of this setback, but I think you made the right decision-- aim high!

I'm sending extra pink thoughts your way in the hope that your lungs will come soon.

Jen x

Anonymous said...

Poor you, but I think you have made the right decision... I will be thinking about you lots today with all of my things that I can cross, crossed! Think of something really nice or really funny when you are having your drain put in and hopefully it will be over quickly, lots of love from MoOey xx

Anonymous said...

Been reading your blog intently for a while now and I just wanted to say that as long as they are still giving you options, try and hold out for the transplant. After a long fight with CF I got my life changing call 6 months ago and it's been the best decision of my life. Everything has changed for the better and the freedom and relief from the treatment and the fear has been wonderful. I know you are having a really hard time and I'm thinking of you while you wait and battle but your day will come and it will be amazing. You're such an inspiration xxx

Anonymous said...

Thinking of you Emily... & your family too.

Hope you like your e cards sent to cheer you.

Take it'easy' (((hugz)))

Elaine Rach & family xxxx

Anonymous said...

Hi Em,

I am thinking of you today and hope all goes well with the drain and its not too painful for you.

Take care sweetie and I hope you get that transplant call very soon.

Lots of hugs
Lisa xxx

Anonymous said...


just wanted to say i was thinking about you today and everyday hopeing that call comes real soon.

love and pink glitter and pink sparkles and pink snow (?that would be cool)


Anonymous said...

hope today went well procedure wise and your not in too much pain. Sending hugs and hope your call comes very soon.


Jenni said...

Oh huni, I'm sorry to hear that your lung is still misbehaving. If its not careful I might have to put on my 'grown up voice'. I got a lot of practice with it at the nursery during work experience, I can be quite scary if I want to.
I am thinking of you huni, please get well soon.
Loads of luv, big pink sparkly ones,
Jenni xxx

Anonymous said...

Thinking of you my boooootiful Em. Chitty Chitty Bang Bang-Ma Thackeray rocks the most! Its been a bloody awful time but the sparkle hasn't been knocked out of your wings yet my lovely. Tell you what, if we were on the battlefield I'd want you in my corner. Have you considered a career in saving the universe once brand new lungs are in place? You already have your pink, sparkly and devastatingly fabulous costume-if you need a sidekick at all...all my love to you my dear

Anonymous said...

Dear Emily
Keep smiling think how well you & your angels did last week.
Hope things improve very soon,thinking of you.
Much Love
Janet G

Anonymous said...

Huge yay for Mummy Anne! Em, I am shocked at you. How could you criticise Chitty chitty bang bang, it is pure genuis. Toot sweet!
I am sorry that it is so pooey, and your lung is being pants. I hope it all worked out yesterday. I think you made the right decision with the gluing, you are a superpink smiley face! We are all wishing that call through. I'm so sorry to hear about Mary. All of my thoughts are with you Poppet.
Love you lots and lots,