Tuesday, July 27, 2010

Tuesday 27th July

Well I woke up at 6.30am this morning and couldn't get back to sleep so I started thinking again about what I can sing at my mother's 70th that's coming up in a couple of weeks.  I was looking at karaoke songs yesterday and I think I have finally found the one....makes me cry so I reckon my family might need a few hankies ready.


My sleeping continues to be a nuisance.  I'm now off all pain medication and I ache a lot in my sternum but I'd actually rather be aware of it, rather than do a movement and risk putting it out of alignment again!  Now that the pain medication is out of the picture, I'm now blaming my bad sleep on the anti-rejection medication called tacrolimus.  The other anti-rejection medication I have is in the morning so that's why I have been able to narrow it down. Plus I looked up the side affects and sure enough one is "trouble getting to sleep and staying asleep". I'm not too bad with going to sleep, but I'm waking up continuously. It varies a lot but last night for example I woke every hour around 6 times.  Plus I'm still waking up covered in sweat. I'm not having temperatures so my doctor said it's probably the body adjusting to everything. 

Hopefully this will settle down in the up and coming weeks! Days would be better!!

It's during these awake times my brain gets active and starts writing what it wants for the blog. I've always worked like this. Whenever I've had an article to write, I've let it write itself in my head, and then when I'm ready it just seems to flow across the pages very easily.  I had none of this when I was really sick, I had lost my mojo.

I've just paused for a second to listen and feel my beautiful lungs take slow and steady breaths.  They still continue to amaze me as does the whole journey - it's 5 weeks today since my operation.

But moving on....lol.  Well another problem I have with waking up in the middle of the night is feeling hungry when I do so!


The amount of food I have been eating has been absolutely ridiculous. I think mum is pulling her hair out trying to keep me content!! There are 3 things affecting this. Firstly is the prednisolone which is one of my anti-rejection medications but it's also a steroid...and they make you hungry!

Also because my blood sugar is still not yet sorted out, this can also cause you to lose weight, as your body cannot get the energy it needs.  And thirdly as I'm doing a lot more activity, I'm needing more energy.

When I got home I lost a few kilos pretty quickly and am still struggling to get that back on and my tummy just never seems to feel full!!  I ate so much yesterday and I think it's the first day by about 5pm I felt like I couldn't fit anything more in!! I ate 2 pieces of toast with cheese, porridge with banana, 2 vegetarian rice paper rolls, got home and had 2 potato cakes, 4 rices cakes with avocado, almonds and cashews, some chicken twisties - then my beautiful friend Kim brought around a doggy bag with yummy sausage rolls and savoury scones...so I scoffed a scone and THEN I had chicken and rice for dinner and more nuts!!

Hello does this seem a lot of food? LMAO!!! And I bet I'll have hardly put any weight on, it's hilarious!!!!

As a CFer, we are encouraged to have high fat diets.  Like in our lungs, we have mucus in the rest of our organs. That includes the liver and the pancreas.   This is the reason that we have to have digestive enzymes for our food, as the mucus blocks the digestive ducts, with the juices that help break down our food. Some CFers have no digestive enzymes - some do but they are blocked...so either way the digestive enzymes/medication we take is essential.  For this reason also we do not absorb fat as well as other people, even with the help of the enzymes, so we have to eat a lot, and high fat.  Once we start losing lung function, the need for high fat increases as we burn so much energy - the lungs are working harder, the body is working harder - from coughing, normal body functions (such as just breathing) and then of course energy expenditure from activity.

When I was in my 20s I was a lot heavier, and actually had to watch my weight like everyone else....my digestive system was excellent.  Because my lung function was so good, my body did not need energy to compensate.   I still had enzymes though and they worked very well.  For some CFers, enzymes are not enough, so they have to have intravenous food overnight as well as what they eat. They have a permanent little hole in their tummy called a PEG.  A PEG stands for Per cutaneous Endoscopic Gastrostomy, and it is a feeding tube that goes into the stomach directly through the abdominal wall.

I got very ill in 1999 and lost about 8 ks very quickly. That was when my CF became more obvious to people - before then it was just my continuous cough that gave me away.  I never gained all the weight back and from there on had to work hard at putting on weight. When I got pneumonia twice I again lost more weight.  It took me a long time to put weight back on. My goal from there (was 2004) was to try and get back to 60kgs but I have never achieved that!  I generally sat on 57kgs right up until my transplant.

When you getting toward end of stage CF or waiting for transplant, most CFers, well we look awful.  I've seen some girls at CF clinic who look like they are knocking on death's door - very similar to anorexics who are close to dying. Not all of us of course - including myself. Which made it very deceiving to people who didn't know me, as discounting the cough and the breathing (and perhaps the pale face!) it was hard to tell there was anything wrong. 

Anyway, with our high fat diets, we can eat what we like!!  And that includes all things naughty.  Because my weight was stable I didn't have to stuff myself, but the snacks that involved chocolate and other such yummies were so much fun because you didn't get fat from them!

So it's now killing me I can't eat these now!! I was lucky I generally had a very healthy diet so my main meals haven't changed but I'm craving chocolate covered things!!  And nope having a full tummy isn't making the cravings go away!!


My rejection medication called tacro, has a therapeutic level which is different for every person. Even at weeks five my doctor is still trying to sort this out - it's been very tricky! Very similar to my naughty sugar levels!!


I had my checkup yesterday and received the welcome news that on a scale of 0-4 of rejection I have a big fat zero.  As well as pseudomonas from my bronchial tube, I have also a fungus (no mushroom jokes please...haha!!) called aspergillus, so my doc has thrown in another medication to get rid of this.  Whilst my joins are healing well, the aspergillus could cause problems if not treated.

What they look at for signs of rejection, is cells clumping in a particular way, and they establish that from the tissue sample taken during the bronch.  So this way they can detect it, even before you start showing symptoms.

I also got to see my sternum X-ray....like my quiet clicking suggests (as opposed to the enormous clicking I was having on most movements), my sternum is a wee bit out of alignment, but it's OK, my doc says my body will fix that on it's own. The wiring has stayed in place and it is all looking good.

I was also told of the price of the kryptonite last week and it's astronomical!!  I was having my dressings changed and we were talking about the price of them which then led on to the kryptonite...I am very lucky!!!!  I had better not write it here!!


Friday night I had a lovely tea at my sister's.....what a change having a birthday that I felt well at.

I also had a lovely weekend catching up with friends. Ever since I was 14 I've had my high school friends over for a catch up and years later we are still doing it. Unfortunately quite a few couldn't make it due to lurgies! But I'm very grateful they have become astute at knowing when  to stay away!  I giggled at one of my presents being home cooked lasagna....not only did it taste wonderful but it's just such an appropriate thing I need at the moment!! lol

That is all the news for now. Love Genevieve

Birthday gal! (One on the cake for one month old lungs!)...otherwise I turned 35. :)
I ignored the no sugar rule that night! The pav
was soooooo yummy!! Om nom nom nom!!

My gang - James, Mel, Me, Mic, Ivo, Grace and Matty.

Thursday, July 22, 2010

Thursday 22nd of July, 2010

Goodness me, an exciting day!!

When I was out of the loop, one of my dear friends started a facebook group called "Team Genevieve" to keep people updated of my progress whilst in hospital.  And then one very generous man Simon came up with an idea. Kim one of the organisers has now shared me with me some of the scheming email which I'll share here.

"As Gen prepares to leave Hotel de Alfred, we thought we would share a great idea that our mate Simon had. Traditionally when people are sick and unwell, we send flowers or chocolates to brighten their day and speed their recovery. We thought that, rather than adding to Gen’s compost bin that we would try for something that might help a little more.

Thus, it is with great pleasure that we announce the creation of the “Gen Broom Flowers and Chocolates Fund”! Instead of sending her a lovely bunch o’ posies, the idea is to put the money you would have spent into a “pot” (read: specially opened account). Our theory is that if a few of us do this then we might have a nice amount for Gen to then put towards whatever she deems will help her recovery; be it petrol to get in and out of the Alfred, some new running shoes or competition gear for Andy or a big party to say thanks to all of us – whatever her heart desires!

We thought we would give everyone a few weeks to get organized and so have set her birthday (July 23) as a ‘deadline’ of sorts when we can hopefully do a bit of a presentation to the lady."

So it was with shock and a few tears that I was presented with my gift today and have been completely overwhelmed with it. Thankyou to each and every one of you. I am hoping to buy a new jumping saddle (haha!) for Andy, as his old jumping saddle no longer fits and it's time to be updated! So when I start jumping again (!!!) I will be able to think of you all.

I emailed all the people who contributed today, but my apologies if I have missed anyone. Thank you so much again.

It's my birthday tomorrow! Yippee!! My first birthday with my new lungs. I've always looked forward to birthdays - especially considering that each year is a blessing in terms of still BEING HERE, but this birthday will be extra extra special with everything that has happened....what a birthday gift my beautiful donor has given me.  I am wondering how her family is going.  I think of them a lot too. :(

I was also rather overwhelmed (yes again!) when a friend of mine who is riding Andy for me while I'm out of action, told me this.

"By the way, I am organising a Cystic Fibrosis Victoria fund raising day on the 5th of August at my school (Moama Anglican Grammar) – we are having a crazy hair day AND I hope you don’t mind that I got one of the student leaders to read out what you had written on day one of your blog, at assembly. It was great actually because it was the only announcement during assembly that EVERY student listened to – you could have heard a pin drop! Although they did all have a little giggle at the bit where your Mum says “stuff the cow!” I will keep you posted about how it goes and send you some crazy hair pics."

I am absolutely touched by Kate's organising of this, and love that all these kids got to hear my story. Hopefully this might inspire them to become organ donors, or perhaps learn more about CF.

Things have been going fine here. I had my 2nd bronchosopy yesterday and it went smoothly. They found gunk that would be expected at my stage - and I was finally able to stop IV antibiotics after being on them 2 months, and get my PICC pulled out! Yay!!

I am now on inhaled tobramycin (which I couldn't handle with my old lungs, but can with these shiny babies!) and an oral antibiotic.

We are still playing around with my insulin as my sugars are still being a bit naughty. I am eating so healthily too!  I usually did before the LT (you should hear of some of the CF diets - they are SHOCKING!) but I have cut down a lot on my sugars - I don't even have any sugar in my tea anymore!

My exercise tolerance keeps going higher and higher and I'm still loving every minute of it!

I checked with the OT about when I can start driving (at the earliest) and it's about 6 weeks from your operation. I'm already at 4 weeks so only 2 weeks to go! Once I'm driving again, I can then get Andy to come back to his agistment in Melbourne! Yay!  I won't be able to ride him til about the 2 month mark, but I will be able to lunge!!  Might have to get friends to do the poo though, cause of my sternum! Haha, what a pity!!

Visit from Kim J today and the delivery of the best present
since my 30th..hehehe :)

More friends visiting - Jo, Lani, Al and Gen

When I got my PICC out yesterday, I filmed it! I know, eww! But for anyone who has an interest in anything medical, I have uploaded it for you. There is no blood, but all the same, don't watch it if you know you are squeamish. If you don't like medical shows, then you'll know not to watch this!!

Monday, July 19, 2010

My brother Mike and I

I was hardly able to talk at all to Mike when he visited me in ICU, so it was great to see him again and have a proper catchup!! 

Mike is a very cheeky fellow. Every time he visits, he turns all the pictures of my sisters around to the back, and just leaves the pics of us to the front. He waits for me to discover it after he has left. I am onto him now though and usually am able to tell him off before he leaves. You can probably see in the background some of his handy work of frames facing the wrong way!!

He also hopes that my television is dusty so he can draw a face on it. But mum has been doing all the house work so there is no chance of a dusty television!! He is a very naughty boy...lol!!

Thursday, July 15, 2010

Thursday 15th of July - What's been happening since I got home

The days fly by so quickly and I'm enjoying it all now and have been too busy to update!!

It has been wonderful to be home but it also has been very busy.

It's only been since last night that I have finally had an improvement in my sleep. So far I had been waking up every 2 hours because of either/and/or drugs waking me, or from having a night sweat, coughing or pain, and finding it difficult to get back to sleep. Last night I slept til 5am, fell back asleep quickly until my mum woke me up for my IV drugs. Ooooh I could have kept on sleeping!!

It's tricky but I think I have some sort of routine down pat when I am home (which is Tuesday, Thursday and the weekends).  I have IV antibiotic drugs which are 8am, 2pm and 8pm for one and every 36 hours for the other.  The IVs take about 50 minutes to go through, by a special pump that attaches to my PICC line.

I have to check my insulin before and after breakfast, before and after lunch and after tea. I set my mobile alarm to remember to check my insulin two hours after I have eaten breakfast and lunch.  At the moment I do not need insulin at night.  In the morning and at lunch, I give myself an injection with an insulin pen just before I eat.  My blood sugars are slowly starting to stabilise.

After I have done my morning IVs and had a shower, I then do my exercise. I have my own treadmill, fit ball and weights. I can't do weights yet because of my PICC and my healing sternum, but as soon as that is out and the sternum is stronger I will look forward to giving my arms a good workout!!

I do quite a lot of stepping exercises on a step at the gym - I decided I wanted one at home too, so I ordered that yesterday! Loving the retail therapy! 

Lunch quickly rolls around so mum and I have a break. Then it's back onto more IVs. My physio sessions are getting less throughout the day, and the need to cough.  In fact I'm hardly coughing at all now and not much flem..yay! :)

Monday, Wednesdays and Fridays are gym days.  There are pre and post transplant people there, with new hearts and new lungs. There are about 7 or 8 CFers with new lungs.

I feel really sorry for the pre-transplant people. There is a sadness or desperation in their eyes, as they  see us working out. I hope that they are able to transform their feeling into one of hope, thinking that they will hopefully be in the same position down the track. One of the things that turned me off doing pre-transplant gym, was  that very reason. I didn't want to see people working out and looking fit! That was one thing I couldn't turn around to be a hopeful thing for me. Besides I was doing enough exercise at home anyway, and am lucky I have all the equipment I need.  And I was motivated! No matter what!!

Aside from gym, I also have blood tests to monitor one of my anti-rejection meds and my kidney function. While I'm on tobramycin (one of my antibiotics), I have to do a small blood test for that too, which I do myself. I either get the courier to pick it up, or take into the Alfred the next day.

At the moment I also have a LT checkup once a week.  They are happy so far with my progress.

On Wednesdays before gym, I have education talks. Our carers also have compulsory talks to go to, as well as sitting in on ours. Topics covered include nutrition, occupational therapy, medication, rejection and infection, physiotherapy etc.

This week was a patient only session with our LT counsellor, just to have a general chat about anything really!  It's interesting hearing how people are going, how long they were waiting and how they have been affected by it all.

One CF girl was on the dreaded Bi-pap machine 24 hours a day for 6 weeks before her lung transplant. And I was having a whinge after about 4 hours of it!!

Each day I have a district nurse from the Alfred visit to take my obs, check my wound sites and PICC dressing and share any concerns. 

I keep having moments of "wow". From not having to cough half a cup of flem each morning - to being able to get up out of bed straight away.  To feeling tired from lack of sleep, debted sleep and early mornings and healing, and still coping and having energy and remaining upbeat and happy..and very excited! Some nights it's hard to go to sleep, just because I am excited about everything!! Even something like keeping up with mum walking is a great thrill.  She always had to let me walk in front of her, so I could set the pace - a very slow one!! And when I go to hug her, she cannot hear my crackling old lungs and rapid breathing. No noise and nice slow deep breaths to match hers.

I think of my donor daily - and I have started lighting a candle in her honour each morning, in my cute himalayan salt lamp.

I have been using meditation and music to help keep me calm - was especially useful last weekend when I was feeling anxious about having an infection and about my sternum repopping!

On Monday at my checkup when I was waiting, my surgeon who was there for both my LT and my sternum operations, bounced in and asked how my sternum was going. Then he said  - "I had people all over Australia ringing me to ask how you went....you were my guinea pig." 

I'm rather perplexed as I'm about to ask what he means, when my doctor comes and explains that they used this glue call "Kryptonite" as well as wire to redo my sternum...so now I'm being called Supergirl by my friends on facebook when I reported that...even though the Krypto was not so good for Superman!! I think it's hilarious!!!

I had another sing today to see where my voice is sitting. I am a bit wobbly as the voice has more air to play with and my support system (muscles to support the air when you sing, in the abdo area) are quite weak - my breath is the least of my problems now!! It's a wonderful feeling!!  So I've started doing scales to build all this up again!

I have been spending a lot of money getting new gym clothes! I get very hot when I work out so I'm having to buy proper gear to keep me cool. I don't have time to go shopping, so I'm just buying it online - saves energy and also cuts down on the possible germ factor.

On Tuesday 2 separate couriers arrived at the same time....I was laughing my head off as mum had gone off to collect the first one, when the second one arrived!!  I've ordered so many parcels recently, horse and for me, that the couriers would all know me well by now!!

The hospital is always very hot, and I don't imagine they will allow us to use fans to keep cool, because of the germ factor.  Mum thinks it's wonderful that I am spending money on clothes instead of on my horse! Hahaha!!

The gym is very hygienic. Every time we use any of the equipment we have to use an alcohol wipe to debug it.

I'm really loving all the exercise...it's just a brilliant feeling to be doing cardiovascular exercise again and not feel breathless. Just breathless in the right way, the good way. The bad way is working and feeling like you are underwater. It's a really horrible sensation.  I'm lucky that I have always loved exercise and so it is never a chore for me, most especially now!!

My mum as I knew she would be - has been absolutely sensational.  She is a heaven sent angel.

I think that is all the news for now. 

Love me!

I have all the equipment I need set up in my room. I usually work on
the computer when I'm doing IV antis. Gives me the opportunity
to catch up on horse forums, emails and facebook! Plus look at more
things to buy online! hahaha!!

My donor's candle :)

Saturday, July 10, 2010

Day Eighteen - Friday

If pain was under control, LT gang said I might be able to go home still by the end of the week. I put that out of my mind, as I know how quickly things can change!

I woke (well I wasn't really ever asleep!) feeling more like I did before the operation pain wise. I had a bit of coughing during the night and coped with that ok.

LT gang swing by and they are happy for me to go home since my pain is under better control now.  I'm still not counting any chickens......

Pharmacy not long after come by with all my medications for going home.

HITH (hospital in the home) come by so that's when I knew I was on the home stretch!

Got that all sorted (they will visit every day that I'm not coming into the hospital - on the days that I do, swing by their office to check in , and get any more supplies if I need any) and I'm just starting to do a bit of packing and then the surgeons came back.

They redo dressing (ouch!) and I wasn't really happy baring my boobs while two students made ouch noises as well as the tape was ripped off them.

In this time, an IV is going through and the machine keeps beeping at me saying it is occluded. While the surgeon is still doing his thing, I just put the machine on silent. Occlusions (blockages) are usually easily fixed but once the surgeon has left, and I call the nurse to flush it, it will not budge. Another  nurse tries and can't budge it either (usually a little clot of blood)....thankfully one of the CF coordinators happens to be walking by and comes in to say hi and sees I'm having trouble.

In the meantime one of the LT docs comes back and has a sad look and says you won't be going anywhere if that has packed it in. I just nod thinking yep I know! They have to book PICCS in advance so the likelihood of putting another one in the same day is about NIL.

But, after about 10 minutes of fiddling, breakthrough and the PICC is saved...hooray!

It's off to gym and I am not doing the normal workout but doing a study thing for the head physio so that doesn't take long and it doesn't take anything out of me.

Head back and mum is suprised that I have been given my ticket of leave out of the jail! Just have to get my PICC dressing changed and we can go.

Nurse forgets so finally at 3.30 I find her (she said she'd be back at 2 to do it) and 5 minutes later we escape.

Can you understand why hospitals for a patient can get very wearying in every layer of your being??!!

I slept more than I have since the LT surgery last night, but it's still interrupted with coughing and waking up - probably from the medication.

I've juggled the IVs, CF meds, LT meds, oral pain meds, measurement of glucose levels and insulin injections all ok today.  Where do you get a life around all this I wonder!!?  I had a nice workout on the treadmill too and a lovely visit from my sister, niece and my favourite little man aside from Andy....wittle Oscar!!

On Monday will have blood tests, gym, LT follow up appt, and diabetes follow up appt.

Well that is it for now


Day Seventeen - Thursday

I can't remember who came in first - I think the surgeons came in really early to ohhh and ahh over my tiny drain that has kept me company overnight.  They say they'll come again in the afternoon and if it's not draining much then they will take it out. It hasn't been doing much anyway, which is a good sign.

LT gang swing by to see how I'm doing. I'm struggling with my pain and they say the anaesthetics gang will be by shortly to discuss this. They don't want to release me until the pain is under control.

I inwardly roll my eyes as I'm just downing my breakfast (and a student nurse and educational nurse are fluffing around in the background sorting out my medication which is late) and student physio wants to do exercise with me. Just as he starts, the anaesthetics gang turn up. 

I say the pain is worst when I try to cough - hmmm  - "well you need to use the morphine more before the physio comes so your body is ready" - and I say, well aside from gym times, I never know what time the physio is coming. In the end to save me being attached to the morphine machine, and get the medication more regular, they decide to swap me over to oral pain medication.

They leave, back to doing some exercise. They are trying to make small talk, obviously not picking up on any cues that I am distressed and exhausted.

Just finish that and mum arrives, and I'm just telling her all about what's happened so far and the diabetes educator arrives. She is terrific and explains everything very carefully.There is still the hope that once my medication settles and goes lower, that I can stop the insulin.

She leaves and I say to Mum - "You couldn't be dumb going into something like this" - she said I'm glad you can absorb it all, I lost it half way through!!"  Well she is nearly 70, we'll blame it on that Mum!! Haha.

Suddenly I really want to vomit - I start taking deep breaths hoping I don't cause it will muck up all the medication levels! It passes thankfully, and I ask the nurse for some nausea tablets - I had been warned the higher doses of oral pain medication (one in particular) might make me feel sick.

Not long after a nurse comes by with more meds and says something very sympathetic about it being a lot to take in or something along those lines and I get the tears out for the first time!   She said I will make sure no one disturbs you unless they really have to!

After mum leaves I have a rest. The pain is still bad.

LT gang swings by again and since the surgeons haven't been back, give the go ahead to have my drain pulled out.  It doesn't hurt too much for it to be taken out.

By evening my pain is finally starting to abate. 

Sleep is still an interrupted affair with pain medication and IVs throughout the night but at least it's more comfortable.

Day Sixteen - Wednesday

All the nurses and other staff who thought I was going home on Monday keep coming in with sad  faces Tuesday and Wednesday and even Thursday, and I'm like, "It's ok, I'm fine really!!!"

I have been reassured that my sternum needing to be fixed is nothing that I have done (moving, coughing etc) - I've just been unlucky!!

I'm told that I'm second on the list for the operation to fix my sternum, so that will mean I miss gym...excellent!  Yes the physios were still keen for me to go if it didn't clash!! (ie gym in the morning, operation in the afternoon scenario!)....my anaesthetist who saw me the day before thought that was a stupid idea...he said you will be worrying about the operation and you don't need that before your procedure....it's always interesting hearing all their different points of view!

I thought it was ridiculous too but I was prepared either way!  The physios are a very determined group of people! :)

I got to the theatre waiting area about 11am but it was another wait of an hour because they had lost my consent form! You wouldn't want to be panicking! Luckily I was feeling calm like I did before my LT.  I signed another consent form and finally got wheeled into the operation room. They were also starting to wonder what the holdup was.  I had a few more different anaesthetists working with me. Another canula was put in and then I was put to sleep.

I woke up curled up in a protective ball back in recovery. I was in pain and didn't want  to move a muscle!! It took a while for me to become more alert. After about an hour I got back to my room, and my sister, nephew and mum were waiting.

My voice had gone a bit again but once I got back I got a bit more energy and had a good old chin wag.

After they left I was very tired and started to notice how much worse the pain was this time around. Again I counted my blessings about the epidural for I already now had a great appreciation what it had done for my LT pain.  I had a morphine machine that would allow me to inject a small amount of morphine every 5 minutes.

During the night, it played up a lot and its beeping is very loud, my pain was constant and it was hard  to move and I kept jarring my sternum when I did try to move or sit up.

I wanted to cough and I was very noisy in my windpipes but it was too painful to cough.

So overall a very uncomfortable night with relatively no sleep!! Again!!

Wednesday, July 7, 2010

Di and I (30th June)

Please note what T-shirt says...hehehehe!!

Day Fifteen - Tuesday

Today 's bronchoscopy went smoothly.  It was in the morning so I didn't have too much waiting around.  One of the nurses attending to me beforehand told me I looked too well to have Cystic Fibrosis. Is there some special certificate I need to get? Haha!!

After a nice snooze I came around - I was desaturating so back onto the oxygen, but by the time I got back to the ward, after an hour I was back up to 99% on room air....lovely!

The result was that I have a lot of flem still which means I have an infection. This can happen from bugs still lurking in my own bronchial tubes. It is a very common occurrence so hopefully 2 weeks of I's will knock it on its head! Thank goodness for one reason or another, my PICC had not been taken out, so I didn't have to get another one put back in!!

A very rude student doctor bowled her way in just after I got back, demanding a "talk" with me - reacting back I said actually this is not a good time, I have just had a bronchoscopy! She said I am only here today, can I come back about about 3. I said yes whatever!!

What a cow!!! I talked to my nurse and she was appalled !! So said lady got told off and she wasn't allowed to come back to have her chat!! I couldn't believe it.

Mum came a while later so we had a nice few hours together.

I felt very tired after she had left - I gave my 'wary not impressed' look when the student physio came in.  I still had to do a few strengthening exercises so some step up and downs, squats and a few balancing/strengthening exercises.  I really was not in the mood! Haha.

Was planning an early night but no. I had to get MOVED!! I was then extremely cranky because I thought I would be put into a shared room. But no, THANK GOD, I was put into another single room.

They had to do about 15 bed shuffles - it's to do with types of diseases, what bugs we all have - and the shifts happen as old people leave and new people arrive.

So begrudgingly I packed my bags (for the 2nd time, as I had packed Monday morning to go home!!!) and the nurses helped shift everything over. But it's a nicer room with a better view at least!

They had forgotten to do a follow up X-ray for my bronch, so at 11pm my nurse apologetically woke me for that.  It didn't take long - back to bed. Drugs at midnight...then a few hours sleep before being woken at 6am for more oral and IV drugs fitted in before the sternum op.

I'm very lucky that with new lungs, at least I am coping better with lack of sleep. If this was me in the old days, I would be beside myself by now! I am tired, but I am doing ok with it. I'm also coping with fasting better as well. Not feeling so starved each time!

Well I think that is all for now.


Monday, July 5, 2010

Day Fourteen - Monday

Well today was supposed to be the day that I was to go home but it has all changed dramatically.

First of all it was because my insulin levels were still doing naughty things over the weekend, and today doses were to be changed. They did not want to send me home with things changing and therefore possible
problems when I got home.  I would have needed education from the diabetes educators as well - and we weren't sure we could fit that all in today.

On Friday the specialist concerning this did think it would settle over the weekend - so he was very sorry that he had to disappoint me with that news. But that's fine - I felt it sensible to stay another night - I did manage to squeeze in around a 10-15 minute sulk...haha!!

I have already had a practice  this morning jabbing myself and it was fine! Hurts less if I do it! lol.

This still doesn't mean I'm diabetic forever - it still may settle on it's own after the prednisolone doses keep coming down and the body keeps adjusting.

Ok the more major concern is that my sternum has been clicking - when I cough or even if I blow my nose!

I started to notice it early days and hoped it would settle but it's become more frequent.

I mentioned it to my nurse yesterday, and then to the doctors this morning - so had an xray after to check.

About an hour ago had the surgeon come in - and he said this happens to about 5% of patients who are pumping around very early, and coughing and huffing etc. The wires they use to connect the sternum come apart and then can't spring back.

So - this is the shitty part - I have to have an operation to fix it - just the sternum part so they'll go through the same scar. It takes about half an hour. I asked do I have to have drains and he said no you shouldn't - maybe a small one.

They aren't calling it a set back - just a hiccup. I think they may have been anticipating one!! One of my nurses who I've had a lot since being here said I'm the quickest one she has ever seen to recover.

So they all keep apologising to me - bless them - it's disappointing for them but they are really feeling for me.

They are going to do repair this Wednesday.

Since I'll be here still, they are going to do my bronchoscopy tomorrow instead of Thursday, so fasting from breakfast.

Today in gym I did a 20 min walk, 10 min bike ride, 10x2 squats, stretches, ham string push things, quad lift (I can't remember all the names of the equipment - I'm going to be fit fit fit when I finish!!! ) They are already working on my posture too.  Cfers get very hunched over from years of coughing and not being able to  breathe properly. It's nice that I will finally be able to work on this.

They said I could have day leave today- so when mum comes I might get her to take me to Chapel St for some retail therapy!

I'm ok - I'd rather they fix this all up now while I'm still here - rather than discover I have problems when I got home.  Hopefully this will go smoothly.

Just before I had one of the diabetes educators come around to show me how to use the glucose blood monitoring system - signs of having a hypo - etc. There is a lot of new things to get my head around!

Thanks for all your ongoing messages of support, encouragement and love!!

Day Thirteen - Sunday

Pretty cruisy day

I took myself off to gym and did a 30 minute walk. Felt very easy and I gradually kept increasing the speed and also included an incline - unheard for me!!! 

Mum and my niece visited.  Had a nice rest in the afternoon.

Quite uneventful! :)

Saturday, July 3, 2010

Day Twelve - Saturday

What a difference a bit of sleep makes!!

I still wake up to cough, but nothing like it has been.  It is also the first time that I feel comfortable lying down - my breathing finally feels slow and comfortable. I wake about 6am for drugs (pain medication), then sleep in until 8.30am. The nurse did pop in earlier but lets me keep sleeping...

My sleep is also more restful without the vivid dreams (from drugs!)....pain is starting to lessen when I cough and when moving around.  I think even due to the gym workout yesterday, the outside of my chest feels less tight.

My insulin levels are still being tested. The mornings are good, but the evening ones are still going up very high.  So some days are two jabs of insulin, others are one.

I didn't get to shower yesterday, so next priority is that! Just hop out of the shower, and I need to be taken to X-ray of my lungs - being a weekend this doesn't take long.

My dressings get a bit wet, so I get them changed and have a chance to look at my "holes"....they are healing well - the surgery cut is looking fabulous and healing beautifully.

I am finally sounding better too in my lungs - think I might nearly have most of the old flem cleared.

I am eating like a horse and everything takes good - but I haven't put on any weight...hahaha!! I have to be weighed every day, to check I don't put on weight quickly - putting weight on quickly is a sign of fluid buildup  and therefore possible rejection. I'm very curious as to what my weight does in the next few months.

Around lunchtime Mum and Dad arrive.  As a precaution, Dad wears a mask as he still has a bit of congestion in his chest from his cold last week.

It's great to finally catch up!

After mum and dad leave, I go to rest and sleep for 2 hours. It's a really restful sleep and I wake about 5pm feeling so much better for it.

After my nurse checks my insulin  and gives me another jab, (still very high in the afternoon unfortunately!) I take myself to the ward gym and do a half hour walk. I take it up to 4.5kms per hour for the last 10 minutes. I haven't done that speed for probably nearly a year? I stop and I'm barely puffing.

Oh NOW I am starting to really come on  in leaps and bounds!!  I feel very happy walking back to my room...what an amazing feeling!!

I spend the rest of the time catching up on this blog. And I am finally up to date!!

I will get some pain meds at midnight, and get obs, then I'll be free to sleep til 6am for my next drugs.

Day Eleven - Friday

Bloods continue to be taken every morning to test for various things. X-rays are about every 3 days now. 

I assume all is well there, as I haven't heard anything and keep forgetting to ask!!

Physio asks am I cool to go the gym. Good Lord!! Ok I say!

Gym is at 11am, right when I start a drug, so I bring my IV friend with me.  At least it gives me an excuse to not use the stairs!

I do really well. I do 15 min slow walk on the tready, 15 min walk on the bike ( I do hate stationary bikes, so this will be an ongoing pest for me!) , stretches and 10x 2 squats. Staff are concerned that I am already doing more than they are!! Haha.

Jane the LT social worker pops in and admires my arm muscles. She said she had a good feel while she was supporting me getting my epidural in!! I laugh, what a compliment!!

Jane talks about 2 other girls who recently had LTs and one has finished gym and is back riding!!

Lou the head honch LT and heart rehab specialist, says around 2 months I can start riding again! The length of time is due to the sternum healing - it takes a long long time. So even then, it will be gentle walks and get someone else to saddle up and do the weight bearing. Hmmm...is it time for mum to learn how to put a saddle on? Haha!!

My Aunty arrives just as I finish up the hour workout, and we go back to my room for a chat before she has to take off to the airport.

Later on Sue and Mum arrive.  They are liking the new tubeless gal! :)

Sue gives me a gorgeous cuddly unicorn, and Mum has brought a gift from a group of my other sister Jo's friends...a horse with a saddle. Feeling thoroughly spoilt!!.

Cards and other things have started arriving too. I received a particularly beautiful card made by a fellow equeser. I continue to be so touched by the outpouring of love and support EACH and every day.

Sue has brought in my ICU pictures. It's really weird seeing them. I'd seen some briefly on Di's camera but this is the first time I really study them.

I keep looking at them.  I can't believe how far I've come in such a short amount of time!!

An occupational therapist comes in then leaves again, thinking she has the wrong patient because I look so well!!

I'm looking forward to tonight to see how I sleep.

My cuddly toys!!

First bike ride = sore bum!

Gen and Mum

Day Ten - Thursday

The catheter is gone so I'm finally tube free! Only the PICC in my arm left.

Oh the novelty of going to the toilet without tubes!! Haha!!

My Aunty Meg is in Melbourne and stayed at my house last night with Mum and Dianne.

Meg drops Mum at the hospital -  - not long after mum arrives, the physio takes me to the gym to do a 6 min walk. This is to measure how far I can walk in 6 minutes, to get a base idea on where my fitness is at for the following gym sessions starting tomorrow! I also have to give a rating of exertion, and on puff factor. My oxygen saturations remain above 90 so that is a good sign. Anything below 90 is a sign of concern.

I have to do the test twice, and go further the second time.  I do find it difficult to walk - I'm breathing ok but I'm still uncomfortable with all this flem and blood still in the middle. I'm really loud breathing in and out. Fortunately I don't need to stop.

On the way back, he also gets me to climb a flight of stairs!!

One of the "teams" come on their round, and Glenn Westall said I can probably leave hospital on Monday...we all picked ourselves up off the floor...Mum's face was priceless!!

I'm finishing IV antibiotics today and starting oral antis, monitored over the weekend as in the past they have made me feel nauseated. Pain relief is oral.  I have known other LTers to have had a lot of problems with nausea and vomiting due to the medications, so I'm very grateful to have not had that problem. In ICU I chucked once, and for a few days had mild nausea.

If it goes ahead to go home, it will be Physio/gym Monday morning, home to my house, gym at hospital Wednesday, bronchoscopy at hosp Thursday, gym at hospital Friday. And so on for about three months.  Mum is to be my carer during these three months, as well as help from all the siblings! :)

Mum goes to get lunch - so I have a rest. By the time the ladies come back I'm still asleep, so they leave me to it.

I'm anticipating what it will be like to sleep tonight with fewer interruptions.

Day Nine - Wednesday

Overnight the epidural tube had been playing up from about 4am, so once again not a lot of sleep, until it got sorted about 6.30am.  After various discussions within the LT gang and the Anaesthetic gang, they decided the epidural could be removed and I could be switched over to oral pain meds.  From about a week, the LT gang get worried about possible infection from the epidural. But the anaesthetic gang were so happy that the site was still so clean and happy looking. 

While I was waiting for the epidural to be fixed, after about an hour, I could already feel it wearing off, and started to feel a lot of pain.  But it didn't take long to kick in again, once they worked out the problem.

Dianne had her last visit with me today.  She flies back to Canada tomorrow to join her husband on her interrupted holiday!! She will return later to help mum look after me. That will be wonderful!!

I get the ok for the drainage tubes to come out! Yay!! It doesn't hurt, but it's disconcerting seeing these long tubes come out! I have four holes now that up until this point are healing nicely.

My sister Di and Aunty Meg are present for this. Ahh what a lovely feeling getting those out!!  We have a lovely catch up. I haven't seen my aunty for a long time.

I get the epidural out, and swap over to oral meds. There is only one hour in the evening I start feeling really uncomfortable but after a "top up" I feel pretty much the same as I did when on the epidural.

It is lovely to no longer have to do ICE checks and no longer do cough and huff checks for the drains!!

I'm still having intravenous antibiotics as a precaution.

I do some more walking around the ward.  Ahh much easier without the "friends"! Just the catheter "friend" which gets pulled out at midnight. This is because if anything happens, which is usually 12 hours later from when it is taken out, there will be more people around during the day to deal with it, than there would be at night.

I'm starting to get on top of all my forums and facebook and email!!  I have had such wonderful encouragement and support from everywhere.

Day Eight - Tuesday

Mum says

"Today Di and I went in together; Gen wanted us to help her get to the shower because she didn't want the nice young male nurse to see her bottom. The suction tube for the drainage is long enough to reach into the shower, so it's a matter of steering the stand that has all the paraphanalia hanging from it. Mission accomplished, she enjoyed the shower very much. Everything can get wet except the epidural site, so she just had to lean forward to wash her hair.

One of the doctors Glen Westall today said that hopefully the drainage tubes from the lungs could come out tomorrow. They take readings constantly and he said 200 is the magic number - ie no more than 200 in total (mls?) from both lungs. The fluid is in the space between the inner and outer lining of the lungs. I did some googling about it and it is very common after transplantation and usually resolves within nine days.

After the doctor's round Gen felt like a nanna nap so we left and her nurse put a sign on the door. "

Gen says....

Alas my nurse came in while I had the sign on the door to give me some meds, and the physio saw me doing some last minute Facebook update status....so my rest was cancelled and I went on my first walk! With my "friends" of course - and two physios to assist me.

Felt fantastic to do two laps of the ward. I did have to stop to cough, and my wheezing is very noisy. Still a lot of gunk to get up and out.

While I started walking, my sister Jo arrived - perfect timing! So she was able to get a shot of the big moment.  We then settled in for a our first decent chin wag since her ICU visit.

After Jo left I did a long physio session and quite a few throughout the night, whenever the nurses came to do their checks.

First walk!

I still have those nasty looking socks on!!
Physio, Jo and me

Day Six - Sunday

Mum was going to come in today, with technology! I felt ready for some computer action!
But mum woke with a sore throat, and wasn't sure if it was an allergy, or a cold from being around Dad, so she decided to stay away to see what happens.

Niece Steph and sister Sue came in the morning -  was great to have a chat with Sue (I'd already seen Stephy) and talk finally about all that has been happening.

While the girls are there, I get the naso-gastric tube taken out and I was delighted to have it out!  It was really yucky getting it out though!!. Straight away it was easier for me to swallow tablets. Eating was much easier all of a sudden as well. Small pleasures, just awesome!! By Sunday evening, my throat no longer hurts anymore.

After that the central line came out and that was great to have that out as well.

At this stage there is still a fair bit of fluid being drained from the lungs but it is starting to feel a bit more comfortable today to lie down.

Sue says

"The ICU head honcho came in to check on her (they visit all patients who were in ICU to make sure they shouldn't be back there) and he said, Well you are looking pretty good this should be short visit and it was! He had seen Gen a few days previously when she was out of bed and thought this one will be okay. So, all good there."

My sister Sue has a lot to juggle, as her son Christopher also has Cystic Fibrosis, and is having a tune up at the same time as me being in here!  So she is visiting one and the other.

Sister Di visits in the afternoon and we have a good old chatter as well. It's so good to feel chirpy and have the energy to talk again.

I have started to sound wheezy in my chest, due to the old flem gathering the middle. It is still extremely hard to move. My cough is starting to get better. Each time they check my drainage tube holders, I have to huff and cough..this gives them some idea on the nature of how things are draining.

I think it was today too, that at some stage I managed to have a shower, ahhh that felt good!

Before the nasal tube is taken out....

and after!

Niece Stephy, Me and Sister Sue. Sue did a wonderful job keeping
all my Facebook friends up to date with my progress

Day Seven - Monday

Di my sister bought in my laptop today - wow it takes me a while to get through all the messages! I don't get through them all actually!! I'm totally gobsmacked at how much love was pouring around me, particularly from people I didn't know. Was and is, just amazing!!

I *think* ( really hard to remember time frames!) that it's today I have a bit of a sing - I can't go too loud so not full voice - but I can already feel the control and difference in my breathing. I can't even remember now what I sang, but I couldn't stop crying for about 10 minutes afterwards!!   My voice has always stayed strong - but I would take breaths in a phrase that would normally take 3, and overall I just didn't have the energy to sustain "bigger" songs.  I'd want to take my normal singer's breath, and couldn't.  Ahhh to feel such a difference already!!!

My mum turns 70 in August and is having a family party - so I'm hoping I'll be able to sing a few tunes in her honour.

Tom Kotsimbos my main CF doctor says gidday to me on the ward round and various other teams come around dutifully to check up on my progress. Drainage tubes not quite ready yet to come out.

Simon Renn (another transplant patient that we know) is in the room next to me and it's great to finally talk to him. Simon nearly died around the time of his transplant - many people have told me I'm inspiring, but this man is 10 floors above me in inspiration!!!  Leading up to his transplant he was incredibly sick, but he hung in there.

Simon was one of the first CFers I ever came to know, when I started my tune-ups at the Alfred. In the days before the CF ward was renovated, it was four people to a room. So we had shared rooms a fair bit too.

Starting to look a bit better! :)

Photos of ICU

The full works. Still asleep and on the ventilator

Mum and I

Ventilator tube taken out. I look mad but I'm actually in a lot of pain!

The Bi-Pap machine. Yes I am flipping the bird!!

One of my lovely nurses...and well that does look like a greasie, but it's just my exhausted look! That is the Hudson mask.

Day Five - Saturday

Through the hours of the morning I keep looking at the heart and oxygen monitor and feel smug that my oxygen saturations are now 100%. Granted I am still on 3 litres of oxygen, but I'm still feeling pretty chuffed.

I still can't sleep at all as I thought would be the case. Still bug eyed from drugs, uncomfortable in every position and I've now started hallucinating from the drugs! My LT social worker warned me this may happen.  I shut my eyes and see shapes morphing into other things.  The very little sleep I do get, are vivid dreams. I then come to, not even sure I was sleeping.

I have been encouraged by the physios, since sitting in my chair, on how to cough to try and clear the left over Gen flem. This is from the join of my tubes to the new lungs. I have the weakest cough and it hurts to do so.  It's really difficult to know how much force you can put into it. I dutifully do this whenever I feel I might get some success. If there is no one in the room, I hum to create some vibration.

I'm allowed brecky.  Ahhh bliss another cuppa tea!! I've realised how much the gastric feed stuff STINKS. It makes your breath stink as you burp....I will never forget that revolting smell!

By the time Mum arrives Sat am, I am sitting in the chair, brushing my hair! Oh how wonderful to see the beam on her face!!  I have also gone from the Hudson Mask to nasal prongs! Oh the joy at this as well. Sooooo much more comfortable!! I'm breathing ok, I'm not hot, and I'm finally feeling like a good chin wag.

It is GREAT to be BACK!!!

So I start firing all these questions at mum - finally wanting to know details and catch up on all the gossip!!

5 east finally have a bed for me, and around 3.30 in the afternoon I'm taken to a nice room all on my own.

The nurse winds down my oxygen from 3 to 1 litre.  And later I even manage a bit of time off  it without any problems. 

Not long after I am shifted, my BIL Phil and niece Steph come in to visit. Dianne is also there by this stage..it's great to chat and again catch up on all that I have missed out on. I'm still hanging it on them all for having fun while I'm in here. I'm so glad they are having all these wonderful family times.

I'm of course still very sleep deprived, due to the constant monitoring and medications - the monitoring is continuous.  And I'm getting my head around now the various different teams who are looking after me who pop in each day. Surgeons to check my drain tubes, LT gang to check lungs, anaesthetic to check how the epidural is going and how the site is going.  It's difficult to move as I'm still hooked to catheter, 2 drains coming out of my lungs, nasal gastric tube etc!

After my visitors have left, my physio gets me to do some more standing leg exercises, including stepping up and down on a step.

That night I feel like I need some oxygen again, but only on 1/2 litre.

I still can't get comfortable at all - as soon as I find a type of comfortable, I then need to cough. Eventually I give up and sit up.  Despite this I don't care - I feel the worst is over and it's only improvement from now on!

Through the nights I'm checked around every 2-3 hours.  They do an ice test on the front and back of my chest, to make sure the epidural is covering the right areas.  My obs are also taken - my saturations remain happy - as do my temperatures and heart. My heart rate has gone up a lot, due to one of the anti-rejection medications. I'm told this will settle down eventually.

Day Four - Friday

Ahh Friday. Still feeling like shit in every possible way!!

Daily bloods are taken, as well as the score of other things coming in and out of my body.  Daily X-rays are taken of my new lungs.  All appears to be progressing well.

My 2 tubes that are still in are still draining a lot of fluid.

My sister Di and Mike arrive and Mum too - I can't remember at what stage!!

I'm still very very tired and not up to much talking at all.

I just lie there and listen and occasionally try to say something. I'm talking in my head through their conversations or imagining smiling, but I just don't have any more energy than that. I wish I could - I'm annoyed that I can't be more energetic and join in!!  I keep glancing at my hairy legs that I had no chance to shave before I got the call. I had been so dutiful til winter arrived!! HAHA...so all my family have seen my gorgeous hairy legs now!!

I still feel terribly hot. 

They want to shift me to another room - I'm not sure why - but while they prepare the next room, I have to be shifted out to a holding bay.  My view is the helicopter pad, but it doesn't come at all - it's nice to see the clouds outside and the street below. I see a guy walking slowly past having a smoke - I would like to yell at him and tell him he is an idiot...but I just have to imagine it!!

Mike and Di sit with me for a long time, then it's time for Mike to go to the airport.

As I'm wheeled back - one of the nurses is not looking where he is going - only looking at the other side aware of my drains, and the thing that is holding all my wee breaks against the wall...great! But I think he felt more embarrassed than I did.

Finally my "new" room in ICU is ready for me - I love the cool breeze as I'm wheeled back to the room. 

The various teams are happy with my progress, enough that I can go to 5 east now. 5 east is where I have always stayed in the past for CF tune-ups.   However at this time, there aren't enough beds - an ongoing common problem unfortunately! So I have to wait until tomorrow to see if there is a bed.

They continued to remove tubes throughout the day, so there was continual progress in that regard.

A bit later Sue arrives. Around this time, I have to be put back on the dreaded Bi-PAP (Bi-level Positive  Airway Pressure).  I can't control the speed of my breathing as the machine takes over the control of that.

There is no clock that I can see so I have no way to know how long I'm on the damned thing. I think this is the most uncomfortable moment of the whole experience. I'm wringing my hands with frustration and don't know how I can take anymore.

Around on the hour mark, Ranj the physiotherapist comes - and saves my DAY!!!

She wants to get me out of bed. Whilst I'm a bit doubtful about this, I will DO ANYTHING to get out of doing the Bi-PAP!!!  It takes forever for the poor luv to sorts all the tubes and get things in a position that allows me to stand up and walk a bit to a chair.   While she was rearranging the tubing, so that she could get me up, she noticed that one of the saline bags was leaking and there was fluid all over the floor at the back of the bed. They mopped that up and then got me out of bed. I then had to march on the spot. Ranj says something about my good balance and being very strong in the legs and that she normally had to help people with the marching.

I think because I was able to keep walking right up the transplant, it kept me in good form muscle wise...tick! :)

Sue says

"When I left ICU, Gen was sitting in the comfy chair with a glaring look on her face. She said “no” to having a photo taken, so consequently there is no photo of that event! (She had previously asked for photos at all stages)  At this stage one could describe Gen as totally exhausted. She said later though, that getting out of bed was a turning point and that she started to feel a lot better after that. Mum said that after I left Carol thanked Gen for being an "awesome patient".

And that is indeed the case. After sitting in the chair a short while, my oxygen saturations start shooting up!! Hooray!!! And I start instantly feeling like I have some energy! If someone had happened to visit, I think I could have actually talked to them!! Sister Jo and her husband had been planning to visit, but before the other girls left, I had said no more visitors....as I was just too over it.

I sit in the chair for a long time.....I discover that by sitting up, I'm much cooler! Oh the bliss of not feeling hot.

I'm allowed my first light meal - it is porridge, a bit of juice and a cup of tea and icecream!! Nom nom nom!! It's very difficult to eat though - my throat is still very sore from the gastric tube still being in - and I'm finding it difficult to swallow tablets - plus I still have the Hudson mask on!  But eventually I finish and it's the best bloody cup of tea ever!!

So another night of no sleep - I can just tell. But I so don't care! I'm almost euphoric to be off the Bi-PAP machine!!

When the nurses are changing over, I hear them mentioned the Bi-PAP.

I say to the nurse - "I will go for a run around ICU, just please don't put me back on that ****** machine!!"

She laughs and says "No fear Gen, your saturations are wonderful now, you won't be needing it".


Friday, July 2, 2010

Day Three - Thursday

Wednesday flips over to Thursday.

Carol my nurse puts me back on the BiPap much to my disgust -it's in the wee hours of Thurs morning.  She has to leave for her tea break and says I need to be on it for a hour. I look at the clock counting the minutes.

Right on the hour, I ring my buzzer, and the nurse next door pops in. I say time to stop the Bipap - and he says "Oh Gen I think you have to be on this all night" and I literally had a tanty, stamping my legs and say "nooooooooo".  I could see him think ah oh.   "Well Gen you have to wait for your nurse to come back".

Thankfully she did not take long  to come back to me and she lets me stop the BiPap. Ah bliss. Well only for a second - then I focus on all the other uncomfortable pieces of me!!

I'm back to being extremely uncomfortable instead of intensely uncomfortable! lol.

I just keep watching the clock. There is nothing much else to do.  At some point I am able to think of gratitude but a lot of the time I'm focussed on feeling miserable!

I cannot get over how hot I feel all the time.  My breathing feels rotten and worse than I have ever felt previously!

Eventually my family arrives.  I'm totally exhausted by this time. I think it's Di and Mike first in the morning and then at lunchtime Mum comes.  Di had been on holidays in America with Rick but has come over for a week. Mike my brother has to go to Singapore for work on the Saturday, so he is only able to stay for 24 hours. Dad also came down from Bamawm but he had a cold and so was unable to visit. Unreal the timing!! Poor Dad!!

Later Sue arrives and she says,

"I visited in the afternoon and by that stage Gen  was very, very tired as she didn’t get much sleep during the night. ICU is a very noisy place with lots of beeping equipment everywhere. While I was there she had the lines for recording blood pressure and administering nor-adrenaline removed. They were also talking about removing two of the drainage tubes.

She still had quite a bit of fluid on the lungs. She had on a Hudson mask for oxygen, and they also used a Bi-PAP machine at various times to deliver oxygen but it is also used to help shift the fluid.

Overall the Drs were happy with her progress, saying it all fitted in the pattern of a normal recovery.

In the evening we all met up after dinner at Tilly (Tilson Drive) and exchanged stories from the day. It was nice to be together sharing our experiences and thinking how lucky we were that Gen was doing so well. "

Back to Gen...

I respond a bit but mostly I just listen. I had more energy in the morning with Di and Mike. By the time Sue has come I'm just beyond exhaustion!  I can hardly speak because of the tube feeding me and from the other breathing tube hitting my vocal chords on the way out. 

The gang leave. I'm very jealous they are all having these wonderful family gatherings while I'm in ICU! HAHAHA!!

I can't really lie down flat as I desaturate too much. So I'm lying propped up - another reason why I can't sleep - I have never been able to sleep like that!! 

I can't lie to my left side at all as I get too gurgly in that lung (fluid, and also I can feel things rubbing in there!), and can't move to my right because I can't breathe comfortably either.  I just can't get comfortable in any way in body position and my bum is sore.   And once my mind runs through all that, I'm back to being hot! What I wouldn't give to have a fan blowing on me - I fantasise about that for a while.  I figure it's not even worth asking, as you wouldn't want a fan in ICU blowing germs around!!

I  am not allowed to have been eating or drinking anything up until now, just suck on ice. It relieves me for about one second, then I'm back to feeling thirsty. But the ice is also so painful on my throat.  I just can't win!

I don't reckon I'll be able to sleep at all - it's not even worth trying -  so to pass the time I help with emptying my catheter.  Haha! And we tick over to Friday.