Tis the season of giving

Tis the season of giving, and though Hanukkah and Christmas have past,  I hope there is still some giving spirit left in you, because I want to ask you for something, or rather, to do something. I want to ask you and your loved ones to sign up to be an organ donor - if you do in fact want to be one and you have not already signed up.

This may seem like an odd post posted at an odd time, but it's not. See, today I learned that Jess Wales, a lady with CF, got a new pair of lungs in the early hours of this morning in a hospital just a few miles from my flat.  I do not personally know Jess, but I have been following her story for a while now and hearing this good news has made me excited and thoughtful and fidgety. I am excited for her and all the great things that can now and will hopefully happen for in her the future. I am thoughtful because somewhere a family is mourning the loss of a loved one, a person kind enough to give someone else a chance at life upon losing his or hers.  And I am fidgety because I  want to do something to help raise awareness - awareness about organ donation, lack thereof  and a fantastic charity called Live Life Then Give Life.

You should have a look at their site, but here are a few quick facts for you if you don't have time:

• You are more likely to need a transplant than to become a donor.

• Over 8000 people are currently waiting for a transplant.

• Less than 3000 transplants are carried out each year.

• Last year, over 1000 people died whilst waiting for a transplant.

Jess waited 4 years for a transplant. 4 years. I hope you will take a moment to think about what it must be like to wait for something something as basic as a deep breath for 4 years. Then think about the fact that you are more likely to need a transplant then you are to become a donor.  Then read that last fact again.  Then think about this:  90% of the population support organ donation, only 25% are on the organ donor register.


So this holiday season, do something generous and sign up to the donor registry here.  It is a great way to show goodwill towards your fellow man and woman and it's free (a bonus in these trying times!) 

Lovely Liam

Last night my best friend welcomed her first baby and I could not be more excited! Liam Michael Sudderth is a real looker (future stud muffin, no doubt) and the proud owner of two beautiful parents, Britt and Andrew. Congratulations, Liam! Take good care of them.

Liam's arrival has stirred up a lot of emotions in me and has got me thinking.  For starters, Britt and I have been friends since we were little girls and I keep wondering when in the heck we got old enough to be havin' babies. The little girl in me wants to tell the little girl in Britt that I know where babies come from and so I know she has been up to some naughtiness.  Luckily the gown up bit of me prevails, though, and I don't need to say this.

So 10-hour-old Liam has got the grown up in me mulling over some things.  First and foremost, I am really happy for Britt and Andrew.  His arrival has been eagerly anticipated and Britt and Andrew will be great parents.  And the other thing I am thinking - I am so pleased I am here to know of Liam's arrival and I hope I am around for many more years so I can can spoil him rotten.

You see, when I was born the median life expectancy for a person with CF was 18. Thanks to the amazing advances in CF care, this number is now 37 and getting better every year. Liam's arrival has me feeling very thankful that I am long past 18 and am here to know of his existence. But his arrival also has me wanting more. I want to be around to attend his wedding so Britt and and I can have a good laugh about the fact that she is a mother in law and when did we get old enough for that to happen! And  seeing as I don't want Liam to be a child groom, I will keep hoping that the advances in CF care keep coming.

In the sick of it: Home.

I have been back home in London since Saturday afternoon and I literally am in the sick of it! But for once in all my 27 years, it's not me that is ill and for this, and other things, I am thankful.

We got home mid afternoon on Saturday and, in desperate need of a nap, both crashed. We hadn't had much sleep on the plane as a little nipper on our aisle would start winging every time we just feel about feel asleep.  I don't mean to sound bitter about the babbling babe, but I couldn't see that he was upset for any particular reason. I am quite happy for little people to be upset.....so long as there is a reason....

Anyway, after our long naps, Alastair started to complain that he didn't feel well. We went to bed but in the middle of the night he woke as he felt he was going to be sick. He was indeed sick, several times, and he was still making friends with bathroom floor and I was looking on and doing my best to help when the sun started to come up.  Sunday and Monday brought a fever but there was no more cookie tossing. I was pleased about this as I still hadn't finished washing all the sheets and towels that got it the first night. (Life without a dryer. Oy vey!)

I left a stable Alastair last night to see a friend who was leaving London in the morning. Dinner was nice and I enjoyed seeing the Christmas lights on Oxford St. On the bus home I was contemplating life and my return to London when I heard a dreaded noise. You may know it. The splitter splatter noise that vomit makes when it hits the bus floor. I looked over, and in horror, spied a man old enough to know better tossing his Christmas party drinks a few seats away. He threw up eight times and then sat back and closed his eyes like nothing had happened.  As I watched the rivulets of vomit cross the aisle and head towards my new boots, my mind raced.  This was not what I envisioned of my London homecoming. Why am I surrounded by vomit at every turn? Annoying, drunk man ruining public transport. And for gods sake, woman, move before your shoes get it!


I leapt up and lunged towards the front of the bus, careful to avoid the sick streams.  Drunk man also thought it was a god idea to move and crossed the aisle to sit in my vacated seat. He sat there for a moment and acted like nothing much was happening, like he himself was not responsible for him having to move. I gave him a very dirty stare and when he looked at me I told him that he was old enough to know better. In a slightly comical Italian accent he told me he knew it was horrible and he was sorry. "I am so druncccccc," he said, followed by "I am soooreee, I'm ambarassed,"he said over and over again. I told him it was not me he needed to apologise to but to the bus driver. In response, he jumped up and lurched past me towards the front, explaining himself as he went.  He then sat down and proceeded to call a cab and explain that he was very drunk, had been sick and was very embarrassed and please could they send a cab to him even though he didn't know where he was.  He looked confused when the cab company hung up on him.

As I got off the bus and made my way back towards the flat, I again considered my not-so-glorious London return.  The past few days had certainly not gone as I planned.  Playing nurse, piles of laundry, and telling a grown man he was naughty for throwing up on public transport had not been on my London Return to do list. It was then that I realised the universe was reminding me things don't always go as planned and I had much to be thankful for.

I had not planned on Alastair being sick, but in him being sick I was given the opportunity to look after and care for him as he has done for me so many times in the past. I had not planned on washing sheets and towels that had just been washed in my absence, but wasn't I lucky that we had extra sheets and towels to use while the others dried in a warm flat. And wasn't I lucky to be living in a city with good public transport and people being merry. And wasn't I lucky that I had managed to not get vomit on the nice new boots my parents had bought me for Christmas.

So I am home and am in the thick...or sick...of it and trying to be appreciative of all that I am in the middle of.

Snow in Dallas, sun in LA

The saying goes that if you don't like the weather in Texas, wait 15 minutes.  An appropriate saying for today because when I woke up, Dallas was dusted with snow.  It  is pretty weather, but hell on my asthma, so I am glad I am off to warmer weather and blue skies in Los Angeles in a few hours.

On the plane I am gonna try to catch up on some posts so I can tell you all what I have been up to these last few weeks.

Start spreading the news...

I'm leaving today
I want to be a part of it
New York,  New York

OK, I am not actually leaving for NYC today, but I am leaving first thing in the morning.  There has been a lot going on here in Dallas since I arrived and I have been trying to fit in lots of stuff before I leave, which is why I have been silent on the blogging front.

My best bud came over this afternoon and helped me pack and I really enjoyed visiting with her. She neatly folded all my clothes and my bag is so tidy! Usually when I pack it looks like a bomb exploded in my suitcase,  so I feel a little sad that I can't take her with me everywhere I go so that this won't be the case anymore.

Anyway,  my family is off to a CF fundraising event shortly and I am hoping I get to go.  I took some medicine for my stomach earlier but so far it is not having the desired effect but is making me feel like I am gonna talk to Chuck on the big white telephone.  Nice.  And the event is centered all around tasting the food of different Dallas restaurants, so go figure that today of all days I would feel queasy.  I can just picture me trying something and saying, "Oh, this is great!" and then promptly barfing. Because I do, after all, generally have impeccable timing with these things. Fingers crossed this is not the case.  But if I did chuck in the middle of the event, at least I would have some really priceless blog material ; )

Well, gonna keep this brief and say goodbye, but I do promise to try and write about my NYC adventures.

28 Days Later

28 days ago I entered hospital and began IV antibiotics. 28 days later I am pleased to report that this little episode in my life hopefully has come to an end. It's been a bumpy 28 days, but at least I didn't wake up to find Britain decimated by a virus and full of zombies, unlike the poor chap in that movie.  It has been a rough ride mentally and physically, so I am trying to focus on the positives.  Thus, I think it is positively great that I am not dead, undead, or surviving in a city filed with the undead.  Having said that, between the bruising, the awkward and zombie like way I have been holding my arms out (to protect my IV line), the ashen face, the under eye circles and generally poor demeanor, I think it is safe to say that if I came across the undead,  they would likely take me for one of their own.

But enough zombie talk.  I am feeling better chest infection wise. However, and very annoyingly,  my asthma is now playing up and refusing to give up the ghost.  Oh, for those who don't know, I have really nasty asthma on top of CF - a real double whammy!  I am not surprised though because my asthma is always terrible when the weather changes and the weather in London has been all over the place as of late.  I am like one of those old women who can tell it is gonna rain cause her bones hurt.  But instead of achey bones, I get really twitchy airways.  I am a walking human barometer!  So the docs tripled my normal dose of steroids last week but so far it hasn't helped.  Today at my follow up appointment,  I told the doc this and because my airways are still feeling so tight,  we both agreed that doing a spirometry would be pointless.  So he made some changes to my asthma meds and hopefully they will break this cycle soon.  And if the meds don't help, then hopefully a change of scenery and weather will.

And it just so happens that I am headed for the States on Thursday,  so that's lucky.

The jack-o'- lanterns have an important message.

I'm going as a human pin cushion for Halloween, how bout you?

I was released from hospital yesterday to do IVs at home for another four days. Needless to say I was overjoyed to come home. This morning when I woke up there was no drilling, no beeping, and nobody busting into my room. Pure bliss.

And my day was going along just fine until I went to do my afternoon IVs. I hooked myself up to my drip, and within in no time, my arm began to swell at my IV site and the drip got slower and slower until it wasn't dripping at all. I had a mini meltdown and then dragged myself to back up the hospital. I was upset on the bus and wondered if the other passengers thought I was going as a depressed girl for Halloween.

I waited for a bit when I got to hospital and then the doctor came to put my drip in. I knew my vein options were limited, so I gave him permission to use the big vein on the inside of my right wrist, knowing full well that it can be a terribly inconvenient and painful place for an IV. He got it the first time and was pleased the hadn't had to stick me seven times as he had done earlier in the week. He taped me all up and then removed the cap so he could add an extension to the cannula. After he removed the cap and before he could twist on the extension, I began to bleed. The blood trickled under the fresh, clear tape dressing covering the cannula and I momentarily wished I had Halloween plans - the bloody site would have made for a really good Halloween prosthetic. I imagined I was at a party and heard guests saying, "Wow, looks so real!"

I gave myself some of my meds and then had a nurse bandage my hand and wrist. I left and got back on the bus and now am at home. I am doing my best not to use my right hand so as not to irritate the line in my wrist. It kinda looks like my right hand dressed up as a mummy for the holiday. But it's a really crap costume and I am not impressed.You wouldn't be impressed either. Trust me.

So right hand mummy costume is not my thing, guess I will just stick with being a human pin cushion on this night, All Hallows' Eve.

"Despite all my rage I am still just a rat in a cage"

So 1995 The Smashing Pumpkins, so teenage angst, but I am feeling them right now. These lyrics are from their song "Bullet With Butterfly Wings" and I am feeling all bullet right now, all rat in a cage. The last 24 hours I have felt out of control and trapped. Everything that has been annoying me the last week feels as if it has intensified. I am constantly suppressing an urge to hit someone in the face. Worst of all, nothing seems funny right now. I can't find the humour in anything, and this, above all else, is enraging me.

48 hours ago (Tuesday) I was feeling pretty happy. The doc did my spirometry (test that measures lung capacity) and my numbers were going in the right direction. Doc had said I might get out Thursday (today) and I was chuffed at the idea of going home. But as Wednesday wore on and I still hadn't been seen by the consultant,  I started to realise a Thursday departure was not looking likely and my heart began to sink.  And before it could even hit the bottom, horrible, impatient, cranky, rude, mean, negative Ashley, fueled by frustration and exhaustion and hormones, emerged.

Everything was...is.. getting on my, or Evil Ashley's, nerves. Last night it seemed like the noises would never end. Every time the beeping on the ward would stop, an ambulance would start wailing below my window. And when there was no beeping or wailing, I was being tormented by drunks loudly singing military marching songs. I rammed my ear plugs in only to find that I was such a state that I could hear the blood pounding in my ears.

I felt like I was losing it and the only thing I could think to do was cry. Around 1 am I was in the middle of my teary pity party for one when a nurse knocked on my door and came in. Usually I am left alone after my evening dose of antibiotics, so I was infuriated I was being interrupted on the one night I decided to lose it. She asked what was wrong and all I could do was fix her with a cold stare and tell her that I was sick of being here, of being caged, of dealing with it all.  She then asked if I could please raise the shade that covers the glass window in my room's door so that the nurses could observe me in the night. Apparently this new order had only been rolled out that morning for all patients.  Her request went down like a lead ballon. I swear I heard a thud. In between cries and sniffles I rudely informed her that I would not put my blind up because I didn't want people ogling me while I slept... if I should actually ever be able to get to sleep, that is. I  almost never defy medical staff or act rude, but last night I was determined to stand my ground.  I wasn't about to give up the thin shade that protected what little privacy I felt I had left. Knowing it was a battle she would not win, the nurse left. Like my dad always says, there is no arguing with a crazy person.

Unsurprisingly, I was grumpy when I woke this morning.  A trainee nurse, or nurse who doesn't usually work here (am not sure which she was), woke me from my sleep to ask if I had taken my morning meds. I pictured myself jumping up and slapping her for asking me such a question. I can swallow 20 pills in one go, but I have not yet mastered the art of taking my meds while I sleep.  I think I gave her a "really?" look but she didn't notice. She then asked if I had taken my Creon (a medication I only take AFTER I eat) even though she was looking at my untouched breakfast tray. I explained Creon to her and then, with the last bit of restraint I could muster, informed her that I was not feeling myself and for her own safety she should exit my room immediately and not bother me again. She did as she was told but came back in a bit later to ask me the same silly question. I stared at my still untouched food and told her that I had taken my creon.  I shook my head in disbelief as she scribbled on my drug chart and left.

That was 15 hours ago and though I am feeling a little bit better knowing I may get to go home tomorrow, part of me, Evil Ashley, still lurks, still feels like a rat in a cage.  I can see that bad part of me and she is a rat running on a rodent wheel that goes round and round endlessly but goes nowhere. But I am pushing and fighting for Sane Ashley to step up, take control back. And when that part of me, Sane Ashley, shows up she will stop the other half of me running in circles and set me free. I just hope she gets here quick so no one gets hurt in the meantime.

"Attention! This vehicle is under attack. Call 999!"

Yesterday afternoon I was milling about my hospital room when I heard a siren and then an automated voice announce "Attention! This vehicle is under attack. Call 999!" The siren and announcement repeated about five more times over the course of two minutes. Curious, I went to the window to see what was happening. I mean, it must be pretty serious for a vehicle to claim its being "attacked." So I stuck my head out the window and looked for vehicle and attacker. I wasn't sure what I was looking for, but I expected a man with a rocket launcher and half blown away car, at the very least. What did I see when I looked out the window? Nothing. I wasn't able to see the shrieking vehicle, and by the way people were going on about their business, I assume there wasn't a man with a rocket launcher trying to do battle with someone's Merc or Porsche. In fact, from what I could see, no one stopped or even thought about pulling out their phones to call 999 as the car kept instructing them to do. Thus, my suspicions grew and I began to suspect that somewhere, just out of my line of sight, a fancy, overpriced performance car had been shat on by a giant bird and was now squawking about it.

Initially I found this incident entertaining as it made me think about just how useless car alarms are. It seems to me that the louder and more annoying and demanding a car alarm is, the more people ignore it, especially when the vehicle's alarm is claiming to be under attack in broad daylight on a busy street in the Beverly Hills like area of London.

And then I found the whole thing to be annoying. The car was parked near two major hospitals and the last thing patients (including me) inside those hospitals  needed was to be bothered by a car making a hoo ha over some bird poo... But little did I know that my opinion was soon about to change again, and shortly I would be wishing that I had an alarm of my own to scream bloody murder.

My line stopped working and leaked everywhere towards the end of my afternoon dose, so the nurse removed it. Then around 7 pm a doctor arrived to put in a new one. Try after try the poor doctor was not having any luck and commented that I had veins rivaling a cancer patient and referred to me as Crap Veins. I had to laugh and informed him that I had already named myself Patient Crap Veins on on this blog a week earlier.  He then said how I must have a high pain threshold for putting up with all of the sticks and this got me thinking.

Somewhere around stick number six I started to wonder if I was doing myself a disservice by remaining calm stick after stick. Perhaps I was making the doctors feel too comfortable and they weren't feeling pressured enough to get it right the first time.... or second, or third, or fourth time. Then it hit me that I needed an alarm! The alarm could announce, "Attention! This girl is under attack. You with the needle, step away from the patient and call an extra talented,  super professional IV puter-iner!" Anyone know where I can get one of these?

Well, needles to say, last night I was not saved by an alarm demanding an extra professional IV puter-iner, but I was saved by an alarm of another sort - the doc's beeper. It went off after stick number seven so the doctor  left to deal with the problem. Eventually another doctor arrived and got me on his second try, or stick number nine for me.

No rest for the sicked

Most people think you go into hospital to rest up, this is a widely held misconception. The worst place in the world to rest is a hospital. Having stayed in many hospitals, I have learned that hospitals give you a bed, but they aren't really meant for sleeping.  Beds are just for looks really. There are war zones and jumping night clubs that are quieter and have less activity going on than your average hospital. And the hospital may fix whatever problem you came in with, but chances are good that you will leave with a sleep deprivation related mental illness or black under eye circles so bad that you could put a panda to shame.

During the day you can't rest because of the endless stream of people coming in and out of your room. Let me give you a rundown of today, Sunday, a 'quiet' day to illustrate this point. My first visitor barges in a little after 7 am to bring fresh water. Then someone came in to ask what I wanted for breakfast. He leaves and then reenters to bring the requested breakfast foods. Then a nurse came into give me my morning round of IVs. Then the breakfast person came back to ask if I wanted coffee or tea. Then a nurse or nursing student came in to do my observations (blood pressure, oxygen levels and temp). Then someone came in to collect my breakfast tray. Then a cleaner came in. After she cleaned the bathroom, she left and then came back in with more gear to clean the room. Then the nurses came in to change my bedding. Then the coffee/tea lady came in to ask if I wanted a late-morning tea. Then lunch arrived. Then the lunch person came back to ask if I wanted coffer or tea. Then the lunch person came back to collect my tray. Then a nurse came in to take my obs again. Then my friends came to visit me, which was good! Then the nurse came in to give me my afternoon IVs. Then someone came in to ask if I wanted tea or coffee and afternoon snack. Then the nurse came back to unhook me from the IV and flush my line. Then a lady came in to bring me more fresh water. The a nice man came in to ask if I wanted a paper. Then the cleaning lady came back to take out the trash. Then someone brought dinner. Then she came to ask if I wanted coffee or tea. Then Alastair came to hang out. Then the lady came back to collect my dinner tray. Then a lady came into do my obs and ask if I had taken my medicines. Then after an hour or so alone with Alastair, the nurse came in to give me my evening IVs. While the nurse was giving me my IVs another nurse came in to ask her a question.  Then around 11 pm, the assault on my room finally ended.

Oh, and because it is a 'quiet' Sunday, I didn't get visits from the doctor, the physio, the CF nurse, the pharmacist, the phlebotomist or dietician.

And what about a nap between all these visits, I hear you ask. Well, sometimes there is a whole period of 5.7 minutes when someone is not coming in and there is possibility of a micro-nap. I would have happily taken a few micro-naps if it weren't for the drilling that has been going on for the last few days. That's right, drilling. I am not talking about a little bit of drilling noise coming from somewhere far away. The drilling was so loud that I kept half expecting a giant drill bit the size of a small care to come busting through my wall at any moment.

And sleeping at night, well, it's no problem as long as I am not bothered, among other things, by the loud beeping that reverberates through the hallway after some sick person hits their nurse call button instead of dragging their sick selves out of bed and tracking down a nurse. Patients today are so selfish. Geez.

I'd write more, but for some reason I am incredibly tired and seem to be developing a nervous tick....

What the *%&^, how did I get back here???

I am now back in hospital and wondering how in the heck I came to be here. Being admitted was not on my agenda for the day! Twelve hours ago I did treatment, took a shower, ate some lunch, kissed Alastair goodbye and said I would see him in a few hours. I had planned on going to the hospital to have my line changed and then thought I might do some shopping for a friend's birthday present.  But instead of a quick line change and a spot of shopping,  I am now in hospital.  How did this happen?, I keep thinking.

I know it has something to do with last night and my line failing before my evening dose and me leaving a message for CF nurse this morning to inform him of the situation. He called me back a little before 1 pm and said if I felt better then I could just be done with IVs, but if I didn't feel better then I would need to come back to get another line and a few more days of drugs. I picked option 2 as I was feeling better... but not better enough.

I saw the doctor from Monday and one minute he was talking about me doing another day or two of drugs and the next he was talking about admitting me. The change in plan was so quick it made me wonder if I had missed a large chunk of the conversation. He and the other doctors felt that I hadn't improved more because I wasn't getting my antibiotics regularly. No point in me running back and forth constantly every time my line failed, he said. Better to be here so that the problem could be rectified immediately, he said. I think I agreed, albeit hesitantly, thinking I would be saved by the bed shortage I am always hearing about. But no, there was a bed. Lucky me.

Before I headed downstairs, Nurse I Like The Big Obvious Vein came to put a line in. He asked where he had put one in the last time, like he wanted to see his past handiwork. I looked down at my bruised and battered arms and wondered if he maybe had a few screws loose, thought about giving him a look that said: Does it matter? You can't use the same place, ya know? Can't you see the bruises? And none of your lines have been great anyway, you silly twit! I didn't give him this look though and just  examined my arms for possible spots instead. He then proceeded to tell me that his aunt, whom he hadn't spoken to in 12 years,  was a lawyer In Vegas, lived in the States for 11 years and had suddenly tracked him down and called today. He went on for awhile, recounted bits of their conversation and then just sort of stopped in the middle and said nothing further on the matter. I thought about telling him that he didn't really have a future in storytelling.

After some silence I eventually piped up and asked him not to put a line in my hand, which he had been eyeing.  He sighed and looked lovingly at the big, blue veins in my hands and told me that I had the world's sexiest (read: thin and no good for lines) veins. He searched around, stuck me in the arm without success. He explained about me bruising easily, like he was telling me something I didn't already know.  And I now have a line in my left hand.

So I am staring at my left hand that has been rendered useless by the IV and looking at my bags that Alastair packed and brought and I haven't unpacked and still wondering how I got here.  Cause when I left the house this afternoon I had an agenda and I am pretty sure the agenda did not include a long weekend away at Chateau Le Hospital.

48-3

Unfortunately, 48-3 was not the score in the USC vs Notre Dame game on Saturday. (USC did actually win, but I would have been happier if we had beat the Fighting Irish by 45 points instead of 7 points. ) 3 is the number of times I will have had to visit the hospital in 48 hours. Granted, my third visit tomorrow morning is a long standing ENT post-surgery follow up appointment.

Perhaps you read last night's post. If so, you might have gathered that I was a little...... well... frustrated. My line stopped working before my afternoon dose yesterday,  so my in laws dropped me and Alastair off at the hospital on our way back into town.  After waiting an hour, Doctor Young And In Charge came in and got a cannula in on her second try. The line flushed beautifully and she said it was in a deep vein, so she was confident that it might last 48 hours.

We left the hospital around 11 pm  and jumped in a cab to get get home. I immediately went to hook up my meds and was surprised when I couldn't get the line to work. After all, it had just been working 30 minutes ago. I used every trick in the book to make the line work but eventually had to admit defeat. Turns out the line had clotted. Not an unheard of problem, but not that common either.  Not after 30 minutes anyway.

I remained composed for a few minutes while I  considered the ridiculousness of it all but then broke down.  I have had lines fail after a half day, but failing after a half hour, you had to be kidding me! And to think we spent almost 20 quid on a taxi to get home quick. Part of me was waiting for a giant animated salt container to jump out and attack me, try to shake some of its contents into my wounds, both physical and mental.

I am pleased to report that the animated salt container never materialized.

But less than 12 hours after leaving the hospital, I was forced to return there again today. Doctor I Have Been Putting Lines In For 5 Years, whom I had not met before, put in a cannula after two failed long line attempts. He was nice enough and with a wink and a smile said he would be sure to tell Dr Young And In Charge that her line hadn't even lasted 48 minutes, much less hours 48 hours.

Frustrated. Surprised.

I am frustrated. I am surprised. I am frustrated that I am frustrated. I am surprised that I am surprised. I am frustrated that I am surprised. I am surprised that I am frustrated.

So very frustrated....

Damn you veins. Damn you!

Havin' a ball

Modern medicine is cool. Thanks to modern medicine I can easily do my IV antibiotics at home or on the go. The home health care company delivers my medicines pre-made in individual doses, which come in little balls. The balls have some sort of internal compression device so you just hook yourself up and then the ball deflates as the medicine is infused. The balls are small and portable so they are easy to stick in your pocket and go.

They are nifty, but sometimes you feel like a junkie carrying your stash in your pocket. Once I was on IVs when I started a new job and no one ever noticed. I would sneak off to a stall in the bathroom to flush my line and hook up the infusion balls. I was sure at least one of the doctors/scientists I worked with would notice my frequent trips to the bathroom or the plastic tubing running from my jacket sleeve to my pocket,  but they never did.

As much as I love my balls (wow, wouldn't that be so much funnier if I was a dude?), there is one drawback - you can't just whip 'em out and use them at any time.  The drugs need to be kept in the fridge and taken out at least two hours before use so that they can warm up. This is where I get it wrong sometimes, as my memory is not always great, I don't remember to take my drugs out two hours beforehand. Fear not though, there is a solution to this problem.  The answer lies in having a really nice partner who likes sticking things down his or her pants (trousers for you Brits).  Now I don't have any research to prove it, but I suspect that boys make better ball warmers than girls. Boys tend to be warmer and are more used to having random bulges in their pants.

Luckily, I have a kind husband who is willing to help out in an IV ball warming crisis. And you had better believe that I never tire of asking him:  Do you have an IV infusion ball down your pants, or are you just happy to see me?

My Suffering for Success theory takes a hit and the container of vomit

I was stuck five times this afternoon while they tried get a long line in and I cried after the second failed attempt. I have often been stuck several times and remained tear-free, so why the waterworks? Sometimes the back and forth hospital visits and the constant sticking start to wear on me. Sometimes I need a moment to feel that I am just a wee bit cursed. The running commentary from the nurse on just how much my veins suck didn't really help either. 


Also, I couldn't stop thinking about how nice of a day I was having 24 hours earlier. I got to have lunch with my dear friend Olivia, whom I hadn't seen in three years. She always makes me laugh and she's an inspiration. When we were students she wanted to be a writer, and now she is a writer. She is doing what she wants to do even though it is hard at times and, for this reason, I am in awe. Plus, she didn't think my blog was rubbish, and that made me happy. 


I also got a visit from my wonderful friend Pam. Pam is a CF physio and we always have a good giggle when together. I told her that I liked her hair, which had grown out a bit, and she said it was becoming a mullet. It isn't a mullet in any shape or form, but I couldn't help expressing disbelief as to why anyone would choose to have a mullet. "Front for business, back for pleasure," she had said. I thought this was very funny indeed.  She made me laugh several more times and I didn't even feel that distressed when it was pointed out that my arm was swelling at the IV site and clearly needed to come out.


Thus, 24 hours later, as I was getting stabbed repeatedly, I couldn't help but think that this afternoon kinda stunk in comparison to yesterday. I was also starting to realise that my Suffering for Success theory wasn't holding up so well; I was experiencing a fair amount of suffering and very little, if any, success. 


Nurse I Like The BIg Obvious Vein made attempt number five in the big, obvious vein in my right arm. After this try failed, he could see that my "I am hard as nails" act was not coming out to play today and put a cannula in my left arm. Afterwards, the nurse who had made attempts three and four came back and asked if I wanted her to get a doctor to try for long line attempt number six. I thought about it but decided that five stabbings had been enough and it was time to throw in the towel for the day. 


I made my way toward the ground floor, but my day wasn't over quite yet. I needed some blood drawn and so got stabbing number six ... right in the big, obvious vein that had already been stabbed twice less than an hour before. 


As I made towards the exit I was feeling pretty beat up. I know I live in a semi-rough area of London but six stabbings in a day still came as a bit of a shock. And I was feeling a little sorry for myself until I passed by a styrofoam container full of vomit sitting by itself on wall of the cancer hospital (located next to my hospital). I am pretty anti-vomit, mine or otherwise, so it made me kinda want to vomit looking at it, naturally. Still, the random, lonely container of sick struck me as a bit odd. It seemed like the universe was trying to tell me something. I think it was trying to tell me that things could be much worse. Or maybe it was just trying to remind me that random containers of vomit are really gross and the polite thing to do is to take your vomit container with you when you go.

Third time lucky?

My IV failed again last night. My arm was red and puffy above the IV site, so I took it out. I am so NOT surprised. They did only poke me once on Monday, so in keeping with my "I have to suffer for sucess" theory, the line was never going to last long.  I am on my way back to the hospital to have it fixed. Hopefully the line they place will last longer than 48 hours! 

Shades of red

Red is my favourite colour.  I like to wear red clothes and have red nails and when I can be bothered to put it on, I love red lipstick. There are red pillows on our couch and there was even a brief moment when I considered having my bridesmaids where red dresses for my wedding. Luckily, my very wedding-wise friend Nancy pointed out the potential pit falls of this idea.  Reds, she had said, can be notoriously difficult to match, and as my bridesmaids were geographically scattered and picking out their own dresses, there was no way for them to compare purchases and get dresses in the same colour family.  She told me that I didn't want it to look like a red-orange sunset had thrown up on my girlfriends, so the red dress idea died a quick death and all the girls were told to go forth and purchase black dresses. 

So I am sitting here now and pondering the colour red and soon realise that I actually have a love-hate relationship with red. Red may be a great colour to wear and accessorize with, but it is also the colour of blood and tracking (inflammation of vein), two things that are on my mind a lot at the moment.

Lets flashback to yesterday afternoon. I have gone back to the hospital to have my line replaced. The staff have all been warned that I, Patient Crap Veins, am coming.  Immediately I am shown to a bed and quickly have several nurses examining my veins and frowning when they see the bruise on my arm from the long line gone wrong. I tell them that it is much worse than it looks and then wish that it did actually hurt (read yesterday's post to understand why). Nurse I Like The Big Obvious Vein is going to try to put the line in. He keeps eyeing the big, obvious vein that runs down the inside of my arm. I tell him that this vein is a bit of a tease, it looks good but doesn't really put out. It's the one everyone went for in the past and so has been abused over the years. He is determined to try it and I tell him he can as long as he doesn't try to start it in the crook of my arm, because the vein is particularly hard and scarred there from years of use.

He sticks me above the bad area and it doesn't seem like it's going to work because no blood is flashing back, but he continues to route around and then a little it of blood appears. The line goes in but won't advance after a few inches. A valve is in the way. Valves are one of the banes of my life and have sabotaged many a long line. So there I am, watching people try to stick a tube in my arm and making suggestions for getting past the valve. I also mentally note the lack of blood. Then it hits me how strange my life is.  Normal people don't spend a lot of time contemplating their vein valves. And normal people don't wish they were bleeding MORE. To me,  more blood equals more suffering and is a sign that they have hit a really good vein, and so chances are better for the long line lasting. But I am not normal, so I do, in fact, think of and about valves and bleeding. Really I should be a phlebotomist, then  I would get paid for having to think about such things. Or maybe I should be a vampire, which I don't think is a paying gig, but at least my knowledge of good and bad bleeding wouldn't seem so out of place.

Now flash forward to right now.  I am sitting here and looking at my arm and fretting a bit. The gauze covering the hole where the line goes in is soaked with blood and there is tracking on my arm. It concerns me that the bloody gauze is just sitting there festering. And the tracking isn't making me feel better either. It seems to be taunting me. Yesterday afternoon it was just a pinky dot, now it is a red line that is definitely following the path of the vein. Tracking is a sign of irritation, infection, or a failing line and has to be watched. So I watch it. I can report that it keeps getting redder and bigger, despite me giving it the evil eye.

So do I like red? Well, I guess it's all relative. Depends what's red. Depends on the shade.

The IV gods.....

are not smiling favourably upon me this week. My long line from Friday packed up yesterday afternoon. I am not surprised as it was leaking a bit when I infused my drugs the night before. So I am on my way (and running late) to the hospital to have it replaced. And as I sit on the bus, I think that I must have not suffered enough, and thus have  not offered enough "sacrifices" to the IV gods, and this is why my long line stopped working so quickly. Basically,  I reckon Friday was just too easy, so I am paying the price for it now. 

I wonder what could have happened differently on Friday. I wonder if I had stayed in the hospital longer or been stuck more times or had a bigger, blacker, more painful bruise than the big black one I have from the the spot where the line was put in...if I had just suffered a little more than I did and thus made more "sacrafices", would this have been enough for the gods?  Would they be happy and would my line still be working?  I'll never know. But as I get off the bus, a small part of me hopes that I will stub my toe really badly or someone will be unnecessarily rude to me, and that maybe this lit bit of suffering will be a sufficient sacrifice for the gods. And then maybe, just maybe, the new line that gets put in will work longer than a day and a half. 

Kevin Spacey's dog slept on my bed

True story. I kid you not. Kev's dog slept on my bed about a year ago. And when she got tired of the bed, she made herself comfortable on the couch. Tonight the dog (whose name I do actually know, but for some odd reason, feel I shouldn't share it on this blog) moseyed on into the pub where we were eating, and brought Kevin along with her. I decided I should introduce myself to him, seeing as we are neighbours and I did so much for his dog awhile back. 

So I did. I went up to Mr Spacey and introduced myself. I then immediately apologised for interrupting him. (I may not have been born British, but I do my best to behave like a Brit and this requires apologising for anything and everything.) I told him we were neighbours and that his dog really, really loved me. OK, I didn't say the bit about the dog really loving me. I did, however, say I had a cheeky request, and then explained that I was a member of a CF fundraising group and was trying to get together prizes for a raffle, and asked if maybe he could donate some tickets to a show at the Old Vic Theatre (he is the Artistic Director there).

He was very gracious and said that he probably could do something but asked that I write to him at the Old Vic and explain what it was I was doing and what I needed. I told him that I would be more than happy to write to him and asked if I would find an email address on the Old Vic info page. He kindly explained that he wanted me to write him a real letter, like they did in the olden days. I did my best to not look really embarrassed and said I would indeed send him a real letter.

I then said hello to the dog and then told Mr Spacey that she had slept on my bed. The guy sitting with Mr Spacey said, "she's a real tramp like that," and we all had a good chuckle.

I apologised again and thanked him again for letting me interrupt him, and then tried to swagger back to my table in a way that suggested I was calm and often chatted to movie stars and that my heart was definitely not about to explode out of my chest with nerves.

Here's to hoping that I write a really good letter.

Day 3.5 - How to get early parole and Fight Club

When I wake on day 3, I am keenly aware that it is Friday and tomorrow will be Saturday and the day after that will be Sunday. The weekend. Because I have spent a lot of time and a lot of weekends in the hospital, I know that if I am not paroled on Friday, then I will not be able to make my getaway till Monday. Certain wards in hospitals have a shell staff at the weekend, and because of this, the appropriate wardens are not always around to approve and manage an early release. Now, let me tell you how to have really, really boring weekend. Be ill, but not too ill as to require constant attention, and be in the hospital. Illness isn't really interested in the work week and office hours and the weekend; health care professionals, on the other hand, are. I know that remaining in custody over the weekend means that nothing much will happen medically speaking and that I will be very, very bored. I don't want to be very bored and I want to go home. I love my husband and I love my bed and I want to be reunited with both. Plus, I never really thought I should be admitted in the first place. So I set my sights on getting early parole.

This is how the day went down and I managed to get early release....

Dr Young And In Charge comes to see me around 10 am. I make sure to look and act peppy. Experience has taught me that looking and acting peppy is key. She asks me how I am and in one breath I say, "Good, my appetite is much better, a very important sign with me, I ate three meals yesterday and, please, may I go home?" I also remind her that nothing much happens on the weekend and that this is a very busy time for the ward and that someone else probably needs the bed more than me. She asks me some other questions and tells me that my desire to go home has been noted and that she will need to speak to the other (more senior) doctors. I am confident I have made a good case for early release, but tell myself not to get my hopes up.

Mrs Bossy Physio arrives and brings me some new breathing kit to try out. I try the new equipment and practice my breathing techniques. Eventually she says she has to go as she is leaving at 12. I keep my fingers crossed that she will leave before she has a chance to say anything to the doctor about me staying.

A little bit later, Nurse Thumbs Up comes in and tells me that I need to go downstairs for bloods. I need a Tobramycin level (checks how much of the antibiotic is in the blood) and some other tests. I tell her I will go down stairs shortly and start to change my clothes. Ten seconds later she pops back in and says, "Tanks ver being copverative," (she is not from England but I can't place her accent) and she is grinning at me like a mad woman and is giving me a thumbs up before she quickly disappears. I wonder what the heck she means. As a rule, I am and always have been a very compliant and well mannered patient, so I can't understand why she has made such a comment. I think of asking her to explain, but then I picture her grinning and giving me the thumbs up and decide I'll leave it.

After I get my bloods done it is time for lunch. I get fish and chips... and one packet of ketchup. I eat it but am hankering after some more ketchup all the while. Nurse Really Pregnant comes into give me my afternoon dose of IVs, but she says she will come back when she sees me eating. I finish eating and make for the shower. I shower and then dress and decide I will blow dry my hair. Alastair brought my hair dryer the day before and I know I will feel better if I can contain and control the disaster on my head that was formerly known as my hair. I am half way through drying it when Dr Young And In Charge comes in.

She says she came earlier to give me the good news but that I was not around. I am surprised because I had not heard from her in several hours and took this to mean that I was not going home. She says the docs have agreed I can go home but that several things need to happen first. I need a nurse to asses my IV giving skills. They can't and won't send you home until they know that you are capable of being a responsible drug dealer and user. Also the pharmacy needs time to get together the drugs that will tide me over until the home healthcare company can deliver my drugs tomorrow. And finally, I need to have a long line (a more substantial IV line that can last for a few weeks) placed as the cannula currently in my arm is starting to fail.

She disappears for a while and then comes back with a long line kit. She examines my arms extensively for good veins while I sit there and think about my half dried hair. The styled side looks alright but the other side looks as if it has been caught in a tornado. I think I must look slightly ridiculous. She is still looking for a good vein when I start trying to point out veins that have worked in the past. Nothing I point out pleases her. The ones I suggest are to wiggly or shallow or thin. She tells me that she considered my veins extensively last night while she was having sushi. Apparently my veins are misleading. They look good, but are not actually any good. Oh how I love it when people tell me things I already know. But she finally finds one and has a go. There is blood everywhere and I am filled with glee that it is not my pillow from home under my arm. It looks like a small massacre has taken place, but the line seems to be working and for this I am very thankful. Often I am stuck three, four, or five times before they get one to work. One time in A&E (ER) I was stuck eight times and they tried veins in my legs before they got a working line. All this makes one stick and a lot of blood seem like child's play. The doctor cleans me up and tells me that it is lucky I have not had my afternoon dose yet because I can get it now and a nurse can assess me and my skills as an injecting drug user before sending me home.

I then sit and wait for a nurse. No nurse comes. I go to the Nurses' Station and tell Nurse Thumbs Up that I am going to pop down stairs briefly but I will be back soon and can get my drugs then. When I return I wave to her to let her know that I am back. I sit in my room and wait for her. I wait a long time. I go back out into the hall and give Nurse Thumbs UP a perplexed "what is happening" look. Nurse Thumbs Up starts talking to Nurse Really Pregnant and then the next thing I know the two of them are arguing. I am a good twenty feet away when all this starts and I just watch them for a minute and think that you can't make this kinda stuff up. I decide I don't really want to deal with this drama so I go back to my room. I assume that the loser will appear shortly and give me my drugs. Nobody comes. Eventually Dr Young And In Charge comes in and tells me that the nurses seem to be having some issues so she will quickly fill out and sign the assessment form. We go through the form and then she says she is off to sort the nurses and someone should be with me shortly. Now I know this will come as a shock, but nobody comes. In the meantime, Alastair has arrived to take me home and I am starting to be both annoyed and worried I am not gonna get home. It is 5 pm and my afternoon drugs are several hours overdo and I am annoyed the Alastair is having to sit around and wait for me. 

I once again go in search of a nurse and find Nurse Thumbs Up and Nurse Really Pregnant arguing a few doors down from my room in the middle of the hallway. I stand there for a good minute and keep looking back and forth and wait for one of them to acknowledge me. This doesn't happen so I go to the Nurses' Station and start asking another nurse if she could please maybe get me my drugs because my two nurses are just standing in the hallway arguing over who was meant to be giving me my drugs. The nurse is confused, understandably, and picks up the phone and calls to ask if someone knows where Nurse Thumbs Up is. I tell her I know where she is. She is around the corner arguing with Nurse Really Pregnant. I decide to try and find Dr Young And In Charge and head down to the other side of the ward to find her. These Nurses can't find her but ask if maybe they can help. I try to explain the situation to them but am called back to the room before they have a chance to understand.

Eventually Nurse Really Pregnant comes and gives me my IVs. I am looking out the window and say "what a horrible day" because it is grey and pissing it down outside. She misunderstands me and launches into a tirade about what has happened. I think she is upset with Nurse Thumbs Up but apparently she is upset with Dr Young And In Charge. This comes as a bit of a shock but I try to make the appropriate noises at the right moments to assuage her, but my mind is on the task of going home.

I do get home....

And this, my friends, is how you get paroled early.

Day 2 - The fear, isolation ends and green goo

I have many fears, many irrational, and some very silly. For instance, I have a fear of grammatical errors and typos. Rather, I have a fear of making grammatical errors and typos and having other people see them. This fear has kept me from writing this blog for a long time. Today has been a scary day, because once I give some of my friends and family the URL for this blog, I start noticing my errors. Shock horror. My stomach is still turning.

I have been afraid to start a blog for another reason. You see, I tend to be at my funniest when things are going wrong. It has something to do with having a dark sense of humour. I got this courtesy of my dad. With this in mind, my thinking goes like this: I start blog in the hospital and people actually start reading it -> I feel pressure to keep people entertained with interesting material -> I tempt fate and inadvertently invite bad things to happen to me so that I can keep the material and laughs coming. I know all you psychologists out there are loving this and your insides are screaming "hello coping mechanism and self fulfilling prophecy!"

I am not sure how this is all going to work seeing as I am still in hospital and this is only my third post, but I am trying to defy my odd and long held beliefs and believe that I can find humour in a day in which nothing has gone terribly wrong. So here is my day, or the important bits, anyway.

Around 8 am Mr Breakfast Man is sticks his head through the door and asks what I want. I sit up and by the look on his face I know my hair has that crazy bed head look . Some people have sexy bed head. And then there is me. Hair going here, there any everywhere. It always looks like I have tried to pull off a cool Punk rock do but have ended up with a hairstyle that screams a blind hairdresser with a passion for Texas Big Hair circa 1980 has done my hair instead.

I quickly eat my breakfast and think of falling back asleep. I lay my head down but sleep is tricky with all the people coming in and out of my room and the jack hammer going off outside in the street below. A jack hammer, go figure.

The morning passes quickly and a little before lunch I am visited by Darth Vader's daughter. Before entering, Darth Vader's daughter spent a very long time outside the room getting ready to come in. She enters and then I see that she obviously has a part-time job with HAZMAT. She has on something that very much resembles a gas mask. I am very confused because I don't know the person under all the gear and I immediately start thinking crazy thoughts. First, I think she must be here to decontaminate me, although I am not sure exactly what I am contaminated with, besides a number of bugs in my lungs, and I can't really see what she is going to do about it. My next thought is that she is here to do my Swine flu test. The doctor told me the night before that this involves sticking a small tube up my nose and that it is uncomfortable, but not painful. A bit like "getting water up your nose," she said. So I think maybe she is a big liar and Mrs Hazmat Vader has come to pin me down and pump so much stuff up my nose that it is necessary for her to be in full protective gear. Note: Until this point I had always thought that I had a very poor imagination, but I guess I was wrong.

Turns out Mrs Hazmat Vader is really Mrs Bossy Physiotherapist. She sits down and apologises for all the gear. She tells me that it is necessary. I suppose she needs a heftier mask than most as she has come to make me cough up green goo, and this a very germy job, but I am not sure. Then the doctor from the night before enters. She has on no isolation gear. She says that all the doctors have talked and, because I have not run a fever since arriving, agreed that I no longer need to be in isolation. She tells me that if I had had Swine flu or some other form of flu that I am obviously at the tail end of it and that anti-virals would do me no good and I am no longer a contamination threat. So happy Get Out of Isolation day to me! I agree that this is a good choice, especially as I am sure I never had flu of any sort to begin with and all this isolation stuff has been a little over dramatic. Meanwhile, you know Mrs Bossy Physio sitting there in her HAZMAT gear is thinking, "And you couldn't have told me this ten minutes ago?!" Life is all about timing, right?

After all the HAZMAT gear has been removed, Mrs Bossy Physio starts discussing action plans for me. I can't stop wondering why she is here because I am very capable of doing my own physio and the other physios know this. She tells me that they have told her this but she wants to see if she can help me "optimize." She wants to watch me do physio but fortunately it is a bad time for me and for her so she disappears for a bit. She comes back later but I am saved by lunch.

Early afternoon has arrived and my friend Camilla has come for a visit. She is my first non Alastair visitor and I am thrilled, especially as she has brought candy (and some pineapple also so as not to be accused of giving me all junk). We are having a great time chatting away when Mrs Bossy Physio reappears. I have told Camilla of my efforts to shake her and, like a trooper, Camilla does her best to act as a road block. Mrs Physio says she will come back in half an hour.

True to her word, she comes back and poor Camilla is shuffled off to the guest room while I have my physio session. This session revolves around me breathing into my pep mask (the mask gives resistance when you breathe into it, forcing air back into your lungs and helping to open the airways) and then doing some breathing techniques to try to shift all the gunk. And I am a gunk producing machine. I am, after all, in the hospital for a chest infection. So within no time I have filled a sputum pot with lung snot. (CF is really not a sexy disease. You spend your whole day spitting out nasty phlegm, and when in the hospital, they have you spit it into a pot so it can be examined. Nice.) Towards the end of the session she starts discussing alternative devices for use. I concede that a new device could be good and that a visit with Mrs Bossy Physio may have not been totally pointless. But then she goes and says something about this all being useful and us trying some stuff next week. I scowl (maybe just on the inside, I am not sure) and decide upon the name Mrs Bossy Physio right about now.

You see, I am convinced that I should be sent home. I can do and have done IVs at home, and as I don't have flu or fever, I think home is sounding better and better and more likely. I am sure I have a strong case for going home but know my plans will be ruined if Mrs Bossy Physio starts telling the doctors that there is work to be done with me.

And then Alastair shows up (just in time to save me from more physio) and Mrs Bossy Physio says something about "my boyfriend" being here. I think something to myself along the lines of, yeah, you can be my boyfriend, you handsome thing, you. Grrr. (I am still madly in love with Alastair and so am prone to thinking things like this, especially when bored in hospital.) The room is small and filled with a lot of stuff , so everyone is trying to shuffle around stuff and each other when it happens......*Cue the dhun, dunt, dun music*.....

Mrs Bossy Physio knocks my bedside table and sends the sputum pot from earlier flying. This is one of those moments. ...You know what I mean. You know that moment that is always played back in slow motion when you remember it? A moment that if there was a movie of your life, then this moment would be a scene in it. A moment that seems to be a metaphor for your life. Yeah, it was one of those.

So phlegm pot crashes to floor and the green goo spills out all over the floor. More like oozes out really. Green goo, after all, is goo, so it doesn't really spill but definitely oozes. Dis...gus...ting....
Mrs Bossy Physio looks shocked and immediately starts flapping about trying to clean it up and making her apologies while saying "this has never happened before." For those of you who know me well, you know I would be a rich girl if I had a dollar for every time someone has said "this has never happened before" in a situation that involved me.

Mrs Bossy Physio is obviously flustered and Alastair and I are watching her with mixed looks of pity and amusement. Alastair, sweet guy that he is, tells her not to worry and that usually he is the poor sod who is having to clean up green goo mess. I am not sure this makes her feel better, but it was nice of him to say. Unfortunately, it is true, he is usually the one who (if not me) cleans up any mess I have made during a coughing fit.

Anyway, I think I am starting to feel bad for Mrs Bossy Physio, all caught up in an event that shall henceforth be known as "The Green Goo Incident," but then I remember that she, rightly or wrongly, may be the one thing standing in the way of me going home sooner rather than later and I start to feel not so bad for her. In fact, I start thinking about giving her a piece of my mind and maybe spitting a big loogie in her eye and telling her that she needs to reconsider her position on what I do or do not need in the next few days.

But in reality, I say nothing and there is no loogie spitting. She promises to come back tomorrow and I turn to Alastair and start catching up with him.

And then the day carried on and became night and I waited for day 3 to begin.

Day 1 - Isolation (kinda)

Today was my first time to be admitted to hospital in awhile. It's been over a year since I last had the pleasure (or punishment?) of being a guest on Foulis Ward, a place that I have been way too familiar with at times. Admittance day is not always pleasant. There is a lot of boring stuff to be done- bloods, x-rays, lung function tests, etc- and you spend your whole day answering the same questions over and over. What are your symptoms? How do you feel? And my personal favorite, Have you had a bowel movement today?, and then a number of further questions on this topic. Nothing like talking poo to someone who may have been a complete stranger two minutes ago to make the day interesting.... I could say a lot of rude things on this matter and make some horrifically bad jokes, but I'll spare you. This is only the first paragraph of my second post and it seems silly to offend potential readers so early on.

So day 1, in semi-isolation, is over. Here is a recap.

I pack up all my stuff (machines, meds, clothes) that my poor husband has just unpacked from Japan and catch a ride with my mother in law (thanks, Liz!) to the hospital. We get there and have to stand outside the building. I am not allowed to enter in the usual way as the docs have got it in their heads that I may have swine flu. I have been told to call a mobile number when I am outside. I call said number and am told to wait. I feel like a secret agent waiting for my mission. A nurse comes and brings me a mask, which I am to put on before I can go in. I mask up and feel slightly ridiculous. I clearly do not have flu, but understand that the hospital must take the proper precautions. I enter and people look. At least I feel like they are looking at me. I imagine that they see me as germy WMD that could blow at any moment, spewing germy grossness everywhere.

I get to my room, a small side one at the end of the hall. It has been a long time since I have been on this side of the ward. I am not overly fond of this side for a few reasons, which I'll save for another post. There is a sign on my door telling people that they must be suited and booted (gloves, mask, gown) before they can enter my room. These are the rules of isolation. If I did indeed have the flu, then I would be fine will all of this. But I don't. Anyone with a working pair of eyes can tell that I am not a host for that flu that goes by the name of Swine. Still, everyone that wants to enter must follow these procedures. It must be maddening getting all dressed up just to pop in.

I sit and hear the usual hospital sounds of trolleys and IV poles being wheeled to and fro, nurses coming and going, the beep, beep, beep that calls a nurse to a patient's room. The endless beeping, how I loathe it.

Eventually, I get my first guest, a student nurse. She fusses about outside for a long while before entering, and when she does, she reminds me of something out of a cartoon. She has a mask on, but it is loose and hanging strangely, so I can't see that it is doing any good. The gloves are too big for her and the gown looks odd. This disheveled appearance makes her look like a child dressed up in a nurses outfit, despite that fact that she looks to be over 40. Halloween is not far away, I think. She could be all set with a costume. I can't say this though, because that would be rude.

My feelings about student nurses? Mixed. Everyone must start somewhere; I know this. But the admission process is bad enough, and having to carry a nurse through it all because you know way more, can get very old very fast. Her first question is, "Do you have CF?" This is a fair question but it irks me for some reason and I think, yeah, duh. Question two is, have you been here before (the hospital)? I say "yes" and realise I can't say how many times because I have lost track. I then think that someone should have given this woman my notes, then she wouldn't have to ask me these questions. It's not her fault, but I am a bit cranky and prone to shooting the messenger when in a mood.

She then spends a lot of time talking about not liking the gloves and how hard it is to work with them and how it seems silly to wear them as she will just wash her hands afterward while she fuses with the admission booklet. We make our way through the questions. She then takes my vital signs. She fails in her first attempt to take my temperature in my ear and then doesn't really have it fully in my ear on the second go. She says my temperature is such and such and I think there are ice cubes that are warmer. But the temperature on the outside of my ear is probably not very warm and this is where she has taken it from, so I think it makes sense and can't be bothered to correct her.

She then asks me a few more questions and before I know it she is telling me about life with CF. She is telling me how health care professionals on other wards and in other hospitals just don't understand what it is like to have CF and how it affects my life. I am sure I am staring at her with my mouth open in a shocked sort of fashion, but she doesn't seem to notice. I know she is trying to be nice, but the situation  is very ironic. This is totally lost on the student nurse, new to the health care profession and new to CF. The mind boggles.

A porter arrives to take me for a chest x -ray and bloods. I have to sit in a wheelchair. This always makes me feel ridiculous since I am perfectly capable of walking. And I have to wear a mask. I am wheeled straight in to x- ray and immediately start removing my bra. I push the wheelchair out of the way and get myself ready. The technician knows that CFers have done this a hundred times before and know the drill. In two minutes we are finished and I dress and wheel the wheel chair back round and plonk into it.

The porter takes me next door for blood. I chat with the phlebotomist about the book she is reading. She is only 20 pages in so I can't discuss details. I don't want to ruin the end for her. I tell her I have a friend with the same name and I tell her she is from Somalia. She too is from Somalia and we chat about this for awhile. She is a good stick but half way through the tube stops filling. I ask if I should pump my hand. She says "yes" so I do it and this seems to help. My mind wanders back to a time when this would have been very traumatic for me ( I used to be terrified of needles) and think how odd it is that I am sitting here calmly now, pumping my hand so that the tube will fill with blood. I finish and go back to the wheelchair in the hall to wait for the porter. I start coughing really hard and can't catch my breath. At this very moment they try to wheel an extremely obese woman in an (a double wide, I think) wheel chair through the door. I am in the way even though I am not even near the doorway. I am losing a lung and can't breathe but am trying to get out of the way. I think that this must all look very odd to the people watching. And then I think it is a bit rude Mrs. Doublewide hasn't even said thank you or acknowledged me. Eventually the porter arrives and we go back upstairs. The hallway is blocked by a number of things so I hop out and walk rest of my way to the room, thinking how pointless the wheelchair thing is.

After this I am visited by the doctor, an SHO (Senior House Officer). She is youngish, as they always are, but seems very competent. We discuss my symptoms, talk about how I probably don't have flu but that she will need to stick a tube up my nose to do a test in the morning. We then move onto my favourite part, talk about IV lines. I tell her that I am tricky stick and have very disagreeable veins. She does not acknowledge this. I suspect she is telling herself she will be able to manage. I can't fault her as I think putting in an IV line successfully requires a lot of luck, a bit of skill, and huge helping of confidence. She looks at my veins and chooses one.

She sticks me and routes around for a while. No good. She picks another vein. She opens another long line pack and we do the routine from the first time all over. Tournaquay, cleaning, needle, etc. She says, "sharp scratch" before sticking me. They always say this. She tries several angles but the blood won't flash back, a sign that this is not going to work. She tells me that my veins keep jumping away or collapsing. I imagine my veins hopping all about and mocking her with childish taunts of the nanny- nanny - boo - boo sort. She looks a little shocked. I immediately go into "it's not your fault" mode. I have given this spiel many a time to a despondent young doctor. She asks if she should put a cannula (a very short, small line) in so that at least I can get my first dose of meds. I agree despite that fact that cannulas usually fail on me within 24 hours.

In the meantime, a man brings my dinner. He has not put on any isolation gear and he doesn't look to happy. He barges in and sort of tosses the food at me. I notice his shirt is untucked and I can see the top of his underwear. Shame he is not cute. A little Chip and Dale action could have made the day a little more interesting. The doctor chastises him for not having the proper isolation clothing on and he leaves. I am now starting to feel sorry for everyone who enters my room. Getting all dressed up is a pain and I am sure it is pointless. The doctor leaves and I ask her about going home. She mutters something about Monday and disappears.

I sit for a bit and stare at my bags. I haven't unpacked them yet because part of me thinks that they may send me home again once the discover that I don't really need to be admitted. I do delusion well. You probably know this. I then give over to the fact that they are not going to send me home again but latch onto the idea that the bags may unpack themselves. I often wish this of my bags, but it has never happend. I stare spitefully at my bags. The bags remain packed. So I give in and unpack them myself.

It is now 6: 30 pm or so and Alastair comes to visit. This is always the best part of my day. Normally he would stay with me while things get set up, but we have become old hands at all this and know it will be a lot of waiting around and wasting time, so he went home after dropping me off to do work. Poor guy has a million and one things to do. Plus, he is exhausted from single-handedly getting us home from Japan. He wouldn't let me lift or carry or even roll any of the bags at any point on our journey home. He is my Superman. But he is detained outside by the doctors who have just arrived. They are chatting to him and the consultant (head doctor) is asking him all about Japan. She enters, dressed in her isolation finery, and gives me a hearty " konnichiwa" and asks what I have learned in Japan. I say I have learned very little as the trip was cut short and I was ill while there, but I give her my best "arigato goziamas." She asks when I have last been on IVs and I tell her February. "So a good run, then," she claims and says I have managed to not be an inpatient for over a year. She also says, "you look as if you have gained weight since I last saw you" (a complement in the CF world). I tell her I have lost some weight and the she should of seen me a few weeks ago. I was a real porker then. We then discuss a few medical points and she tells me she thinks the visit should be straightforward. I'll get some IVs and physio and be on my merry way. I ask about my blood work and they say it is not back yet, so we don't know what the CLP number (measures amount of infection) is, but the consultant guesses between 60 and 70. Anything over 10 is considered infection. Later I find out that it is 39. This is neither the highest or lowest number I have ever had.

A nurse comes and gives me my first IV. I am worried it will hurt because I only have in a short line and the meds I take are very corrosive and can sting sometimes. It stings a little but all in all it goes OK .

Alastair sets up my internet and unpacks some of my machines for me. Time has passed and he needs to go home. This is always the worst part of my day. I want to go home with him. I don't want to be here with all the beeping and clanging, sleeping in a bed that is not my own with horrible pillows.

Hours pass and I email, Skype and watch telly to pass the time. Around 11, the nurse comes back with another dose. I watch True Blood for the first time and then a drama about the war in Iraq. I have been been wanting to see this but I can't really turn it up loud enough to hear and can't really understand what is going on.

I work on typing this and before I know it 1 am has come and gone. I get ready for bed and wait for day 2 to arrive.

OK, you win

So whom do I mean by "you"?

If you are a friend or family member whom, over the years, after reading yet another (humorous, I hope) email from me detailing the seemingly ridiculous thing that has happened to me, usually within a medical setting, and then remarked that I should write a blog or book, then I mean you. And you win - all two of you. Grandma and Britt, I hope you like the blog.

It needs some work, I know, but my IT /graphic designer is at home. This is usually quite convenient since I live with him, but I am out of luck tonight as I am out of the house and in the hospital. Do I hear booing? No. We are gonna need to work on that. I need people to boo when they read I am in the slammer.

Wow, I am finally a blogger. Just what the world needed. Not. Anyway, I'll do my best and try to not bore you all to tears. I do not need bored and crying people on my conscience.

So here's to you and here's to me, the best blogger and blog reader I hope we'll be. (I just made that up and it's kinda lame, but I am going to leave it.)

Ash