T-1 Days till Surgery

Tomorrow I am having the Nissen's Fundoplication done. I had planned to put the surgery off until after my holiday in May, but then I thought better of it and decided to get it out of the way.  So Wednesday, the 13th of April is the day.  I have spent a long time waiting for this day. Since I first asked to be investigated for reflux problems to the day of surgery will be about 9 months. A long 9 months it has been, because every day that this problem continued to be a problem, was another day that I couldn't get on with fertility treatment.  So now the day I have been waiting for is almost here, and I kinda wish it wasn't! Because of.....

Food. I love my food, you see. Have an appetite like a horse. (This statement may offend some horses out there who don't want be compared to human with a ravenous appetite like a pig with the munchies. ) My incredible appetite stems from having CF and not absorbing all the calories I take in, and then there is an element of just loving food tossed in to add an extra ravenous edge. Whatever the reason, I seriously love to eat.  I can be eating lunch and thinking about what I am gonna have for a snack and dinner.  So when your life revolves around food, it is upsetting to think about being on a restricted diet for an indefinite amount of time. 

Diet.  There is a chance that after surgery that I will only be able to have a liquid diet for a few days or a week, and this is messing with my head. A day(s) with out real food (and liquid is not real food) is like a day without happiness. Soft foods will follow. And I am sure baby food is pretty tasty these days...if you are baby. Then there is a chance that I may never be able to have fizzy drinks again. Telling me that I may never be able to enjoy the bubbly goodness that is a cold Coke or Dr Pepper is like telling a little kid there is no Santa Claus - it's the truth and it won't kill you, but a little bit of you may never be the same/dies inside.  Thing is, I may not be able to burp after having this surgery. This gives me two options. 1. Pour out the drink several hours before I want it so it can go flat, which kinda defeats the purpose of a fizzy drink, or 2.  Have a fizzy drink and feel like I need to explode because I can't burp. I do love a fizzy drink, but I am not sure it is worth that exploding feeling. 

Wind. There is a chance that I am likely to suffer from increased flatulence after the surgery. This goes back to the inability to burp. If gas can't get out one way, it gets out the other. It's simple physics. Now I have a reasonably good sense of humour, but the idea of constantly breaking wind is only a tad bit funny and I should think it gets unfunny pretty quickly. 

Scars. I seem to be racking these up from surgery. Tomorrow's surgery will be done laproscopically, which means I will have lots of little scars instead of one big one. I am thankful that it won't be one big one, but several small ones don't sound as nice as no scars. I do know that the scars will eventually fade in a few years, but until they do my stomach will look like a treasure map where the red scar marks the spot...or lots of spots. It also doesn't help that I am very fair skinned. I reckon if Snow White and a vampire had a kid, then it would have my colouring....but it would also have some cool fangs and seven little dudes to help it out, so she probably wouldn't be too caught up on the pasty skin thing. 

Anyway, I know all these issues are trivial.  At the end of the day, I have to make every effort to look after and protect my lungs. And on the plus side, I won't be able to vomit anymore. This means my days of coughing so hard I throw up and get vomit up my nasal passages will be a thing of the past. And I won't be sorry to see the day when I no longer have to blow bits of dinner out my nose. 

I Get By With A Little Help From My (Team) Mates

When I said I was busy before Christmas, I wasn't lying! I present Exhibit A. An article in Red Magazine (Feb '11 issue) about me and the extensive team - family, friends, doctors, nurses, physiotherapists, dietitians, pharmacists (to name a few) - that helps me deal with cystic fibrosis in one way or another.  Given the opportunity, CF would  kick my backside all over the shop, and I need these people to help me fight back. I shutter to think what my life would be like without their help and support.

Click on the picture to read article.

It was fun getting to do the shoot, but I have to admit that my face was hurting by the end from smiling for an extended period of time.  Have to say that I am not crazy about how I look in the pic (stupid steroid moon face!), but se la vie. If the article brings awareness to CF, then I am happy.  I am also pleased I got the chance to let my team know just how much I appreciate them. Though I hope they knew that already!

And I am obviously famous now,  as evidenced by the fact that ONE whole person has recognised me. Granted, she was a CF patient and saw me at clinic......but she recognised me nonetheless! I really must  start carrying a pen around so I can sign autographs. Probably should be practicing my pout in case I get papped, too ; )

Fundoplicate Me

For months I have been waiting to see the all knowing, all powerful Mr King Surgeon to get his opinion on my reflux problems and whether or not I need surgery. I won't rehash all the details of this situation but you can read them in this POST.  Friday before last the day of reckoning arrived - or so I thought it had - and I rocked up to yet another London hospital hear the fate of my troublesome digestive system. My appointment was for 14:40, so needless to say, I was slightly irked when I was called in at 16:30. My irked feeling quickly turned into pure irritation when the doctor introduced himself as Not Mr King Surgeon (NMKS) and the following discusion took place :

NMKS:		"Hello, I am Not Mr King Surgeon. You will need to come back and see Mr King Surgeon for a decision.
		I gave him a look that I hoped said,  No sh*%, Sherlock.
NMKS:		"But you will almost certainly meet Mr Certain Surgeon right before they knock you out before surgery."
Me:		"So I am having surgery? Even though you just said I need to see Mr King Surgeon before a decision is made. And you think I am gonna be fine with meeting him right before surgery? "
NMKS:		"Yes. Errr.....No. What I mean is, I think you are a good candidate for the surgery. "
Me:		"So I waited for almost two hours for you to tell me that I need to be seen by Mr King Surgeon, which we knew because it specifically stated that in the letter sent by my doctor from my hospital? And he is not here? So I will not be getting a decision today and today has been a total waste of my time, your time, and the NHS's time? "
NMKS:		"Well, yes. I mean, no. There is a test that probably should be done before a decision is made. I need to order a PH test to see how bad the reflux is."
Me:		"Oh, the PH Manonmerty test where they stick a tube up your nose for 24 hours? Yeah, I've had that done. Doesn't it say in the letter and didn't they send my results?"
NMKS:		"Errr, yes, that test. Errr, no. It doesn't mention it in your notes and there are no results here."
Me:		"So let me get this right. Mr King Surgeon is not here. And I have to come back and see him. You know practically nothing about my case. You don't have any of my results. This appointment really has been a total waste of time?"
NMKS:		"Uhh. Errr. Uhh.....You should come back next week. Tell the secretary to overbook the clinic and I advise coming at least 40 mins late to your appointment. You should also call before you come to check that Mr King Surgeon is here. And, yes, uhhh, sorry.

Needless to say, I was very grumpy when I stomped out of the room and up to the secretary's desk. But I took a deep breath and as calmly as I could, tried to explain to the secretary why I had to come back and why it was crucial I see Mr King Surgeon. I am fairly confidant she thought I was full of it and being uncessarily fussy about who I saw, but in the end she booked me in for the next week and gave me Mr Certain Surgeon's nurse's number so I could call and check that he would actually be in. 

He was in (hallelujah!) when I rocked up, on time, for my appointment the following week. And after I waited and hour and a half to see him, he told me that he thought I needed surgery to protect my puffers from acid. We discussed pros, cons, potential complications and waiting times. Satisfied I that I finally had an answer, I started to gather my things to leave so I could get on with my Friday night.  I was just about ready to stand up when he he came out with this litte gem, "One more thing I should mention. You might have bad flatulence after the surgery. As you can't burp post surgery, the air has to go somewhere so it goes the only way it can. Down" 

And on that note, I left the hospital and headed to the pub wondering if I would be able to propel myself with wind power post surgery. 

Hernia Harris

Well, as usual I have been very naughty and have not updated in ages. In all fairness to me, it has been a rather busy few months and then the holidays hit, and only now am I getting back into the swing of things. Since I last updated, I have had several doctors appointments and things have generally been going OK - *taps my knuckles on my head to knock on wood* - and I am starting to feel a little more like myself and a litte less like the doom-and-gloom-might-cry-at-any-minute Ashley of 2010. Hallelujah! That girl was such a downer.

Of my many appointments, one was to see the ENT (Ear, Nose, Throat) doc for my six month follow-up for sinus surgery.  I didn't post about my sinus surgery cause I was still deeply entrenched in my unhappy phase, but I will tell you now that I had my sixth sinus surgery in July. It was a bit of a shock that I needed surgery as I had JUST had surgery in March of '09, but I suppose that is another post. So I saw the ENT doc and told him that I was still getting sinus headaches, rather annoying as the relief surgery gives me usually lasts for more than a few months. He looked up my nose and, besides some boogers, said that everything generally looked good. The doc decided I was perhaps suffering from something called neuropathic mid-facial pain...or something like that, it was too many words to remember....and the answer was to put me on an anti-depressant! I had to laugh at the irony of it all, seeing as I spent the majority of 2010 in the dumps but was feeling much better when I saw him. Apparently, the drug I am now on started its life as an anti-depressant but it was found that in small, not enough to un-depress you doses, it can help with all sorts of pain. Though it must be said that not being in pain is a reason to be happy and less depressed. Thus, I am on it to try and prevent headaches and it does seem to be helping, as I have had fewer headaches.  So good call Doc, you have improved my life. *Gives cheesy thumbs up to thin air*

I think I had a some more appointments with the GI docs to discuss my reflux but nothing new came up and the decision stands that I am to see the surgeon to get his opinion on matters. I did try several times to ask whether or not the doc had a gut (ha ha,"gut," get it?) feeling about whether or not I needed stomach surgery, but got nowhere. If you are wondering, I did actually say that to the doctor and then laughed at my own joke. In fact, I have said it to several doctors, cause once I think I have found something funny I insist on saying it several times. Any who, you can find me at the surgeon's office on the 4th of Feb.

Chest-wise, I have actually managed to stay off IV's for two whole months! Before the oh-so-hellish year that was 2010, I never thought I would be excited to say that. Though at an appointment right before Christmas, I did ask the doc to send me home with some orals as I have a notorious habit of getting sick on Christmas Eve. Plus, I knew I was spending lots of time with family that had been on a plane and had a tiny tot, otherwise known as a small and very cute germ incubator.  So the second I suspected I coughed one time too many, I immediately started on the orals. I finished the drugs last week but now am very suspicious of how phlegmy I am. So I am keeping an eye on myself and lungs because 2010 showed that me and my lungs can not be trusted to stay well. We're a rather shifty lot, after all.

Now you have read three rather long paragraphs and are wondering what the 'Hernia Harris' stuff is about. What? You are not wondering? Well you should be. Didn't your teachers teach you anything about getting to the point? No. Me neither, apparently. But I am getting to the point in my next sentence. After Christmas and before New Year's Eve, I noticed that I had a pain around my belly button when I coughed, moved funny, or when I pressed on it. You know when somebody presses on something and asks, "Does this hurt?" Well, I did that too myself and it did hurt. However, I decided I was much too busy to pay this pain much notice as New Year's was coming up and if I spent time analyzing every new pain I had, then I would be a very busy woman indeed. So I celebrated the arrival of 2011 and my motto for the evening was, "See you later 2010, you sorry excuse for a year! Don't let the door hit you on your big, horrible ass on the way out!!!" Now I should have known that if I was gonna be rude to 2010 and say nasty things about it that it was gonna find out and retaliate. And retaliate it did, because....

On the first day of 2011, I decided I finally had time to think about the niggling pain. This involved me sitting around my in-law's table and repeatedly poking my belly button, saying "ow', over and over again and then asking anyone who would listen what it meant when if it hurt when you pressed on your belly button.  No one had an answers, but they did have a lot of funny looks to cast my way, so when I got home I asked my trusty friend Google what the problem might be. First Google tried to tell me I had Irritable Bowel Syndrome, but not finding that a suitable or nice answer, I asked Google what else it had. Google then told me that perhaps I had an umbilical hernia. For you non-medical folks, that is a hernia (weakening of muscle so your innards push through) in your belly button. So I proceeded to spend a lot of time staring at my belly button and trying to see what happened when I coughed or generally did something that created pressure in my abdomen. What happend was that half my belly button, which looks a whole lot like a little bum, popped up like a bum cheek on steroids. I could then press the little bum cheek down and feel a little click. Now I know Google doesn't always know best, but feel I do (on this occasion) as this my third visible hernia (don't forget I have the hiatal hernia but can't see it). Surely three hernias makes one a hernia expert, so I have diagnosed myself officially as having an umbilical hernia.

The good news is that it must be realllllly small. Let's be serious, only half my belly button pops up, how bad can it be? The bad and obvious news is that 2010 managed to give me one last mark to remember it by as I shoved it out the door. Still, I am very happy to see 2010 gone and am most pleased that it is 2011. I will leave you with a not particularly great picture of me and hubby ringing in the new year.

Oh, HAPPY NEW YEAR to you all!! I hope it is a good one for all of us!

Release!

A VERY quick note to say that I am being released today! Yeah!  It was a little touch and go there for a bit but after more tests, they agreed to let me go. I will complete my IVs at home. Having housekeeping, and catering and lots of people interested in your every move has its perks, as usual, but 10 nights of pampering  (or incarceration) is plenty enough for me, thanks. Oh, how I love home! My husband, rabbits, and bed are there and I can hardly wait to get to them. I just might hug them all within an inch of their life (though I suspect this could be more difficult for Alastair and the rabbits than the bed).

Yippee!

Fundoscopy

Yesterday I had that pesky test they brought me in for, an endoscopy, or fundoscopy, as I like to call it. It really wasn't fun in any possible way, but I think, whenever possible, it's better to give these annoying things a more entertaining name. So fundoscopy it is.

For the last 18 months, I have been having increasing problems with acid reflux (heartburn). Every few months I complained to the docs that I was having pain despite taking my medicine to prevent problems. The docs would up the dosage of meds and send me away to see how I got on. Each time, I would be fine for a while, but then the pain would come back, leaving me eating tums or other chalky grossness like it was going out of style. So they would up my medicines again and wait to see what happened. Things continued on in this manner and I am now taking the maximum amount of medications twice a day.

Besides being painful, acid reflux can be a problem for a number of reasons. For example, if you get it too often the acid can eat away at your esophagus, cause ulcers, and in very severe cases, it can even cause cancer, to name a few. In some cases, you can have acid and non-acid (stomach contents) reflux and aspirate into your airways. And this is very bad. Little fact you may/I hope you know: lungs don't really like having anything in them besides air. Ever been eating or drinking and have something "go down the wrong pipe"? Not nice, right? Aspirating refluxed contents into your lungs is sorta like that; lungs don't really appreciate it. So bare with me while I try to explain how this applies to me.

This rolling year, as I mentioned a few posts ago, has stunk on a massive scale because I have spent A LOT of time being ill and on IVs (this is my 23rd week or so now), but I have also had episodes of tightness that have not been responding to bronchodilators (meds to open up the airways) and steroids.  This has been very frustrating and has left everyone scratching their heads trying to figure out why I am having problems with tightness and why I have had so many more and prolonged courses of IVs than usual.

Enter reflux.

The docs are thinking that the reflux might be causing the tightness. The idea being that my airways  close themselves off when I reflux as a protection mechanism, resulting in me feeling tight. So I have had a couple of investigations to try and see how bad my reflux is. I had a study done a few weeks ago called an impedance study.  They stuck a probe with various sensors up my nose and down my esophagus for 24 hours to measure how often I was getting episodes of acid and non-acid reflux.

Here is a picture with the probe in, not really having the time of my life. It was uncomfortable at times as I could feel the tube in my throat, causing me to gag and retch. And since the tube wasn't going anywhere, gagging and retching was a waste of time (I tried to explain this to my reflexes, but they wouldn't listen). Plus, there was a little computer to take readings attached to the wires. So every where I went, my very unfashionable little computer-on-a-shoulder-strap went too.

The study showed that, despite being on maximum amounts of medication, I am having episodes of acid and non-acid reflux. The acid bit is odd because the medicine I am on should neutralise it, so that when and if it does come up, it's not acidic. But I didn't have so many episodes that they could definitely confirm that the reflux is the problem. So they wanted to do the fundoscopy (endoscopy) to try and gather more information.

A fundoscopy is a test where they stick a tube with a camera on the end down your throat so they can have a look at your insides. In my case, they were checking out my esophagus (tube your food goes down) and stomach.  And what did they see when they stuck their giant tube down my throat while I gagged and retched and coughed like mad? Well they saw that I have something called a hiatal hernia and that contents from my stomach were coming up when I coughed.

The doctor who did the test concluded that surgery to fix the problem should be considered. Ah yes, meant to say that if the problem is bad enough, they have been considering surgery to fix the problem as I am pretty much out of options medication wise. So I thought, OK, no problem. At least now we know what the deal is and something can be done to fix it. I love a problem with a solution, after all!. 


After the procedure, I sat and waited for my knocked out tongue to regain consciousness and texted  Alastair to say that the doc had said surgery needed to be considered.  As I sat, the doctor who I had seen in clinic and had ordered the endoscopy, came up and asked how I had got on and to see my results. He looked at my impedance test and the endoscopy results and concluded that I did not need surgery and should just stay on my s*** load of medications. With this conflicting news, I stared wide-eyed at him. He said, "Do you want surgery?" I said, "Not particularly, but I do want a problem with a solution. If you are telling me that this is not the problem then that means I am still without an answer and the docs are running out of ideas. So I don't want surgery, but I do want there to be an obvious problem so that it can be fixed and I can get on with my freagin life." He looked at me, twitched his moustache around a bit, then wrote on the printed results that my CF docs were to call him to discuss.  And then I texted Alastair to say that apparently I was not having surgery after all, and waited for the sightly too touchy-feely transport guy to to take me back to the hospital from which I had come.

Back on the ward and feeling a bit deflated, a doctor came to say that it would be the decision of many, not just one doc, to decide whether or not surgery (known as a Nissen's Fundoplication) is required. Because this is very complicated and messy mystery they are trying to unravel and there are no clear-cut, black and white answers.  So now I wait for CF docs, GI docs, and (potential) surgery doc to have a massive pow-wow and ask themselves that age old question, to fundoplicate or not to fundoplicate?

Cheeky Pong

I am currently in hospital and am here cause I was bamboozled. Bamboozled by Dr Cheeky Pong. That's right. Cheeky. Pong.  Let me explain......

A few weeks ago my husband and I went around to a colleague's home for Sunday dinner. Actually it was cupcakes, then homemade pizza on pastry, then dinner. CF heaven! What a day!  Between pizza and dinner, Alastair went outside to play football (soccer for my American peeps) with her little boy, who is a charming, well spoken, clever little guy of six. Now, Mr Few Skills, is, as his name suggests, laking in the football skills department (To be blamed on is his father who is lovely but is American and has no football skills to teach). When Alastair sees MFS he does his best to impart what he knows of the 'beautiful game' to the poor child, who lives in football-mad England but by no fault of his own struggles to play. The two were in the garden taking turns in goal but the points were seriously skewed as MFS kept changing the rules so that many of Alastair's goals didn't count. Soon MFS had lots of goals and Alastair had very few. Alastair obliged him for a time but then enough was enough. He was going to let MFS wins, obviously, but by a sensible amount. So on MFS' next play, Alastair made up a rule and informed MFS 10 points had been deducted from him. MFS stared cooly at Alastair and in lowered tones declared that Alastair was a "cheeky pong.' A rule-changer.

Fast-forward to last week. I called the docs on Monday to let them know that the oral antibiotics I was about to complete had not done the trick and I wanted to move onto the hard-core stuff but that I wasn't, by any means, so unwell that I needed to be hospitalised. The nurse said he would call me back after speaking with the docs. He called back and totally caught me off-guard when he said the docs wanted to bring me in to 'knock the problem on the head' but that there was a 1-2 week waiting list. I huffed and puffed and put several well-reasoned (I think) arguments to him about why this was not a good plan. And how did it make sense to say they thought I needed serious sorting out (enough to be dragged in) but that I could be made to wait two weeks? He agreed the plan had its flaws and said he would speak to the docs again and ask that I be started on home IVs while I waited for a bed. The doctors agreed to this and I secretly thought I had outwitted them. My plan being that I would start home IVs, my lung function would go shooting up, and then by the time a bed became available, I would be so well that they docs would no longer want to admit me. Genius. Then we would all stand around and chuckle about how silly they had been, while they told me how I had been right all along and that they really should listen to me more often. And I would smile warmly at them and tell them, yes, you all really should listen to me more often, but I know you were just trying to do right by me.

So off I went to the day ward on Friday to get home IVs started, safe in the knowledge that there was a very long waiting list for beds. Plus, nobody gets admitted on Friday afternoon! All was going well and the doc who was seeing me agreed that if I were to show improvement, she would call off the senior dogs...I mean docs...and try to make them see I didn't need to be admitted. I even heard the nurses discussing who would deal with the home healthcare company that deliver the IV meds pre-made to your door. I sat around while I waited for my first dose of drugs to finish and worried if I would be home on time to see the friends I had made plans with for the evening. And then it happened....

I was sitting minding my own business when a doctor (whom I recognised but thought didn't do CF) comes up and starts chatting. He's all smiles as he says he is a registrar and reminds me of his name and that he saw me many years ago when he was an SHO (Senior House Officer. AKA low on the career totem pole).  Foolish girl that I am, didn't realise I was about to be done and congratulated him on his rise through the ranks. He thanks and me and then out of the blue bamboozles me. Just smacks me in the face. How does one bamboozle you ask? Well he did it while looking handsome and with a smile on his face. He informs me that there is a bed downstairs and he and his colleagues have decided that it should be mine and I should head down there shortly. Do not pass Go. Go directly to jail. I gape at him stupidly and see stars (you see stars when you have been bamboozled). Once I stop swaying from the force of the bamboozlement, I can only think one thought. You. Cheeky. Pong. You changed the rules. On me. 

I asked what happened to the REALLY LONG WAITING LIST! He proudly informs me they were able to discharge 12 people the day before and get 11 admitted that day, leaving one bed with my name all over it. "Isn't that lucky?",  he says. I glare at him and tell him I am not appreciating his team's extremely efficient actions or my 'luck', on this occasion.

I considered informing him of the fact that he was cheeky pong, and a really cheeky one at that, but decided he wouldn't get it and settled on the 'let me tell you why I shouldn't be put away, witty banter' route instead. Thus, I gave him several reasons why I should not be sent to jail and how house arrest would suffice. I banter mightily and with lots of wit. The nurses are laughing. The wit is flying. Dr Cheeky Pong is covered in it. He is dripping wet with the good reasons and wit I have flung at him....but he's not buying it. I'm going down. Hard. But I desperately, valiantly offer up one more thought: If I was so unwell would I be able to put up such a fight while presenting rational arguments with a smile and gigantic side of wit?!  Yes, he thinks so.  Plus, I need some tests and he argues that if I were an inpatient they can get these done and dusted more quickly, and this is the real reason to bring me in.

I called Alastair and told him he was not gonna believe what had just happened.........