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!
Monday 15 November 2010
Sunday 14 November 2010
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?
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.
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?
Wednesday 10 November 2010
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.........
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.........
Saturday 6 November 2010
Meet the Bunnies
On the whole, 2010 will definitely be going down as a write-off in my books, but two good things did come from the year. In a desperate attempt to cheer me up, Alastair lifted his no pets rule and bought me these two fur balls, also known as Lulu and Guinness!
Lulu and Guinness are mini lops and have been with us for six months. How cute are they?!
I love them! They have done so much to lift my spirits and I am so grateful to Alastair for getting them for me.
As you can see, we like to spoil them. With home grown balcony carrots, no less!
And they keep me endlessly amused. Here is Lulu trying to take a nap. And here is Guinness taking it like a real bunny - lying down.
There you have it folks, two of the five or so good things that came into my life/happened to me in 2010 (Yep, I can count the good things/times on one hand. 2010 has really been that big of a let down). I have about a bazillion more pictures, which I will no doubt share in the future.
Lulu and Guinness are mini lops and have been with us for six months. How cute are they?!
I love them! They have done so much to lift my spirits and I am so grateful to Alastair for getting them for me.
As you can see, we like to spoil them. With home grown balcony carrots, no less!
And they keep me endlessly amused. Here is Lulu trying to take a nap. And here is Guinness taking it like a real bunny - lying down.
There you have it folks, two of the five or so good things that came into my life/happened to me in 2010 (Yep, I can count the good things/times on one hand. 2010 has really been that big of a let down). I have about a bazillion more pictures, which I will no doubt share in the future.
Friday 5 November 2010
The Domino Effect
Well, as you can see I have not posted since January. This is because the tables have turned in my little game. I haven't been giving CF the proverbial middle this year, it has been giving it to me. Big time. No one thing that has happened has been disastrous or beyond repair, but every thing has been a setback causing another setback, a domino effect of sorts. Each domino has been a hope or goal and with each one that has fallen and then crashed into the next, a little piece of my heart and fighting spirit has been wiped away. I look at the scattered dominoes and I feel beat down, stripped bare of the sparkle that my husband says he fell in love with me for. And I can't recognize this deflated, lackluster girl anymore.
I don't laugh like I used to. Or not as much, anyway. The medical road bumps/hiccups/hurdles, whatever you want to call them, which I used to think darkly amusing because they would make for a funny 'it would only happen to me!' story or blog entry, not so funny anymore. I don't know this Ashley that laughs little and infrequently. I didn't want to have to tell you about her.
I didn't want to admit to those of you who check in that I haven't been myself, that my CF warrior armor has a chink in it, that I am (or was) flirting with self-pity. I didn't want to wallow in, root around, search the massacred dominoes for an offering -a point, a moral, a nugget of humor- to give you. So I didn't write. I collapsed in on myself and I waited. Waited for the hard, not-so-funny moments to pass and the ha-ha-isn't-my-life-comical moments to arrive. Thing is, I am still waiting. Though, I am pleased to say that the hard moments have passed somewhat....not because things are better and not because I don't have many hurdles to jump still, but because I have accepted that the goals I set this year are simply not happening, despite my hard work and planning, at this point and time. So for now, I leave the dominoes, my hopes, my goals, my wants, where they lay. And when the time is right, I will set my dominoes back up and knock them down with my own hand and at a time of my choosing.
I don't laugh like I used to. Or not as much, anyway. The medical road bumps/hiccups/hurdles, whatever you want to call them, which I used to think darkly amusing because they would make for a funny 'it would only happen to me!' story or blog entry, not so funny anymore. I don't know this Ashley that laughs little and infrequently. I didn't want to have to tell you about her.
I didn't want to admit to those of you who check in that I haven't been myself, that my CF warrior armor has a chink in it, that I am (or was) flirting with self-pity. I didn't want to wallow in, root around, search the massacred dominoes for an offering -a point, a moral, a nugget of humor- to give you. So I didn't write. I collapsed in on myself and I waited. Waited for the hard, not-so-funny moments to pass and the ha-ha-isn't-my-life-comical moments to arrive. Thing is, I am still waiting. Though, I am pleased to say that the hard moments have passed somewhat....not because things are better and not because I don't have many hurdles to jump still, but because I have accepted that the goals I set this year are simply not happening, despite my hard work and planning, at this point and time. So for now, I leave the dominoes, my hopes, my goals, my wants, where they lay. And when the time is right, I will set my dominoes back up and knock them down with my own hand and at a time of my choosing.
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