Tuesday 19 February 2013

Bronchoscopies, fungus and home sick

Today in harefield hospital I had my bronch, a camera was put down into my lungs under a GA they were washed and for the first time ever a biopsy was taken. The biopsy is checking for signs of aspiration (reflux meaning I need the fundo op) chronic rejection, acute rejection and antibodies rejection (I have developed donor specific antibodies).
Waking up form my bronch coughing spluttering, feeling like I was suffocating. Mouth fulls of flem were suddenly flying out my mouth, all I could think was I thought they were suppose to wash this crap out and I'm pretty sure none of this was in there before! I was still coming round but trying to sit up, the GA wouldn't allow me to by body was limp. They sat me up I was panicking, I had a 02 mask on and they just kept reassuring me I was ok and my sats were ok. After bring up loads of flem I was taken Into recovery. Then moved on to the ward. The rest of the day I spent in and out of sleep.
The doctors came round and told me they were pretty sure I had a fungus again Last time I had a fungus this time it was all In my right lung again, that although my ct didn't show a collapse all my lower airways were collapsed due to the amount of thick flem blocking them. So I'm now on caspafungin iv (spelling?) I don't know if I will undergo repeated bronchs again like last time but fingers crossed this drug clears it all up. I am on voriconozole permanently since my last fungal infection but in clinic last my level had dropped even though my dose had not changed so now there waiting for my level to go back up and hopefully this should all clear up.
My lung function yesterday was 72% so still on the up but a long way to go to 97%, I couldn't do it today due to the biopsy. Also since being In here and eating all the wrong foods and being fairly sedentary compared to my usually routine of work for 6 hours gym for 1 1/2 then teach for 3, some how traveling from work to the gym to home and eating in-between this all. My blood sugars have had a hissy fit. My body also doesn't agree with GA s so hopefully after a few days my sugars will start to get better.
For now I'm hoping to go home over the weekend. I'm missing my little ball of fluff (Kia) and my hubby. I can't wait to have a day with them Sunday. So fingers crossed!
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Saturday 16 February 2013

Exeter hospital to Harefield hospital

So my Ivs didn't seem to be working and yesterday in excruciating pain and lung function at 62% fev1 from 97% I rung Harefield, they advised that I wait till Monday and be reviewed in clinic. Well by the end of the day I couldn't handle the pain and developed a temp of 37.8 I decided to go to my DRs and get pain relief. They decided they were not happy with my numbers and I was to be admitted to exeter hospital with a view to go to Harefield on Monday still.

Since being in my breathing has improved and my numbers are up slightly at 69% the pain has gone as has the temp. Iv had a X-ray and ct scan both showing 'change' various different shadows that weren't there before. Harefield have now decided to have me up there tomorrow and I will get 'ambulanced' up, I'm not that sick but it's just there way of transferring me.

As I have said with any blip you wonder what the cause is, is it really infection? or something more sinister? you wonder whether this is the beginning of the end? you can't help worry those things but I'm sure whatever it is is treatable and will be sorted out ASAP and in a way I'm glad to be going to my specialist centre at least they can deal with it efficiently and make sure all the 'other' possibilities are ruled out.

I will keep everyone updated through Facebook, twitter and my blog and thank everyone for there continuing support.

Also here's the link to my itv piece http://www.itv.com/news/westcountry/story/2013-02-12/from-the-heart/

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Thursday 14 February 2013

Valentines day in bed

Well I wish it was that sort of in bed ;-) but no. On Sunday I had an awful virus and since my lungs have continually got worse. Tuesday I decided to ring up and get the ball rolling on IV antibiotics. Like I said in my last post my lungs haven't quite been up to par recently any way. So I started Ivs yesterday. Colomycin and tobramycin two drugs that preferably should not be had together as they are both harsh on the kidneys. My lung function is down a fair bit form 97% to 70% although 70% isn't a bad lung function, it is a huge drop and my lungs feel riddled with infection, my breathing has just got worse and worse, I'm wheezy, breathless, in a fair bit of pain and exhausted (the Ivs have contributed to making me even more so) This morning I couldn't face going In to next for my shift and I know I can't tomorrow either.

I know this is just a blip, like the many others and I will overcome it. I can't help feeling like pseudomonas is out to get me again and I wonder why I'm not able to get rid of it like other transplant patients, I do my treatments, I stay fitter than most but this bug seems set to haunt me forever. I guess when the do my ct scan they will find out if its caused any permeantIy
damage yet.

I hope you are all having a lovely valentines day and even though I'm not well I have stu here looking after me a rare event as he's usually working all the hours under the sun. He's also spoilt me with breakfast, presents and generally being very helpful.

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Monday 11 February 2013

And so the ball just kept rolling

I know this is over a week late really but I'm here to update you all on how clinic at Harefield went on Monday last week.

Well it was a long old day to say the least, 6am knocking at my front door, tap tap, tap, I had forgotten to set the alarm. The first time ever I get hospital transport and I forget to actually get up. I ran down stairs in my dressing gown and told the driver I would be ready in 10 minutes, luckily I had indeed had a shower the night before got my clothes ready to put on and my food for the day packed. So running round getting dressed, I did my hair up in a slick donut Hun. Pristine and easy, make up in a bag, I would be putting make up on whilst in a moving vehicle! (I did not understand how hard this would in fact be!) and food thrown in so I wasn't quite 10 minutes but 15 isn't bad when you've just woke up!

So the journey was long, we went via Southampton for another pick up several hours later we arrived, I'm just glad the company in the car was good, otherwise it would have dragged!

I felt particularly nervous about this appointment, sometimes you can build things up in your head, bigger than they actually are. Possibly what iv done over this while fundoplication operation. But anyway my lung function has been a bit lets say squiffy and I had a heap of questions about this operation, in fact a huge sheet, not all for Harefield as there not the hospital doing the operation but they can certainly answer a lot of them. So I had bloods, lung function (which wasn't as bad as it had been(yay)), x-ray, then we lunch for a bit and go back, by this time tiredness was setting in and in the hot environment of the hospital I was falling asleep.

I was called in, a doctor I have never met before, although he assures me he knows me as he was at a talk I did on transplant and organ donation (humm I wonder whether he's another stalker(only joking)) we sit down and the first thing he asks is have I had it, had it, had what? Had a baby? Did I look pregnant? No the op, did I have the op, humm straight in there with that are we, interesting. So I fidget in my seat uncomfortably and tell him that I actually really don't want the op as the surgeon scared the living s*** out of me, I blurt out all my fears and uncontrollable thoughts and he steadily looks through all my information, with my one big question, do I really need it? Well he explained the risks, which I knew already, I wish doctor would ask that before explaining away, a simple, do you know the risk of not having the operation if you do indeed have reflux? I could say yes then 5 minutes wouldn't be wasted of me going yes I understand that. I sit and go through the reasons I'm worried about the op, such as open surgery being a big op, with huge recovery times, iv just got recovered from the last one, yes al be it slightly more major, I also said about affecting my career, well everything.

So the first thing we looked at was my previous reflux test, he said it was positive, this is 2 years ago I had this test, when I was having severe symptoms, before my transplant, in which time my reflux has vastly improved, iv had some dodgy bout after my stomach bug but actually on the whole it's lots better. So we decided I needed to have a retest, also I would need a ct scan to see if I have any signs of chronic rejection from any possible reflux, then a lung biopsy to also check for rejection. He conversed with my consultant and came back at which my consultant had said they were surprised about the possibility of open surgery as they hadn't realised my former bowel surgeries and agree that they should retest first as open surgery poses many more risks, including infection due to weakened diaphragm and intercostal muscles.

So I heard what I wanted to hear, if the tests come back and If i need it then fine. Ill be straight In that operating theatre. The tests are all to be carried out immediately so that if there is reflux we won't be delaying the operation to much and no further damage will be done, iv also been prescribed higher doses of meds for reflux in which will prevent it as much as possible.

As for my lung function they weren't all that worried.

So that was it, the big appointment I was nervous about, I had no reason to be.

I will be writing a blog on a few other catch up things but just to let you all know I will be on itv west country today (Tuesday) at around 6pm it will be available on the Internet and ill post it here. It's for itvs 'from the heart' campaign supporting organ donation. It's an amazing step in the right direction and I'm glad to be a part of it and I even got to introduce and sign off my own piece a small step toward TV presenting.

So I will leave you all now, hoping all my readers are happy and well and if not I wish it for the future x

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