Wednesday, May 22, 2013

Another year, another update

Another year has passed since I last posted. Scary how time really does fly.

In about six weeks time, it will be seven years since I had my life saving transplant. It still feels 'new' and I'm still pushing the boundaries of what my body can do. Just today I was at clinic where my lung function dropped a significant amount for the first time in years. Nobody knows why, but I'm not concerned; everything else looked great and unchanged, I feel fine and this evening I went and played rounders with a local team. I think it may be my abdomen being bloated as well as poor technique which didn't help.

I guess I would say I have now managed to reach a point in my life where I would consider myself living 'normally'. I now visit my clinic just twice a year (although I will now revisit next month), I work a full time grown up career job working for a company I have always wanted to work for, I cook and I clean, I stress out and I work hard to juggle it all. Thankfully, I am with someone who is incredibly patient, understanding, caring and supportive - and that definitely helps immensely.

Medically, I moved on to using an insulin pump a couple of months ago which has improved life too. I could happily continue plodding along this for the next seven years. Of course, the difficulty with plateuing (is that a word?!) so nicely is that niggling feeling at the back of your head that reminds you of the only direction you can go after this. And honestly, that feeling only rears its head when you show up to clinic and get unexpected lower than normal results. (I did cut that sentence out and re-paste it several times before deciding to leave it in; it's somewhat negative but also honest. So the honesty won out)

Thought I'd update just in case anyone randomly drops by or even stumbles upon here by accident.

Monday, February 13, 2012

A short update for anyone who still pops by almost 5 and a half years later!

This year has been an incredibly busy one so far (always a good thing). Health wise, a few weeks ago I was finally able to celebrate getting through an entire year not requiring IVs, the last time this happened was well over a decade ago. I came down with something a few months ago and was *certain* I was going to need some medical intervention, but luckily I was fine. My lung function while still high had dipped a little bit (not even anything significant but given my obsession for numbers and charts, *I* noticed) and stayed that way for a while. Then one day I went for a swim and noticed when I checked my lung function afterwards it had gone up marginally. It was then I decided it was finally time to give 'getting fit' a real go. When I told my friends about my plan, they decided too that it would be good if we all shaped up. Having this goal with friends by your side is *definitely* imperative. There have been several days where all I wanted to do was go lie on my bed and watch TV but because we agreed to go exercising, it meant that the exercising won out. I also took up running *gasp*. I'm not very good, but have managed to run just over 2 miles a couple of times a week so far. So every other day now we either swim laps or run. Not as 'un'fun as I imagined or feared it would be. And my lung function now is back up to its higher peaks. I would LOVE to get it to go higher to beat my own personal best so hopefully some day it will. But the benefits and good health of exercising are more important than the numbers anyway.

Other health aside, the digestive system is still continuing to rear its ugly head every now and again. And I'm still as useless as EVER at predicting and preventing the bowel blockages. Which means while treatment works, I'm not really sure if it ever clears it as I tend to let it go so bad.

*The next bit may be a bit TMI (as my 'cool' mom would say) so feel free to skip on ahead. Or if you want some insight into what goes on behind the closed doors of the stranger (me) you may sit beside on the bus and wonder why they may act crabby as though they haven't been sleeping, please continue to read*

The other day I was knocking back Movicol sachets every couple of hours until, worryingly, everything stopped working inside me. Total standstill. For those who are not familiar with Movicol, I would imagine if you have a healthy bowel then taking a few would put the fear into you of not wanting to be too far away from your bathroom for a while. Most over the counter digestive tablets go with the motto 'soothing, gentle relief from constipation'. Movicol goes with 'effective relief from constipation'. So it meant I had to move on the strongest stuff available to me, gastrograffin. Which worryingly, also didn't work straight away (cue minor panic and planning about what to do next!). I've read that most people who, from the first few minutes after swallowing, don't leave the house for the day when they take this . But I don't know, clearly I'm strange, as I never have reactions like that. For me it's like taking a sennakot or motillium really.

Anyway, short of the long, is that it eventually did work. I had to take the afternoon off class the next day as this stuff full on dehydrates you where you need to drink several litres of water while you're on it. For me to drink one glass of water probably takes an hour. And plus, everything aside, when it seems like a wise idea to knock this stuff into you at 3am, you tend not think about the fact that you pretty much don't spend much time sleeping afterwards. So while I am continuing to push my body to be fitter and stronger, it would seem someone else intends for me to embrace what 80 year old women go through. I am determined I'm not in need of the bed pan for another few years yet though. God forbid.

I hope you all continue to be well. That wasn't quite the 'short' update i intended it to be...

Sunday, January 01, 2012

I'm posting this here because I know I'll forget to.

Please take 20 seconds to vote for my friend Rob. You don't need to watch the video, just hit vote at the bottom!

He has come from behind to reach second place.

Thanks! xxx

Happy New Year

Wishing everyone a very happy new year! I hope 2012 see ambitions fulfilled and hopes realised for you all.

And most importantly, that you are all blessed with good health! xxx

Wednesday, November 09, 2011

I am still alive. I am (thankfully) still well.

Hoping to avoid the avalanche of flu induced ill health that was last Christmas, I got my flu shot early this year. While it would be nice to take credit for being so forward thinking and responsible, it was actually my GP who reminded me of it when I was seeing her for something else.

Unfortunately I developed a cough/chest infection two days later. I sounded like a smoker. With asthma. My lung function dropped way down. The timing wasn't very good, but luckily, with a lot of exercise (swimming) and some oral antibiotics, and the diagnosis of 'virus' from the doctor (which explained why the antibiotics didn't seem to work), I seem to be back on track again.

Throughout all that I became increasingly paranoid about other meanings for my symptoms. I think it's natural to be cautious and concerned, especially as time goes on with these things. But I will be seeing my consultant/team at the end of the month and hopefully they'll reassure me that there are no long term significant changes with my health. (I should point out that when I say 'paranoid', I don't mean 'freaking out', I mean passively jumping to conclusions about alternate explanations)

Apart from all of that, I have big exams next week. And a undergraduate graduation ceremony to attend right smack in the middle. It's the stress of life, but I enjoy the satisfaction of meeting these challenges, simply because I've been given the opportunity to be able to.

Tuesday, September 13, 2011

2 months to the day since I last posted. All is still (thankfully - touch wood) well. The Shingles passed, and I don't think there have been any long term side effects (I've heard that pain can be long term or life long or something involving the word 'long', but amazingly I seem to have escaped)!

I am now embarking on an exciting new adventure.... twelve whole months of productive procrastination! And I'll get a few more letters added on to the end of my name after it as well - always a bonus! In fact, I'm about to start a masters in neuroscience (the title is somewhat more specific than that, but, got to keep my stalkers at know how it is...). I litreally do NOT know what I want to do with my life. It's funny because five years ago I probably had a list a mile long of things I would do if things worked out well, but in fact they have worked out so well, it's like I have gone beyond the amazing and novel things to strike off that list, and now I have an actual *life* to plan. Shame, I'm pretty useless at planning!

So here's to hoping it all works out well. And if some random mystery illness that nobody has EVER heard of decides to land itself on me, well, guess it will add a bit of spice to my life!

Also, because we can't stay young forever, my brother (the BFg) is getting married to the G-raze! I am naturally highly excited about this! Plus, my actual sister and I really grate on each others' nerves regularly so it will be nice to have another sister! Congratulations to them both :)

Wednesday, July 13, 2011

Ooops better retract that 'K' and replace it with an 'S' as in 'S' is for Shingles. Exactly two weeks, one x-ray, one renal ultrasound, three blood tests, two urine samples, four doctors, and one rash (and two misdiagnoses) later... it has finally been confirmed that the mystery pain is from Shingles.

How do I feel? The pain is less than last week, but I still need painkillers at least once a day. And a rash has popped up at the site of the pain. So all in all (unless this gets worse) I feel fine.

The only remaining outstanding part of the puzzle is that two weeks ago, my white blood cell count in my urine was 100. And last Tuesday it had risen to 190. So I'm not sure what that means....

My only concern is that I have a friend who has never had chicken pox before and has a wedding to go to in ten days and I am HOPING I haven't given her chicken pox, because that would make me feel TERRIBLE.

Tuesday, July 05, 2011

I take that 'K' for kidney back; after much investigation of joints, hips, bladder, kidneys today at hospital, during a routine 'let's rule out any stomach problems while we're at it', turns out I'm actually quite badly blocked up! the point where paracetemol doesn't touch the pain. Oopsies.

Quite a relief really that kidneys are *touch wood* ok. They're still investigating the possibility of kidney stones though, but the pain and problems are a blockage. So now that I'm treating that, hopefully it will take the pressure off my abdomen and the pain will decrease.

While it's annoying this was missed on Friday and Saturday by two different doctors, I really should know my own body a bit better, however the only symptom I got was pain, so it was a tricky situation.

Anyway, 5 years anniversary last weekend, lung function 101%... I don't have much to complain about! :)

Friday, July 01, 2011

I hate it when i curse myself! On Tuesday I got a dull ache in my lower right back / hip. Convinced it was some sort of arthritic pain I figured it would be ok. Yesterday I needed pain relief and today I gave in and went to the doctor, so he could confirm I have some sort of osteo-arthritis (inevitable for me, considering the cocktail of drugs I pop on a daily basis).

However, the doctor swung my legs around and about and determined it wasn't my bones. It was my kidney. Amazingly I've never had a kidney infection (except that one time when my kidneys stopped working and briefly went into failure mode, but I was in bed when that happened and the morphine made sure I wasn't really 'with it' when that happened), but this is really, really painful!

Anyway I got drugs and I'll probably pop up and see my team on Tuesday. And I just ticked off the letter 'K' on my alphabet list of conditions and such I have managed to acquire. I already have osteopenia for the 'O' anyway.

Monday, June 27, 2011

Another Summer is well underway. The last three summers, I've travelled around, whereas this year I'm mostly staying put, since I'll be moving to another country in September.

Healthwise, I'm *touch wood* still doing great. I'm just home from my holidays, which were a LOT of fun. Although, at one point I looked heavily pregnant. I think it was a combination of greasy food, incredibly hot weather, dehydration, and a total lack of physical activity (which was inevitable since that was kinda the aim of the trip), but thankfully with a couple of movicals, this passed by the next morning. And more thankfully, at least I only LOOKED pregnant! I'll have clinic in a couple of weeks, 11 days after my fifth year anniversary - how quickly time flies!

I passed my exams, and was delighted that I came out overall with a first class honours. So barring any random ash clouds or volcanoes going off in Ireland, I'll be home to graduate in November.

This was just a short update, thanks for everyone/anyone (anyone?!) who still pops by from time to time :)

Monday, May 23, 2011

The Other Side

That 'mental challenge' seems so long ago now, forgot I felt that way haha. I'm officially finished college. I got accepted on to my masters of choice. I will get my results of my exams and all in a couple of weeks, fingers crossed I passed everything! I don't know my official thesis result yet but I do know I did very well, thankfully!

Apart from that, no news really. I may swig a bottle of Gastrograffin later, for the laughs. And to get rid of the pain in my stomach I've had the last couple of days...

Tuesday, March 29, 2011


When I did my lifeguard training, my body felt like it had been through hell and back for three days; that no matter how much I slept my body felt like it had not rested at all. That was the biggest physical challenge I have ever done. Some may argue that in fact I've been through a lot harder, but in reality, my body in my past medical endeavours - while extremely difficult at times- kind of just went along with the flow...ish.

In exactly 36 hours, I will hand up my thesis. This is by far the greatest mental challenge I have gone through. It's never ending; it's never right; it's difficult.

So if I EVER say again that I wish to put myself in the position where a thesis is required of me, please tell me no.

....I am referring to Monday, when I will be applying for a Masters. Someone save me from myself.

Saturday, March 19, 2011

I promise to try harder....

I once read -somewhere- that the man who lies is more honorable than the man who just avoids telling the truth, because the man who lies has convictions. Or something? (I'm not sure if 'honourable' is probably the right word there...anyway I got what the guy was trying to say) I should really close this blog down if I'm not going to blog....or leave it open, but blog. As per usual, lack of blogging can be put down to being well and being busy.

In my defense, I did log on last week to update, but then, something happened, I don't know what, but I got distracted and ran off.

I have one week to go before I submit my final year thesis. How scary. Four years have flown by, and in many ways I feel so much older now when I look back. But most of the time, I feel as immature as ever. Last week I paid child's fare on the luas (passing myself for 15 years or younger) and actually got stopped by an inspector who said nothing, but then threatened to throw the sixteen year olds sitting behind me OFF for trying to fool him. I felt a pang of guilt about that one considering they were probably only a few months over the age limit, unlike my EIGHT YEARS ...oops.

My health has been good since January. Another blip with digestion, which I think I caught early, time will tell. I got two bad migraines last week (bringing my lifetime total to three) where my sight completely went screw ways, so I need to go to an optician and get that checked out. In fact Specsavers sent me some reminder something through the post that same day but ironically I couldn't read what it was they were telling me I should have done.

I lost my diabetes blood sugar monitor for a few months there, so got myself another one and have really worked hard at controlling my sugars. I'm proud to say that's going well. I had my thyroid function checked (at this point, I have no idea why they wanted that looked at, probably to find something wrong with me beginning with the letter 'T') and that was fine.

Last week I won an ipod shuffle. So I'm going to try jogging again soon. Because the shuffle won't be as annoying to lug around as the iTouch is. And that's the only reason why I am not a cross country champion by now, obviously!

So many a grand plan, many things going on, once I hand in this thesis I feel I will have accomplished SOMETHING anyway. I will try and update again next week.

Tuesday, January 11, 2011

I feel a lot better than I did a few days ago, and indeed, this time last week! I'm just tired. Very, very tired. Not in a need to sleep kind of tired, but worn out kind of tired. I think of things like going to get a cup of tea and in my head it takes me seconds to get to the kitchen and boil the kettle. But in reality, my legs and back seem to move so slowly and when I'm walking, it feels I can go no faster.

I feel like I'm getting so much better and then I see myself in the mirror and I look like an old lady! Although an old lady with a normal looking face it must be said; the one which looked pale and swollen has gone, thankfully!

I think the Tamiflu (which I stopped today) or the IVs have left this balm of nausea just below the surface too. So I'll be happy when I finish treatment some time this week. Or happier still when the PICC line is removed. Because then mentally I know, it will mean I am better. I had the whole site dressing changed yesterday and having been cocooned for a month in the exact same spot, it's now really tender to move it in any direction except the one it can stay in for the longest.

While the PICC line is great because it means no hunting for a vein, and things can just be done hassle free, in my head it also means that IVs are a quick option. "Hmm, maybe you need IVs...oh you have a PICC? Ok well here's two, take them three times a day for ten days" kind of thing. Not that that's how decisions are really made but still.

Apart from that, I'm taking this week off college; it's the first time I've decided to take time off like that in advance in my four years. I'm sure I'll regret it next week when I have a mountain to catch up on, but oh well!

Ps: I'm reading A Thousand Splendid Suns by Khaled Hosseini at the moment and it's excellent. It's the second book I've read in about eight years - the one good thing about being sick is it leaves you lots of reading time!

Friday, January 07, 2011

NEVER blogging AGAIN


Talk about jinxing oneself!!!!!!

I've felt for a while now that I only ever seem to blog when something is going amiss with my health. Probably because when something is going amiss with my health, I'm generally stuck at home and have tired of refreshing Facebook over and over again.

Anyway my health WAS good until hours after I posted the last day.

Then I went to clinic. Everything on the check in assessment looked good. Had my PICC line flushed, blood taken. Wouldn't be needing that bronchoscopy. There was talk of removing my PICC line. I went to wait to see the doctor and......BAM. Suddenly it felt as though the world had jumped into a freezer. Nothing would warm me up. So my mom (who normally doesn't accompany me on such dates but did so on this occasion in case I was having a bronchoscopy) asked for a thermometer and sure enough within about half an hour, I had developed a temperature.

So I got some paracetemol but just felt worse. An hour later my temperature was still climbing and it was suspected I had contracted the dreaded swine flu. I would start Tamiflu; the PICC line would stay in; I would start more IVs (at home as there were no beds which was fine because the thought of having to say no to every hospital "meal" offered made me feel even more tired) and go home to bed.

At home, I got worse, threw up, temperature persisted, my face felt like it had been punched by a double decker bus, I could only really open one eye, I felt plain miserable.

Then yesterday evening, I began to feel better.

BUT me being the complicated me couldn't ever have things run quite so smoothly.

I had a phone call from my team (who I was keeping in contact with twice a day since ideally I would have been in hospital) to say that my PICC line actually showed a growth of e-coli. I don't really know what that is except it isn't too good. Except that as it happened, the IVs I am on are used to treat that kind of bacteria anyway.

So the PICC line has to come out. But then there's no way they'd get another one in. And if I'm feeling better it means the antibiotics are working. So maybe it's ok to keep it in for as long as I continue the upward trend, they think. I still feel really, kind of weak. And tired. But it's only been a couple of days to be fair.

So what about the swine flu? Well, apparently it would seem this 48 hour drama was actually a line sepsis, which all kicked off when the nurse flushed my line at my initial check-in assessment. I'm still waiting to see if I actually tested positive for the h1n1.


...ok well maybe, to be continued would be better!

Sunday, January 02, 2011

It's been over two months since I've blogged, apologies if you're the one person who still checks in here! I guess over the past year or so, my life has become rather monotonous...while not necessarily mundane; but follows a fairly normal routine, with normal goings on. Which if people wanted to read about, well then they could probably write in their own diaries and read back. That's not to say life isn't exciting - it is - but I'm so thankful and grateful that my life has reached a rather predictable plateau.

My health has been good. Not perfect, but good. I have a much greater control and understanding (and acceptance) of my digestive issues which I felt utterly plagued by in the Autumn.

The only unwelcome health wise issue that cropped up was that I developed pneumonia at the start of December. I became symptomatic fairly suddenly (with chest pains) so luckily got myself sorted rather speedily too. I spent two weeks on ivs, and while I was certainly almost near perfect afterwards, I wasn't *quite* perfect. So I got to spend the holiday season with a lovely PICC line Christmas decoration in my arm, which I have become pretty accustomed to now. Funnily enough, the reason for keeping the line in was because on Tuesday I have a follow up appointment (I think a two week check up?) and if things are funny again, they'll want to do a bronchoscopy which requires a touch of sedation, and they don't want the hassle of finding a vein!

Last week, I picked up some relative of that nasty virus that went around. It only lasted 24 hours, but now I'm coughing again. It's understandable since I don't have a great immune system for shooing these things away. And the Christmas season, whilst not the ideal time to be sick, actually reminds us of how lucky we are to *only* be dealing with a virus. Having a crappy immune system is the price I am very much willing to pay, considering the 50 other weeks of the year I am able to run about as I wish. One must not get greedy!

So apart from all that, I took up a temporary job in December, just for a few weeks which I hope to go back to in a couple of months. I'm also writing a thesis. Which I thought would kind of be like writing an essay; it would take a few all nighters and loads of diet Coke. I think that plan is becoming less and less feasible as the weeks pass by. I'm also in college full time. And also going out. And getting away. And having fun, too.

So yes, setbacks like to set in every now and again. But the trick is working out how to get and do what I want and working around the set backs. Or just throwing a load of antibiotics down to deal with the set backs and concentrating on living life :)