The Glass is Always Half....

...falling over! No seriously.

I began working full-time back in May but I never told my employers anything about my health status. I thought it would be easy to hide the daily pill popping, drug injecting etc. And to be honest, it was. But two things happened. I decided to go on multiple holidays (the most recent lasted two weeks), and my extremely generous employers let me do this. Of course, this meant I felt a bit guilty and so really try to give 100% all the time. And to cut a long story somewhat short, do not pull sickies or take any other days off. I work 9-5 and do over-time (unpaid I think...but I'm not grown up enough to work out what I'm being paid...) all to get the job done.

So seeing as I need blood tests every 6 weeks and review on average every 1-3 months (and that's just my set routine, which doesn't include any appointments for other scans etc going on) it was a tricky thing to work out how to do it. But masterful me, I came up with the idea of telling my employers I was going away a day earlier than I actually was, thus using these extra 'travel' days for my appointments.

I had it all figured out. Brilliantly. And then I began to get sick about a week ago whilst in Boston. Nothing bad, just....the start of a grumble in my chest. And it seems I've lost about 6 kilos since March (About a stone). So today being my 'travel' day, my clinic were pretty accomodating to get my bloods done but it seems the lung function lab now operate a strict 'Tuesday Only' opening slot for us clinic peoples. (Which seems ridiculous to me, so I shall sit back and complain about that to myself for a few weeks.)

Anyway, this didn't bother me, I just needed my bloods done. But then the doctor saw me, prescribed me an antibiotic and told me I *MUST* have my lung functions done in the next two weeks. I begged for September, but nope.

Considering I have been given the opportunity to travel across eastern Europe with friends for two weeks, having holidayed in America for two, been to France for one, all in this summer, I think my glass is most definately overfull and spilling over. And perhaps the teeeeeeensy price for this to pay is a few antibiotics and a few appointments here and there, and honestly, as hassle-y as it is to jumble around my schedule, and tell a few porkies I'll take it.

See....I'm not quite sure what I was trying to say or what the point really is. I'm like that, there's never a point!! I think perhaps I'm in one of my 'thinky' modes and remember back to the time where I wasn't off IVs for more than 2 weeks, tied to oxygen and simply couldn't plan anything.

Of course, I still can't plan anything, but that's for a different reason...I'm just too indesicive now. I think.

?

Hmm...

I went shopping today with my Mom. She was busy getting my stuff in different sizes because I am so awkward and every shop has different sizes. Interestingly I found my shape is much more balanced at the moment (as opposed to my size 6 waist and 10-12 top which used to be the case last year- eeek). And this is despite having lost 4kg (over 8 pounds) in the last 10days- spectacular.

So she's busy buzzing about. Then she makes a turn around the aisle too soon and bumps into a woman. She notices the woman carrying blouses, and she immediately apologises. It turns out she had walked into the mirror.

I think I need to watch her from now on.

The PICC line has been pulled out which is great. It was probably as long as from my hand to my shoulder, so realllllly long. They used it to get bloods first though and drew 20mls, as I just sat there, arm relaxed and chatting. I don't think that will ever happen again soon. My lung functions are at 98% (still can't get that extra tiny 2% to reach the 100 mark yet!!!) so fingers crossed that's it with the IVs.

I think the doctor was trying to make me feel better about myself, but he did say that he's telling all the CF people who come to clinic now (pre transplant) that they are to expect to have IVs at some stage post transplant, that that doesn't finish. They won't need them all the time like before, but they may need them once every while. I think in the same way that I believe all people with CF should be warned that waking up after a lung transplant does not give the immediate feeling of 'I can BREATHE!'. You notice it more in action, by way of talking and walking, but I found it very worrying when I wasn't suddenly able to take a 'magical' breath.

Anyway as I say I do believe he was trying to console me as I'm the only one I know who's needed IVs post transplant, but he has a point that sometimes if you want to get decades out of new lungs, then that all comes with the price tag. Either way, I'm happy. :-)

Last Dose

I'm about to clock on my last set of infusion pumps with the aim of being told I'm finished tomorrow morning at clinic. I might take a dose tomorrow morning on the way to clinic but probably won't.

I've come to the point where I feel I've reached the optimum results from these IVs. While my chest has improved, the side effects of the drugs have really taken their toll these past couple of days. I suppose putting something which smells like cats' wee (that's actually a FACT not an opinion!) into oneself three times a day when I've been so fortunate not to need to do this regularly for nearly two years has just been a bit much for me to handle. It harks back to the fact which I find amazing: that the body has the ability to adapt so well to something, such as taking IVs pretty much full time for nearly three years (excluding the regular IVs the 15 years before that), as I don't recall ever having much stomach illness while on them before.

I haven't much of an appetite since the weekend, my mouth is in bits from one thing and another, and last night I actually got sick. Getting sick when you've had a transplant is a strange experience as so many of the nerves in the chest-ish area are now gone and so there's no real gag reflux as such; and there's no real 'feeling' of 'OMGOSH I'm going to be sick!'. It just...happens.

I hope to have the weekend to recuperate and rest as if I'm honest, I really didn't do enough 'resting' whilst I was on these antibiotics. My slaves should have done their job better really.

Hopefully this will be the last course of IVs I'll ever really need. Hope all are well! x

G'day Steo!

...Who is in Australia.

I had a bit of an emergency at the weekend when I realised that I was seriously short of bits and bobs for my IVs. Typically it would be that I discovered this on Saturday evening. I rang the hospital to see if I could have my antibiotic more concentrated as I didn't have enough mixers (saline) to put it into. They couldn't tell me, so about 6 or 7 phone calls I got the go ahead that I could do that.

This morning I went across and got my dressing changed and I got to see the line for the first time. It's a lot thicker than I thought, but they kindly put a 'window' dressing on so I can watch it all I like now. It's a bit throbby since, probably since it's been touched but it's a lot prettier looking, although not quite the 'latest fashion' yet I don't think.

The good news is I'm set to finish the course on Friday (as I'll be unable to give IVs realistically from Monday for work reasons) but the bad news is that it's been hinted that the line will stay in place after this. I have NO veins for blood and it's been mentioned that in case I need more treatment in a few WEEKS time, it'll make things easier.

I've had a very sore throat (to swallow) since yesterday so maybe that's a good decision to leave an accessible vein, accessible. Other than that I'm in slow motion flying form!

Steo: the 'stamping the foot' mechanism was an involuntary twitch I used to have actually, which manifested itself when I was annoyed. Granny's magic sock thing was pretty cool too. For everyone else: this is the Granny whom I used to cheat at cards when playing against, taking advantage of her slight memory loss at the time. I was a good child really and my tactics were highly ingenious!

Clinic-y Winic-y *wince* part 2 !!!

At 2.15pm I went into the xray room and lay on a bed and everyone looked at my Second Belly Button. The doctor kept asking me questions but then kept cutting me off whenever I answered with a 'ok, ok, yeah, yeah, that's fine'. But he wasn't listening to my ANSWERS! So the questions got repeated again like 3 minutes later. Things like:

"Did they give you stitches when they removed this tube?"
"No. But I had it put in when I was-"
"-'ok, ok, yeah, yeah, that's fine"

3 minutes later

"So did you just have this put in for your transplant?"
"No, I had it put in when I was like 5 for night-"
"-'ok, ok, yeah, yeah, that's fine"

3 more minutes later

"So did you just use it when you were sick yeah?"
"No, I i had it put in when I was 5 for night feeding and when-"
""-'ok, ok, yeah, yeah, that's fine"

And so it went on. Bah. So I had layers upon layers of sheets put over me each with a little square hole cut out so they could still see Second Belly Button.

The procedure was to put a little catheter (kind of like a piece of tubing) into the hole and put dye in and watch on the screen and see where the dye travels to. The pain of the catheter was honestly, horrible. It wasn't a sting, it wasn't an ache, it was just dreadfully uncomfortable. I think only people who have/had tubes know what it's like, but I found it just horrible. I *didn't* cry though (!!!) but very dramatically shouted "Ow, ow, owwwwwww, owww, oh I HATE this feeling, oh it's awful, oh, ow, ow". I think I might have scared the doctor though, which quite frankly I didn't really mind doing. Maybe he's not a fan of drama?

Then the dye went in and we watched the screen and took photos. I didn't take the photos obviously, but the machine did. Honestly, I couldn't really see what was going on. I think I could see my stomach though, and obviously the dye. He had me roll from left to right and then it was over. It took 15minutes at most. He said there was a small something, something, something but he doesn't know what will be done about it and he didn't want to "cloud my thoughts with his ideas" (a bit fancy for someone who doesn't like drama!) so my clinic will tell me. Basically I take that to mean there's something but it's not serious and they mightn't treat it I guess.

So little Mickey continues to perform his party piece uninvited.

Then they gave me a chicken sandwich and water to apologise. Honestly, I'd have preferred my €10 parking paid for, but never mind. I then found out I lost my parking ticket anyway but Frank (the car park man who needs a name) just calculated the times and charged me.

Then I came home, napped soundly, EILEEN woke me, barged into my house with Noon and Mermaid (names obviously slightly changed there because I feel like it), sat, kidnapped me, we went and had food, then we dropped Mermaid back to her apartment, where I accidentally set off an alarm when leaving... and ran. I hope the alarm didn't cause too much hassle. Ooops. And while wanting to cry, I just laughed. In a very evil manner.....

The REAL Clinic-y Winic-y *wince*- part 1 !!!

This morning I was very good and got up nice and early and aimed to be in the hospital by about 9.30am. I had to have bloods taken as they couldn't get blood on Wednesday, do lung function tests and then have my Second Belly Button looked at via fistulagram (thing where they inject dye to see if there's some sort of permanent opening somewhere) which was at 11am. All in all, a simple plan which would see me out by lunch.

I drove, traffic was light and I ticked my first goal off of 'be on time' with glee.

Then I went to the blood testing department. There was a queue, so naturally I went up to the top, explained that I had been here on Wednesday and was instructed to come back today and I'd be fast passed up to the front. Or that's how I naively understood it to be. Then the secretary snapped at me and said "Yeah well luv, y'er still gonna have ta queue loike, ya can't be skippin' everyone else yano". Cow. And that made me nearly cry because I was feeling emotional for some reason.

*** I think that if the clinic cannot provide a blood taking service (which fortunately is rare, I'm told-unfortunately for me, I'm the rare one!) then one immuno-suppresseeee shouldn't have to wait in a public room where people with Goodness knows what are all waiting. As far as I understand it, the transplant clinic nurses do try their hardest to get the blood taking department to ensure transplant patients are fast passed, but unless they are dragged down (away from their work) each and every time to explain this it doesn't happen. The blood taking place should have a sign up in their systems or something, or even a sign around me which says 'SKIP ME UP'....or something. It's not that difficult, and I don't believe it's me being "Queen Bee", I think it's a reasonable request. *COMMUNICATION* ***

So blah, got the bloods done first time which was fantastic! (Tick number two) And then I went to lung function lab and my lungs are breathing 98%!!!!!!!!!! Whooop! So all's great!!! THEN I saw the dietitian about my poor sore tummy and it seems there may be problems along the lines of something deep inside is getting blocked and sending my system out of whack. (A type of DIOS for any medical peoples) I've never had this before so my understanding is a bit vague at best so don't take my word there.

And then I arrived in radiology for my fistulagram at the ripe time of 11am. Where I waited. And waited. And waited. Eventually I asked if I was sitting in the right area- I was. And at 12.30 I asked a nurse if there was a delay or what time I could expect to be seen at because my appointment was for 11am. "Yeah well they're only a guideline time, they're only a guideline" she said. I told her that yes, I understood that (d'uh) but it was now 12.30pm! I mean were they a guideline time or a guideline day?! After she snapped at me, I wanted to cry again. Badly. Because I'm an emotional ninken-poop today.

After that got around that I was WAITING, people came and talked to me and said it could be another 40minutes. (Again, with the wanting to cry) So I went off and bought a silly book, credit and came back. As I began reading my book, the nurse and radiographer took pity on me and came and sat and talked to me- While. I. was. reading. my. book. that. I. had. just. bought. because. I. was. waiting!!! So the €10 book went into the bag and I politely engaged them in chat. They were looking for the doctor to perform the test and were actually really nice. I think they felt bad for me really. The corridors become achingly quiet as it became clear I was the last one left. The staff were all leaving to go on their lunch, which is where the doctor went too. The nurse and radiographer stayed with me and talked and finally at 2pm word came that I would be seen soon.

And the next bit added to that bit is soooo long, I'll post it tomorrow...

But basically my final rant: We pay for our health service, both in our taxes, and some of us privately. It is a health SERVICE. So why do they always have the attitude that they are doing us a favour? Eh nope, we are customers and I really feel people should start treating us like that. Even on the most basic level of encountering patients and not snapping- especially if we are emotional ones!!!

If I turned up to a restaurant for 7pm and didn't get served until 1opm, would I go back? Eh no. Would I stay? Eh no. Forced to stay would I pay? If I could get out of it, eh no. But sadly there is only ONE health service that so many of us have no option but to use. So stop treating us like crap scraped off the bottom of your shoe. You are providing us a service not doing us a favour.

Can you tell my emotional state has turned to fury upon reflection?? And it's great to have a Dad who teaches you to stand up when things are not right.

Clinic-y Winic-y

This morning I slept in. There's a surprise. I was due in clinic at about 9.30ish but woke up at 9.40ish. I impressed myself at the speed at which I showered and dried my hair and SPEDDDDDDDDDDDDDDD down the road (in my car, to the bus stop) though!! Because of Dr Patrick Hillary's funeral in town, I decided to get the 46a because of all the "traffic" on the roads.

It seemed everybody copied that idea, but nonetheless I took the bus. The last time I took the 46a, the bus driver told me to get off as quite frankly, he wasn't bothered finishing the route - I am the last passenger after all.

Today, they finished it even earlier! (At the top of O'Connell st for anyone who's interested) It was reaaaaaaalll late by this stage but nice and sunny so I walked.

I went straight to the blood taking department where even I flummoxed the experts today. Three needles later and not one drop of blood means I return on Friday (I've got other business there anyway). The lady used a technique I've never seen before: Tongue sticking out, she held the needle like a jouster holds his pointy thing in a duel and took aim and fire. With limited success.

I then went back and because of my tardiness lung function lab was shut. So I'll do that on Friday as well. I told them all about my poor tummy etc, etc. Then I said I didn't want to see the doctor in charge of clinic today as there's nothing important I want to discuss and while with some doctors I don't mind going through the whole routine of "Yes, I'm fine. Yes, nice weather", others I'd rather just avoid. I do need to point out the doctor (who's name sounds a bit like a friendly ghost) who usually is there I adore. But he wasn't in.

So I got the bus, got back to my car and drove home. Then I went and got MacDonalds and went to college. We have a hippy who teaches us on Wednesdays so I was able to bring it all to class. Apparently MacDonalds has a smell though?? I've never noticed...

So in a nutshell, I have to actually get there on time on Friday! Grrrrrr