Monthly visit to Brisbane Consultants

That month goes so fast. I have just returned from Brisbane on Wednesday. All my blood and urine tests are done a week before we go down. They were all good. Well good for me anyway nothing drastic. No change in the prednisone dose. Still 3mg. Renal results, back up to 65% function, two weeks before had dropped to 40%. Seems that I need to drink more water as dehydrating can affect the results apparently. I now have to do these tests every two weeks and have the results sent to Brisbane.

The only problem at the moment is my weight loss. I have been eating anything and everything but I lost another 1.5 kg. I now weigh 59kg. Last month I lost 6.5kg I am 178cm tall. I really need to buy some new clothes and they are all to big. Even taking prednisone this is happening. My main consultant that manages me is making a booking for me to have a camera down my throat just to check and see if anything is happening. He said they will probably find nothing but they have to check it. I am the unknown. Maybe I am meant to be this skinny. Some of my friends are calling me rag. I just hang there.

Other than that it was a good result. They are also talking about after the next one then maybe only seeing them every two months. I hope so. I know I am costing my family heaps and all the time I have off work must be hard on my boss. I am not exactly what you can call reliable. So next visit to Brisbane is depending on a letter about that camera test when it can be done and they will book consultant appointments for the same time.

In the meantime I have been enjoying the warmer weather and swimming at the beach. I haven't been swimming for so long. A sh## bag hanging off you guts isn't the best. I am so glad that it is gone. I had a dream the other night that it was still there. Actually it was a nightmare.

Well I am off to bed. There is a whole new day tomorrow and i have some plans to enjoy it.

Back home again

We flew home today. Glad to be back.

I knew it, the doctors weren't happy with a few things. Weight loss - now I have to write down everything I eat, whatever it is for the next two weeks, then fax it down to my consultant.

Kidneys - protein loss improved greatly, but kidney function took a dive, and now I have low blood pressure. He has no idea what has happened. Took me off the latest tablet he put me on. I have to be retested in two weeks, if no change he wants me back in Brisbane before my normal appointment. I am getting pretty sick of all this. Why can't I be normal ha what is normal. It is frustrating not knowing what is happening to me.

I just want to forget about it. I do try hard.

Back in Brisbane again.

A month has gone so fast. I haven't been home much and when I have I have been sleeping. So now that I am sitting around at RMH between appointments I will update my blog.

What have I been doing? Driving, 4WDing. I got a permit for a beach near where I live. So most weekends I am there camping. I bought new tyres for my car. Now I am broke. I also haven't been to work much. I don't know why. I just can't see any future at the moment. Everything I do never turns out. I have had my video camera stolen, I got it for my birthday. Only had it two weeks and someone took it. I lost my wallet with $50 in it that wasn't my money, but given to me to pick up a car part the next day. It also had my drivers license and bank card in it. So I had to cancel the card and get a new replacement license. That cost me $26. Seems everything I do these days goes wrong. I am just fed up with everything. I feel like punching something. I just loose it in a snap.

I am back in Brisbane for a bone scan and my consultants visit. I was weighed this morning for the bone scan, I have lost 7 kg in a month. My consultants this afternoon I don't think are going to like that. I now weigh 56kg. But I also have a flu, so this might be the problem. But I can't eat much. I feel really hungry, start eating but after a couple of mouthfulls, I feel full. If I eat more I feel sick.

Nearly time to go so I will post later.

It's my birthday!!!! Finally 17 years old

Here it is my birthday. I am now 17 years old.

What did I do for my birthday? I had to be different. I spent the day as an outpatient in Royal Brisbane Hospital Xray Imaging Department being prepared, having an angiogram and then in recovery. I guess not many people have that hey! But I was allowed to return to Ronald McDonald House where I am right now. Good news though. The results of the angiogram, nothing wrong, everything looks great, so the nero consultant said. He did say he wants a MRI next year. "Next year" that sounds promising. I am happy with the results.

Yesterday I also saw the Thorasic registrar, (as my main consultant has left RBH and has gone to another hospital, I will miss her. I would have liked to thanked her) ancas are both negative, which is good. I have also had my steroids reduced again, now 10mg. I am also no longer on Asathyapran (immune suppressant) Great, less tablets. But then to my Renal appointment. Protein still not getting any better. Added a new medication plus keeping prindaprill, I am on 10mg morning and 10mg night. Mum knows what it is but she has already gone to bed.

Sleep in day tomorrow. Go home Friday and have a learner lesson to help me prepare for my driving license test on Monday. Plus the weekend to practise. I am starting to get nervous now.

Maybe when I get home Friday I will get a present for my birthday!! So far nothing. Oh well!

Busy Busy Busy

Since I last posted things have been going OK. Except last Monday, I ended up with a headache and came home from work and went to bed. By late the next day I was fine. The weather here has been cold so I am thinking maybe it is because the plate in my head get cold and that starts it. I really don't know.

I had a great weekend though. This weekend has been OK so far. I only have just over a week to got until my drivers test. I can't wait. But I am having my birthday in hospital having that angiogram. How lame is that! We have tickets to fly home on Friday, so I am sure hopeing that everything is OK and we do. I will be really pPPPP off if this doesn't happen. I have been waiting forever for this day. My freedom.

Off to Brisbane on Tuesday, fingers crossed they don't find anything.

Looks like I am off to Brisbane again

But not until 17th. My normal consultants appointments. Thorasic and Renal. Mum was contacted today by the Radiologist from Royal Brisbane Hospital, I am booked in to have this angiogram on the 18th. Yep, my 17th birthday. I just hope nothing goes wrong as I want to be back home before 23rd. That is Drivers License test day. So I should be coming back home on Thursday 19th. I feel well so I hope everything is OK. But nothing is going to stop me from taking the test. NOTHING.

Out of hospital

About lunch time yesterday I was let out of hospital. But we can't get a flight home until later this afternoon. So I am wasting time sitting around here at Ronald McDonald House organizing the rest of my weekend when I get home. I will only have one day of the weekend left, then back to work.

I have been having slight headaches, but I really think it is dehydration due to not being able to drink water when I was nil by mouth for two days in hospital. Yesterday when the surgeon came to see me he said he had requested the radiologist to contact me within two weeks to have the angiogram done. I have no idea what he means by that, if I have to come back to Brisbane to have it done or have it at home. Also he gave me an appointment card to see him here on 18th July. That is my 17th birthday, and there is no way I want to be down here. I just get so frustrated. I also am going for my drivers license on 23rd July. You have to book 6 weeks in advance, so I definately want to be here for that. After I get it I don't care if I have to come back then. All I want is my drivers license.

Today I want to get home then go out with my friends.

Still Waiting in hospital

There is no change in my time wasting. I have again fasted all day only to be told at about 4pm that I can eat. I did get a visit from a doctor who I don't know, from the surgeons office to say that they are in conference this afternoon deciding whether or not to do the angiogram. How many specialists does it take. I am starting to run out of time here, wasting time. I either want it done and move on or just send me home. Tomorrow is Friday. I hope they don't leave it too late and can't get me home. I have plans for this weekend starting tomorrow night. I have been looking forward to it ever since last weekend.

Bored! Bored! Bored! Running out of things to do, and that was yesterday.

In hospital again..............

I have been in Brisbane just for usual checkups. On Monday got the all clear from my surgeon on the last lot of surgery. Seems everything went well.

So yesterday we booked out of our room, our flights were already booked, I just had appointments with my renal consultant. Everything was great until mum mentioned the long weekend when I have headaches and vomiting for three days. He then rang down to the nero surgeon for advice what to do. He remembered me, and said even though it was over a week ago, he got to C-T scans organized, one was with the dye, then I was admitted through emergency and had a lumber punch. I don't know what the results are yet the CTs I mean, but the lumber punch was clear. They are checking for small bleeds, maybe just warning ones. After the big bleed last year they think it is worth checking. But I am so pi##ed off with mum. Why did she have to tell them. I don't know when I even will be allowed out of hospital now. Our flight last night was cancelled and mum managed to get back into Ronald McDonald House. I am back in my old room. Yep same room in Wattlebrae Ward. Even the staff still remember me. I was only here two months ago. I am waiting to have a angiogram. So as usual it is nil by mouth. People complain about hospital food. In all my stays I rarely get to eat it. I have been waiting all day for this angio, it is after 5pm now and still haven't done it. I just want to get home as I have things I want to do.

I really wished mum didn't say anything. Not sure what is going to happen. I feel well but hungry. Hungry Jacks sounds pretty good but they won't let me eat until after the procedure. I am very cranky. Still haven't seen my main consultant. Maybe tomorrow.

Back to Brisbane in a few days

Last weekend was a long weekend. I spent the Friday, Saturday and some of Sunday in bed. No wonder my mum and doctors call me the weekend warrior. Headaches and vomiting. I have no idea why except I felt like s##t. But I seem much better now but I still get nauseous. I am also finding it very hard to get out of bed. I am just so sick of everything.

I am still here !

I know, it has been awhile since I posted. My life has been so busy. After returning from my operation I stayed home for a week before I was able to return to work. No work, no money. Gets boring at home as well.

I returned to Brisbane for the usual consultants visits. I was unable to see the surgeon due to a last minute cancellation of my appointment, so I wasted a day. There was nothing Mum and I could do about it so we got on a bus and went to the city. Queen Street Brisbane. Heaps of people but nothing too much that interests me. I noticed there are a lot of EMO types there. I can never work out why these people look at life so differently. Why would you want to shorten what you have left. Waste of time in my eyes.

Saw my two consultants on the Tuesday. They seemed quite happy how things were going. No major problems.

Kidneys down to 81% and still putting out too much Protein. Dosage of medication increased yet again.

The rest. I still have a toe infection. Did more blood tests, but all other test results seem good.

Medication changes: Reduction of Azathioprine from 50mg to 25mg (Was on 100mg a few months back)

Reduction of Prednisolone: now on only 15mg

Returned home and back to living. My next Brisbane visit is for three appointments 18^th and 19^th June.

Generally I am feeling OK.

Looking forward to next month to hopefully get my drivers licence. Also my birthday next month as well.

My days in hospital

Friday, April 13, 2007

I was up early this morning and moved to have a shower as surgery apparently rang through and said to prepare me as they were sending wards men up to get me. So today is the day.

I got back to my room mid afternoon, relieved that it is over, but the pain is starting to kick in. I am on morphine. I don’t want to take it but, the pain is becoming too much. I tried talking on MSN, but I keep falling to sleep. I may be a bit better tomorrow.

Saturday, April 14, 2007

Had a bit of a rough night, but awake early this morning. I got up and walked to my bathroom. I have a single room, which is great I only have to put up with myself, and have my own bathroom and toilet. I am still on morphine, and the surgeon came to visit this morning. I am now on clear fluids. So at least I can have more that just a couple of icecubes to suck on. Seeing it is the weekend, I am back chatting on MSN and listening to my mp3 player. I tend to drop off occasionally though.

Sunday, April 15, 2007

Not really having a good day. Feeling quite sick. Slept most of the day.

Monday, April 16, 2007

Feeling good today. Very sore, but relieved. Went for a walk around the ward then back to bed. Something funny happened today. I go to sleep with my mobile phone in my hand as I am constantly texting friends. We I got out of bed this morning the nurse suggested I may as well have a shower. By the time I did and returned to bed, my sheets had been changed and bed made. I didn’t think about it at the time. Later in the afternoon I went to text some friends and couldn’t find my phone. Thinking back I knew I had left it in my bed. I asked the nurse about where the dirty sheets might be because I had lost my phone. Luckily there were still on the ward and put into their own bags for each room. They got the bags out, and the first one they checked as they pulled the sheets out my phone hit the floor. I don’t know who was more excited, me or the nurse. But all the staff seemed to get a laugh out of it. At least I got my phone back. The battery was flat, but a quick charge fixed that.

Finally on Wednesday 18^th I was released from hospital. Mind you I walked the 300 metres to Ronald McDonald House and spend the rest of the day sleeping.

Where is my surgery

Here it is Thursday. I should have had my surgery yesterday. I was at the hospital checking in by 6:30 am. Up to a waiting room on level 4 by 7 am. Shortly after I was taken to an office, which was prepared as a pre surgery room, due to them putting me into isolation, yet again. Seems that I haven’t been cleared from the CRAB… some in hospital bug. So they keep me away from other patients.. LOL It is OK by me as this way I always get my own room. I don’t have any old people put up with. But after waiting all day they cancelled surgery. So I am in Wattlebrae Ward in Royal Brisbane Hospital waiting for surgery today, maybe. Not holding my breath though. Seems they have more important things to do than me. I just want to get on with my life and get this thing fixed.

Other than that I am OK. I have a small infection in my toe which I am treating with cream. Hopefully this will heal. I have my computer set up here and am on the internet. I use my webcam when I am talking to people that I know. At lease I have something to waste time on. LOL. I bought my xbox down but in hospital I can’t use it with the TV’s so I guess my laptop will have to do and my mobile phone of course. I probably am not supposed to use it. But I do.

I am getting rather frustrated.

Easter Time is here

I was just reading through my previous posts here. I promised that I would blog more often, but I didn't. Many things have been happening in my life. I have been to Brisbane for monthly visits January, February and March.

I was excited in December as I had an appointment in January to see a surgeon to get my "corrective surgery". Seemed that it meant more to me but not to them. I had been stable for a few months and officially in "remission", only getting headaches occasionally which I worked out to be dehydration. As soon as I felt the slightest pain, I would drink more water. This even meant that I was up a couple of times a night to refill my water bottle. So being excited that the operation would be done before Easter as promised back in June/July. But on my January appointment to the surgeons I wasn't even put on a waiting list. They told me while I was still on my medication they wouldn't do it. It was a bit of a shock. Seemed that I was all alone on this. I can now talk about it, I was depressed. I do seem to suffer from what they call depression. LOL To me it is just that I am p###ed off! Sick of the whole damn thing.

But last month when I went for my monthly visits to my consultant and my renal consultant I also had an appointment with "The Surgeon" again... But he didn't turn up, I sort of expected something like that. Maybe he was sick or something. I do realize that I am only one of hundreds of people who need some help. Our health system is not the best when it comes to elective things. But a very proactive employee whom had consulted with my consultant on my case, got things moving. I had a pre op with a surgical registrar then later that day I saw the anethesist. Mum and I had to run to catch our flight home, but we didn't have a date when it might happen.

My usual monthly appointment for April is the 10th Yes straight after the Easter long weekend. Mum got a call from RBWH that my surgery has been booked for the 11th April. So I am happy that this is finally going to happen, but I just hope there are no spanners in my pockets this time. (An ongoing joke between me and my doctors) I don't want anything to go wrong this time. It is do or die time. This is the first time I have had time to think about what could happen.

So this will be my last post before I have surgery. Hopefully I will be posting within the week. I am taking my laptop down with me. I need something to take away the boredom.

How slack am I

I have been back to Brisbane for my monthly visit. LOL I really wish I did not have to do this, but, if I don't who knows what will happen. I haven't been that well since my last hospital stay a couple of weeks ago. But when we arrived in Brisbane last Sunday, I nearly vomited in the taxi, luckily they pulled over when I asked, as I fertilized a garden before getting to Ronald McDonald House where the friendly staff was waiting for us. After showing us to our room, I went to bed feeling nauseous with a headache. I woke a couple of times during the night but by morning was OK.

We did our usual visits to the consultants, but this time I had to see the renal consultant, my kidneys are doing weird things again. Too much protein by heaps and rising on previous tests. So more tablets to take and more blood tests. Back to my main consultant, not happy about the headaches and vomiting. Was thinking about keeping me there, but really did not want to as I seemed OK. plus all the blood tests were OK. They have had the CT scan sent down and are going to review it and mum is to let them know if I get sick again. But so far so good. I have had a headache since, but not too bad. I don't know what is going on with me.

I never did get to upload those photos, but I might have a go this time. I have never done this before. I mainly play online games on the computer. I met so many people from all over the world. But when I go to Brisbane, I have to play my xbox as I don't have adsl or a computer with me. I have been on the internet cafe, but you can only open one window at a time and the time goes so fast. Two dollars for 20 minutes. I am used to being on it for hours, and the time goes so fast. I would love to have access to free broadband with my own computer, but that is not possible. I hear over at the Children Hospital they have internet access, but when I am admitted I am in the Royal Brisbane. I also can't have my xbox in hospital as the TV system you have to pay for and there are no access points for it. Sucks.

I have been doing some fishing the last few weekends. One day I will catch a barra. one day.

This is where I go fishing for barra, but I have not caught one yet. But I will keep trying.

What a waste last weekend was

Here it is another week gone. At least this weekend I feel much better. I worked all week last week just to be in hospital for the weekend. I had a headache and vomiting. By lunch time I could not handle it any more. Everytime I moved, I was sick. But I was admitted at our local hospital under, I think, instructions from my doctors in Brisbane. A CT scan was done, chest x-rays, blood tests. Then attached to a drip yet again and up to a ward in the hospital. By late that night I was feel much better, and apparently all the tests showed that everything was OK. Maybe it was a 24 hour bug, don't know. But I felt like s##t. I was let out on Sunday night. But my parents would not let me go to work on Monday. Ah well you get that. So I milled around home all day Monday annoying my father. LOL But I went to work the rest of the week.

Mum just reminded me that next weekend we are off to Brisbane again. Blood tests to be done this Monday. I means that I have to squeese heaps of things in this weekend. It is raining at the moment, so I thought I would catch up on this. Suns out already, we didn't get much.

Home Again

I have been to Brisbane and I am back again. I love coming home.

The visit to my consultant was all good news. Well mostly, except that I will probably have to have Vitamin B12 injections every 3 months for the rest of my life. Oh well, you get that I suppose. But all other tests looked good. That is a relief. But more medication changes. I also have to return on 12th November. I won't be long and that visit will be here. Just a few things I have to do, one is getting my fitness up. I don't know how I am going to do that, I go all day every day doing things I want to do, and exerciseing is just not me. But I will see what I can do.

I stayed at Ronald McDonald House in Brisbane. It is right beside the hospital, so nice and handy. I guess I am a bit embarrast about how I look, but the staff at the house know me and I don't feel so bad. They remember how I used to look a few months back. (Better than now)

Anyway, I usually play me xbox, not much else to do, everything in cities costs money, so we did go shopping, mainly for some clothes as mine are too small. Mum got me some new boardies and shirts, at least now I can do them up properly. Everytime we go to the house, we are playing a game, which room will we get this time. Mum and Dad have been in quite a few of them now LOL, but the room we had was great, but the TV was an old one and didn't have the connections for my xbox But there are other TV's in the lounge area so I could have used them. But I play while I am in bed, so as not to annoy anyone. So no xbox this time.

But I have an elderly friend who has been raising money for the House, and he gave me $210 to take down and donate. I felt really good about that, they really need the money. All the cash donations given there are spent there, so to me that is great. I was so excited to do it. Hopefully there will be a bigger donation next month when I go down, but I was told not to get This is really exciting for him, he is just as wrapped as me. We would really love to make a difference for the people who use this place, including me and my family. You see early next year I will have to go back into hospital, I hope not before then, but I want to get this s##t bag off. It is so frustrating, now with summer coming, I usually love to swim, but too embarressing for me. Some people look at me like I am Herman Munster, you know with the bolts through his neck and a big scar on his head. I don't have the bolts but I have the scar.

I will blog again when I wish to talk to myself again. Actually one day I will look back at this is laugh. Well maybe not me, but someone will get a laugh out of it. At least I would have left some sort of impression on the web, as I am only a speck in the worldly scheme of things. LOL

Another month. Back to Brisbane tomorrow

I had not a bad week. Craig Lownes won Bathurst for anyone who cares. I do as he drives a Ford.
I am back to Brisbane Hospital and staying at Ronald McDonalds tomorrow. More tests and to see my consultant. Gets a bit boring, but I will take my Xbox, as usual. Hopefully I will be back home on Tuesday night. I feel OK, but sometimes I am the last to know what is happening in my body, until it is too late. I am taking the camera and going to take heaps of photos. The city and people, I live in the bush. Very different for me down there, but ok to visit, but I am glad to get home.
I will keep writing here just to let people know what is happening and how my treatment is going.

Another week blown to the weeds

I just read last weeks post. I was cranky when I wrote that. Actually I ended up having a half decent weekend. I went to the beach on Sunday with my family and some friends, where I was able to drive my car once we got on the beach. I love the ocean and the beach. But the sun really burns me, so I don't stay out too long in it. This was the first time I have driven on the beach. It was fun. I wish I had my drivers licence. After Christmas I will be old enough to get a learners, so I can't wait. I spend hours cleaning my car when I got home.

Last week went really fast. I have had no bad things with the new medication that I started last Monday. Only slight headaches by Friday, but it was probably just because I stayed up too late. Last night I had a couple of mates come out and stay over. We sat around a big fire and mainly chatted. We snuck in a couple of drinks. Mum and Dad went out to dinner.

But today is Bathurst. I love the car racing, and have spent most of the day watching it on TV. I go for the Fords. I am writing this as mum reminded me I hadn't updated since last week. The pace car is out and has got boring so I decided I would do this while I am waiting.

Next Sunday we are back to Brisbane. More tests and consultants appointments. I feel OK at the moment. But I still get a bit breathless, like last night when I was chopping firewood. I could not do much. But, I suppose you get that.

Racing started again. GO THE FORDS (Craig Lownes)

Well I got through that week

I have mostly been fine. Very snappy though. Sick of taking tablets. They are starting to make me sick again. What good things happened this week might be better. A bit boring last weekend, I don't see my friends anymore, I don't think they want me around as I am too much of a problem. They are all too busy to see me. Can't blame them. But I did go out in a boat fishing with my dad. Didn't even get a bite.

My bag is driving me nutz. I wish I were normal like everyone else. I have been spending time on my computer with some online games. Drifiting. I am tired though. New medication starts on Monday. More tablets. I wonder if they will make me sick to.

I got a digital camera last weekend. It is not mine but I have full access to it, so I will be trying to work out now, when I get out of the house, what to take photos of. Maybe start a photo blog. Yeah, who would ever look at it anyway. It is Friday, guess what I am doing on the weekend. NOTHING