Ms SuperPops

New Toy

2012-02-25T21:11:00.000+11:00

I had an appointment with the Respiratory Specialist last week. Not much has changed, but we ended up having a bit of a chat about all of the extra stress my heart is under due to the state of my lungs.

I already know that my heart is enlarged and I have secondary pulmonary hypertension. During the day, if I'm sitting still, it pumps along at about 100 bpm, trying desperately to push oxygenated blood around my body. What it does at night is anyones guess!

But in the interests of finding out, there were two choices:

Invest in an overnight recordable pulse oximeter so that I could monitor my oxygen levels and heart rate overnight
Go to hospital for an overnight stay and monitoring

I guess you can imagine which one I chose!

So, here are the results from the first overnight study on my normal overnight oxygen flowrate - 2 litres per minute.

I have terrible trouble getting to sleep every night, so the first hour of monitoring I'm probably just lying in bed tossing and turning and still awake.

It looks like my oxygen level and my heart rate both drop once I'm asleep.

So the next step is to turn the flow rate up to 2.5 litres per minute overnight and see what effect that has.

...to be continued

That anxious feeling

2012-02-09T19:24:00.000+11:00

That anxious feeling I wrote about a little while ago still hasn't retreated.

The rational part of my brain knows why it's happening. It just hasn't managed to work out how to switch it off!

It all seems to have begun somewhere around Australia Day this time. I made it through Christmas and New Year without any problems, but then everyone around me started talking about going back to work and sending the kids going back to school, and it just managed to re-inforce to me that I don't really have any direction or any plan for the year.

I know that lots of people don't like their jobs, but I've always loved working. I really liked my career and the people that I worked with. I was in tears when I had to hand in my resignation. I really just wish I could get up and go to work every day like I used to.

I had an appointment scheduled at the Transplant Clinic today so I booked an appointment with the Social Worker beforehand. It's really helpful to just be able to have a chat with her, and talk about how I'm feeling.

Apparently it's quite normal to have a heightened level of anxiety while on the list, especially when you're a person who is used to being 100% in control of everything that happens in life (just like me). It only takes a tiny ripple, a little comment, a thought, a passing remark, to tip that anxiety over the edge.

I've been avoiding the online world of twitter and facebook for that same reason, and I unsubscribed from all of the news feeds. Even just reading about all the bad news in the world was making me feel worse.

I know that I've been holding back on what I want to do creative business wise, as I know that once the call comes I'll have to close everything down for a certain amount of time. I'd also decided not to book into training courses for the same reason.... and that this is just making my anxiety worse.

Holding back isn't working so the plan now is to just try to keep living life and keep working on my creative goals. If I get the call when I'm in the middle of a project or a training course, then so be it. I guess I'll just cross that bridge when I get to it.

Trying to be a PATIENT patient

2012-02-01T22:18:00.000+11:00

I'm finding the start to this new year a real struggle.

For me, traditionally the new year has always been a time to have a lovely summer holiday, and then start afresh and plan for the year ahead....

But, I'm stuck in limbo, and I can't do anything like that at the moment, and it's throwing my inner control freak self totally out of kilter. I'm sick of scheduling appointments, making sure I have all my prescriptions up to date, counting how many oxygen bottles are left, and working around the routine of nebuliser treatment three times a day.

Each night I go to bed, wondering whether the phone is going to ring, and hoping that I go to sleep. I work hard on trying to make sure that the horrible knot of anxiety doesn't linger for too long.

There's nothing I would like more, than to pretend that I've just been having a summer holiday, and get up tomorrow and be able to go back to my old full time job. I loved the routine. I really liked the people I worked with.... and of course I always loved payday.

I've learned a lot of patience from having to deal with this for the last 22 years, but waiting for a transplant requires a WHOLE lot more.

Back to Transplant Clinic

2011-12-15T21:11:00.000+11:00

So today was the first transplant clinic appointment since the false alarm.

Being at that clinic is quite bizarre. It's like a giant gathering of oxygen bottles, with lots of whooshing and beeping and people looking at each other in a strange manner..... trying to work out why they're there, but far too polite or embarrassed to ask.

Lots of really sick looking people. People who can't breathe adequately enough to even walk anymore. Needing a carer to push them around in a wheelchair.

It makes me feel a bit out of place - like I'm not actually sick enough to be there.

There's an entire array of medical professionals who are part of the transplant team, so at each appointment, you see a different doctor.

Today my appointment was with one of the doctors that I hadn't met previously. She explained that the type of false alarm that I had was quite unusual. I'm assuming that most false alarms don't make it as far as lying on the operating table prepped and ready to go for surgery....

As we were staring at a CT image of my lungs on the computer screen, she also mentioned that I'm quite an unusual and complicated case, and that they're probably going to need two surgeons instead of the usual one, as it's going to take quite a long time to chisel away at my lungs to remove them. Years and years of scarring plus previous surgery means that it's much more difficult. Oh joy.

Anyway, who knows what will happen next.

I've had this really strange feeling all week that I'm going to get a phonecall... I wonder?

Proof

2011-12-01T20:53:00.000+11:00

My bag REALLY is finally packed...

Packing a Bag

2011-11-27T21:28:00.000+11:00

I've been really slack.

Five weeks have passed and I still haven't packed a bag.

I have made progress though - I bought nice new undies (I figure I'll be flashing my bum a lot in the first couple of weeks), and a nice new dressing gown. Hopefully that'll cover the gaping back in those lovely hospital gowns that I'll be forced to wear.

I'm still not prepared for the complete lack of modesty that goes along with being cut open from side to side right under my boobs. Ouch.... makes me shudder just thinking about it.

Anyway, I definitely need to pack a bag tomorrow.

My sister is off on holidays for a week, so if the phone rings in the middle of the night, my brother will need to take me to hospital. I don't particularly want him rifling through my underwear drawer trying to pack a bag while I'm showering in preparation to leave!

I think he'd be just as embarrassed as me!

Going to Rehab with Alfred - A Guest Post by Leela Rottman

2011-11-16T12:41:00.000+11:00

I've been meaning to share this blog post for weeks. I'd asked Leela about it the day before I received that phone call.... but I digress.

One of the best things about being online is being able to connect with others who are facing a similar situation.

I discovered Leela and her Heart Lung Thing Blog via an article that she'd written for the ABC Ramp Up website. Then via chatting on twitter, I realised that I'd seen also her seen her on QandA, when she'd asked a question from the audience.

Leela has Pulmonary Hypertension and is currently stuck in hospital. Even though we have completely different medical conditions, we're both facing very similar futures.

I really wanted to share one of Leela's articles because she's a fantastic writer. The way that she can put this crazy medical situation into words astounds me.... especially considering the effect that low oxygen levels have on our brains!

Anyway, thankyou Leela for letting me share your article here...

Going to Rehab with Alfred

Posted on October 20, 2011 by heartlungthing

Recently, I’ve been going to pulmonary rehabilitation.

I’m getting fit and taking charge. I’m becoming an active, engaged sick lady; doing my bit for our staggering health system by comandeering my own wellness program and revitalising my… Er, vitals, I suppose.

But pulmonary rehabilitation is not as thrilling as it sounds. It takes place in a huge echoey gymnasium in a building next to the Royal Prince Alfred Hospital. People, most of them in advanced years, shuffle around, coughing with the pathos of consumptives in 19th Century novels.

Some of them slump in chairs and tell me sad tales of How They Ended Up in This Place. Some of them are on walking frames hooked up to oxygen, and are urged on by sporty-looking physiotherapists with stopwatches. The physiotherapists call out encouraging phrases such as, “Looking super Meryl!” or, “Just one more lap, Bernie!”

Even worse, is the fact that when I’m similarly hooked up to an oxygen hose and walking frame, the oldies seem to overtake me at astonishing speeds. They can really rip around that gymnasium when they want to.
But it’s not all bad. For example, on my first visit I watched in awe as a tiny little old lady with huge owl-like plastic glasses (the envy, I’m sure, of many a Sydney hipster) sat down at a weights machine and proceeded to lift incredibly large and heavy looking weights many times.

Impressive.

And the physiotherapists are actually pretty nice. And I have to admit that when I’m walking in endless circles, being overtaken by numerous old folks, and a physiotherapist yells something encouraging, it actually helps.

The physiotherapy itself is relatively easy; they don’t work you too hard in-case you get too tired and end up worse-off than when you started. But progress is slow. And it’s difficult to get there.

Because there is an odd lack of disabled parking near the hospital, I drive my car to a nearby bus stop and catch a bus that wends its way through Lewisham, Petersham, and Newtown before letting me off at Camperdown. For the first few times, I assumed it would be incredibly boring and took a book to read. I had, however, forgotten the endlessly fascinating soap-opera of inner-city public transport.

Old ladies with brittle mauve-coloured perms who sit straight-backed and vigilant, handbags perched on their knees like well-behaved lap-dogs, murmuring to each other about poor Ethel who finally went into the home last week.

The large woman who, breathing heavily, staggers in on crutches then heaves herself down across two seats and proceeds to tell anyone listening graphic and rather gory details about her latest knee surgery.

The woman with brown-stained teeth and rather a lot of plastic bags who keeps a stash of pressies for a little girl who embarks two stops later. Every week the little girl lets out a shrill scream at the sight of Santa Clause Lady and imperiously demands that she hand over the goods. Last week’s present was a long rectangular box of smokey grey and blue eye-shadow.

I do have to be careful. I can’t get too distracted pondering the age-appropriateness of eye-shadow for five-year olds, because it is vital to keep an eye out for my bus stop. Missing my stop means walking up several long hills and alternating between cursing myself for my stupidity and wishing the disability pension could stretch to a Sherpa Guide and donkey.

Finally, the bus pulls up outside the Royal Prince Alfred Hospital. I then walk fifty meters or so downhill to the building containing the physiotherapy department, which happens to be right next to the Alfred Hotel.

This Prince Alfred must have been a top bloke. Imagine that; being commemorated by a hospital and a pub. Here is a picture of old Alfie. Didn’t he have splendid whiskers?

Sometimes, making my slow ‘walk, walk, stop, catch-breath’ way up the steep disabled ramp outside the building, I imagine his Highness cheering me on with impeccible British aplomb, “You can do it old gel, by Jove!”

After rehab, perhaps he would shout me a celebratory schooner of lemonade at his pub and apologise for the lack of a disabled lift. “So sorry old gel. We hadn’t invented elevators when we built that place. ‘Twas a positively brill effort on your part, however.”

Two Weeks

2011-11-04T21:12:00.000+11:00

I'm not quite sure what I should be counting now.

Two weeks since that near transplant experience, or nine weeks and two days on the waiting list.

The bruising on my neck, arms and wrists is subsiding, but I get a really achey back each night from the ten epidural attempts. My back is itchy, but when I scratch it, it's numb. It's very bizarre.

After ten days, that horrible nauseous anxious feeling finally went away. I've been able to start eating properly again this week, but the waiting feels different now.

It's made it even harder to make plans, or committments to anything, because now I know for sure that when that phone call comes, I have to just drop everything and go. Some people face years of this. It doesn't bode so well with my control freak / always maintain committments and promises type personality.

I've had lots of weird and wonderful comments over the last couple of weeks. Some people really don't understand how organ donation and transplants occur.

Hmmmm it's been interesting to say the least....

Distract Distract Distract

2011-10-29T07:00:00.000+11:00

That's what I've been up to this week..... doing everything I can to stay busy and distract myself, hoping that this horrible sick anxious feeling will go away.

I went in and had a chat with the Transplant Social Worker yesterday. My reaction to the situation is completely normal after such a traumatic event. I have to be extremely careful not to get sick, and not to lose any weight. I need to keep my extra few kilograms of buffer weight before transplant. I'm forcing myself to eat once a day, even though I feel like I'm going to just throw up.

She confirmed that my distraction technique is a good one - keeping my mind busy every day.

I also visited a lung transplant recipient friend who is currently in hospital yesterday. It's so helpful to be able to chat with someone who has actually been through the experience and knows exactly how you feel. Even though I was supposed to be visiting to cheer her up, she actually helped me!

Fingers crossed that things will improve this week.

The Aftermath

2011-10-25T20:16:00.000+11:00

Packing myself on the way into the Operating Theatre

It's been a strange few days around here. After all the panic and stress and tension and fear, I came back home with lots of needle holes and bruises, and still a little bit high from the lovely calming drug that they gave me in theatre.

I haven't been quite sure what to do. How do you just go back to your normal routine? Everything still seems a little off-kilter.

When I think about it, I feel nauseous. I can't eat. It's the same feeling I had after a traumatic event a few years ago.

I was supposed to do some contracting work this week. I had to cancel.

I remember lying on the operating table. I was all prepared and ready - all the lines were in and all the monitors were attached, and I was thinking about how there was a family somewhere who lost a loved one early Friday morning.

It all just seems surreal now, like it didn't actually happen, like that phonecall was just a dream in the middle of the night.

Tomorrow, I'll go and have my intragam infusion just like I always do, and Friday I'll go to Pulmonary Rehab just like I always do.

Routine is good. Structure is good. Control is good. Did I ever mention how much I hate surprises?

Oh What A Night

2011-10-21T18:06:00.000+11:00

Well if you've been on Facebook or Twitter today, you've probably already heard all about all of this excitement and drama.

I was in sound asleep in bed thismorning when the phone suddenly rang at 4AM. Virtually no-one has been given my home phone number, so even in my half-asleep stupour, I knew exactly what that call meant.

The Transplant Co-Ordinator was on the other end of the phone telling me that they had found some new lungs for me, and that I needed to be at the Alfred by 6AM.

It probably took ten minutes for it to really register. I quickly called my sister. She asked me if I was 'tricking her'. I wouldn't call anyone at 4.15AM if I was just tricking!

Then came the mild panic - I was completely unprepared. I never expected to receive a call this quickly.... it's only been 7 weeks.

I jumped in the shower and covered myself in Phisohex (including my poor hair), got dressed as quickly as possible and then thought about what else I needed to do. My sister arrived and packed my bag as I did my nebs, tried to close my online shops, emailed stockists, emailed people waiting for orders, emailed my physiotherapist.

I think we finally made it into the car at 5.15, and headed towards the city. I called each member of my immediate family, and then spent the entire trip writing instructions - leave money in the meter box on Wednesday for the gardener, call to change certain appointments etc. Then I had to write a massive list of all my bank accounts / online accounts etc just in case my sister needed it. There was so much that we were already in the city by the time I'd finished.

Arriving at the Alfred, we headed straight into emergency and around to x-ray for a couple of chest films, then it was up to the 5th floor to start preparations.

The doctor put in a cannula and took bloods and filled in the paperwork, and I received my first dose of anti-rejection meds. I then just had to wait until theatre were ready for me.

At 8AM we headed down to theatre. It was at this point that I had to say goodbye to my sister.

Once inside, all the preparations began - lots of monitors connected - a line into the artery in the wrist to measure O2 levels, another large line in the arm for fluids, four lines in the neck, and five attempts at an epidural. Unfortunately due to my bone density problems, I've lost height and my vertebrae are too close together causing a nightmare for the poor anaesthetist.

The next step was to put me to sleep, but this doesn't happen until the new lungs have been inspected by the surgeons.

Unfortunately at 10.30, upon further inspection, it was found that the lungs couldn't be transplanted.....

Yes it's disappointing, but I need perfectly healthy lungs to give me a chance of a good outcome. I still have time and I'm quite sure that my new lungs will come soon.... and at least now I know exactly what to expect!

Not that sort of rehab...

2011-10-20T21:27:00.000+11:00

I don't know if I've ever blogged about Pulmonary Rehabilitation. I wrote an article for DiVine recently but it just gave a very basic overview.

Anyway, the local hospital that deals with all of my inpatient admissions classified me as a HARP patient in 2004 (meaning that I'm at high risk of taking up a hospital bed on a regular basis). Lucky me.

I was referred to the physiotherapy department and began a pulmonary rehabilitation program. At this stage, I had no idea why I needed a fitness / education program. I was working full time, travelling for work, living a fairly normal life. Luckily the medical professionals were a step ahead of me, and knew what was lying ahead.

The hospital gym program normally runs for 8 weeks, and then you have the option of joining a community run group. The sessions are run as a group of around 6-10 patients with 2 physios, and each person stays for the 8 weeks before moving on.

As I was always going to be heading towards transplant, I've been allowed to stay on within the hospital program under medical supervision. I'm extremely grateful because it's wonderful to be able to review my progress with the physio on a weekly basis. A small change in fitness can be an early indicator of a problem.

I started in the program at the age of 30, and I'm now 37. In the last 7 years, I've literally met hundreds of patients who have been through the program. I'd estimate that 90% would have been over the age of 60 and ex-smokers.

I can't really explain the experience much more than that tonight.... but I have a very special guest blog post coming up next from someone who explains so much more eloquently and more humorous that I ever could.

'Til then!

Following on with the story this week....

2011-10-01T13:57:00.001+10:00

I'm sure everyone is now up-to-date with the lung transplant funding crisis this week, but there are a couple of really good articles in the Age today.

Lack of cash could de-rail transplant program
Politics at play in the Gift of Life

I'm going to add links to all of the articles from this week, just as a reference point:

Sept 17, 2011 - Lung transplant cutback plan beggars belief

Sept 22, 2011 - Transplants under funding pressue

Sept 24, 2011 - Alfred closes the door on transplants

Sept 24, 2011 - Longer wait for lung transplants

Sept 27, 2011 - Patients wait for lungs as political spat grows

Sept 29, 2011 - Lung patients breathe easy as program resumes (and by the way, this is a ridiculous headline as no-one waiting for a lung transplant is breathing easy)

Oct 1, 2011 - Lack of cash could de-rail transplant program

Oct 1, 2011 - Politics at play in the Gift of Life

I'll keep adding to the list as the long saga continues....

A Call for Help

2011-09-22T22:58:00.002+10:00

I just arrived home from the Hello Etsy event that was on tonight, to find the following email in my inbox from the Heart and Lung Transplant Trust (Victoria) Inc

Page Link

The Age newspaper reported on 17 September that The Alfred is considering restricting the number of lung transplants it performs due to budgetary constraints.

Read the full article on the Age website here and a further article dated September 22nd here.

If there is one issue our Trust should take a stand on it is this one.

As we all know, transplant is lifesaving surgery and the suggested reduction in the lung transplant program will mean likely premature death for some of those on the waiting list. In addition, it will also have an adverse impact on donor rates which defeats the purpose of recent government expenditure and advertising that has gone into this great initiative.

The Trust is deeply disturbed by this report and is considering how best to address the issue with The Alfred and various government stakeholders.

The Committee urges all members to take up this fight with their State government representative.

We would also encourage letters be sent to the following recipients:

Minister for Health
The Hon. David Davis, MLC
GPO Box 4057
Melbourne
Victoria 3001
david.davis@parliament.vic.gov.au

Premier of Victoria
The Hon. Ted Baillieu, MP
Office of the Premier
1 Treasury Place
GPO Box 4912V V
Melbourne
Victoria 3002
ted.baillieu@parliament.vic.gov.au

Andrew Way - Chief Executive
The Alfred
P.O Box 315
Prahran
Victoria 3181
Andrew.Way@alfred.org.au

Members may wish to use the following wording to help their drafting.

Can you spare 15 minutes for me.... please?

So what's it really like?

2011-09-16T21:36:00.000+10:00

Beware - Whiney Post Ahead!

I get bizarre comments from people all the time (this week it was at the Supermarket and at Captain Snooze).

Most of them are along the lines of "Gee that must be a real pain to drag that trolley around everywhere you go?". Ummmm well of course it is! I don't do it for fun and hi-jinks.

But I think the thing that I find even more frustrating is that unless you have a lung disease, and you can't breathe, then there's no way that you can appreciate just how hard it is to do anything and everything. I get short of breath just from talking!

You can sort of think of it like this - imagine that your mouth is firmly taped shut and you have to sprint for a kilometre only breathing through your nose.

You can't get enough air in and out of your lungs to provide enough oxygen for your body.
The lack of oxygen is making your heart race at over 140 beats per minute as it speeds up trying to distribute the small amount of oxygen left in your bloodstream.
You start to feel dizzy and nauseous, and you can't see properly.
Everything is just black.
You can't think.
You can't talk.
Then you feel like your head is in a vice and your brain is about to explode.

It's absolutely exhausting.

9 Days

2011-09-09T21:39:00.000+10:00

Gosh just realised that I hadn't been back to update this poor little forgotten blog!

Well, I've been on the transplant waiting list for a whole nine days now. I'm slowly sorting things out and ticking things off the'to do' list.

The first thing that I had to sort out was the problem with my intragam infusions interfering with my blood results.

Every four weeks, I have to have a cytotoxic antibody screening test. In very simple terms, this is to do with matching donor and recipient organs to prevent organ rejection after a transplant. I've had to change the intragam routine to four weekly so that I can go to pathology just prior to have the CYT blood test and then head upstairs to have my infusion. They'll monitor my IgG levels, and if they drop too much from the time extension, they'll look at increasing the dose that I receive.

I also managed to go to the furniture shop and order some new single beds for the spare room. I can't really make my mum sleep in a bunk bed for 3 months!

The third thing I did this week was buy myself a huge bottle of phisohex from the chemist. When I get the call, I have to have a shower and completely cover myself with the stuff to make sure I'm nice and disinfected before I get to the hospital (oh, the joy)!

So thats it for the moment... no more news on this front, although I did make a little joke on twitter yesterday.

My sister (who'll be my official carer) is in hospital at the moment, and my mum (who'll be my live-in babysitter afterwards) is scheduled for surgery this coming Friday.
What are the chances that the transplant co-ordinator will call?

It's the final countdown

2011-08-29T21:53:00.000+10:00

This is a little glimpse of the final step.... the blood test slip for tissue typing.

It's the final step in the process this Wednesday morning. So, by Wednesday night I'll be on the active waiting list for a double lung transplant.

So many things to think about.

So many things to plan.

So many things to organise.

I'm a bit of a control freak, so it's going to be difficult to NOT be in control of what happens in the future.

Two sleeps...

Very nearly there....

2011-08-19T21:12:00.000+10:00

After the extra week delay, I headed back to the Alfred yesterday to find out whether I was accepted onto the waiting list.

The good news is that I will be on the waiting list very soon... but there were some anomalies in my original blood tests so I had to have them taken again while I was there yesterday.

The original tests were:
Hepatitis B surface antibody, surface antigen and core antibody, HepC, HIV1&2,
CMV IgG, EBV JgG ,Herpes Zoster IgG (discuss with consultant if patient on
Intragram therapy)

Did you notice at the bottom there, it specifies to discuss with consultant if patient on Intragam therapy?

With the anitbody tests, they're trying to determine whether I've been exposed to any of these viruses. When you're exposed to a virus, your blood will make antibodies against it to protect you..... well that is, unless you have panhypogammagobulinemia like me.

Over the years, I've probably had close to 150 infusions of intragam, and each infusion contains antibodies from a pool of thousands of blood donors.

So, even though I haven't really been exposed to any of these viruses, my blood is giving confusing results.

The other very interesting thing that I learned yesterday is that once you're on the active waiting list, bloods are taken every month and sent off all around Australia, so that when a donor is found, the tissue matching can take place immediately.

They're going to consult with my immunologist on how to time the four weekly bloods and my three weekly intragam infusions to prevent a confusing result.

I've signed the consent form for the transplant surgery, and now I'm just waiting for the new blood test results to come back, and then I go back and sign some more forms, and join the actual active waiting list.

I should have more news very soon.

A slight delay.... and a good news story

2011-08-11T17:04:00.000+10:00

Today was supposed to be D-Day.

I had an appointment scheduled for 2PM to find out whether I was an acceptable candidate for transplant, but there has been a slight delay in my case being presented to the medical panel.
I've been re-scheduled for next Thursday 18th August at 2PM.

Seven more sleeps (not that I'm counting).

But in good news, there has been a media release this week detailing the increase in donation rates this year, which is wonderful news for anyone waiting for a transplant.

As at end July 2011, the Australia and New Zealand Organ Donation Registry (ANZOD) shows that there were 201 organ donors compared to 174 organ donors for the same period in 2010 representing a 16% increase. This year to date, the number of transplant recipients has increased to 593 transplant recipients compared to 526 for the same period in 2010 representing a 13% increase this year.

President of the Transplantation Society of Australia and New Zealand (TSANZ), Professor Peter MacDonald welcomed the July 2011 figures. “TSANZ is encouraged by the continuing increase in the national organ donation rate and the increased transplant activity that this makes possible,” Professor MacDonald said.

Transplant Australia said more people than ever before are now receiving a transplant and this is reflected in the overall official waiting list reducing from 1,875 on 3 January 2008 to 1,590 at 4 August 2011.

“Importantly we would like to recognise the benefits not only to these individuals but also to their families. Behind every transplant recipient is a family hoping and praying that their loved one will receive the gift of life,” said Dr Alan Amodeo, Chairman of Transplant Australia.

“Transplant Australia is pleased to continue to support the Organ and Tissue Authority as it increases donation rates for the long term,” Dr Amodeo said.

Exams

2011-07-27T18:58:00.000+10:00

Tomorrow I'm heading into one of the local hospitals as a volunteer test patient for the FRACP Clinical Exams.
The exams are for Doctors who have completed their basic training and are now moving on to advanced training.

I've been a volunteer every year since 2004, as I think it's really important to assist with the education of our future Medical Specialists. Even moreso, I think it's beneficial to the wider community, and to those Doctors, for them to be able to have a test case such as mine with more than one unusual medical condition.

In ten years time, a patient may walk into their consulting rooms with vague symptoms, and unlike my case where it took over a year of tests before a diagnosis, they may remember that exam test patient.

Now I just have to pack a few things.... x-rays, lung function test results, and of course the most important thing - my craft bag!

Some info about the testing - Scans

2011-07-21T18:01:00.000+10:00

There were lots of scans over the three days of pre-assessment testing so I thought I'd try to explain them all.

Dexa Scan (Bone Density)

I usually have one of these every two years at RMH as I have osteopenia.
It normally just involves laying on the bed while they take a quick scan of the hip and the neck to check for changes in the bone density.

This one was slightly different as they needed to do a full body scan. Unfortunately for me, that meant that I had to get undressed and put on a lovely pair of blue scrubs pants and a white gown.

The result showed that the bone density in my lower body is worse than the bone density in my upper body. Strange...... but, I've been given some ideas for exercises that will target the appropriate muscles to help with this, and I already take lots of tablets for it anyway!

OPG (Dental X-Ray)

I've never had one of these before, and it was quite strange!

You have to stand upright, and sort of walk into the scanner and bite down on a probe that sticks out in the middle. They adjust your head and lock it into place with a clamp, and then the scanner turns around your head to take x-rays of your jaw and teeth.

CXR (PA & Lat) - (Chest X-Ray)

This one was a little more familiar. Over the past 25 years, I've had at least 50 chest x-rays. I have a huge pile of them in my walk-in-robe.

Normal procedure - take everything off from the waist up and put on a lovely hospital gown. Stand against the plate - Breathe in and hold your breath - take a front x-ray. Turn and put your side up against the plate with your hands on your head, breathe in - hold your breath, take the side x-ray.

VQ Scan (Checks air and blood circulation in the lungs)

The best way to explain this one is that it's sort of similar to a CT scan.

You lie down on the bed, and you have to breathe in some radioactive gas, and be injected with a radioactive dye. The scanner moves and sort of hovers over your chest on each side.

CT Thorax (High Resolution and full 10/10 slices)

The CT is another where you have to take everything off from the waist up and dress up in a lovely white gown.

For a high-res CT, they inject a radioactive dye. The dye gives you a funny metallic taste in your mouth, and you get this really strange sensation of warmness that moves through your body. You feel like you're wetting yourself (but you're not).

The bed moves into the scanner, and a lovely robotic voice tells you to breathe and hold your breath while the scan take place.

Echocardiogram & ECG

This one is always the most embarrassing of the lot.

The ECG is quick and easy - they just attach the electrodes all over your chest and print out a report.

But, the echo is not nice. It's an ultrasound of the heart and it's uncomfortable and embarrassing (for a female) and takes a long time. There's lot's of pushing of the scanner against the chest and at the side. The area of my chest where my heart is, is always quite sore anyway as it feels like my heart is protruding out of my chest from working so hard everyday.

I have mild pulmonary hypertension and a slightly enlarged heart, so I'm hoping that the result doesn't show that these are getting any worse.

Phew! It's a wonder I wasn't glowing green after all that!

Some info about the testing - physio

2011-07-17T19:24:00.002+10:00

Physiotherapy and Pulmonary Rehabilitation are very important to anyone with a chronic lung disease. It's essential to keep active and to learn how to focus on strengthening the correct muscles that are important for breathing, and the large muscles that use the most oxygen.

I've been attending pulmonary rehabilitation sessions since 2004. When I started I was still quite fit and active. I was still working full time and also travelling for work. The only time that I ever really encountered a problem was when the colleagues that I travelled with walked too fast for me at the airport!

As the years have progressed, things have become worse. At first, I just started using oxygen at my pulmonary rehab sessions on 2L/min. Then I got to the point where I needed oxygen for walking / shopping etc. outside of the house. Now I'm at the point where I need oxygen 24/7 on 2L/min and then I have to increase it to 4L/min for walking/exercising etc.

The way that the physiotherapists measure a patients exercise tolerance is with a 6 minute walk test. (6MWT). They set up a straight path of at least 25 metres, and the patients needs to walk back and forth from end to end as fast as they can for 6 minutes. You can only stop if you get too dizzy from lack of oxygen to the brain.

Predictive equation for females: 6MWD(m) = 525 – (2.86 age, yrs) + (2.71 height, cm) – (6.22 BMI).

For me the predicted outcome should be = 525 - (2.86*37) + (2.71*170) - (6.22*23.5) = 733.71 metres

On 4L/min, I actually achieved 325 metres with my SpO2 in the low 70's (should be 100%).

I'd love to know what the results were from my very first 6MWT in 2004. I really should ask my physio if she can dig out the records and check!

Which has got me to thinking.... I used to be a long distance runner when I was at primary and high school. Even in Year 12, I came 2nd in the school cross country. I could easily run 3 kilometres in 15 minutes.

325 metres - 6 minutes = 3.25 kms/hr
3000 metres - 15 minutes = 12 kms/hr

BIG difference!

If you look at the top right of the photo - it has a results for ABG's which means Arterial Blood Gas. It's where they stick a really skinny needle directly into the artery in your wrist (and yes it's as gross as it sounds) to take a blood sample.

The normal range for PaCO2 is 35-45mm Hg - mine is 57
The normal range for HCO3 is 22-26mEq/L - mine is 33

This means that I have compensated respiratory acidosis or too much carbon dioxide in the blood.

I'd better watch out then, I might get slapped with a carbon tax!

Some Info about the testing - Bloods

2011-07-15T21:46:00.000+10:00

Mobile phone photo

On the second morning of testing I was scheduled for the blood tests. I had to fast from midnight the night before for this list:

FASTING BLOODS AT OUTPATIENT PATHOLOGY
Blood: U+E'S, Cr, Glucose, LFTs, Mg, Ca, PO.
CRP,B12,Folate,Iron Stud ies
Cholesterol HDL + l DL. Triglycerides, V1T D, TFTs, HbA1C
PSA (>age 50 males) Testosterone (males),
FSH, LH (females)
Immunoglobulin levels, protein electrophoresis
FBE, ESR. APTT. PTIiNR. Blood Group. TPMT ACTIVITY TEST
Hepatitis B surface antibody, surface antigen and core antibody, HepC, HIV1&2,
CMV IgG, EBV JgG ,Herpes Zoster IgG (discuss with consultant if patient on
Intragram therapy)
Quantiferon Gold, baseline save (for future serology etc).
Arterial blood gases (room air x15 minutes first if possible)
Oral Glucose Tolerance Test with Insulin levels at the time of glucose levels
2hour test. patients must be fasting : blood at baseline, 1hr and 2 hrs.

So at 7.30AM the nice lady from pathology came in and emptied a bag full of blood tubes that needed to be filled. I'd just woken up, sitting in bed bleary eyed (with bed hair) in my pyjamas.
I asked how many - she said 18. I couldn't resist taking a photo of them. She laughed!

While she was filling tubes, I had to drink a 300mL bottle of glucose syrup for the glucose tolerance test. I didn't mind that bit - it just tasted like flat sweet lemonade, but afterwards - bellyache. Blergh!

For the glucose test she had to come back at 8.30 for more blood, and then 9.30 for even more blood.

By this time, I was absolutely dying for a cup of coffee! I only had a chance to drink a super quick coffee before my chariot arrived to whisk me over to the physiotherapy department for the next appointment....

.... details in the next post.

What I Eat

2011-07-12T20:17:00.000+10:00

I'm very fussy when it comes to eating.

It's amazing how many of my friends love to make a joke of my eating habits (it truly is quite amusing... but I can't help it).

Anyway, it's always a bit nerve wracking having to tell a dietician what you eat, but it was one of the appointments on the pre-assessment list.

So for breakfast, I usually always have multigrain toast with vegemite, sometimes jam, a giant cup of coffee and a handful of tablets.

For lunch, I might have crackers with vegemite, or a sandwich, or I might go out and eat (bakery fare, toasted chicken wrap etc).

For dinner I usually have meat (chicken, beef, lamb, pork) with either potato, rice, or pasta.

For snacks I eat biscuits, cakes, chocolate muesli bars, and bananas (when they're not $15 a kg).

I also have at least one cappucino and one hot milo per day.

All of that may not seem very healthy for a normal individual, but the only problem was that I need to cut down on vegemite because of the salt content.

I'm in the perfect weight range for my height and medical condition.
I use supplements (mutivitamins) to make up for the lack of vegies and for the malabsorption issues that occur with hypogammaglobulinemia.
I have lots of problems due to taking prednisolone for twenty years which is why it's recommended to cut down on salt.
The osteopenia is also due to the prednisolone, so I have to take high dose calcium, vitamin D, and fosomax, and drink more milk via cappucino or milo.

I was quite happy with that report!

Final pre-assessment appointment - Dental Clinic

2011-07-12T19:59:00.000+10:00

*** Disclaimer:

Sorry to anyone reading my blog posts at the moment - they're going to be extremely boring, but I'm writing this for my own benefit to keep a record of the process. Sort of like a diary.

The Dental Clinic was closed when I was in hospital last week, so I had to go back today for one last appointment as part of the transplant pre-assessment.

I'm pretty good at making sure that I go to the dentist every six months for a check up and a professional clean, so I was pretty confident that they wouldn't find any pre-exisiting dental problems which would need to be fixed prior to a transplant.

They did all the normal checks that the dentist does, and made a list of any work that had been done, and the current condition of each and every tooth.

Then they took x-rays of the three pre-existing root canals to make sure that they were in good condition and had been treated adequately. One of these root canals was only done a couple of years ago and cost around $2000, so I was going to go back to the Endodonttist and ask for a refund if it wasn't any good!

Once all that was finished, they put up the three little root canal x-rays and the x-ray of my jaw and teeth from last weeks tests on the screen together. Teeth look even uglier and more crooked on x-rays.... but thank goodness, they couldn't see any problems.

The only other thing that they spoke about was the need to be on antibiotics before having any dental treatment. I'm assuming this is as a preventative measure? I'm already on prophylactic antibiotics 24/7 anyway due to the hypogammaglobulinemia so I don't think this will be a problem.

So the good news at the end of the dentail clinic is that I can just stick to my current routine - see my own dentist every six months for a check up and a scale and clean. Phew!

Testing Over

2011-07-08T19:48:00.002+10:00

The three days of pre-assessment and testing is finally over.

I made it home at around 4.45PM, and now I'm exhausted....even though I spent most of the time sitting in a chair or being wheeled around in a hospital chariot.

I'm so glad that they squeeze it all into three days, as I can't imagine how long it would take to get through all of that as an outpatient.

I'd already had all of the tests previously, except for the jaw x-ray, so at least I knew what to expect.

All of the staff at the Alfred were so nice and so caring which made it so much less stressful.

There's lots of information to absorb from all the different medical specialties. I'll be reflecting on it all for a while until my next appointment.

All of the results now need to be collated and reviewed by a medical panel to make the final decision on my suitability for a transplant, but on August 11th, I should find out for sure whether I'm joining the waiting list.

The Schedule

2011-07-02T21:24:00.000+10:00

The weirdest thing happened thismorning....

A friend came over mid-morning to give me an Adobe Illustrator lesson, and as I opened the door, I noticed that there was mail in the letterbox.

I'd checked them mail when I arrived home lastnight at around 10PM and it was empty, so I thought it was a little strange that all of a sudden there was mail on a Saturday!

It turns out that it was the six missing envelopes full of paperwork that I was waiting on from the hospital, which had all been sent to my previous address.

I'm assuming that the new owners of my old house (one of them being a nurse) must have realised that it was important (as it was labelled as being from the heart and lung transplant unit), and luckily searched for my new address and delivered it.

So thank goodness, now I at least have the schedule and I know what's planned for the three days.

This is a quick run down:

Wed:

Need to be in admissions by 8.30AM (I'll be setting my alarm for 5.30AM)

Dexa Scan (Bone Density Test)
OPG (Dental X-Ray)
CXR (PA & Lat) - (Chest X-Ray)
Social Worker
Anaesthetics
VQ Scan (Checks air and blood circulation in the lungs)
Sputum, Micro Culture and Sensitivity, Fungal Culture, AFB Culture
Commence fasting for AM bloods

Thu

FASTING BLOODS AT OUTPATIENT PATHOLOGY
Blood: U+E'S, Cr, Glucose, LFTs, Mg, Ca, PO.
CRP,B12,Folate,Iron Stud ies
Cholesterol HDL + l DL. Triglycerides, V1T D, TFTs, HbA1C
PSA (>age 50 males) Testosterone (males),
FSH, LH (females)
Immunoglobulin levels, protein electrophoresis
FBE, ESR. APTT. PTIiNR. Blood Group. TPMT ACTIVITY TEST
Hepatitis B surface antibody, surface antigen and core antibody, HepC, HIV1&2,
CMV IgG, EBV JgG ,Herpes Zoster IgG (discuss with consultant if patient on
Intragram therapy)
Quantiferon Gold, baseline save (for future serology etc).
Arterial blood gases (room air x15 minutes first if possible)
Oral Glucose Tolerance Test with Insulin levels at the time of glucose levels
2hour test. patients must be fasting : blood at baseline, 1hr and 2 hrs.

Physiotherapist
Transplant Clinic Nurses
Lung Function
Dental Clinic
CT Thorax (High Resolution and full 10/10 slices)

Fri

Occupational Therapist
Cardiothoracic Surgeon
Echocardiogram
Dietician
Transplant Co-ordinators
3PM - GO HOME!

End of the Week

2011-07-01T09:27:00.000+10:00

Finally reached the end of a busy week (thank goodness).... just have my pulmonary rehab class left thismorning to finish it off.

I had lung function tests yesterday and saw my Respiratory Specialist and Eye Specialist (the Eye Specialist is only due to a side effect of one my medications).

In good news, the lung function is still stable.

Anyway busy day - a million things to do before the exhibition tonight!

X-rayed

2011-06-24T21:36:00.000+10:00

Tomorrows mission is to sort through and re-organise the last twenty-two years worth of x-rays and CT scans to take in next week. I'd estimate that there's probably at least 100 films. Unfortunately every time someone goes through them, they never put them back into their matching envelopes, and my filing system goes out the window.

I went to have an updated one taken today.

That's a particularly bad mobile phone photo of it in front of the venetian blinds in my bedroom (I don't actually have any extra horizontal ribs).

Source

This is what a normal one looks like for comparison.

But first, I'm heading to the Boathouse for lunch with some girlfriends - much more fun!

It's time

2011-06-23T21:29:00.000+10:00

When I last saw my own Respiratory Specialist a few weeks ago, we had a good chat, and he recommended that it's probably time to go ahead and consider heading down the transplant route.

I had an appointment at the Alfred on Tuesday morning, and they agreed that with my lung function as it is now (hovering around 22% of normal) and being reliant on oxygen 24/7 since last year, the benefit could now outweigh the risk.

I met the Transplant Co-Ordinator and the Social Worker for the first time, and we set some dates.

I'll be heading in to stay for 3 full days of pre-transplant testing in early July.

At the completion of all of the testing, the results are reviewed by a medical panel, and then they will make the decision as to whether or not I'll be listed for a double lung transplant.

I'll write more about things as they happen, but for now, that's the basics, in black and white.

The Oxygen Situation

2011-06-19T22:38:00.000+10:00

I recieve lots of invitations from lots of wonderful friends to hang out, attend an event, go out to eat etc.

I always put on a brave face and try to join in as much as I possibly can, but I know my friends get disappointed that I can't always say yes.

Sometimes it's because of a lack of time and the general exhaustion that goes along with having a chronic illness.

A lot of the time, it's because being attached to an oxygen source 24/7 is really hard work.

Oxygen is funded on a State level and the rules are different in each and every State.

It's only available after you have been oxygen tested, and an application has been completed by a Respiratory Specialist, and then approved via the Department of Human Services - Aids and Equipment Program.

The maximum dollar amount funded per month is $200. This amount is supposed to cover the following:

Rental - Oxygen Concentrator (large electric machine that converts air to O2)
Rental - Portable Oxygen Bottles
Rental - Oxygen Conserving Device (which fits to the top of the portable bottles)
Rental - Oxygen Trolley (to drag your bottle behind you as you get around)
Portable Oxygen Bottle Contents

I took the option of purchasing my own Oxygen Concentrator (at a cost of around $2500) so that I could receive more funded portable bottles per month.

But, even with that, I'm at the maximum limit per month of 10 bottles.

If I'm very frugal with the flow rate (I use 2 litres per minute resting and 4 litres per minute walking), then I can get a bottle to last for a a maximum of about 10 hours.

So, when you do the math, I can leave the house for 10 lots of 10 hours. Make that 10 days per month.... out of 31.

Once I run out, I have to pay full price of somewhere between $17 and $25 per bottle, depending on the size and the supplier that I order from.

So if I decide that I'd like to go out for the day, and I've used my allotted oxygen for the month, I need to budget for the extra cost of leaving the house, but I also have to plan way ahead of time to even get a delivery from my supplier. I also need to check to ensure that I have enough oxygen in the car to cover me for the amount of time that I'm planning to be out for.

It's extremely frustrating, but I just really can't do everything I want to do.

Stumped

2011-06-11T17:55:00.000+10:00

While I have absolutely no problems writing for my other blog, I'm still a little bit stumped about this one.

I've always been very guarded about sharing information about my medical condition. It stems from all the job interviews that I went through when I finished Uni in 1995.

I was looking for a position in the food manufacturing industry, so each and every interview had a medical questionnaire. I knew that I had to fill them out truthfully, but I also knew that as soon as they knew about my condition, I wouldn't make it through to the next round of interviews, no matter how high my marks, or my relevant experience and qualifications.

When I finally did find full time work, it was in manufacturing, but not food, and I was down to my last $12.
There was no medical questionnaire and I didn't have to voluntarily disclose anything (thankfully).

But then. two weeks after I started, I was told that I had to go and have a pre-employment medical. I started to panic.

The pre-employment medical took place at one of the local medical clinics. First up, one of the clinic nurses took me through to perform all of the relevant tests, and then I was to see the doctor, and he would check the results and discuss my relevant medical history.

Everything was going along swimmingly until the nurse took me into one of the rooms and I spotted the spirometer. She attached the nose peg, and asked me to take a deep breath, and then blow as fast and hard as I could.... which I did.

She had a puzzled look on her face, and then asked me to do it again.

After the second try, she turned around and said, "I think the spirometer is broken", and so I had to break the news that the spirometer wasn't actually broken at all!

It's quite amusing to me to go back and look at these results from 1996.

At an FEV1 of 49% of predicted normal in 1996, I could still do everything that I wanted. I was even still able to play sport. No-one would have ever guessed that there anything wrong.

Sheesh, how things have changed!

This is the first post

2011-05-28T21:30:00.000+10:00

I've been thinking about setting up a separate blog for a little while now, so here it is. This is the first post.

So I guess the biggest question is "Why?"

Sometimes when you have to face a challenge, writing about it can ease the stress of the situation. But, if I get all whiney and whingy along the way, everyone needs to promise to slap some sense into me.

Posts could be few and far between. This blog is really only for me.

I think that when I get to other side of this journey, I may want to look back at what occurred along the way. I think that unless I write about it, I may miss some moments, and they may be moments that I don't want to forget.