On staying busy

I was chatting to Carly today and something she said stuck in my head. How do I manage to give myself enough rest to stay well and keep going? It's a hard question to answer. I thrive on being busy, and when things are tough medically, staying busy is the best medicine.


I must admit that this past week has been one of the strangest ever, so I thought I'd do a little run down of activities...

• Friday - Called into hospital for transplant that didn't go ahead.
• Saturday - the B-Fabulous Wedding/Pop-Up Shop at Olive Grove
• Sunday - day off
• Monday - Visit from Bec, Sewing, Tissue typing bloods, Prescriptions, Post Office
• Tuesday - Sewing, School pick up, Dentist, Post Office
• Wednesday - Intragam infusion, Olive Grove to pack up, Gleaners Inc to drop off stock
• Thursday - Echocardiogram, Open Drawer to drop off stock, Lunch with Cathy, Tx Clinic
• Friday - Fedex pick up, Pulmonary Rehab, lunch with Carly, Post Office.

I've also volunteered to help out with the social media and newsletter for the HLTTV, I have an article due for DiVine, and I've just accepted some contract administration work for next week.

But for now, I have new fabric to play with!

Another day another false alarm

Today started off like any other day.

I had big plans to actually get out of bed on time, head to Pulmonary Rehab and then go and meet Carly for lunch.

The alarm went off at 8AM and I remember hitting snooze at least three times.

At 8.41AM my mobile phone rang, and it was a mobile number calling me. I assumed it was the cabinetmaker as I'm finally getting my disability kitchen mods after two years of waiting.
It was actually one of the Transplant Co-Ordinators.

They had some donor lungs that were a match and they couldn't say whether I would get a transplant today, but it was a possibility and I should prepare and they'd call me back. Luckily I was still asleep and hadn't had breakfast at that stage, although I was allowed to drink half a cup of coffee.

So I went through the drill - nebs, shower, disinfect, clean clothes, and wait for another call.

At 10.08AM they called back and were still unsure whether it would go ahead but needed me to come into hospital just in case.

We went through the first bits of prep / paperwork / bloods etc and were just about to do an ECG, when at about 12.50PM I was told that it wasn't going ahead today.

There was another lady who was also a perfect match for the donor who is in dire need of a transplant right now to save her life. I hope she pulls through, and I hope the third time will be the one for me.

Photo Essay

After trepidation, desperation and complication, finally hope, and home

Read more: http://www.smh.com.au/national/health/after-trepidation-desperation-and-complication-finally-hope-and-home-20121027-28c8u.html#ixzz2BLWwJMH0

I saw and read this article in the newspaper last week, but I've only just taken the time to play the video and watch the photo essay. It's quite amazing.

A Step Back in Time

This photo has nothing to do with anything apart from the fact that this door makes me want to giggle every time I sit in the waiting room.

Anyway.... I went to see my Respiratory Specialist today. We lamented the fact that I still haven't had a phonecall, and pondered the reasons why, and had a chat about the olden days.

In the olden days, he hand wrote all of my notes on foolscap paper, and the receptionist would file them inside a manila folder. These days, everything is on the laptop.

I asked him if he could find the oldest pulmonary function test results that he had on the laptop. I started seeing him in 1990, but the oldest he could find in a hurry were from 1993.

In 1993, I was 18 years old, 169cm tall, and weighed 59 kgs.
In 1993, Melbourne phone numbers were still only 7 digits.
In 1993, I played Basketball and Netball and was in my first year at Uni.
In 1993, I could run up and down flights of stairs at work with no problems.

And this is today.

One Year Ago Today

Just marking time again.

One year today since that 4AM phonecall.

After receiving that call after only seven weeks, I would have never thought that I'd still be waiting one year later.

It's worrying.

I don't know whether there haven't been any matches, or whether there have been matches but someone else on the list is more ill than me and closer to the end without a transplant.

Trying not to think about it.

Had to just get the words out of my head.

A Gracious Gift

You may remember Will from A Gracious Gift.

I posted his video here a while ago, or you may have seen him in print and tv advertisements.

Will needed a heart/double lung transplant by Christmas to save his life.

I was so happy to see this on Facebook just before my pulmonary rehab session thismorning.

More from Will at Don't Bury Me

Deleting

I was trying to take photos on my iPhone yesterday afternoon when a warning flashed up that the memory was nearly full (no wonder with 9068 photos)!

So now I'm sitting here deleting and I came across these.

The aftermath of the false alarm.

Counting the needle holes in that photo, there was at least 14 attempts at the epidural. No wonder I had a backache for two weeks. Ouch.

Anyway.. the Ombudsman's report into last years closure of the Lung Transplant program at the Alfred was released today.

Here's today's Age Newspaper report:


The Alfred hospital in Melbourne turned away a set of lungs during a week-long closure of its lung transplant program due to a lack of funding, the ombudsman has found.

But the lungs were from a 71-year-old and would have been unlikely to be used had the program been operating due to the person's age.

Alfred Health shut its adult transplant program from September 22 to 28 in 2011.

It had been expecting $3 million in funding from the Department of Health that did not eventuate.

 

Ombudsman George Brouwer said during the closure, a set of lungs from an obese 71-year-old was rejected.

He said due to the person's age they would not have been used had the program been running, but it was lucky more organs were not rejected.

"While my investigation concluded that the closure did not appear to have had an adverse impact on patients in critical need, it was fortuitous that The Alfred only received (and rejected) one organ offer during the closure, as in previous weeks it had received up to eight offers," Mr Brouwer said in his report tabled to parliament on Wednesday.

He criticised the hospital for failing to conduct an independent costing review of its transplant program, despite promising to do so one year ago.

Lung transplants at The Alfred doubled from 2006-07 to 2010-11 as a result of the federal government's initiative to increase organ and tissue donations.

Clinical director Professor Trevor Williams said the program's staff and funding was based on the historical figure of between 40 and 45 lung transplants each year and the hospital was tracking to perform twice that in 2011-12.

AAP

Read more: http://www.theage.com.au/victoria/alfred-hospital-turned-away-transplant-lungs-20121010-27cc4.html#ixzz28t7buUpx

False Alarms

It's been nearly a year since my false alarm.

I was really sad to read this week that little Coen Ashton had a false alarm on Wednesday. His mum has written a blog post.

There are no words. I get butterflies in my stomach just reading it.

Tomorrow

I'm back off to the Alfred for Transplant Clinic tomorrow.

Things have remained fairly stable over the last twelve months until now. I've noticed a slight deterioration over the last couple of months, and the Physiotherapists at Pulmonary Rehab have noticed it too.

At rest, everything seems to be the same, but as soon as I do anything - even something as small as standing up, my oxygen sats start to drop faster than normal, and my heart rate starts to increase faster than normal.

After the walk section of pulmonary rehab, my sats are now around 72%, and my heart rate is around 130.

I've noticed the difference around the house too. I have to keep stopping and sitting down when I'm doing stuff, and I have to turn the oxygen up to have a shower comfortably.

I'm not quite sure what to think about it all yet. Sometimes it's better not to!

One Year Waiting

It's one year ago today that I officially joined the waiting list.

Not much to say about it, but needed to mark time.

A Week Of...

It's funny how things just become normalised when you have a chronic illness. You don't make a big fuss about any of it because doing the same thing day after day after day after day is just the routine.
There's no point whining and no point complaining because nothing is going to change.



But then thismorning there was a reason to step back and have a real look...

Selina has been playing along with A Week Of CF on instagram, and it's been really interesting to see from afar some of the things that she has to do every day. Things that are just routine to her, as my things are routine to me.

Todays subject matter was medications. I know I've spent a small fortune at the chemist over the last 23 years, but the challenge was to look at a weeks worth of meds.

So this is my week:

• 21 nebules of ventolin
• 21 nebules of atrovent
• 10.5 vials of acetylcysteine
• a plate full of pills

I was a bit freaked out when I looked at all those tablets on a plate, but what's even more freaky is that it also means that I spend about 21 hours on the nebuliser (which is thankfully right next to the computer). That's half a full time job each week. No wonder I never have enough time to do everything!

Rollercoaster

Do you ever have one of those weeks where you want to stop the rollercoaster and just get off for a while?

I'm in the midst of one. Another health scare over the last couple of days combined with tests and appointments four out of five days this coming week are tipping my scales.

Thank goodness I can rely on a bit of crafting to get through it, but I could seriously do with a break.

I'm so looking forward to the market tomorrow to bring back a bit of normality!

Oh, and after the good news from my appointment today I celebrated with a bit of Op Shopping. It's the perfect therapy.

How do they choose?

I've been meaning to blog about this for a while now, as the most common question I get asked is "where are you on the list?"



The list is really just a list. There's not really an order. I have six weekly reviews where they check for deterioration etc.

The full TSANZ Protocol is here, but this is a quick summary from the site:


Donor lungs will be allocated considering the following criteria: 


1. ABO compatibility (blood group)
2. Size compatibility                 
3. The absence of a positive T cell crossmatch

Where more than one potential recipient meets the above criteria the first choice will be determined by the following process:

4. Clinical urgency*
    Logistics**                          
    Long-term outcome benefit***
5.  Recipient waiting time, all other factors being equal

A Gracious Gift

Via You Tube


From Nine MSN News

A young Sydney man in desperate need of a heart and double lung transplant has made a heartfelt video, urging viewers to become organ donors. 

William Chapman, 20, was born with a congenital heart condition but his health has recently deteriorated to the point where he fears he won't be around for long. 

"I am living with heart and lung failure," Mr Chapman says in the video.

"Without a heart and double lung transplant I won't make Christmas." 

He urges viewers to think of their parents or the people they love most as they watch the video he helped make in a bid to lift Australia's rate of organ donation. 

"I want Christmas with my family. Not flowers in my face or grievers at my funeral," he says.

The seven-minute clip, uploaded to YouTube yesterday, features Mr Chapman's family as well as a number of celebrities who echo the call to save the young man's life. 

Mr Chapman worked at a media communications company before his failing organs forced him to quit and return to the family home where he could receive 24 hour care.

Nearly a year

Gosh whodathunkit?

I had to go in to the Alfred for my normal 6 weekly check up today, and it turns out that it's been nearly a year since I had all of the original inpatient testing.

So, as the surgeons need to have up to date results on file, I have to go and repeat the yucky glucose/insulin blood test locally, and have another Chest CT when I go back in 6 weeks (unless they call me sooner). It's funny, at the end of every conversation where something is being organised, they always throw that last line into the conversation. It's every so slightly unnerving!

Bureaucracy

I have the lurgy. I'm tired and I'm cranky and this letter came in the mail today.

So I guess I'm supposed to just confine myself to my house, and not participate in society, or I could take the other option and pay for extra cylinders.

But, ignoring everything else, can you imagine having to pay for the air that you breathe?

Not what I was expecting

 

I headed into the city to see the Specialists at the Bone Clinic today (and yes they really do call it Bone Clinic which makes me think of Fred Flinstone?)

Clinic starts at 10AM. My appointment was booked for 10.15AM . They called me at 11.25AM.
Sooooo frustrating!


Anyway, I walked in and we had a little chat about what changes we'd made to treatment since my last visit, and then he told me the results of my latest test - my bone density has improved.


I was quite taken aback, and he was a little surprised.  I'm not used to getting good medical news.

I still have osteopenia/osteoporosis but at least the decline has stopped.

I've been taking calcium and vitamin D supplements for about ten years, but it seems that adding an extra medication (fosomax) one year ago, and drinking milky cappucino's every day has worked.  Well actually, it's probably a lot more to do with the medication, but that's my excuse for the cappucino addiction!

Unfortunately Fosomax can only be safely used for five years, so I have four years to go.

Putting things into perspective

I haven't been around these parts for a while.

I've been practising my very best waiting list anxiety avoidance techniques. It seems to be the only thing that works.

Then I came home today and read Leela's blog post.

I'm very fortunate. I'm on the waiting list.

New Toy

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:

1. Invest in an overnight recordable pulse oximeter so that I could monitor my oxygen levels and heart rate overnight
2. 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

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

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.