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.