Solving the Puzzle

Solving the Puzzle in Boston


Hi everyone

I know it has been a while again since my last post.

I have had a bit of a rough winter health wise.

The pulmonary rehab which I had just started in my last post went really well. Over the 8 weeks I got a lot fitter and learnt some new techniques for managing my lungs. At the classes they have around 12 different stations that you rotate around doing different exercises. Some of the exercises are a treadmill, exercycle, stairs, leg exercises and arm weights. When I first started there I was walking on the treadmill and then by the end I was jogging/running on the treadmill.

During my last week or two at pulmonary rehab I developed pain in my lower right rib area. It seemed to get a bit worse in the weeks after I finished at rehab and my breathing changed. So I went to the Dr and she sent me up to the hospital to get a chest x-ray. They found that I had a pneumothorax which is a collapsed lung. I was admitted to hospital for a few days and had to change my physio regime and stop doing my acapella as it puts pressure on my lungs. After a few weeks the pneumothorax had resolved at my follow up appointment. In the following month after that because of having to change my physio routine I then wound up with a chest infection which put me back in hospital for about a week.

Towards the end of 2015 I noticed that I was finding it hard to breathe and had a follow up check up with my lung specialist. I did a lung function test and they said I needed to admit myself back into hospital as I had another chest infection. Upon going back in the Dr did an x-ray which showed that the pneumothorax had reoccurred. They decided to limit my acapella slightly but not stop it as we did last time as I also had a chest infection too. With iv antibiotics the chest infection was clearing up and I got sent home with a dose of oral antibiotics.

About a week after coming out of hospital I got a really dizzy head and my vision got blurry. I also was finding it hard to breath. Vanessa called a ambulance which arrived and off to hospital again where they did a few tests. The pneumothorax was back again, I can’t fly anywhere until it is completely healed.

In November the Pulmonary team decided to start me on this new antibiotic three times a week as I have had a hard year with my chest and getting infections this year. This drug seems to be going well, I have so much more energy. All my other numerous medical tests for DC this year have had positive results so i tis just my lungs that are a concern at this stage.

I also have been referred to Auckland hospital about getting a double lung transplant in the future. The pulmonary team in Wellington are going to contact a rare disease specialist in Sydney who just happens to be the specialist recommended by our Dr at Harvard Medical Centre in Boston. This specialist Dr Allan Glanville, is also on the DCO Pacific board we have started up on this side of the world.

Needless to say we had cancel our flights for Christmas, home to Nelson. We did manage to take some extra days off work and take the ferry to come home to Nelson.

I am hoping this pneumothorax will resolve itself once and for all and that I can still fly back to Boston later this year.


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