Quite a few things have happened in the last week or so. First, we have received just over 20 responses to our "expression of interest" questionnaire concerning the formation of a more formal Lung Transplantee Association/Group or whatever. This is disappointing considering we sent out 120 letters. However we'll give it more time. We have enough interest to proceed and only two responses were negative. Quite a few people stated they wanted to be involved on the committee so that's good. As usual I'm probably being a little impatient.
On the bright side, we've finally made a decision to have a short holiday. On Monday 13th November we're off to Port Douglas for a week or so. This is north of Cairns in tropical Queensland and it will be hot and humid, a real test for my new lungs. We decided that if we waited until everything was perfect, we'd never do anything. Monday is clinic day so hopefully I'm declared fit to go. The hip is getting better every day and I am spending as much time walking unaided as possible to strengthen the muscles.
Reflux testing takes place on 29th and 30th November. It's a minor procedure apparently and I hope the news will be good. Anyway, we'll worry about that when the time comes.
At the moment we're "dog sitting" Patch, our neighbour's dog. He's only five months old and is a real delight. It will be hard to give him back when Suzanne returns from holidays interstate on Monday. Having said that, I'm still not sure I want another dog full time. At least with Patch we can give him back at the end of the day. We'll revisit this issue when we get back from holidays. I think Janyne will probably convince me to change my mind as I know she really misses Selby. We'll see.
Good too hear from Rebecca and I hope the news about your lung condition is good. Let me know.
Jean, thanks for your comment of 2nd October. Sorry not to acknowledge earlier. Your Doctor Michael Musk is from Perth and on secondment to Prince Charles Hospital for a twelve month stint learning the lung transplant ropes from Drs Hopkins, McNeil and Kermeen. He has treated me on a number of occasions and I am very impressed with his level of care and bedside manner. He is a really nice guy.
Anyway, I'm off to bed so until next time, take care.
Ben
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Hello Ben: Don't be too discouraged about the returns from your "expression of interest." It may be that 20 people will be all that is needed to get it off the ground. As it becomes a reality, and others can see the value, it will likely blossom. I am happy to hear that you are taking a holiday; sorely needed I'm sure. I met with the cardiothoracic surgeon at Emory University on Thursday. He concurs with the pulmonologist that a lung biopsy is necessary. It is scheduled for November 15. I am having a VATS (video assisted thoroscopy) biopsy. He will make 3 incisions between ribs; one toward my back, one on the side and one on the front, will take 3 sections of lung tissue, cut each one in half sending half to pathology and half to microbiology. He will wait until he hears from Pathology (about 15 minutes) that the samples are good ones before closing me back up. It should be a 1- to 2-day hospital stay. I am eager for this to happen so that I can possibly have an answer. He is also going to scope my esophagus & stomach while I'm asleep to assess reflux issues. I have read about the relationship between reflux & lung issues - it's mostly post-transplant as you are experiencing now.
I'm doing relatively well. I thoughtlessly visited a friend in the hospital Thursday. I mean thoughtlessly because she had an infection of unknown origin and I knew that but didn't think once about the threat to my fragile immune system!!! Just wasn't thinking. So I have made a decision to pretty much isolate myself from now until who knows when - I guess until I feel safe again. Wow, feeling safe...that would feel good.
Have a wonderful holiday; I'll be thinking about you.
Rebecca
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