Lungs At 26

It may be my birthday today, but CF doesn't give me a day off. CF has been kicking my butt the last few days, which is making my special day a little less bright. I'm trying to fight through the sickness I'm feeling, but a nap and a lot of tea drinking seem like the best presents I can give myself today. Tom has been so great with helping me through this time. Men seem to always want to fix things, and I just keep reminding him that cuddles, kisses and hand-holding are all that is required when I feel so crappy. He has done an excellent job at giving me as many cuddles as possible.

Events have happened lately that I have not got around to blogging about. In my little bubble of life it doesn't seem like such a big deal, but I figured I would finally share the latest happenings with all of you.

Last Saturday evening I got another phone call for lungs. Unfortunately, they were high-risk lungs once again. The doctor told me the donor was a prostitute and, at the time of testing at least, she was negative for HIV and all forms of hepatitis. The doctor went on to further explain that the donor's chest wasn't looking right and they were asking for more intensive testing to be done to find out more about the lungs and how viable they were. The high risk factor and the unknown viability of the lungs made me realize the lungs were not for me. As much as I wanted them to be right because I'm feeling so ready for new lungs, I knew it was in my best interests to turn them down. I was able to learn that I was the second person to be called that night. Another patient at a hospital in San Francisco was asked if they wanted the lungs first, but that patient turned them down as well.

Your Help Is Needed

I want to start by saying thank you to everyone who has contacted me, and who is praying for my family and I during this time. Your messages have not gone unnoticed, and I appreciate all of the love and support that has come my way.

Many of you have asked what you can do to help, and as much as my prideful self would love to say we don't need any help, we do indeed need some assistance for this transplant.

A surgery of this magnitude has a long recovery process that involves a lot of monitoring of my new lungs and my body as a whole. After the transplant has taken place and I am deemed "healthy enough" to be discharged from the hospital, Tom and I are required to live within 30 minutes of the hospital, and that must include the awful traffic we have here in the Bay Area. Right now we live over an hour away. This means that we will need to relocate to temporary, fully furnished housing accommodations when I leave the hospital. The doctors have given us an estimate of 3 to 4 months living near the hospital. This is necessary partly in case an emergency arises, but also because I will have to be at Stanford at least 3 days a week for those initial few months. I will be participating in another pulmonary rehab program after transplant to get my new lungs and body back in shape. I will also have doctors appointments and blood tests on a weekly basis.

The Supporting Role: A Husband's Perspective

As Maggie's husband, primary carer and chief "blogmaster" of Maggie's Miracle, I am delighted to have been invited to make my first blog post. My wife insists that people want to hear my story and so she set me this assignment. Her brief was simply that I should talk from the heart, which is not easy for us Brits. But I will do my best to give you an honest and personal account of our journey together so far.

I have always loved TV hospital dramas. Growing up in the UK, I was an avid fan of the BBC shows Casualty and Holby City. For American readers, I suppose an equivalent show would be ER, which I actually have no interest in watching. Maybe it's because British TV is infinitely superior to the endless drivel of commercials that passes for American TV, or maybe it's because I now find myself playing a supporting role in my very own hospital drama!

The Cast Of BBC's Casualty

Welcome To My Journey!

Welcome to my blog, and my first ever post.  Some who have come to read this blog know a little bit about what has been going on in my life the last few months. And to those who don't, well this will be a great place to catch up and be updated about the journey ahead for me.

Let's jump right in the deep end. Most people know I have Cystic Fibrosis (CF) and if you know a lot about it then you know there is no cure. The only available treatment to make us CF patients as normal as possible, is frankly, get new lungs. Yes, I am talking about a lung transplant. When we have exhausted all other forms of treatment, we have to resort to a double lung transplant. Unfortunately, this is not a cure either, this is actually trading one disease for another. A lot of time transplant becomes easier to manage than CF, but it still comes with its daily regimen of medications and frequent monitoring by doctors.