Tappy needs a new set of lungs

As the fog lifts, Dorothy and Toto find themselves skipping along the cobble stone streets of Ozifax on their way to see the Wizard about a magic bean that will allow the Iron Man to get his new set of lungs.

This morning Mike and I headed downtown to meet with the Minister of Health, Chris d’Entremont. When we showed up at the Legislature earlier this month and made public our concern about the gap in coverage for transplant patients, the Minister agreed to meet with us to discuss the issue in more detail. Today was the day. Also present was Bobby Sutherland, Senior Policy Advisor for the department of Health and Executive Assistant to the Minister, Kevin Surette.

Old Mother Hubbard went to her cupboard… but they were locked.

When most people think about organ transplants, they think about “anti-rejection” drugs, more formally known as immunosuppressants. These drugs are required to prevent the body from attacking the new organ and are covered as part of the cost of surgery. Unfortunately, when you suppress the body’s immune system you make it susceptible to infection. The drug Valcyte, required to fight off the most common post-transplant infection, is very expensive and is not covered with the surgery. There are a couple of Nova Scotia drug programs that will in some circumstances cover this drug, but Tappy doesn’t qualify for any of them. So the issue we brought before the legislature was that it doesn’t make sense to cover a transplant procedure if we are not going to cover the drugs required to give the organ and patient a descent chance of survival.

Toto, I don’t think we’re in the Legislature anymore.

Today’s meeting was in stark contrast to our day at the Legislature. It wasn’t nearly as exciting as being in the “media scrums” with all the cameras, lights, and microphones being bandied about. Just five guys drinking coffee and sharing information. From the start the atmosphere was collaborative. We were there for over an hour and covered a lot of ground in that time. By the end of the meeting we all walked away with a few “To Do’s” and agreed to meet again in a couple of weeks.

Well there’s been another change. We will now be moving into an apartment in Toronto around the first of December. So until we can get an internet connection up and running, I will probably not answer any e-mails or check these pages around that time.

Georgie and I would like to thank the hundreds of people who have helped us in the  pursuit of a lung transplant. We also want to thank the many people who helped make the shin-dig at Brooks Haven such a success. Wish we could have been there. I have to tell you that We have a support group in place like no other and it means a lot to us. Georgie and I really have to thank our kids for all the hard  work they have done to make this ordeal a little easier.

From time to time we will make posts on this site to let you know how and what we are doing.

We have been staying with Georgie’s Brother Ray and his family and driving the 401 three to four times a week to Toronto for tests and therapy. Now I’m happy to announce that we will be moving into the city around the 15th of December and will be close to the hospital. We are getting furniture and utensils donated by relatives and friends and friends of friends. The generosity of people just seems to never end.

We have a pager we must carry with us at all times and when we hear that go off I’m sure our hearts will do a few flips knowing that the moment has arrived. But we have also been warned to be prepared for “false alarms” which happen occassionally when they discover the donor lung may not be suitable afterall.

Anyway a big thank you to all of you and we’ll keep you posted.

Eddie and Georgie

We keep running into people from Nova Scotia who received a new lung. We ran into a couple last night who were In TO for ten months waiting for the lung. He lost his house and car in the process. Another guy who had his operation three weeks ago is already out of hospital and coming in for the regular therapy.

According to all feedback so far, eveyone had a great time. The music was good, the food was good (and plentiful), and we had a perfect size crowd. Our auction was a success as well. There were many great items to bid on thanks to our generous sponsors and some talented family members and friends.

(more…)

Tappy is now becoming a “blogger”. For those not familiar with the internet’s latest craze, “blog” is short for “web log” and is an on-line diary of sorts. Over the coming months Tappy will be using his blog to keep everyone up to date on the latest developments.