As a kid, I grew up on a farm next door to my grandparents. My Grandpa was fond of listening to Paul Harvey tell "the rest of the story" while he waited for lunch. Well, this is the rest of the story tied in with a little breaking news.
Days before my 35th birthday, I went for a second opinion about my current lung infection. I was 7 weeks into a rough run of IVs after a nasty blood clot and my doctor thought his colleague might have some ideas. When I was working at the U, news broke of a new drug, VX-770, that could cure the underlying problem of CF for a small set of patients. Most people, like me, have the Delta 508 version of the gene mutation which needs another drug in development, VX-809. The point is that upon hearing about VX-770 for the first time, I believed that there really might be a magic cure waiting in the wings. Well, my 2nd opinion led me down a road that I was not prepared for at all. It was suggested that I should start to think about a lung transplant since the drugs, if approved, would likely help people with much less lung damage than me. I wasn't too worried about it and thought maybe he was just overprotective but agreed to another meeting to learn more about my options.
So, another week passed and I went to see my doctor who I fully expected to tell me that I didn't really need to worry about a transplant, at least not right now. When he agreed, well, I just cried. I couldn't really ask any questions or formulate any actual thoughts. My friends at the U tried to tell me that my reaction was typical. I tried to just bite my lip and get through Thanksgiving and my husband's 40th birthday. I didn't get a lot of sleep in December but did manage to schedule a meeting with the transplant doctor that my husband and I could both attend. As it turned out, it was two days before Christmas.
I eventually told three of my friends via email who see me on a day to day basis because I was not managing so well and it was a little obvious. Another friend caught on and little by little, other people figured it out. I wasn't really able to talk about it in person so I didn't really "tell" anyone. I still won't talk about it if my daughter's ears are listening. I also didn't want anyone else's opinion to influence my decision.
In the end, we decided to go ahead and do all of the tests required for a transplant as a back up plan so to speak. I will likely have a transplant at some point but I am in no hurry. The tests typically take a full week so it is better to do them when you are feeling good and can qualify than wait until you are really sick.
My doctor thought it was best for me to spread out all the tests so I wouldn't end up on IVs when it was all done. So, after lots of visits to the U in February and March last year, I was officially done. Then, the transplant team gets together and presents you and all your test scores. You get assigned a score out of 100 points which determines what number you are on the transplant list for your blood type. I got approved and had the option to go active although I would be lower on the list at this point. I choose to hold off for now and try to maintain as much lung function as possible for as long as possible.
My friend just celebrated her two year transplant anniversary and she gave me some good advice on the whole matter. She also knows me well enough and vice versa that I can ask her anything that I want and she will give it to me straight. A number of people have wondered out loud why I don't just go ahead and do it now. Well, there are a number of reasons besides the three month recovery period. Also, if you ever sit in a meeting with the surgeon explaining what they will do, you will find you have no desire to be in any rush. Of course, you also don't want to wait too long so it is complicated.
In today's paper, the headline reads, "FDA OKs a Vertex drug to treat cystic fibrosis." Can I just say that is totally amazing? It is for VX-770 and will help about 4% of patients with cystic fibrosis but puts the other drugs that much closer in the pipeline. So, today, I am asking everyone to make a donation in whatever amount you can afford to the Cystic Fibrosis Foundation. They had the vision for this day and the work isn't done just yet. I promise to host the party when the work is done.
Blessings,
Cindy
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