My trip to Cincinnati for ONCE was good news. After 2 years of BAD news, we finally got some good news. We started our trip by going on Friday night to Six Flags Great America with two of our best friends, the Kelleys and the Nichols. We took the kids and went to Great America in the morning for Fright Fest. Let’s just say that it was FREEZING cold. The kids were freezing and cranky. And not to say that I could blame them. It was really miserable. I wanted to attempt walking the park without assistance of a scooter or wheelchair. Usually, I will just try to suck it up. HOWEVER, this time, it did not work. Within 10 minutes, I looked at Jay and asked for a scooter. It took a lot of guts for me to do that. I am usually so prideful and want to pretend that I can do everything. In this instance, I could not.
I also was SO extremely excited about going on roller coasters. I LOVE them. But, I went on 2, and basically had the breath knocked out of me. I need my oxygen when I walk, but when I sit, I can do without it just fine. This most definitely was wrong in relation to roller coasters. I was disappointed, but after the 2 roller coasters, I just made do with the fact that I could NOT do any more. It could cause more harm than good, and what was the sense in that??
Other than that, we just hung out with our friends and enjoyed ourselves. Then, Sunday afternoon, Jay and I headed off to Cincinnati, and Mudd and Randy took our boys back to their house. I missed them so much. Mudd told me that since we have been gone, Jayden told her that Josiah missed his mommy, and that mommy should come home in 5 minutes. I love that kid. Rather than saying that he missed me, he pushes it off on his baby brother. It definitely brought a few tears to my eyes. Mudd is an incredible support for us, and makes me feel safe about leaving my kids behind.
Anyhow, we had a day full of tests in Cincinnati. I was so incredibly terrified. In November of last year, I had my first set of Pulmonary (Lung) Function Tests after Josiah had been born, and it showed that I was at about 70% lung function based on a normal individual of my age/height/weight, etc. Then, I took a drastic drop to 54% in March. That was just 4 months later. Then, in July when I started the clinical trial I am in, my test results showed that I was at 33% lung function. Again, such a drastic drop in just another 4 months. This is EXTREMELY poor and concerning. I get so incredibly out of breath anymore doing just the slightest little thing. Once people get to 30%, that is usually when you have to start looking at lung transplant. Can you imagine how scared I was after the rate of decline I had endured in the last year??? If I had followed that pattern, I would have been at the brink of some very bad issues this time. I started the study drug in July after finding out that I was at 33% lung function. The drug is not supposed to fix the cysts in your lungs or cure LAM; it is just supposed to stop you where you are. It discourages the growth of any further holes or cysts. And when I went this time, I tested at 44%!!! WOW!! What an amazing blessing that is! I didn’t get any worse, and I even showed a little improvement. Now, the tests are not 100% accurate, so we have to remember that there is room for error in there. However, I would have been happy at 33% again! I just didn’t want a decline.
This is an amazing feeling I have right now. I am a HUGE Christmas person, and cannot express the hope that I feel right now. I am praying so much that doctors can find a cure for LAM. If this drug could keep me where I am for a few years, maybe there would be a way for me to be able to see my kids grow up. This is the best Christmas present I ever could have asked for. EVER. I can set aside some of my concerns and worries and just concentrate on my kids and my husband and family. This is incredible. Praise God.
So, we celebrated that night with a good friend of ours named Walter who administers all of my lung tests at the hospital. We had PF Chang’s and did a little shopping. Not too much, though. Those tests sure do take a lot out of me. And today is Tuesday and we are heading back home. I am so excited to hug the boys.
Thanks again for reading my blog. Please keep praying for us. I wanted to share my numbers today with you so that you can see how on the brink of transplant I am. This would be incredibly difficult on me and my family both financially and otherwise. So, if I can keep holding off that result, I would be so happy. I can make the best out of living this way. Very easily. The oxygen, doctors appointments, and daily sufferings are a small price to pay to be able to spend each additional, precious day with my children and husband.
Blessings to all. XOXOXO
Melanie Putnam 