I love having this blog. It is an easy way to inform my friends about the details of my life and not have to say the same story over and over. In addition, it helps me get things off of my chest…kind of like a diary. And I like that. But, I have to say that I am kind of having a weak day today. I am going through a lot right now and am facing so much in the near future, and I am trying my best to be strong. But, today is one of those days where it is just not easy for me.
So, I met with the lung transplant surgeon. He is a great doctor, and we could tell how much he cared just in the hour meeting we had with him. His job was to tell us all of the risks and things that could happen with such a surgery. Most of them I had heard from other members of the transplant team, but hearing them again…and ALL AT ONCE was difficult to swallow. Just thinking about the fatality ratings and the life expectancies in general made me choke up multiple times. But, I know it is his job to tell me all of the facts. I completely appreciate honesty, believe me. But it doesn’t make it any easier to take.
At one point he said that the lung transplant is the first mile in a 25 mile marathon. GREAT analogy. After you get through the surgery and get breathing on your own, you then have to look at the next year of intense recovery, testing and lifestyle changes. And you have to be motivated and have the will to live and fight. All I could think about was Jayden and Josiah who mean the world to me. And Jay–the best husband in the world. Leaving them is just not an option!!! It kills me inside thinking of my young children. I have so much to fight for and live for!!
So, after we listened to all of the risks and information of the surgery itself, he dropped the bomb that he is unwilling to do the surgery while I am on the drug that I am on right now. Sirolimus is the drug that I have been on for the past year and a half. Prior to being on it, I dropped from normal and healthy lung function all the way down to 30% lung function in a year. Being on this drug that I started in my clinical trial in Cincinnati, I have stabilized at about 26% lung function today, a year and a half later. The issue with being on sirolimus for a surgery of ANY kind is that it affects wound healing. Obviously, the healing necessary from stitching new lungs to my heart and stitching my body back together and all of the rest of the small details would be extremely difficult if I was on this drug. So, in order for me to be considered for transplant, I would need to be off of sirolimus for 2 months PRIOR. This makes me feel so uncomfortable b/c my wait for new lungs could be 1 day or a year! And if my lungs get any worse in the meantime, I would not be an ideal candidate for the lung transplant. So, it is catch 22. Last I had heard, they were considering doing the surgery and keeping me on the sirolimus b/c they didn’t want to risk me getting worse. But, it is just not an option now. And after talking to this doctor, I completely understand! And I even agree.
So, on Monday, the transplant team will get together for a committee meeting and discuss my case. Every member has to approve my listing for transplant. Upon their mutual conclusion that I am approved, I will then stop my drug for 2 months…and then wait. Wait until I get the call for new lungs! At which point I have 20 minutes to leave the house and get there and get prepped for the surgery.
Wow, even writing that terrifies me. I have to be honest.
So, that is where I am right now. Waiting for approval, then to clear the drug out of my body, then for the new lungs.
I have to tell you that even though I am terrified, I still believe that God has a huge plan in all of this. I don’t pretend to know why He does what He does. And of course I wish that I had been healed by now! But, as I stated last time I wrote, there will be plenty of time for God to do his miracle of healing for me. I am just waiting patiently and doing what I am supposed to do. There were doctors in the bible, and God gave them to us for a reason. So, I will carry out every action I can do to stay alive and well, and have expectation that God is allowing things to happen in accordance with His Will. I know that His Will is for me to be healthy and well. So, I have to keep believing that it will happen!!
Please pray for me for peace. I don’t want to feel scared or anxious, but right now I am feeling that way. This is all in God’s hands, and I will just have to know that He has reasons for all that He does and who am I to question why this happened to me or why things are happening this way??
Oh, let me close with a family Christmas photo. Christmas was amazing, by the way.
Thanks for reading! And thank you for your prayers. Much love. xoxoxo
Melanie Putnam 