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 
Melanie, it is o.k. to feel frightened. You are one of the bravest people that I know and I know that God and all those who care for you will be there to see you through this. My prayer for you will that God will fill you with a peace as only He can do and this is achieved through the prayers of all those who love you and care about you. Oh, how I remember the peace and calm I felt before I had my cancerous kidney removed and I know it was an answer to all of the prayers being said for me at that time. We have such an awesome God and He loves you and your family so much. He has been there each step of the way and will continue to be there through it all for you.Here’s a big hug with lots of love. God bless you and your precious family.
I love you Smelly:) You are the strongest person I know and a true inspiration to all. I admire your faith and honesty through all of this and I know you are right – He has a plan for you and things will happen as they are supposed to. Hug the boys for Auntie Mudd and know you have all the support you need from me – love you!
You are a very brave and strong woman. I know you feel anxious and scared but as you said you know His will is for you to be healthy. I believe that too. If you need anything, please don’t hesitate to reach us. Know we are praying for you each and everyday. Not only for you to be well again but for peace in your anxieties. We love you Mel!
Great post, Mom. You are a Trooper! You have such a great attitude and faith in God’s Will. Love you so much. XOXOXO
Mel, you are in my prayers. God bless you.
Hugs, love, prayers, & blessings sent your way…every day. Love, Kari & Family
Melanie,
You are the strongest, bravest, most faithful person I know. If anyone can get through this, it’s you. You have every right to be terrified, but I pray that you can find a place to “store” that so that you can keep moving forward.
Love,
Nicole & Family
Melanie, I am saying prayers daily for you! Our God is THE great physician and you are in His hands! Jeremiah 29:11! Blessings to you and your family.
Melanie- I too pray everyday that God will present you with the new lungs. When I went thru my lung surgeries last year, to look at the big picture WAS overwhelming. But as my pulmonologist told me, just take one step at a time! And truly, if you can put it into perspective, and God’s hands, and get thru one hurdle at a time, He will bring you peace. It really helped me a lot. Peace to you, and I will see you soon.
Hi, I was just reading your blog.
First, I am post double lung tx of 13 years, due to CF. Doing great.
Just wanted to mention that there are centers that get new lungs faster than others. Not sure what center you went to and they said you need to be off Sirolimus for 2 months prior. I am no expert, but would think all centers would want that. Actually Sirolimus is an anti rejection med that some lung recipients are on, post transplant.
Not sure of your illness either, but I was on Prednisone pre tx, and I had to be down to 7.5mg a day pre tx. Not easy to do, it was really keeping me breathing. But I did it. Is there any way you can take prednisone to help you breathe easier pre tx?
Again, some centers are faster than others, some in the USA that do tx’s quickly are Duke, Pittsburgh, Cleveland. I am not sure what out west is fast either. Seems maybe Stanford might be. Also, some centers take on “more risky” patients, which you might be considered with the Sirolimus. All centers are not equal. Most likely you want a center that has done your illness enough to know the possible complications specific to your illness. I traveled 700 miles to get my lungs, as I live in NY, but went to UNC in North Carolina as they do mostly CF’ers. Glad I did, I had complications and they were right there with solutions.
Email me anytime, are you on FB?
luckylungsforjo@aol.com
Mel I am praying that all ends well. I pray they approve you and your condition during the 2 mnth waiting. I pray and know everything will work out. I love ya Mel and STAY POSITIVE. You are a huge role model for me! 🙂 <3<3<3<3
Dear Melanie,
You and your family are in my prayers for the Lord to give you strength and faith and remember that the Lord said “I will never leave you or forsake you” I will also add you to my church’s prayer chain. I know for a fact that in his own time and way the Lord does not go back on his word. After about a 3 year search, we finally found a Doctor that is able to give Dick and me hope that he can take away some of the pain he has 24/7. Anything that I can do for you, please let me know.
May the Lord always keep you and your family in his care.
In Christ
Sieg
I cannot believe it is to this point so soon. I just admire you more than words. I feel I know you, even though we have not yet met in person…I guess sharing this horrific disease will do that. I love you tons, and know it will all work out for all of us the way it is supposed to. You are always in my thoughts and prayers. You are amazing. xo
Hi beautiful Melanie,
First of all, thanks for sharing your feelings about the transplant meeting with us.
I was pretty excited when I was listed 09/09/10 b/c I spent a lot of time and money with moving just to be in the list. Now that I am in the “waiting stage” it has been hard not to feel anxious or down, sometimes. What I mean is, it’s hard to be on where we are now. We do get scared with all the details and the odds… As you well said, who are us to ask God’s will ? He knows better ( I keep telling this to myself ), I’m on His hands and so are you !
I’ll be down here in Brazil praying for our call to come miracously fast!
Hang in there ! All the best !
Love,
Simone
You make my heart feel a wide range of emotions. I feel your pain as a mother to want to be there for your children. In the midst of all of my own health issues I find your words as hope & inspiration to continue on & try to find strength in what we can control. You are loved, by those who are your family, your friends, and even strangers for your ability to take what has been placed before you and give it to God for guidance. *Hugs*
Hey Melanie. All I can say is that you are beautiful, inside and out. You have passion, spirit, and most importantly, belief in God to guide you through this. You are a fighter…I’ve known that since I met you in second grade 😉 You never give up and I know you won’t. Even though I haven’t seen you since the trivia night, I am here for you. Whether it’s just to listen, pick up some groceries, or watch your lil boys (I am great with kids…just don’t have any yet lol) so you and Jay can have some time yourselves. Whatever you need…please know I am here! You can call or text anytime 7210653 🙂