“Melanie, I cannot understand the rapid progression that your lungs have taken in the past 3 months, or the past year. If you continue at this rate of progression before your next appointment in 3 months, you will be staring a double lung transplant in the face.”
So, those are the words that I heard today from my LAM doctor in Cincinatti. Very difficult words to hear, that is for sure. When I was diagnosed with LAM, I always just heard how PROGRESSIVE and slow moving it was. I never thought in a million years that 1 year later I would be looking at transplant and on full time oxygen.
The results from my day were as follows:
- The echo-cardiogram on my heart was inconclusive and I need to have a new one done to determine if I have pulmonary hypertension.
- I have a form of asthma that will be treated with some inhalers which may help some with the shortness of breath.
- I went from a 50% lung function of a normal person in March of this year, to a 33% lung function now. A RAPID decline. I really can’t get much worse.
- I have high cholesterol which I will need to control with medication. Somehow…Don’t ask me how that happened!!
- I have been instructed to choose a lung transplant center and meet with the transplant team to prepare myself for transplant.
I do qualify for the trial. And that is good news. However, based on how rapidly my lung function is declining, I may be looking at a double lung transplant in the next few months. This means that I would not be able to be in the trial of course. As much as I wish to be in the trial, that may not be right for me…and we will see soon enough what is right.
I was amazed at how kind my doctor and nurse were. VERY helpful…answered all of my questions…and although they of course want me to be a part of the trial, they put my needs first and made sure that I know full well that their number one priority is what is in my best interest. So, we are going to take one day at a time with this and see what happens.
I will be honest…I am absolutely terrified right now. I have cried a million times in the past 2 days. I am so scared that I will be in the transplant center in the next 6 months and will be making some very difficult decisions about my life.
I want more than anything to be an active mother to my boys and be a good wife to Jay, and I feel that I have failed so much at that in the past 3 or 4 months b/c I have been so fatigued and overworked b/c of the oxygen deprivation. I have such a hard time doing anything. I am scared. Did I mention that I am scared?
Anyhow, I have put this all into the Lord’s hands. My life is and will be whatever He wants it to be. I can be scared and hysterically nervous…this is normal. With all that I am going through, how could I not be? But, I do not feel any type of depression or “why me” feelings. I know that this is happening to me for a reason, and I have peace knowing that God is going to use me for something. I have no clue in this world what that is…But I am going to hang on and fight for life to find out what it is.
Please say prayers for me that my lung will stabilize for a while. I know that a transplant is imminent. But, I was hoping I have 5 years at least to adjust to things. I didn’t expect any of this news to be happening.
I pray that God’s Will be done.
Melanie Putnam 
Melanie – DO NOT PANIC!!
I commend you for being so brave to have the testing done. I know you are feeling absolutely horrible right now and depressed, so get on the anti-depressants if you haven’t already. It will help you to think more clearly, because you won’t have all your emotions controlling you.
And just do what the doctors say.
I highly recommend the University of Virginia for lung transplantation (not sure where you are located). They are a small center with an excellent reputation. They understand LAM and their chief surgeon is a genius! Their number is 800-257-0757 and talk to Beverly Ryan. Just leave a message and she will call you back. Tell her Gina sent you.
And by the way, don’t worry too much about the pulmonary hypertension, it is reversible when you use your oxygen.
But you have to get your cholesterol down.
Sounds like you need to get busy….I am praying for you, sweetie…..Hang in there!
Melanie,
The cholesterol thing may be hereditary somewhat. Scott’s been on cholesterol medication for 20 years now. I think your faith and good attitude will do nothing but help. I’ve no idea how you stay so strong.
Mel,
Transplant is not imminent. All that you are experiencing is normal..I am calling you tonight and I love you. Hang in there, and grieve. It is normal to grieve. You grieve a diagnosis as if you would grieve a loss of some kind. Cry, yell, scream, pout, throw a temper tantrum, it is all normal. We will talk tonight on my drive, around 8 or 9 YOUR time. xoxoxo Jenny