before you read this blog entry........
IF YOU ARE NOT AN ORGAN DONOR PLEASE WATCH THIS VIDEO AND RETHINK YOUR OPTION AS YOU COULD SAVE SOMEONES LIFE WHO MIGHT DIE ON A WAITING LIST WAITING FOR AN ORGAN TRANSPLANT!
I can feel it. The need to breath. The want to breath to see my little girl grow up , graduate, go to college, get married ,and have children. The want to see my little nieces and nephews play sports and be able to be together at holidays and other special moments. I often wonder if me putting my Lung Transplant on (hold) was in my best interest. I have been struggling way more than usual and have a feeling when I go into the clinic to get my 3 month check on my lung function and oxygen levels they will suggest getting put on the (active) waiting list. My last PFT (Pulmonary Function Test) I had done was horrible. I am gradually decreasing. One of the references that they test for Pulmonary Obstruction (which is what I have) is by the FEV1. This stands for Forced Expiratory Volume in 1 second. The maximum volume of air that can forcibly blow out in the first second during the FEV manoeuvre. A healthy girl my age should be within 75-85%. Mine is down to 23% as of December 4th 2009. They use the FEV1 as a huge marker in patients needing transplant as it shows how much obstruction you have going on in your bronchial airways.
Five months ago my mother and my fiance Ryan attended a Lung Transplant Education course needed to complete my final approval for transplant. It put me in a state of mind that I didn't expect. Instead of leaving having some sort of comfort and knowledge I could hardly remember what the lady was speaking about for hours, I had a full blown anxiety attack in the car on the way home, and was convinced I was not ready for this Transplant. The statistics and complications outweighed my struggle to breath everyday by far. Now I'm feeling just the opposite. I'm starting to feel like my struggle for breathing is not only dangerous to my otherwise healthy heart, and my overall state of being. Not being able to gain weight has been the biggest struggle of them all. They call it the hypoxemic diet. Eating nothing but air. In a way its funny but its so true. I spend all day sucking in ridiculous amounts of air , working my heart into a marathon running like state, and all the while trying to stay calm like places in church. Inside I feel so anxious, and nervous.
In my class I learned so much about Lung Transplant and how it works. It was not until 1963 that the first human lung was transplanted. It was NOT successful. Up until 1983 lung transplants were still considered experimental treatments. It was then in 1983, the year I was born that the very FIRST successful lung transplant was completed. I will be receiving all my transplant care at the University of Washington, one of the very best in transplant survival rates and patient care. They are currently transplanting around 50 sets of lungs a year in Seattle.
UNOS is the United Network for Organ Sharing and is an important part of my education on lung transplant. They hold all the Typical wait list volumes for the United States and other vital statistics. Each year there are wait list volumes that follow as such:
Kidney: 78, 829
Liver: 17,010
Heart: 2,670
Lung: 2,183
Pancreas: 1,644
Contrary to what most might think about a waiting list I learned quite a bit that made me feel like if I did get on that list that I would actually have a chance at getting a pair of lungs. They go off of this new system called the LAS (Lung Allocation Score) They test you on a number of different areas like age, diagnosis, smoking history, BMI, Functional status, and 6 minute walk tests to name a few. You are given a score depending on where you place in all these areas. The higher the score the higher you go up on the waiting list. That doesn't necessarily mean that you will be the first to receive lungs because you have to remember that you cannot put 6' tall 250 lb man lungs into my little 100 lb 5'3" body. It has to be a size match. Also, because I have conceived a child I produce a hormone that could not mesh with a donor lung if they too do not produce this hormone. It is complicated, and absolutely amazing that so much goes into getting a pair of lungs. The general wait time is about 683 days according to UNOS as of right now for lungs.
UWMC SURVIVAL STATISTICS
Average survival 2000-2009
1 year- 85%
3 year- 73%
5 year- 62%
these are amazing compared to the overall averages reported by all centers in the US. I feel so blessed to be a part of the UWMC medical transplant team. For instance the Survival for 3 years as reported from all centers averaged out was 66%. That is a whole 7% difference on MY SIDE :)
I am in the WAMI region which means I will receive donor lungs from Washington, Alaska, Montana, Idaho, and Oregon. When my transplant doctor, Dr. Mulligan receives information from another donor center in any of these states the call would go something like this. "Dr. Mulligan I have a set of lungs here from a 125 lb female who has overdosed on drugs. She was pronounced dead 20 minutes ago. She has also had a child and was wondering if you had any donors that could possibly match her." Dr. Mulligan knowing my size and history would most likely say yes i do and would be on the next flight to wherever these lungs are available. First I would receive a phone call or page on my pager saying your lungs are ready you have 2 hours to get here for surgery. He flies a private jet to get lungs, inspects them himself and says yes or no right on the spot after looking at them. If for some reason he gets there and they just do not look like something he wants to put in my body then I would be notified while in a gown in surgery waiting that this was a "dry run" meaning Dr. was NOT pleased with the look of the lungs and to go home and wait for the next phone call. This can happen up to 3 times for some people.
With all this said you can see how I'm scared in some ways but very HOPEFUL in others. When it really comes down to it my whole life will change again. 17 drugs for the rest of my life. Infections constantly. Possibility of rejection. Little to no immune system and that is no fun all in itself.
OK that was just the TIP of the iceberg but information that most of you might not have known otherwise so I wanted to post it so that we are all on the same page. Back to the more upbeat Lisa.....
What good Is it going to do to worry and worry about something that is out of my control.
God has a plan for my life and who am I to question what he has in store for me. I need my friends and family to help me through this and keep me positive. I know I will need you more than I ever have.
God is making this transplant and everything else that has gone on in my life easier knowing that if anything should happen to me, I will be with him forever. Not a bad place to be if you ask me. Does this mean that I'm giving up because it saddens me or scares me in some ways? NEVER! I will never give up. I want to be that 80 year old woman who looks back and says, "WOW I was the percent that defied all percentages and statistics known to man!" That will be me. That will be me!
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