Lung Transplant---101 (not an elective course)

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!

My Inspiration in the realest form

The woman who inspired me to start blogging and writing about my medical journey was V. We found eachother through a post on You Tube regarding IVIG therapy's and it's importance. Come to find out she suffers from Paraneoplastic Pemphigus and the lung condition that I'm plagued with for the rest of my life if I dont get a successfull lung transplant. Her level of PNP was so severe that she actually went blind and again regained her vision some time later. It would be like me falling down and getting my knee scraped compared to the tribulations this woman has gone through to fight for her life. Even though my PNP has definitely got the best of me at times and my life expectancy was hanging by a thread I made it through.

As months go by and the more stories we share with one another and our health the more important I know it is that I must go see her. I will not feel complete in anything I do until I meet this woman. She has a beautiful family and knows EXACTLY what I'm talking about when I say how I feel.

How the thought of stairs makes me want to vomit. How sitting up for an hour in the morning coughing up junk out of my lungs is the norm before even drinking my morning coffee.  How having to pick and choose what to eat and when depending on your PNP flaring up and how it might turn your mouth into hamburger help-me! How having little to no energy to do the most simple things in life makes us feel like we are 90 years old. How getting up and taking a shower and getting ourselves presentable for the day is more like the equivalent of running a 5k.

I know V feels me on all of these things. I have never met her, but I know her. I love her, and I can't wait to meet her and her family. She lives in San Fransisco where I have family that is willing to let me stay if I need to, so I'm getting excited to see her in the very near future.

The reason V is on my mind so much today is because her cancer has come back. She is going through chemotherapy and it just sucks. As if that is not enough she has to deal with our dreaded lung disease which rips every bit of happiness and energy you did have out of your day when its "acting up!" Its just so unfortunate to see her struggle when I wish I could be there to help her when I'm strong and vice versa.
This month her sweet wife Dani and son Parker took her on a trip to see Scotland, London, and Paris to name a few. She wrote me the other day and said that she was in a wheelchair wheeling around seeing the sites and that it was exhausting but spectacular!

V put it simply in her last email to me that she sent from Angel Station in London. Our diseases might take away some things but NOT everything! She couldn't have said it any better. Please remember every day is a blessing. I have certainly been in a funk lately and need to get my self back to my "better more inspirational" frame of mind. I would not be human though if I said every day was sunny without a chance of showers.

Thank you for reading! God Bless all of you who pray for me, V, and anyone else who struggles to hang on for dear life!

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If you are ever interested in following V's blog she is an amazing writer and story teller. Her website is http://www.alotoflife.com/ you can access her blog at the very top uner V'S VERSION BLOG.

To Grandmother's House we go......

(EVERYONE SING) Over the pass and through the mountains to grandmother's house we go. The mother in law knows the way to carry the K - I -A through the rain, hail , sleet and snooooowwwwwww OH!

My fly by the seat of my pants attitude certainly got the best of me this week. On Thursday of last week my soon to be mother in law says to me, "Want to go on a road trip to California tomorrow?" Of course I was all in. Spent the whole day packing and getting ready for Emily and I to go on our road trip with Grammy. Ryan had to work so we left him home to fend for himself. We drove my car, (the K-I-A) to Susanville, California. Contrary to what most might think, this part of California is cold, dry, and COLD! In the mountains it is nestled and is a very small little town. This is where Ryan grew up and played football in high school so I was really excited to see his old house and his hometown.

We arrived on Friday night and as soon as I got out of the car I thought I might be coming down with a cold or something. By the time I woke up on Saturday I was fully stuffed in all my nasal passages and miserable as ever. We were staying with Ryan's Grammy Jane at her house and I just have to say she is the ultimate version of an amazing Grandma. Fresh baked cookies, soft warm beds to sleep in, and meals that even Paula dean could not do justice. Grammy Jane is hospitable, loving, and always trying to make you feel comfortable.

Even though I was not feeling great I tried to visit with family and friends and enjoy my time. By Sunday my heart rate was so fast I knew I had to go to the ER to get things checked out. They did a cat scan , chest x-ray, blood work , and urine tests. I ended up having allergies to whatever was in bloom in that area at the time that caused me to have a severe sinusitis infection that showed up on a CAT SCAN. My oxygen level was at 79% with no oxygen on due to the higher elevation. Being that I only have 20% lung function it made it that much harder to breath up at 5,000 ft when back home we are at sea level. Quite a combo of things going on with a heart rate of 150 bpm just laying down in a bed. I cant imagine what it was while i was up motoring around the previous 2 days. The doctors were very worried about my heart rate and would not let me leave until they felt it was down enough for me to travel back home. This small little hospital in Susanville, CA did not have room for me. They decided to send me by ambulance to the big hospital in RENO, NV for my stay.

I had a HUGE hospital room, cool skylight, bed for my mother in law to sleep in, and i could go on and on. It was a really great room. My view out my window was of the Reno Nevada strip. Pretty amazing! Once doctors got my heart rate down they sent me home with enough oxygen to get to Washington in hopes that once i returned i would go right back to normal. Thank god that is exactly what happened. I couldn't have done it without my Mother in law who was so amazing and stood next to me the whole time. She prayed with me, cried with me, listened to me , and was just there. I love her and will always remember our fly by the seat of our pants trip to california.We can laugh now :)

My beautiful skylight!

Just before discharge!

My sweet Mother in Law!