Earlier today I read that today is National Doctors Day. That means A LOT to me. My doctors, throughout the years, have done everything they possibly could to help me fight my disease, Cystic Fibrosis. They have also done a lot to further CF research and nothing means more to me than finding a cure for CF someday. For all my friends with CF out there, and all the families who have a loved one or know someone who has CF. Our doctors are working hard to make sure that happens.
I have been blessed, from practically birth, by having the greatest doctors I could have ever imagined. I mean it's obvious I did not imagine having Cystic Fibrosis, but having such amazing doctors who can make everything about a life threatening disease a little bit easier makes a huge difference in the lives of the individuals fighting the disease. Like me. That's what happens, a doctor is so encouraging, and working so hard on your behalf to make sure you live as long as possible, as long as you follow your prescribed regimen, what more could you ask for as a patient?
My doctors were always like my family, I always told them about all my adventures, I always took their advice and asked questions for improving my healthcare, and most of all I always trusted them. The day I moved to the adult center I lost all of those doctors, the ones I knew my whole life, the ones who kept me around longer than they had ever expected and what statistics show. I was going into completely new hands in the worse health I had ever known.
Now I have some new doctors. They saved my life, you know, life savin' somethin' somthin' no big deal, hahaha, but really, they trusted in me and gave me new lungs. They trusted me to care for them, and they have been there every step of the way. I have the most wonderful, amazing and inspiring surgeon and transplant team, who are probably the greatest at what they do of anyone on the face of this earth, which they are no doubt, and I know they are looking out for me. How much more could I ask for? I know that all they want is to keep me healthy and living it up! There is nothing better than knowing you can trust your doctors to take care of you the best they can, and give you the best advice no matter the situation. There are no words to express my gratitude for my doctors over the years, but I hope that they all know how much I appreciate them and how grateful I am to have them in my life.
So THANK YOU DOCTORS (especially mine, past and present) for helping the world live it up, despite the illness and disease thats among us.
I am not sure exactly how to go about thanking someone for saving your life.... but... maybe I will figure it out someday.
I know I haven't posted a health update for a pretty long time. But I haven't been seeing the transplant team as much as I used too, which is AWESOME, but, I have also been super busy livin' it up so that is a good excuse!!
So first off, my lung functions are stable, but they did have a bit of a decline for this reason or that, since they stabilized the doctors aren't as worried. Since they don't know what's going on they have been prescribing some different testing to find out if anything else (other than rejection) could be hurting my new lungs.
Most recently I had a swallowing test and a Ph study, both of which were some of the hardest tests in the world for me to complete. I have what I think is one of the worse gag reflexes in the planet, which include the inability to eat pudding. (Weird right?) Drinking contrast fluid (and holding it in my mouth THEN swallowing) is way harder than it sounds, as well as having a tube placed into my nose and down my throat into my esophagus multiple times WHICH DID NOT GO OVER VERY WELL WITH ME. While after all that I had to keep one of the tubes in overnight to check the Ph of my stomach acid for 24 hours. I also saw a thyroid doctor and had some tests done for that so I am hoping that is near the end of the testing craze.
Everything was and has been fine throughout the testing except for the Ph study. I seem to have a problem with acid reflux, high Ph coming up my esophagus from my stomach (which I have been treated for GERD since I was young) but this time it looks like I'm going to need surgery. Especially if this is the case for the lost lung capacity, I do not want it to cause anymore hard!! Which they won't know know, as the acid reflux can come up and hurt my new lungs, which is obviously NOT ALLOWED!!! I want the lungs to keep pumping at 100% of their bast for as long as time allows, so if that means another surgery, I am just going to have to grin and bear it!
At this very moment I am scheduled for a fundoplication, to fix the GERD issue, and if I don't chicken out I will be having my almost 13 year old port-a-cath removed at the same time, thats a bit bittersweet since it is my health security blanket, I have only had one for 20 years… So if you would like you can read a bit about the surgery below (from Wikipedia). I've also included the handy drawing lol.. BTW I am worried more about he diet I have to eat for the weeks following the surgery than the actual surgery. That and waking up without my port...
In a fundoplication, the gastric fundus (upper part) of the stomach is wrapped, or plicated, around the lower end of the esophagus and stitched in place, reinforcing the closing function of the lower esophageal sphincter. The esophageal hiatus is also narrowed down by sutures to prevent or treat concurrent hiatal hernia, in which the fundus slides up through the enlarged esophageal hiatus of the diaphragm.
In a Nissen fundoplication, also called a complete fundoplication, the fundus is wrapped all the way 360 degrees around the esophagus.
UPDATES TO COME!
First off, people are amazing. No matter how many times you or I may think otherwise, there are A LOT of amazing people in the world, and a lot of them in your own backyard. You just can't ever, NEVER EVER, let the people who are rude, ruin the fact that amazing people are out there, everywhere, most just living humbly while being wonderfully awesome.
With that said, I need to fire off a massive (in terms of words) list of awesome people that I must thank particularly today, which I must start with my donor, the person whose life had to end too soon and had a very bittersweet ending, since theirs ended at the very beginning of mine. Their healthy lungs fueled my brand new life. There are no words to express that thankfulness to a person who basically passed away only to give you the chance to survive in the world with people, the ones you love, and the ones who love you back.
People, it may have really only been one's life that changed, but many people are the reason that my life is the way it is. The reason I have this gift and second chance.
Next I must talk about my donors family, the idea that they had all the power in the world and in all their heartbreak to say yes or no to organ donation, YES OR NO!! They had the power to pretty much decide if I lived or died because I didn't have much left. This makes them 1 in a million on the list of people that I am more than extremely grateful for, I very possibly may not have been alive without them and their selfless decision. It is very possible, almost completely, seriously, honestly, am 100% certainly, possible that if I were to encounter these people I would either pass out, or be completely SPEECHLESS. Or most likely both. It is just too much sometimes knowing they are out there, grieving the loss of their loved one, while I am living some of the best times of my entire life. Lastly I must thank my family, friends, and my larger than normal group of people who form the greatest support group I could have ever imagined to have in my life, without them, this second chance at life wouldn't be anywhere near the same.
I know now and forever that I am and will continue to be speechless. Speechless to be alive. Speechless at my quality of life. Speechless at medical techonology, doctors and surgeons. Speechless at peoples generosity and support. Speechless <3.
Switching gears for a moment. As I sit here on my computer. Having just done a short bike ride yesterday, awaiting the weekend which I have been preparing for since I decided to go on this grand adventure for my 1 year lungiversary. I began thinking about 1 year ago. I year ago yesterday I was sitting in my bed on my bi-pap wondering if I was even ever going to be re-listed. Listed so that I would have a chance at new lungs, or even the hope of getting new lungs in the future. 1 Year ago, I knew that my lung function was less than 17% as it had been dropping and had not been tested for over 3 months. One year ago I was strapped to oxygen at 5 liters just to get barely 90% Oxygen saturation out of my Cystic Fibrosis infected lungs, strapped to my bi-pap if I needed rest, strapped to my IV which held life sustaining antibiotics that were no longer working, sucking on nebulizers with antibiotics and other things to ease my tired lungs and hopefully help the multiple daily coughing fits, strapped in my vest attempting to shake out the nasty bacteria filled mucus that plagued my poor dying lungs, strapped to my feeding tube trying to keep my weight up so that I wouldn't wither away before I got the call if i was blessed or lucky enough to even be re-listed. I was in that life, the life I had been living since my parents found out their 8 month old daughter had one of the rarest childhood diseases know to America at the time, knowing that I would not live into my teens or even that, not knowing what to expect in anyway except that I was their first child, and this diagnosis was our reality.
Lung transplant was the only reality worth having hope in for end stage Cystic Fibrosis, because no one wants to talk about the real unavoidable truth that accompanies end stage CF.
Exactly 1 year ago today I was re-listed. Finally, after almost all hope had dwindled to nothing, after the unavoidable questions started rolling through my brain. Thats when my dad got that call, the one we had been waiting for, and when he told us what had just happened we were just carrying on as normal, just knowing we needed to chill, pack go-bags like the other times I'd been listed, knowing we had to have our phones with us at all times because at any minute we could get that phone call. All the other times it had been months on the list and nothing had happened, hope wasn't as it used to be when waiting to be listed, but we had a certain excitement that only could be explained by the relief we felt as if we knew I might not die waiting for new lungs after all.
I might make it. The hope gained from being listed is immediate.
The part that is insane is what happened next. Around 10:00PM on September 15th 2010, only hours after the call alerting us of my re-listing, my dad received another a phone call, from the University of Washington, saying that they had lungs, they had new lungs for ME. Yeah, it was a bit hard to process, when only moments before we had gotten the call of the re-listing, who would have thought? NOT US! We both hopped in the car in a heartbeat, knowing we would feel better if we were already down there, my mom staying to pack last minute items in case she ended up down there for three or four weeks at a time, and attempting to call our close friends and family as well as she could, while other friends carried out the phone tree we had prepared months before. We arrived late as my dad was driving slow, slow driving and an already 2 hour drive equaled A LONG TIME IN A CAR WHILE PRACTICALLY DYING INSIDE. We were both in extreme shock and barely exchanged a word the entire way, this can't really be happening… that is all I could think.
It just a dry run. Its a dry run, I know it. Everyone had a dry run and I hadn't had mine so this had to be it! There is no possible way I am getting lungs tonight, that is just insane.
Or so I thought… Upon arriving at the hospital, after 1:00 in the morning. I was placed in an ICU room, the ones post lung transplant patients were taken to after their surgery. I changed into hospital attire and they told me to get comfortable and sleep if I wanted to, which felt like the farthest thing from possible to try and achieve at that moment. Eventually I passed out around 3AM probably from stress or sleep deprivation, who knows. As I woke up only hours later, it all seemed so weird, friends started arriving and family stayed close, all not knowing if this was going to be their last goodbye or a shared group effort in good thoughts so I would know that all these people would be there when I came out of recovery, and they would all be exactly the same. Either or we sat around, now September 16th 2010, trying to ease the feeling of anxiousness mixed with worry and a tiny bit of heart failure shaken in. They kept pushing back the time they were supposed to come get me saying, 1:00pm is the time, then 2:30pm etc, which made us even more on the edge. As nervous as we were, as soon as we finally calmed down a bit and began to set up a game, they came.
HOLY SHIT! And we're rollin'
Rolling away was, well.. I have no idea, it was like a moment of blackout, because there were only 2 thoughts in my head at that point. Here I go, I am either going to wake up with new lungs, and a second chance that not very many people in the world have been given, or I am going to die on the operating table.. Right then at that exact moment, rolling away from my mom after close to 10 failed attempts at getting an IV in my wrist artery for arterial gasses and other things, also proven good for taking your mind off of what was actually happening, I came up with a conclusion to fix every feeling I had had since the time of the call. This was it, I had a good run, I did everything I could in every aspect of life and I was content, If I came out alive, it was a bonus, but I wasn't afraid to know I might not wake up. I was only afraid of the people I would be forced to leave behind, all of them, the ones I loved.
1 Year Ago TODAY I Woke up with new lungs.
And here I am. Who am I to thank? MY DONOR OF COURSE! As well as doctors, nurses, & family.
I won't even begin to bore you with the facts, in other words, what I've been able to do since the day I walked out of that hospital less than a year ago, but, breathing 100% of the oxygen that I was meant to breath just had to take a detour. Lets just say RoadTrips, VisitingFriends, Snowboard, TrainMyDog, Hiking, Biking, Driving, SpendingTimeWithFamily, TravelbyPlane, Running, & among other MiscellaneousAdeventures I LIVED IT UP!
HERES TO YEAR NUMBER 2!
So I have been very excited to be working towards going on this bike ride that just so happens to be on my lungiversary, exactly 1 year since my life was changed, saved, prolonged, whatever you want to call it, I WAS GIVEN THE GIFT OF LIFE, because of doctors, nurses, my support crew, and of course my one and only donor who was selfless enough to share their organs, so that others could live in the event of a tragedy, as well as their family for acknowledging those wishes. That is who made it happen, and because of them, I have had one of the best years of my life. Not only because I am ALIVE, but because I am healthy and I am living it!
Please consider donating to my team as we need $750 each to participate in this. Oddly enough all the money goes to the American Lung Association. It was pretty random that I looked for an event to participate in on my year mark of having my new lungs, finding a bike ride to wear my new team transplant jersey, AND having the money go to the AMERICAN LUNG ASSOCIATION. So there you have it! I need $750 times 3 HELP ME OUT!! This is going to ROCK!
I cannot believe its been almost a year already Time flies, and doesn't at the same time. I mean, I know how long its been in reality, but it seems like I've been privileged with these lungs for a lot longer than I've had them, and to think that for like 3 months I wasn't even home yet, and even longer I was recovering, it's just INSANE!! Considering the time I've had to do things and what I have accomplished, again INSANE.
I am over half way through the first year with my amazing new gift. Of all the things I thought it would be and of all my hopes for this year, dreams and expectations. Everything I am grateful for has been doubled and tripled through this experience, and the time I've been able to spend with my new lungs has been an incomprehensible addition to my already extremely awesome life. My new lungs, which have somehow changed basically every aspect in my life, especially my abilities, the things I have accomplished since, and my future goals overall. It is just a matter of time before I hope to move on to bigger and better things as I continue my new life with these lungs.
It's still quite difficult to comprehend that doctors are even able to transplant lungs. What boggles my mind is my ability to participate in many things I had not been previously able such as travel, (by plane, ferry and long car trip) without the worry about much of anything related to my health, or anything else really. It's still impossible for me to even imagine the things that I have done since my transplant such as running, biking, hiking, snowboarding, as well as the traveling among many other things. Most things I had not been able to do for years before. Some things i was never able to do. One thing that is a huge blessing and change is the ability to make plans, whether it be a week, month, or year in advance. Most people wouldn't think anything of that, they plan things all the time and expect to make it, but when you are chronically ill, you really have to wait for the day before and even then you might not be able to do what you had planned.
“No duty is more urgent than that of returning thanks.”
I don't know what I can do other than thank god and my donor everyday and live my life to the full so that others can be inspired by it. More importantly, so that others will realize the life changing effects that the decision of organ donation has. The incomprehensible change it will have on entire groups of people, including, but not limited to, friends, families, random passerby's, not to mention the recipient who's life is forever changed with a higher quality of life and a permanent thankfulness that can never be taken away.
So today, before my lungiversary, my 1 year anniversary with this so gracious gift which I have been so blessed with, I just wanted to reflect on the awesomeness of this life I have been given and my thankfulness for my donor, their family, my doctors, nurses, family and friends for getting me to where I am today, keeping me alive, supporting me and giving me this opportunity and chance at a whole new life, something many people would dream of, even better than winning "the car" on the price is right!!
I would thank my donor from the bottom of my heart, but for my donor my heart has no bottom.
I was asked to join by some friends of mine to do the Great Strides walk for Cystic Fibrosis, Washington chapter. The walk was in Seattle so I drove down there to show some support! I also thought it was cool since I'd never participated In the walk before.
While waiting for the festivities to begin I saw the team from the CF clinic that took care of me, kept me alive for 21 years of my life, and whom I hadn't seen since I turned 21. I've missed them a ton and was super excited to be able to say hi! Pictured below is me with my doctors!
As far as the walk went I was surprised how unorganized it was. Just the walk portion, the check-in and finish line seemed very lively and orderly. It was just the route and stop lights (which I know they had no control over) that spread everyone out so much that I felt that it created a less "teamly" atmosphere as opposed to all the walkers being closer and showing how large the group was. The other thing I must rant about is the people smoking during the walk who were also participating in the walk FOR A LUNG DISEASE!!!… Can't win all the battles I guess…
But! Drumrolllllll to the awesome information and reason behind this walk!!! MONEY FOR REASEARCH TO CURE ALL THOSE HAVING TO ENDURE THIS HORRIBLE DISEASE!! Thank you to those who participated or donated money to the Great Strides in Seattle or in your area, it DOES and WILL make difference!!
Shortly after the walk I received this in an email.
Thank you to all of you who came out and supported the Great Strides Seattle event last weekend. Over 900 walkers joined us an amazingly sunny day at the Seattle Center!
Thanks to you, we are projecting that this event will raise over $340,000 net to support research to control and cure cystic fibrosis!
Here are some photos of my group at the walk.
Well, the nurse called us up and they decided that I did not have psuedomonas. Therefore I did not have to start IV antibiotics, hallelujah! But the staph is there so I am going to be taking oral Zyvox instead which isn't so bad. Th other night I ended up in the ER all night once again because of the totally lame colostomy tube I have in my gut.
I was going to the bathroom and I glanced at the tube and realized that it was about 3 inches further out than it had been and I was pretty worried. I only knew that if it should fall out I might have big problems. Like things leaking inside me that shouldn't be there. So my dad and I get to the ER and end up waiting an hour and a half for a room, ya some emergency. So that made us feel good.
Then we wait forever to see a real doctor, like always, and they have to call a doctor after that. They talked about taking the tube out and I was like oh man I hope so, this would be the greatest day ever. Then they talked to my surgeon and decided it was too dangerous to be removed yet, so they stitched it to my stomach, a very lovely addition to my poor abdomen.. NOT.