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.
The surgeries went well, or at least I assume since I decided to sleep for 3 days after and I cannot remember seeing any of the doctors. (There is a follow-up soon so no worries) Amongst the 5 incisions from the fundoplication to correct acid reflux, I ended up with 3 more making the total incisions for this operation 8. Although small, from 5 of them being laperoscopic, my entire chest and abdomen look like World War III considering the scars and incisions from previous surgeries. This MAY be my record, if I don't count the larger incision from my transplant. But it is for sure my record for individual incisions in one surgery.
Anyway, it is safe to say I am port-free and have no way other than my arm/hand to have an IV in for a procedure. So I will avoid that at all costs for sure! My port being GONE is on one side completely insane, since I have needed the thing since I was 3 years old, but the other side is that it's a complete miracle, because I REALLY DO NOT need it right now, at this very moment, or really at all since I haven't used it for almost an entire year. (besides bronchoscopes which the port wasn't really needed)
The port removal took two small incisions, while the spot on my scar that was acting up took one. The transplant surgeons decided to see if they could remove a stitch of some kind holding my ribs together since it might be the culprit of my scars irritation. So far I changed the gauze and everything underneath looked good (steri-strips) sorry for the queasy ones. (photo below) I have never felt so good after surgery before. (not counting the 3 days of semi-unconcious-ness and a 103 degree fever) But eh, that was nothin' lol. Slept right through the worse of it.
Like the title says, I'm on my way to have a fundoplication. Any prayers, good thoughts, etc. would be GREATLY appreciated. UW is an awesome hospital and I know they will take care of me, but I am VERY nervous for the removal of my port, almost more than the post surgery diet I have to keep up for over a month.
If you don't know what a port is, it has made my life easier with all the IV's I required since I was 3 years old!! I had it replaced when I was 10 but other than that, I have lived only 3 years of my life without a port-a-cath. They actually let my keep my first one… I will update once I am feeling like updating! Which will probably be like a week. Until then! Photo365 for the most part .
My brother is doing so much better its a freaking miracle. The doctors here were almost sure he wouldn't be able to come out of this. (we were all 101% more hopeful and than the doctors at the first horrible hospital we were in were it was more than exhausting to be shut down all day, especially for our family and friends awaiting to hear good results)
Although still on the ventilator. Josh has now been awake and able to move his legs a bit, squeeze with his hands and wiggle his toes once or twice. He was moved a few days ago from Bellingham to Seattle, to Harborview medical center. Since he has been there he has made some major progress. After confirming brain function and that there are no issues in that department they are working to transfer again, this time him to the University of Washington medical center so that he can be near the Cystic Fibrosis and lung doctors. He will be in good hands!
Prayers work! Keep em' comin'! I want to send out a HUGE THANK YOU to all of our family, friends, and everyone else who thought of us. Thank you all for the thoughs, prayers, food, coming out to the hospital to sit with us and be there for support and everyone for just supporting Josh and my family it has been unbelievable! I did not forget those texts that have been flowing into my phone sharing hope and support either, THANK YOU ALL AS WELL!
Thanks again and I will update soon!
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 got to spend the weekend in Tacoma, LOVE my aunt and cousins, got the stay with them, always miss them a lot. Went to my friend Austin's graduation party (they are all growing up so fast *tear*) and then had yet another check-up with my transplant doctor. Before going to the doctor my mom, aunt and I went on a walk that I had done some time before my transplant, where I had barely made it back to her car because I could barely breathe. The walk is a loop around 3 miles or so with a very large hill at the end, the rest isn't that flat either. We even have a photo of us in the dark because it took me so long it was dark out! (and we weren't even done yet)
Well I made it this time with ease and also ran up the big hills for fun (and to see if I could) anyway the new lungs conquered that walk! So the next morning I go to my checkup, my mom and I had our bikes because I was hoping to get to ride in Seattle. My Blood work (besides a sort of high white count), X-ray and CT Scan looked good. My lung function test was a bit down, 57%, but I guess not enough for them to worry, and definitely not enough to keep me down. Sounds like I won't have another checkup for 2 months which is a NEW RECORD!!! There is a test they want to do coming up where they will put a tube down my nose, throat and to my stomach to watch my acid pH to make sure my stomach acid is not hurting the new lungs, that will go for 24 hours but I will be able to do it as an outpatient.
Finally we got out of that hospital and on to our destination, Red Hook Brewery, where we would eat after our ride, because the brewery is placed right along the Burke Gilman Trail as I wrote about once before. Best trail ever, minus the busy crowdedness, but you get over it, and I'm pretty sure that it goes for like 1,000 miles . I knew my last ride was 20 miles so I knew I just wanted to do more. Besides the fact that I hadn't eaten barely ANYTHING, mostly because of my fasting for blood levels and waiting for Red Hook food, I did fairly well. We rode and rode, all the way to the grocery store that I had walked to so many time while in Children's Hospital for clean-outs.
Turns out all in all we went over 30 miles, which is my new record. So not only new record for a check-up scheduled, a new record for my bike distance. Most of all I was excited by the fact I was able to wear my all new bike jersey to show some support for the American Transplant Foundation and Team Transplant and of course because the back says "Celebrate Life" AND I was given the gift of new lungs, THE ONLY REASON I CAN RIDE MY BIKE RIGHT NOW, AND THE ONLY REASON I AM ALIVE.
So I thought this sounded like fun. I went through my photos and tried to find some things that I have done since I received my new lungs.
2 miles and 4 miles, more to come! This I was not able to do for years prior to transplant.
Hang out with cool people and eat also lots of food!
Love hiking! So does axel. This I was not able to do prior to transplant.
Be Santa's elf and chill with him and Mrs. Clause:
Yes. So awesome I know.
Ride my bike forever:
Whether its 10 miles of hills or 25 miles flat I CAN DO IT! This I was not able to do for a LONG TIME (if ever) prior to transplant.
Walk my dog:
Almost daily as he has the energy of the energizer bunny… This I would not have been able to do prior to transplant.
Go on adventures:
Have been on many adventures and have many, many more to come! I went on some VERY awesome adventures before my transplant but I always ended up sick or in the hospital shortly after, that does not happen now!
I WAS ABLE TO SNOWBOARD AGAIN!!! Without oxygen! Snowboarded with oxygen for a year (made it a few times) and completely skipped a year before my transplant due to health.
Graffiti Hay Bails:
aka make them look like adorable snowmen, photo taken before I finished. Best idea ever, thinking I probably wouldn't have made it with the oxygen.
Have an oxygen saturation of 100%:
This is just completely amazing. Never before seen in the life of Nina, I hadn't even seen 99 before…
Eat Ice cream!
This was actually my first post-transplant adventure, not even a day after I was released from the hospital, and I WALKED TO TCBY! Probably at least a half mile and it was uphill, just awesome, even though eating ice cream is pretty much all I could do before transplant, it was a huge accomplishment to walk there and eat on my own since I had been on the ventilator for so long.
Walk for 2 Causes!
I participated in the Jingle Bell Walk (2 miles) and a Walk for CF (5k) with over 30 super awesome friends and family members!
There you have it! My totally random things I have done since my transplant list. Hope you had fun reading!
Be an organ donor! Save someones life!
So I'm off the the hospital for the post rejection check-up. That means I have blood work, x-rays, lung function test, appointment, and last but not least a bronchoscopy with biopsies. Its gonna be a loooong day.
Wish me luck! Everyone please cross their fingers and pray for NO REJECTION!!
Rejection is NOT cool.
I had to stay in Seattle only a few weeks after that ordeal. Since I was almost 2 months post transplant and I only live 2 hours from the hospital the doctor said I could return home! YIPEEE!! We were so excited, and so was our families little chihuahua Fuego, since he was my buddy all this time while I sat at home sick on the couch.
As soon as I got home I was up and running, literally. I started walking on the treadmill everyday right when I came home, rode my spin bike other days, and after a month or so I started a running plan. Soon after that I started hiking, biking, lifting weights, and of course just being a normal person. I could now shop, as in walk around with people who shop like their life depends on it, keep up with them and not get tired!! I was able to complete a 4 mile race as well as a 2 mile one, I was also able to ride my bike 26 miles and then a 13 ride that was mostly hills. I have also had the privilege of getting a puppy, as I had wanted to so badly before. I have been taking my puppy, Axel, to dog training, and working on his soon to be running buddy skills. All in all, I have never felt better, and I am stronger than I have ever been in my life.
So far I have had to be on an oral antibiotics as a maintenance a few times. I have had IV once due to some bacteria in the new lungs, but it seems to have cleared it up. I have had a few issues that led me to need quite a few bronchoscopys but better safe than sorry I say! The amount of medications I am now taking is a lot but I have gotten used to it and it is nothing compared to the rigorous treatments faced by the normal Cystic Fibrosis patient as I had done all my life. More recently rejection was found through a bronchoscopy where they had taken biopsies. I am being treated for that now and will soon be re-checked, praying that it all went away!
Now whenever I do something, such as run or ride my bike, I just think… this is so amazing. But then I started thinking. EVERYTHING is so amazing, because I wouldn't even be here right now if it wasn't for my amazing doctors and surgeons, nurses and family and friends, and of course my donor and their family. If you think running a race is amazing, I cant forget that walking to the bathroom by myself without oxygen is amazing, considering what I could do before, this is way beyond amazing, they don't even make a word for it.
WAKING UP IS AMAZING.
Thanks for taking the time to read my story! If you missed any of the previous part of the story they can be found in these links:
A few days later I had another doctor appointment and by this time I couldn't make it to the appointment (stomach acting up very badly) so we went straight to the E.R. Once we got in the emergency room they found out that my heart rate was over 220. They double checked it and sure enough… all the nurses and doctors in the E.R. came and game me an IV, then and IV medication to help calm and slow my heart. We had previously gone in for the stomach aches and vomiting but they seemed to be more worried about this (as it probably would have been cardiac arrest if I had been older).
To say the least they chose to keep me, I was admitted and then seen in the morning for my stomach problems. I think they decided the high heart rate was due to pain in my stomach. When they saw the CT scan of my abdomen they wanted to take me into surgery right away, only 3 weeks after my transplant. So my mom and I look at each other all sad, and then I go off back into pre-op. I did not have to wait long as I already had IV's and stuff and they wanted to get in there as soon as possible because my intestines were so backed up they could have burst. So they did the surgery, placed an epidural and I was back in ICU.
This time I woke up off the vent, HALLELUJAH, but feeling HORRIBLE. The pain and discomforts was like 1,000 times worse than the lung transplant. I feel for anyone with abdomen problems as it is ROUGH! I was not allowed to go home until I had a few regual bowel movements which took days, so I ended up being in the hospital for another week. Due to the placement of the epidural I had no feeling in my legs at all. Meaning I could not walk or more AT ALL. Not only could I not walk that week but when I got the feeling back in my legs I could not walk very well due to the abdominal pain I had.
Since it was really important that I walk and stay active for my new lungs I had a hard time for while. And for my mom and I, it was back to stay in seattle. Only this time a wonderful family allowed us to live in the apartment underneath their home! So I was out of the hospital once again, I could breathe, but I was staying on the couch a lot once again, it felt just like before, except worse, I felt horrible for not using these lungs. I knew I probably just needed time to heal but I still felt guiltily. Right out of the hospital the first time I was walking miles and hills. Now I was barely getting around the house, and boy had I lost leg muscle!
Read part 7 of the story tomorrow!!
If you missed the previous stories, you can find them using these links!
My Transplant Story: Part 1 – Listing.
I was then released from ICU, only a day after the vent was removed, and sent to the regular floor, where I was free of a lot of cords and IV's and I got to take my first shower!!! Which was awesome, you'd never know how much you miss water and showering when you have not gotten the chance for over 3 weeks. I also never want to see a baby wipe again! The other amazing thing (that I had not been able to do for over 6 months) was that I was able to shower by myself with ease!! Completely amazing.
After a day or so on the floor I was completely off all my IV's, eating good, walking, and people had been visiting. Besides how good I was doing I had very bad cabin fever and wanted to be home, the only bad thing about that was, I had to stay in Seattle for a while. For 3-6 months or whenever the doctors said I could return home.
I was only in the hospital a month (3 weeks ICU, 1 week regular floor) which after pretty much just getting out of the ICU we thought was pretty soon, but I was doing awesome and it was safer to be out of the hospital anyways. Going back to the thing I said about being sliced open and having one of your main organs swapped out, you would think that a month in the hospital isn't long at all! So my mom and I got a condo-like hotel in Seattle for the week, since it was my birthday that week, and a couple groups of our friends came down to celebrate it with us. Talk about the BEST BIRTHDAY PRESENT EVER. The gift of life!!! Really, tell me what can top that! My most amazing birthday celebration ever celebrating not only my birthday but my second chance at life which my donor and their family had given me so generously.
The only thing bad about my birthday is I had been getting sick over the past few days. Stomach issues, nausea, and vomiting. My mom and I were super sad since I had walked over a mile from the hotel just a day after we had checked in. As my tummy gpt worse I wasn't getting around as well and wasn't keeping food down. It was sort of off and on and we saw the doctor the next day and they gave me some anti-nausea stuff and said to try that as we thought I was just having trouble with all the new medications.
Read part 6 of the story tomorrow!!
If you missed the previous stories, you can find them using these links!
My Transplant Story: Part 1 – Listing.
It was super awesome that a bunch of my friends and family came to visit but each time was a bummer because I couldn't talk and I was pretty cranky most the time. I was pretty proud that a couple of friends flew a long ways to see me in the hospital. While others drove a long way, each person who came to visit meant a lot to me, even the ones I have no recollection of seeing (but they were there for my momma too!).
(We made a fake race bib because my mom had just ran a race and had the bib in her bag and we decided that going through the surgery was like running a race!)
While I was on the ventilator I used my computer a little bit, painted a horse sculpture thing, and annoyed my mom a lot. I tried really hard to distract myself but it was pretty difficult. It's weird how bad I wanted to be off the vent yet most of the times I was able to try to reduce support from the machine I would panic and have to let the machine breathe for me for the rest of the day. I realized that a lot of me getting off of the ventilator was my lungs and not me, as the whole time I sat there I thought it was my fault and that I was doing something wrong, even though they assured me I wasn't, I just wanted anything to speed up the process.
After a few rough times trying to reduce the breathing support I began to worry about my new lungs and how it would be to breath with them. A few times I did really well, and after I started asking to stay on the amount of support I left off on overnight, I started progressing more rapidly. As opposed to going onto full breathing support overnight so my body could rest while I slept, I stayed on the reduced support that I had practiced on that day. After a few days of less and less breathing support at night I had gotten to the point where I would soon be able to be off the ventilator. Which I was both extremely nervous and excited for at the same time.
I had finally made it to the limited support they wanted me to be at and me breathing more on my own with the ventilator in. After that it was just waiting, day after day, for them to say the vent could be taken out. I knew they had to be careful, because its dangerous if it had to be put back in where the lungs were sown in. BUT I WANTED IT OUT!!! Then one day, the respiratory therapist came in, and yanked that tube out, and I don't think I have ever been happier in my entire life! My mom said my face looked just like it did when I jumped out of the plane skydiving, a HUGE smile.
So after I got that out, the next goal was FOOD! But since I had the vent in for so long I had to wait a few days to make sure I didn't get food into my new lungs. When the lady came to check my swallowing they decided NOT to let me eat until like the next day in small amounts. I was mad but waited and then was very excited for eating since I had not eaten for over 3 weeks and did not get much real nutrition because my feeding tubes had been acting up the whole time I was on the ventilator.
Read part 5 of the story tomorrow!!
If you missed the previous stories, you can find them using these links!
My Transplant Story: Part 1 – Listing.
I went in to surgery with the plan to ventilate one lung and transplant the other, ventilate the other lung and then transplant the second, but since my lung function (17% a month or more before) was not strong enough I had to be placed on a heart lung machine. In doing this they were able to, and they took BOTH LUNGS OUT, yes, I was laying on a table with NO LUNGS. Awaiting the surgeon to put the new lungs in, that to me, is just CRAZY… actually, crazy doesn't even begin to explain that.
I also got to meet some awesome cystic fibrosis and post transplant people while I was in the hospital!
Now waking up in the ICU was a whole other story. I was still vented when I woke up. Which is sometimes common but they said you would get off the ventilator in usually a few hours to a couple of days. This was not the case for me. I was handling things somewhat well so the started taking me off the sedation pretty quick. A couple times I sort of panicked on the ventilator. But after a few days I was going better. Every once in a while I would have a hard time or hard day, but I have to say, NOTHING about being awake on the ventilator is fun. Since I had been awake on the ventilator for 3 weeks I was going back an forth with my ability to handle the huge scratchy tube down my throat and the machine breathing for me. Sometimes I would gag and vomit nonstop. Once I started having trouble it was almost impossible to get my bearings back.
One of the reasons I was on the ventilator for so long was due to a perfusion injury that the new lungs suffered before or during the surgery. The other reason was because I had to start breathing on my own before it could be removed, so they would slowly change the percentage the machine was breathing for me and sometimes I had setbacks where I almost had to start over. At this point if it wasn't for my mom being at my side everyday coaching me to breathe I might still be on that thing!!
The reason I was awake the most of the time (as they would normally sedate you) was mostly because they had been trying to keep Ventilated ICU patients awake and walking so that they would not have problems from being sedated, bedridden, and that kind of thing. So yeah, I was up and walking, which I am thankful for everyday they made me do it! Because it made all the difference in my recovery. Even though it was HARD, and I really did not want to walk with all those tubes hanging out (we counted 8, 4 chest tubes, neck IV, ventilator, catheter, Port IV accessed, feeding tubes, among other things), I did it, and I believe it is the only reason I am able to run as much as I have 6 months post transplant.
Above: Walking in the ICU on the ventilator.
Initially lung transplant patients would wake up already off of the vent, if not a day or two at the most, and probably sedated, besides this ICU was trying to keep people awake, they sedate you at first to see how you handle the vent. So this is not what I was expecting, waking up to 3 weeks on a vent was a lot to sit through, especially with limited communication ability AND NO FOOD OR DRINKS. All I have to say is, extremely frustrating!!! I was NOT PREPARED for this, I am not sure what could have been done to prepare me, but it was a shock to say the least.
Read part 4 of the story tomorrow!!
My Transplant Story: Part 1 – Listing.
The day I was re-listed (for the 3rd time) I didn't really think too much of it, as I had been listed multiple times before and nothing happened, while I sat on the list for months at a time. Never having any dry runs or anything I really thought it was going be a 6 month-1 year wait. Everyone was pretty excited I was at least on the list because I had gotten so sick but we didn't even get a chance to tell everybody when my dad came home that night to tell us we already had received the call.
We were pretty much in shock, as we were expecting that 6 month wait. We had not even had our go bags prepared yet! So my dad and I left for the 2 hour drive while my mom stayed behind to pack in case we ended up staying down there. (My dad and I just wanted to be there early as well, just in case) There was not one thought in my mind I would be having a transplant that day. I thought dry run, dry run, etc. And that's pretty much my thoughts, besides HOLY SHIT I might be having a lung transplant today. Although I was ready for transplant at this time, like entirely ready, and I needed it, I still didn't believe it becoming real. A surgery like that is really beyond comprehension.
Well that morning (after I slept in the ICU room overnight, not sure how I even slept to tell you the truth) some friends and family came and it was a little nervous feeling all around. Or at least I was nervous enough to poop my pants. Lol. They doctors kept pushing back the time they were suppose to take me into pre-op, we were just about to start a game, and then randomly they just showed up saying they were ready! We had waited for so long for this and I was finally being wheeled into pre-op.
The thought of being completely sliced open in what you could be a few hours and having one of your most vital organs just swapped out for someone else's is almost impossible to comprehend. That happens with cars, computers, but with people?! Secondly my thoughts were also with the family at the bedside of their loved one while choosing to donate their organs to possibly ME as they take them off of life support and loose them on earth forever, an extreme mix of emotions. But really so many it almost becomes numb, since there is also that one thought…I really might not wake up, and if I do, I will have the whole world in front of me like never ever before. I will have new lungs.
So there I go, rolling back for new lungs. I don't even think I had feelings left at this point because it was so incredibly overwhelming siting where what was potentially minutes away from a surgery I had been waiting for nearly 6 years, and never really knowing if I would make it there. I knew for sure at this point I had nothing to loose, I had made it to my lungs end, and if I did not wake up, I fought hard and lived it up, so all I had now, was prayers for the donor and family, and the excitement of potentially waking up with the breath of life I had never had the chance to breathe.
Well there I was, in pre-op getting all ready for surgery, after butchering my wrist for an arterial iv and some other iv's they hooked me all up and I rolled away from my momma and dad. I think at that point I was a more scared for them, in case anything were to happen to me in surgery. But there was also the chance I wake up without lungs, the same as when I went in, if the surgeon decided that new ones were not suitable to transplant at the last minute.
All I have to say is, that was no dry run! I was rolled into the fancy operating room with a million machines and even a million more buttons, like something from TV. Some nurses were comforting me and they put a jelly pillow behind my head. And that's the last thing I remember….
Read part 3 of the story tomorrow!!
If you missed the previous stories, you can find them using this link!
My Transplant Story: Part 1 – Listing.