6 months post transplant :)

Friday, August 27, 2010

"If I could tell the story in words, I wouldn't need to lug around a camera"

e My sis and I(before transplant)

My mom and I(before transplant)

Me being stupid (before transplant)

Me and my fiance

Me enjoying some druggin before surgery LOL

My bro and I...miss u sooo much:(

My dad and I (before transplant)

Thursday, August 26, 2010

It's the little things....:)

            Growing up having CF, you're doing treatments every few hours and devoting most of the your day hooked up to machines. You don't really know any other way to live. You don't know what it's like to wake up and just leave the house. You have to plan your day according to how many oxygen tanks you need to bring with you and how long you will be there. You have to cut everything short, just because you start to feel "junky" or you have to get home and get some airway clearance. But there is always tons of medicines and treatments to do before you can think of doing anything else. It becomes routine.
            After transplant your daily routine changes dramatically. You literally find yourself lost, because what you normally fill your time with you're no longer required to do. It's kind of funny, but it's been a big adjustment for me! It's been so weird not doing hours of treatments everyday...not that I'm complaining...but you are leaving behind the only life you've ever known. It's almost a mourning process that you go thru...because you must shift your life so dramatically.
             The first time I had to take my oxygen off to start breathing on my own I was actually terrified! I didn't trust my new lungs yet...they weren't 'mine' yet. It took me a while to trust them to do the job efficiently for me completely. It was so weird for me to think that this could actually "work" as a cure for my shortness of breath. But so far it has! My docs have continued to stress to me tho that a lung transplant is NOT a cure for Cystic Fibrosis. You are just simply trading one set of problems for another. Getting a new pair of lungs would also not cure the digestive complications that CF causes. In my case, my stomach has gotten a bit worse. I do have a lot more problems with my digestive issues than I did before. Now, I don't know if that's because of transplant or if it's just my cf worsening. It may just be a coincidence.
              I definitely would love to hear anyone else's views or experiences on this topic. I've heard a lot of other cfers GI issues have gotten worse also after having their transplants...but one of my pulmonologists disagrees that it has anything to do with the transplant itself. Who knows?? I don't! :P
              But there is a lot of different ways to look at having CF. I know a lot of peep who have it and they complain, "Why me?", "What did I do to deserve this", "Gods punishing me", "I wish I was someone else", Blah blah blah...I try to look at it in a different way. Sure, I've said some of these things from time to time. It's very hard living with this disease and it takes a lot of wonderful people from us day in and day out. Everyone is allowed to have their weak moments. I've come to convince myself that I don't think I would be the person I am today without having it. In a way I think it's humbled me. And it's brought me many wonderful things too. A lot of amazing people who work in the medical field, I probably would have never met without having CF, and a lot of great success stories of transplants and CF survivors...I would have no idea about things like that. It's opened my eyes to so many things I don't think I would ever choose to live without. I try to appreciate the little things in life that other peeps take for granted each and every day. I love that I see life in a different way.
               I owe it to CF for actually allowing me to be extremely close to my siblings. I had an older brother with cf, Chris, who passed away in March, 2007. I also have an older sis, Laura, who also has it. I've seen first hand what CF can do, so I'd like to cherish every moment. I'm still getting over his death, it was extremely devastating on our family. I'm not sure that I will ever get over it. It continues to get better but there is always going to feel like something is missing. There is a piece of my heart that will be forever vacant and no matter how you try to fill it it's just never completely full again.:(  Every birthday, every holiday, and every milestone...they will just never be the same. But CF is definitely a bond that we all shared. We sympathize with each other, and always had a pretty good idea of what the other was going thru. It's kind of a blessing to be able to share that with each other.  I helped a lot growing up..it would have been so much more difficult if I had felt like I was alone in all of this. That's one reason I really cherish the CF community online. It's so important to be able to ask others what they are going thru and to be able to relate to one another is priceless. And we can even laugh about it! It's very comforting.;)

                            That's all for now:) bye <3

                            From left...Chris(bro), mom, Laura(sis), Me

Wednesday, August 25, 2010


                  Now I'm not entirely sure why, but my transplant recovery has been a piece of cake for me! It went smoother than I could've ever asked for. My pain was very well managed, I started gaining weight, and a lot of my anxiety just disappeard. Part of it, I know for a fact, was my family and fiance.  I had so many great helpers and such a great support system. Im a very lucky girl!! Thanks guys:)! I also didn't know how strong of a person I had to be. But I'm just very thankful for how everything has turned out so far.  
                 I also found out about my donar,( which I originally wasn't supposed to but a certain RT at St. Joes has a biiiig mouth lol). He was an 18 yeard old guy that ran marathons and loved to play the guitar.  He was a smaller guy cuz his lungs actually fit me pretty well. He died running in a marathon here in Phoenix when he got hit by a car. (Arizona drivers are awesome..) He died at the same hospital where I had my transplant, and that just made our process so much smoother because no one had to deliver the lungs from out of town.  My heart continues to go out to his family because they were so generous at a time when so much was being taken from them. I can't imagine how difficult that must have been.  I've actually wrote them a letter, which I will prob share in another blog.  But they are always in my thoughts and prayers..and always will be.
                I basically got a SWEET pair of lungs. They were used to being worked out in their previous home and they are still young and strong! I couldn't have been more blessed with a better set of breathers. Right before transplant my PFT's (Pulmonary Function Test) had gotten down to 19%...very low. But my first PFT since my sugery I hit 96%! They only continued to climb week after week. I was at the doc's office about twice a week for the first 2 months because they like to keep a close watch on your healing process.  Each visit I had a Pft test and each one was even better than the next! The highest test results I've had so far is 130%!! That's better than most "normal" peeps! So I definetely had something to celebrate. I really can't wait to see how high they will actually climb!
              I only had one small glitch in the road to recovery so far--and that was a little bit of ACUTE rejection. AHHHH! I really hate the word rejection. It honestly scares me a lot. But what I've learned is that just because you're rejecting it doesn't mean it's the end of the world.  It's all about how you feel. If you feel great..then your PFT numbers don't mean squat. I also learned that almost every person who has gone thru a transplant has faced some sort of rejection. It's extremely common in the process. There are different stages of rejection, but ACUTE can be very easily treated by 3 days of IV steroids. That's it! I was basically freaking out over a little thing that wasn't the end of the world.  It can be scary tho, rejection is nothing you want to mess with. I started to think about rejection a lot there for a while, but I had to put that on the back burner. It's just no way to enjoy life..always worrying about what "could" happen. I still think about it from time to time but it does NOT rule my existance.
               After that one episode, I haven't had any more rejection since then and Im hoping that it continue that way! Fingers crossed!!;) 

          That's all for now :) <3

Pics of transplant

This last pic is me before transplant..at my skinniest. There is also a pic of Laura, my sis, and her tattoo for cf, which she also has.


              I got the call on March 3rd, 2010.  The day that changed my life indefinitely.  The most important day of my life (so far)!
      I had a Caring Bridge site that was kept up by my mom and sis while I was in surgery.  I wanted to blog their experience..because as you know, I was completely out of it!  It kinda gives a little glimpse of what goes on during the process.  This was what went on while I was sleeping...

       March 3,2010 9:29am
     Well, we got the call today that we have been waiting for! We are at the hospital right now waiting SOME MORE!  But there is a lot of behind the scenes activity that has to go on before the surgery so it may not be till this afternoon sometime.  We are really excited and anxious all at the same time.  Hopefully this wont be a 'dry run' which happens sometimes. (when the lungs wont work for whatever reason)It looks good so far so everyone keep praying it goes smoothly.

      March 3,2010 6:45pm
    We ask for prayers for Geneva, her surgery.  For the family that has experienced tragedy for her second chance at life. I pray for a 

chance to meet them one day to thank them for this generous gift. And for safe travels for my dad and Geneva's (soon to be)inlaws who are on a plane right now to get here from Nebraska. I pray for them to have a chance to see her before she goes in, and for her surgeons to have a skilled and steady hand. And I pray that thru all of this god will be glorified!

     March 3,2010 8:35pm
    The attending nurse just came in and gave us the go! The lungs are good and they will be proceeding with surgery. They waited so long because the donor is donating to several recipients and coordinating the transplant. They don't get to see the organ until right before they start.
    They estimate starting the surgery in a half hour. It will take 6-8 hours depending on if they need to cut down the lungs to size and piece them together to fit her frame. Geneva was doing pretty well before she went in. They didn't want to give her anything or put her to sleep before hand in case the lungs weren't going to work. With her health already compromised they don't want to put her to sleep and risk her not coming out of it well and the lungs wont even work.  
     So we are sure that it's a go and by the end of the night she should have new lungs!! We are so grateful to see god's hand in all of this. My dad and Marc's parents totally got here in enough time to see her and chat before she went back. Priceless moments that we're so grateful for. We are so blessed and scared to death, but this is good, this is what we have been hoping and praying for.

    March 3,2010 10:41pm
   Her left lung is out. They are getting ready to put her new one in.

    March 3,2010 11:11pm
   Her new left lobe is in! They're circulating blood and oxygen thru it. They originally were thinking they would have to trim down the lungs and piece them together. (I know, crazy right??) But the left ended up fitting perfectly! Praise god! They are now working on removing the right dumpy lung:) She also managed to stay off the heart and lung machine!! This can complicate things and make it more difficult. Its better to stay off it and let the organs do their job on their own (if possible). Keep praying..that is if you're still up!

    March 3,2010 3:24 am
   Well, 4 hours later our little angel has a new set of lungs! They had to size down the right lung a bit, although she is doing great and will be going to ICU soon. The plan is to have her pulmonologists with her all night and she will be sedated all day tomorrow to heal. The hard part is just around the corner these next few days. Please continue to pray for a speedy recovery. We are all very excited to get her life started and are truly blessed to have the family and friends that we have. Thanks for all the support..we will keep you posted!

   That's about all that went down during surgery. Im sure there are minor details left out but that's pretty much the gist of it:)
           That's all for now:) bye!

Tuesday, August 24, 2010


                  Even though everything has happened already, I wanted to blog my lung transplant and my experience of what happened.  It only happened in March, so it's pretty fresh in my mind and I wanted to get it down before I forgot most of it! ha ha 
                 About a year before my double lung transplant I started to get progressively ill..and that happened really fast.  I went from going into the hospital about once a year for an annual "Tune up" of my lungs (which was just aggressively treating my lung infections with inhaled antibiotics, IV antibiotics, and chest percussion 4-6 times a day to going into the hospital for months at a time sometimes with very short breaks in between.  I remember the first time I left the hospital with oxygen attached to me.  My ultimate goal was to leave the hospital without it, because I'd never required it just to allow myself to get up and make myself a bowl of cereal.  I would run out of breath just doing that.
                We had to be educated on oxygen tanks, how they worked, and why I wasn't able to function without it.  That's pretty much all the info we received...but I had no idea that I was DYING. :(   Over the next couple months I was constantly in and out of the hospital all the time. I practically lived there.  But once I started getting worse I think I needed 5 liters of oxygen on me at all times and could not get up and go to the bathroom without someone helping me, and having to stop several times to catch my breath.  I also had extremely bad anxiety attacks from the fear of not being able to breath just at breath and constantly gasping for air. Its if someone is sitting on your chest.  You keep breathing as hard as you can but there nothing for you to grasp because there is no air there.  You start to physically panic because you're so short of breath you literally start breathing harder and harder because of the fear and you end up even more out of breath.  I had to learn how to calm myself down so I could savor the little breath that I had.  Xanax and other drugs like that were not an option for me because it compromised my breathing even more.  Just the fear of dying at any time, an;y day caused me to have a lot of vicious anxiety attacks and caused me to have to battle a lot of depression.
                   My last really bad infection sent me to the ICU.  My doctors contacted the docs a St. Josephs med center..they were the head of the Lung transplant center.  They said they needed to come see me immediately and they actually came up to the ICU that day from St Joes to meet me.  They introduced me to the fact that I was actually at the end-stages of CF and that I was at the point where I needed a lung transplant or I would probably die within the next 6 months..if not sooner.
                    Well, of course the evaluation began right away for new lungs-there was no room for me to get any sicker-and it took about a month and then they decided I was eligible for new lungs.  The hardest part was still to come, even after that bit of good news.
                     Waiting. Waiting. Waiting. Did I mention waiting??  It was absolutely agonizing!  By far, in my opinion, waiting was the hardest part of the transplant process.  I didn't know when I would get the call for when my new airbags would become available.  Would I even make it long enough to get that call? It was always hanging over my head -and it was extremely difficult to sort out my feelings at that time.  And I also felt a tremendous sense of guilt that kinda hit me like a slap in the face!  I started thinking...My life would be saved as a result of someone else dying.  Y them? Y did this have to happen??  It was all too devastating to wrap my brain around it all.  Why did I get a second chance and they didn't??  A lot of extreme emotions flowing thru me at that time and it's very hard to look at the things that life throws at you sometimes.  I actually went thru a little stage of denial- I actually convinced myself this wasn't happening.  I snapped outta that pretty fast tho, because you can't ignore it if you want to become strong enough physically and emotionally for a transplant.  It was not just going to go away.    

                     That's all for now:) Bye


         So..this is my new blog!:) My name is Geneva and I'm 26 years old living my life with the ups and downs of having Cystic Fibrosis. I live in Mesa, Arizona and I have for about 3 years now. Best decision I ever made..moving out of the midwest...because not having to shovel snow off of your car in the morning and walking outside without your eyes freezing shut makes it alllll worth it! LOL!
             I wanted to start a blog because of something my fiance, Marc, said to me one night in bed before we went to sleep. He said, "Geneva, remember when you read all those blogs while you were going through your transplant? And remember how much they helped you? Well I think you should do that so you can help other people in the same situation." Well, not in those EXACT words, but thanks anyways babe.;) It is true though, it did help me tremendously! Reading about others with CF, lung transplants, and everything in between really gave me some different perspectives.
              It's kinda funny, but not really..but if you have cf you've prob had at least one person ask you.."how did you catch that??"..ha ha, so there goes to show you how many people are extremely uneducated on the subject.  I'm a firm believer in CF awareness, and anything that has to do with helping support the research and funding for a cure for CF. It 's very important to me:)
             CF is a genetic disorder that you are BORN with, you cannot "catch" it from anyone or anything! LOL.  But the severity of it can differ from person to person. People inherit 2 faulty CF genes-one from each of the parents. The basic overview of the disease (for peeps who have no clue) is that everyone has mucus that lines the organs to basically protect them from infection and to keep them moist.  We have that mucus but the problem is that ours in extra thick and sticky. It builds up, blocking airways in the lungs and ducts in other organs and this causes serious infections to grow over and over again creating severe lung damage and other organs to possibly fail.  It also keeps the pancreas from producing the digestive enzyme that is sent to your small intestines to help you break down food.  Therefore, we are unable to absorb all the nutrients required from the food we eat so we can grow and gain weight.  This results in vitamin deficiency and malnutrition. Also, becoming diabetic is pretty much to be expected because the pancreas can no longer make insulin we need to bring your blood sugar down. Your body also loses a great amount of salt.
               That's pretty much CF in a nutshell, (and I know I missing a lot of important info) but I don't have time to touch EVERYTHING that Cystic Fibrosis touches.  I'm just not that good.  Ha ha!
                But most of my life has been pretty easy regarding CF, I could function pretty much like any regular kid.  Except for treatments and occasional hospitalizations, nothing really held me back.  It wasn't until my senior/junior years in high school when I started to get noticeably sick, when my health started to interfere with my attendance at school on a regular basis and missing out on social events and such.  
                 Relationships with people can be trying a lot of the time, unlike most "normal" people, getting attached to someone with CF can mean losing them just as quick.  It was always one of the hardest things for me to tell people I had a life threatening illness because A) I didn't want peeps constantly feeling sorry for me and treating me different from any other normal kid, B) I didn't want peeps to be turned away right after I told them because they "couldn't deal" with something like that, C) I thought is was kind of selfish to let someone get attached to me and maybe even falling in love with me if I was just going to end up dying, D) If you don't have the disease its very, very difficult to understand, unless you see first hand, just how difficult and expensive and stressful it is to live with CF.
                   Those are things that people, not just with cf, but with other diseases struggle with everyday.  But I had to understand that my life was worth living even though it may not be as long or the same as other "normal" people.  That I was worth loving and giving others love, and having friendships and just the regular things that life has to offer.

                              That's all 4 now:) Bye!