tag:blogger.com,1999:blog-5157303148273351912024-03-04T20:17:34.722-08:00Live.Love.BREATHE =)Katyhttp://www.blogger.com/profile/09575994566777502200noreply@blogger.comBlogger54125tag:blogger.com,1999:blog-515730314827335191.post-52360192661428230772014-06-19T16:23:00.001-07:002014-06-19T16:23:23.362-07:00The "Cysters" hit againNot sure if I wrote about having an article in the newspaper done about Piper, Ali, Kristy, Lyndsey, Kelley and I back in September 2012, incase I didn't - basically they just wanted to do a quick story on our bond as CF and transplant patients. After it was featured we were hoping to get some calls to do some appearances so that we could talk more and get the word out about both how devastating CF is and how amazing organ transplant is.
Two years later, we get an email from a director at the organ donor network saying that ABC is interested in interviewing us on TV! We later found out it was actually for a segment on the Katie Couric show. Our original date got postponed because they said they wouldn't have time to give our story justice on the day we were supposed to tape. So instead we waited and finally taping day on June 10th had arrived. We were all pretty excited because the 6 of us hadn't seen each other all together in quite some time. Lyndsey had moved to florida last summer and Piper after having a second double lung transplant in North Carolina was now home in Colorado. The Katie show flew Lyndsey and Piper in for the show and provided cars for the rest of us. It was a really exciting day. We hung out in the green room for a while. While in the green room the producers went over questions that we were going to be asked so we knew in advance how to answer, we got miked up and our hair and make-up was freshened up. I think the segment went really well. In a short amount of time Katie was able to cover what CF was, what it was like growing up with it and how transplant has changed our lives. She focused on the group and each of us spoke about the same amount of time. At the end of the show she announced that they were sending us on a trip for the 6 of us to rest and relax in the British Virgin Islands!!! Can you even imagine? We are obviously so excited and cannot wait for this to happen. It's a little tricky with everyones schedule and my health but we are aiming for mid august. Hoping that I will be recovered from my kidney transplant and maybe even feel a little better so I can actually enjoy the trip! The actual episode will air on July 23rd - so set yout DVRs!!!
Soooo the kidney transplant. That's another story. My testing and my sister Christine's was all done and we were set for surgery to happen on June 18th. I went in for pre-op the week before and the very next day was called and told surgery had to be postponed because I had yet another infection and spot on my XRay. IV antibiotics were restarted for two weeks and I am hoping that they can schedule surgery soon after before I develop anymore infections.
So that's what's going on over here for now. Nothing too exciting. I am using oxygen a little more than I had been previously so my wishes to return to work, even once a week may not really happen until after I have this kidney transplant and get new lungs. It would be amazing if gaining a new, functioning kidney actually made me feel much better where I could actually live a little and do somethings independently without the need for oxygen. We shall see. There's always room for a miracle, right?Katyhttp://www.blogger.com/profile/09575994566777502200noreply@blogger.com0tag:blogger.com,1999:blog-515730314827335191.post-38759654988277535272014-05-28T22:20:00.000-07:002014-05-28T22:20:50.370-07:00life is short .. do what you can .. when you canWent to the doctor's yesterday for a check-up. I went into the hospital two weeks ago with RSV and pneumonia and was pretty sick. I am home now, feeling much better but still on IV medications. My lung function, even though I'm feeling better is continuing to decline. I am currently at 30%. My doctor's are concerned that my windows of opportunity to get a kidney transplant are closing in. The trick is to do the kidney before my lungs get any sicker. Both of my sisters ended up being a match. Christine is a little bit of a closer match so she is going ahead with more testing to make sure she is definitely a candidate to donate her kidney. Hopefully we will be able to schedule surgery in the very near future. As soon as I am recovered from my kidney transplant, they are going to finish the few tests I have left to be re-evaluated to be re-listed on the waiting list for lungs. Right now my lungs are "too healthy", but with time they will just get worse.
Thankfully right now I have not been needing oxygen. My breathing is horrible, but not being dependent on oxygen has been a blessing. I am okay when I am sitting at home, or doing things really slowly, but the second I have to do anything strenuous, I get REALLY short of breath. I feel like there is no oxygen and I'm just gasping for air. I'm in such a weird place right now. I wish that I was just able to breathe and that this chronic rejection miraculously disappeared. I want to go back to work. I want to make money so that Joey and I can start saving for a house. I want to be able to plan vacations again. I feel like once again, my life is on hold.
People might think I am crazy, but as long as I am not dependent on oxygen - I am actually going to try to go back to work. Not full-time, but maybe once a week. To keep myself active, to make some money and to feel productive. I seriously hate not being able to contribute money at all. The NICU is a really safe area and the people that I work with are always looking out for me. I honestly think I'm more at risk of catching infections and viruses when I'm out in public, at work I use protective barriers and am always super careful. I am really so blessed to have a job that I love, that I cannot wait to go back to. Most people would actually like being in my place and not having to work. Since I am little, I have always liked working and staying busy. The more that is on my plate, the more productive I am. I'm definitely more of an "all or nothing" type person. Sometimes it's not the best characteristic trait, but I am pretty proud of my work ethic and wouldn't change it for the world.
I know that the next few months/year is going to be rough. Things unfortunately are going to have to get worse before they get better. I think the only thing I can really do, is live each day as fully as I possibly can. I do not want to ever look back and have regrets, wishing that I would have done more. Katyhttp://www.blogger.com/profile/09575994566777502200noreply@blogger.com0tag:blogger.com,1999:blog-515730314827335191.post-13450326599556296622014-04-14T00:46:00.000-07:002014-04-14T00:46:15.269-07:00Can't sleep ...It's almost 4am and here I am wide awake as usual. The past week I have been feeling really shitty. Not that I really have felt "good" recently, but it's definitely been getting worse everyday. My fatigue is so bad. If I wanted to, I could probably sleep for 24 hours straight. My appetite is non-existant. The few times I have tried to force myself to eat, I end up running to the bathroom and vomiting within my first spoonful. I don't know how much of this is strictly kidney related, or how much is kidney and chronic rejection related. I am just hoping that some of it gets relieved a little when I finally get a kidney transplant. I know I will still be in chronic rejection, so I am not expecting miracles - but just to be able to tolerate food would be nice. I am down to 83 pounds. This is the lowest that I have ever been. Even prior to my first transplant, I was skinny but not this bad.
I've decided to give up on school for now. At this point in my life, a higher degree would be nice, but it isn't necessary. I have so little time when I feel good lately - that I would just rather spend that time doing something fun with Joey or my family - and not having to stress about what readings and what papers I have to do for school. I'm an RN already. I have a job that is willing to take me back whenever I am ready and feel well enough to work. School was something that I thought would be a good distraction from everything else that's going on - but it really has just been more of a stressor for me.
My lungs are failing and my kidneys are shutting down. I am slowly dying and it's scary as hell. I am really hoping that come next year, this period of my life will just be a bad bump in the road that I had to get through to become healthy again. However, I am realistic and I know that I may not get anymore miracles. I may not make it. I'm going to be 30 in less than two weeks - and all I want is to feel good. I don't care about material things. Everyone keeps asking me what I want for my birthday, but what I want isn't something that can be bought. I want to be healthy, I want a long future with my husband. I want to grow old and have a baby and buy a house and do everything that I've ever dreamed of. NONE of that right now can happen unless I get a new kidney and new lungs. Katyhttp://www.blogger.com/profile/09575994566777502200noreply@blogger.com2tag:blogger.com,1999:blog-515730314827335191.post-85850732294004154452014-03-13T12:39:00.000-07:002014-03-13T12:39:11.885-07:00Here we go again ...I've decided that it's time to start being more consistent with my blog entries. Life has decided to throw me some more curve balls and I think it's good to keep a record of events and feelings. People always tell me that with everything that's happened and everything that is about to happen, I should write a book. I personally do not think I could write a book, but maybe in the future, my blogs can help someone else write a story or book about these adventures.
Tuesday marked 28 months since my double lung transplant. The first 12 months post transplant were absolutely amazing. I couldn't have asked for anything better. I was able to return to work full-time, I ran a 10K in Central Park, Joey and I got engaged, I went on a road trip to Texas, life was good. When people say "health is wealth", it's really true. I felt like I could take on the world. In December of 2012 after having the parainfluenza virus I ended up in the hospital with a bout of acute rejection and ended up in respiratory and kidney failure. I was on life support for a week. My family was told to prepare for the worst. I experienced my second miracle. I came off ECMO and dialysis and recovered. My brain was not damaged at all and after a long recovery I was once again able to return to work full-time and get busy with planning my wedding. My lung function post ECMO only went up to 78%, but I felt amazing so the numbers didn't really bother me. My doctor had said that 78% might be my new baseline after all of the damage that my lungs went through in December. I was okay with this. If I felt good and was able to work and be productive I did't care what those numbers said. In the months before my wedding, my PFT's began to slowly decline. After a bronchoscopy culture, I was diagnosed with a bacteria called MAC that required a combination of three oral antibiotics to be taken over the course of a year. The bacteria was not contagious person to person, it is something that exists in the environment and people with weakened immune systems are susceptible to it. I was also diagnosed with severe reflux in which case I had a Nissen fundoplication done to stop the acid from possibly entering my lungs. I was secretly hoping that the combination of reflux and MAC were what caused my decline in lung function and not chronic rejection, which I told was another possible diagnosis. After having the surgery and being on medications for a month for MAC, my lung function was still decreasing.
28 months after my first transplant we are now discussing both a kidney transplant and a second lung transplant. I am definitely in chronic rejection. My lung function is at 44% right now. When someone is in chronic rejection they usually start off by giving them Zithromax a few times a week, followed by IVIg. I am already on Zithromax (part of my MAC protocol) and had received IVIg while on life support. My only two options left were photopheresis or campath. Both treatments are aimed at stabilizing your lung function from progressing any further. Neither were reported to help you gain back any lost lung function. My doctor and I decided that it was best to start photopheresis, since it was less extreme than campath. I had to have a port placed for Photopheresis. For the first 6 weeks I have gone into the hospital weekly for an overnight stay. On wednesday I would go in, they would access my port and do one photophereiss treatment and then the next morning I would do the second and go home. I just completed my 6th week and I will be going to the doctors next week to evaluate whether it has worked or not. I'm not sure what my lung function is, but my breathing has gotten worse over the past few weeks. It's to the point where I actually need oxygen again during exertion. I get so exhausted and short of breath, my oxygen levels fall and my heart rate skyrockets. If my lung function is lower next week, then we will do a bronchoscopy to culture and see if the MAC is still present. Campath would be the last treatment option to try but it comes with risks. It basically eliminates your immune system completely and makes you highly prone to infections. If your body already has an infection (I have MAC), that infection could actually become stronger since my immune system is being wiped out. In the next few weeks/months I will be starting the evaluation process for possible listing on the lung transplant list for a second time. Before all of this happens however I am having a feeding tube placed on 3/25. My weight has dropped and my BMI is 16 (normal is 18-22). Having a lower than normal BMI, I wouldn't even be eligible for a transplant. I need a feeding tube to help me bulk up so that I meet the requirements for listing. I also need a kidney transplant. My kidneys failed in 2012 when I was on ECMO and ever since then they have not really recovered. They are not to the point where I need dialysis yet, but my numbers to fit the criteria to be eligible for a transplant. You need normal kidney function to be listed for a lung transplant, which is why a kidney transplant needs to happen before a second lung transplant happens. My sisters Christine and Tricia are going to be tested to see if they are a match for a kidney transplant. If one of them is a match, then we can schedule the transplant whenever we want. It would be a live donor so I wouldn't have to go on a list and wait for a donor. If they are not a match, then I will ask any family or friends who would be willing to donate a kidney to get tested. It would be best if we could find a live donor so that we could eliminate having to go on the waiting list.
That's just a brief little history of what has happened health wise over the past few years. It hasn't been all bad. I am now officially Mrs. Joseph Monte!! We went on an amazing honeymoon. We have been living in our apartment for a few months and it is slowly becoming like home. I love being married!! I am also enrolled in an online graduate program for my Masters in Nursing Education. I am not working full-time right now, but plan on working per diem maybe once a week depending on how I feel. My masters is something that I want regardless because eventually I would love to teach part-time, either a skills lab, clinical or even an online course. I think that being in school and having something to concentrate and focus on besides just being sick - is really beneficial for me mentally.
As always, I will continue to fight and hope that I am able to eventually get new, healthy lungs. I am not ready to go yet. I have way too many things that I want to do and accomplish in life. Hopefully there are some more miracles in store for me. I want to grow old and gray. I want to obtain my masters and I want to have children with my amazing husband.
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg55xdzxmjstpu0fULFw-suuH1I1P8F3SCxY1pBKUAoG1PGcZJopGd8DPeq-bwrvp7BUIe4Tnzj835R_Bd9jeG__B8uKOzvzJh-Aygaw_PruldgZZCGEo7YbPY1jqXzJDHhwx5ysiB_8kQ/s1600/raining-1-1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg55xdzxmjstpu0fULFw-suuH1I1P8F3SCxY1pBKUAoG1PGcZJopGd8DPeq-bwrvp7BUIe4Tnzj835R_Bd9jeG__B8uKOzvzJh-Aygaw_PruldgZZCGEo7YbPY1jqXzJDHhwx5ysiB_8kQ/s320/raining-1-1.jpg" /></a></div>Katyhttp://www.blogger.com/profile/09575994566777502200noreply@blogger.com0tag:blogger.com,1999:blog-515730314827335191.post-20911311988605308262013-11-12T00:51:00.000-08:002013-11-12T00:51:49.521-08:00TWO years .. It's been two years since my life was saved by a complete stranger. A family lost their daughter and decided that they wanted to donate her organs, two lungs which happened to be a perfect match for me patiently waiting on the list for a transplant. My life will never be the same. I am so incredibly thankful that I have had this amazing second chance at life.
A LOT has happened in the past two years. Some good, some bad, some amazing and some really scary - but you know what? I wouldn't change it for the world. "Angela's" lungs have given me the chance to go on a road trip with Lyndsey and not worry who was going to do or when I was going to do chest physical therapy, I went back to my job, saving tiny premature babies, I've gone rock climbing, I ran a 10k and did a 5k in MUD! I got engaged and married to my best friend and the best man in the entire world!! I was on an episode of Say Yes to the Dress. I've been able to play and run after my nieces and nephews. None of this would have been possible without Angela and without organ donation.
Last year at this time I became pretty sick from the para-influenza virus. I ended up on ECMO (life support) and on dialysis because my kidneys were failing. No one knew if I was going to make it - but I did! Miracles really do happen when you believe. Three months after that I went back to work - when doctors found out I was on ECMO they were shocked to see how well I was going.
A few months ago my lung function randomly started to decrease. I had bronchoscopies and they were negative for acute rejection. My first bronch showed that I grew out Pseudomonas - so I did a month of nebulized colistin and then two weeks of IV Ceftaz. My second bronch showed that the pseudo was gone but now MAC grows. Treatment for MAC is intense. Triple antibitoics for 9-12 months and possibly longer. At my last appointment my doctor said she believed I am in the beginning of chronic rejection because they just can't understand why my lung function keeps dropping. They did a pH probe just to see if my GERD got any worse and since transplant it has. I now have severe acid reflux requiring surgery. I am hopeful that between the treatment for MAC and the surgery that my lung function will go back up and that its NOT actually chronic rejection. My doctor said this is a possibility. So please pray with me, do whatever you have to. I am not ready to say goodbye to Angela. I have so many more things I want to conquer and do and I need healthy lungs for all of them!!!Katyhttp://www.blogger.com/profile/09575994566777502200noreply@blogger.com1tag:blogger.com,1999:blog-515730314827335191.post-11013062908186154152013-03-11T21:39:00.002-07:002013-03-11T22:11:31.431-07:00It's okay NOT to be okay ...<span class="Apple-style-span" style="color: #674ea7; font-family: Verdana, sans-serif;">I honestly can't even remember the last time I blogged. I've thought about it often but I guess life happened and it just became something that wasn't top priority to me anymore. Receiving the blessing of a double lung transplant on 11/12/11 was the best day ever. My engagement was also an awesome and absolutely perfect day - but the transplant is number one, only because if I hadn't gotten lungs - well - the engagement would have never been possible. My lungs were too sick and I wouldn't have made it and still be here today.</span><br />
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<span class="Apple-style-span" style="color: #674ea7; font-family: Verdana, sans-serif;">The first year post-transplant went by really well. I got engaged. I went on a road-trip to Texas with one of my best friends, Lyndsey. I went back to work. I ran (well ran/walked) in a 10K to support Cystic Fibrosis. I was able to go to Disney World in September with my family and keep up with and even RUN after my nephews. I honestly felt like things could not possibly get any better. I had energy, I could breathe - I even worked a LOT of over time hours. Not because I NEEDED the money but because I could, and I loved working.</span><br />
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<span class="Apple-style-span" style="color: #674ea7; font-family: Verdana, sans-serif;">On my one year anniversary 11/11/12 - my immediate family had a dinner for me. It was a last minute thing because people were still displaced from the horrific Hurricane Sandy, but they didn't want my anniversary, my first "breathday" to go by unnoticed. I felt a little weird that day. A little more sweaty, kind of like I was coming down with something - I honestly thought it was just a little cold. I ended up in the ER a few days later. I was in the hospital for 2 weeks. I was diagnosed with parainfluenza virus. They put me in the MICU so that they could watch me closer and my lungs needed help breathing so I was started on bi-pap. I did go home without oxygen. My PFTs had dropped at my next appointment and it was assumed that I just needed some time to get better, not that anything else was going on. 12/9/12 began the WORST hospitalization I have had and hope to EVER have in my entire life. </span><br />
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<span class="Apple-style-span" style="color: #674ea7; font-family: Verdana, sans-serif;">It's honestly all a little blurry for me because I was having high fevers and just felt like complete shit. I was again admitted through the ER. I was put on bi-pap. At some point I was transferred to the MICU again. Bi-pap wasn't enough so they intubated me and put me on a conventional vent, but as time went on a regular vent was not enough so they put me on ECMO (extracorporeal membrane oxygenation (ECMO) is an extracorporeal technique of providing both cardiac and respiratory support oxygen to patients whose heart and lungs are so severely diseased or damaged that they can no longer serve their function). Due to the ridiculously high doses of medication to treat the rejection my kidneys also began to fail and they started dialysis. My doctor's prepared my family for the worst. However through some sort of miracle and tons of prayers, I pulled through and was taken off of the ventilator, ECMO and dialysis. It was a very long 8 questionable days for my family and I. When I woke up (they had me completely sedated), I saw all of the prayers and love and support that my family and I had gotten and was completely overwhelmed. I just cried for a few days straight. It's now March and while I am much better, I am STILL recovering. </span><br />
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Me on ECMO & dialysis - almost unrecognizable (December 2012)</span><span class="Apple-style-span" style="color: #674ea7; font-family: Verdana, sans-serif;"> </span></div>
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<span class="Apple-style-span" style="color: #674ea7; font-family: Verdana, sans-serif;">As if all that wasn't enough - other stuff was happening in my life and it just seemed to all snowball. I felt like I had lost my fighting spirit. At one point I honestly thought it would have been better if maybe I hadn't fought so hard. Today, I know how stupid and idiotic that sounds. I was given these lungs for a reason, and I'll be damned if I let some setbacks ruin my drive for life and the precious gift that I was given. </span><br />
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<span class="Apple-style-span" style="color: #674ea7; font-family: Verdana, sans-serif;">Recovery from all of that has been hard. I am still not 100%. Everyday is getting better and better. I am having a problem with my red blood cell production (the kidneys produce a substance that goes to the bone marrow to stimulate red blood cell production). Since my kidney's are still recovering, they are not producing enough and I am really anemic. I was just started on a weekly injection which is supposed to boost the production of red blood cells, I am hoping it kicks in FAST!</span><br />
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<span class="Apple-style-span" style="color: #674ea7; font-family: Verdana, sans-serif;">I also started a Graduate Nursing Education program which I was super excited about in January - the day after I got discharged from the hospital. I ended up deciding to withdraw. I am now on a medical leave and can enroll within a year and start again. I just felt like with everything going on, my health still not being 100% and my mental state somewhat in question - school was just not a smart option. PLUS - I needed time to plan my DREAM wedding!!</span><br />
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<span class="Apple-style-span" style="color: #674ea7; font-family: Verdana, sans-serif;">On February 5th, my family lost an amazing man. My Uncle Tommy died suddenly and unexpectedly. It has been a really rough time and I know this is just the beginning. My Aunt and Uncle and cousin have lived two houses down from me my entire life! They have always been my second set of parents. A refuge for when I couldn't take my house. My uncle was the most caring man in the world. I went on so many vacations with them. He always tried to make my cousin Erin and I happy. From driving and getting lost for hours just to find us stuffed animals that we wanted in Disney, to moving all of the living room furniture out so that we could roller skate around because it was too cold to go outside. He was such a good hearted man. I am still kind of in denial, I don't even know how my cousin and Aunt are being so strong. I wish with all my heart that there was something I could do to comfort them, I just hope they know how much I love them and that I would do ANYTHING for them. </span><br />
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<span class="Apple-style-span" style="color: #674ea7; font-family: Verdana, sans-serif;">My friend Lyndsey was in Australia when she had a little blip medically. She also has CF and received a double lung transplant in April 2011. When she came home she had a procedure and found out she had cancer (PTLD). PTLD is a type of lymphoma that can happen post-transplant in various areas of the body. She had surgery to remove the section of her colon where the cancer was, but is still waiting on blood and bone marrow results to see if they need to do chemo or anything further to treat it. Lyndsey and I became really close friends while she was waiting for her lungs. She was transplanted one month before I was put on the list. She has literally become my lifeline and I don't know what I would do if anything happened to her.</span><br />
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<span class="Apple-style-span" style="color: #674ea7; font-family: Verdana, sans-serif;">I feel like it's okay if I feel pain and I'm hurt but I feel horrible when I see the people I love hurt. The day after my Uncle's passing - I started seeing a therapist. I've been against it for a while because I went when I was younger and had a creepy and bad experience. That particular lady just stared at me like I was insane and expected me to do all the talking. Now, I am really happy with my therapist and actually look forward to going to our sessions. It's really nice to get everything (and there's a LOT) in my head out and to a person who is not involved at all in my personal life. I now highly recommend it if you ever seem to be in funk. </span><br />
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<span class="Apple-style-span" style="color: #674ea7; font-family: Verdana, sans-serif;">I still have a LONG way to go. My PFTs are still down, I have lost about 15 pounds and I am still lacking energy due to the anemia BUT I do finally see light at the end of the tunnel. Whatever else life hands me, for right now I can take it. After almost dying in December I think I'm even tougher than before. I kind of wanted to write this blog also to let people know that bad things happen. Sometimes it takes a while, but eventually the pieces do fall together. Sometimes you need a reminder from other people, sometimes you need to hole yourself up and close off the world for a little while and sometimes you just need to give it time. EVERYONE has fears and is scared of things that they won't admit to. I can honestly say - I am scared as hell that I will end up in rejection again and in that same state - but I can't let that paralyze me anymore. I am trying to live each day and be thankful for still being here. I am going to consume myself by spending time with the people I love, working out to strengthen my lungs as much as possible, going back to my job which I love and planning my wedding and honeymoon. </span><br />
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">March 9th 2013!</span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"> Kristy, Myself and Lyndsey this past weekend celebrating Lyndsey's 28th BDAY!</span></div>
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Katyhttp://www.blogger.com/profile/09575994566777502200noreply@blogger.com1tag:blogger.com,1999:blog-515730314827335191.post-49912500569799672662012-07-22T18:15:00.000-07:002012-07-22T18:18:40.590-07:00It has been quite a while since I have written and I feel like a slacker!! Although lately, my life is chock full of events that I don't think I can really call myself a slacker or lazy. I wish I had more time to devote to this blog .. but when I don't have time to write, it's a constant reminder that I am out doing things and living life because I am NOT sick anymore!<br />
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A lot has happened since the last time I wrote. We have the set the date for our wedding. I got my dress and was taped to be on an episode of TLC's Say Yes to the Dress! I am now working TWO jobs! I applied to graduate school to get my Master's in Nursing Education, I am hoping to start either in the Fall or by January.<br />
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Okay so the health front .. My 6 month bronchoscopy showed MINIMAL rejection. I was treated with a quick steroid burst. I was slightly crazy and irrational for a few days when I was on 50 and 60mg of Prednisone but I am not back to my maintenance dose of 10mg, which doesn't really seem to effect me that much. At the beginning of this week I had another bronch just to check and make sure the rejection was treated with the steroids (and it was - NO MORE rejection!). They actually say with acute mild rejection that treatment with steroids is 98% effective - which is pretty amazing. The word rejection is so scary. But to have it be completely gone with just a little steroid burst and taper is not so bad.<br />
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I started working again per diem in March at my old job in the NICU. With health insurance and wedding plans developing it was really time to start working full time. Unfortunately there were no full time positions available so I sent out my resume. I ended up getting a full time job in a great hospital in the Neonatal ICU. So right now I am on orientation for my new job and still working per diem when I have a free night for my old job! I have some amazing friends at my old job that I really don't want to part with - so it's fun to pitch in and work here and there when they need me. Not to mention the extra money doesn't hurt when you are have your own wedding coming up and a bunch of friends getting married as well!<br />
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On to the wedding. We booked for next year - October 11, 2013! We are having the ceremony at my local church and then the reception will be held in Long Island right on the water! I went to Kleinfeld's in the city (the most amazing bridal store ever) and fell in LOVE with my dress! The episode will be airing during Season 9 which I believe starts in September. I will have an exact date soon and keep everyone updated!!<br />
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And last but not least, yesterday I actually completely a 10K! For anyone who doesn't know conversions, that's just a tad bit over 6 miles! Joey trained pretty hard for it. I feel a little guilty because I didn't train as hard as I said I was going to, because life just got in the way but I finished and crossed the finish line in 1:30 minutes. Considering this time last year I was in a wheelchair and couldn't breathe without oxygen, it's a pretty amazing feat. Besides Joey, I participated with a few of my amazing cysters; Lyndsey, Piper, Bobbi and Gabby. Lyndsey and Piper are also both post-transplant and Bobbi and Gabby have not been transplanted and still ROCKED it!<br />
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All in all, life is pretty freaking amazing right now. I couldn't be happier, I have so many awesome things going on and to look forward to! All this thanks to my donor Angela. For the last 8 months, her and I have made a fabulous team. I can't wait to see what the future holds and to take us on more adventures!! I also think I am going to start working on my letter to her family. I know it's going to take a little while to perfect exactly what I want to get out and make them see how much I love and appreciate their generous gift of life. I still can't believe it's been over 8 months since I got that life changing phone call.
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9N9HYAvk_7w9ahPNCH_xeTGE2Due9JKDtvQR-zo-qnf4hwObxRHqLX8Mwei3PFprsLVh4LsCYTI0D_vcdd0Br9_J8BYqJK1avaj-B3du0-1JVwiXlfo-OjbbmzewmLqkLC8c99vhVTKs/s1600/IMG_1690.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="238" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9N9HYAvk_7w9ahPNCH_xeTGE2Due9JKDtvQR-zo-qnf4hwObxRHqLX8Mwei3PFprsLVh4LsCYTI0D_vcdd0Br9_J8BYqJK1avaj-B3du0-1JVwiXlfo-OjbbmzewmLqkLC8c99vhVTKs/s320/IMG_1690.JPG" width="320" /></a></div>Katyhttp://www.blogger.com/profile/09575994566777502200noreply@blogger.com2tag:blogger.com,1999:blog-515730314827335191.post-32110730010891936602012-04-17T22:20:00.004-07:002012-04-17T22:37:26.915-07:00The future Mrs. Monte!<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiAwMvPz20euyQA2bV2oauXmzSOl7WV_qjibwCfYDi4ldfnWX0CgCBDCw8LrONW6cjG-AjgnmAzhU9qkdzP2ysuuurG34PkxygOln2LK8p35ycwzHzkeDqO1cJ-PQxZjh0U-nW0SsBZju8/s1600/414551_10150647620936968_675476967_9648139_1478594632_o.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 249px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiAwMvPz20euyQA2bV2oauXmzSOl7WV_qjibwCfYDi4ldfnWX0CgCBDCw8LrONW6cjG-AjgnmAzhU9qkdzP2ysuuurG34PkxygOln2LK8p35ycwzHzkeDqO1cJ-PQxZjh0U-nW0SsBZju8/s320/414551_10150647620936968_675476967_9648139_1478594632_o.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5732610622663767154" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhAsYBU8UzdfzdzDMIIfPRP7IFzXH9LhO8IENkc_eTe80tiR5TUtgHsulP-xcjPzdpzl8gRIkQ0scuKlXZZEc71kxsdGpqOuR9hNkzx3HfH_D2uUP-9pmSRyYQSON3j0tAcnLY9bjjWlww/s1600/574977_10150661109990423_635585422_9512025_1823664462_n.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 118px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhAsYBU8UzdfzdzDMIIfPRP7IFzXH9LhO8IENkc_eTe80tiR5TUtgHsulP-xcjPzdpzl8gRIkQ0scuKlXZZEc71kxsdGpqOuR9hNkzx3HfH_D2uUP-9pmSRyYQSON3j0tAcnLY9bjjWlww/s320/574977_10150661109990423_635585422_9512025_1823664462_n.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5732606541348222210" /></a><br /><br />Yes ladies and gentleman, I am officially engaged and the soon to be Mrs. Joseph Monte! I can honestly say that I think my proposal was the best ever - it couldn't have been more perfect!!<br /><br />I woke up yesterday morning 4/16/2012 and at 7:30am was a little confused to see my cousin Erin in my living room. She had a gift bag from Joey - that had a letter detailing what my day was going to be like! I thought I was just going to have a special birthday celebration - little did I know what this boy has been planning for god who knows how long!! A limo picked Erin and I up at my house and brought us into the city where I met with a personal shopper that we know at Barney's. Joey told me to treat myself to a new outfit for dinner and a pair of shoes (not just your run of the mill shoes, Christian Louboutin's if I pleased!). After finding a fabulous dress, Erin and I had lunch at Fred's, the restaurant in Barney's. The limo then brought me to the Carlyle hotel, where I said goodbye to Erin and headed up to the Salon. I had my hair, makeup and nails done. Joey then met me and escorted me back to our hotel room, where we were upgraded to a suite with two bathrooms, a kitchen and a PIANO! I got ready and we took a stroll to Central Park. He informed me that the restaurant was in Central Park. We walked down the stairs and stopped in front of the Bethesda Fountain, "looking" for the restaurant .. then he grabbed my hands and turned me towards him, professing his love for me and before I knew it, he was down on one knee! People started to clap, and then my friend Melanie who is an amazing photographer came out from the tunnel and informed me that Joey asked her to capture our special moment! He knew that I wanted my engagement in pictures so that I could always remember it. It was perfect and then ring - beyond my wildest dreams! We then had a little photo shoot before we took off for dinner. I still had no clue where we were eating. We had only called our mother's, he told me that dinner was going to be very private and we could make the rest of the phone calls there. Dinner ended up being at Carmine's - and our families were both there! It was absolutely perfect. We are both extremely close with our families, so having them there to share our special moment was amazing!! After dinner we said our goodbyes and Joey and I went to a rooftop bar at the Peninsula Hotel - the view was breathtaking. We stayed the evening at the hotel - and when we returned there were rose petals leading to the bedroom and shaped in a heart on the bed .. and a bottle of champagne and desserts to congratulate us!<br /><br />The location also could not have been more perfect. It was a beautiful, sunny day in April - 86 degrees and not a cloud in the sky. Flowers starting to bloom all around the park. It was gorgeous. He proposed in front of the fountain because of what the fountain stands for. It is a large angel sculpture looking down on the fountain with four little cherubs which represent health, purity, temperance and peace. He thought it was very appropriate considering all that I have been through in the last year! <br /><br />I will never forget this day for the rest of my life. Every single thing was perfect - Joey planned everything to a "T"! I am going to marry my best friend. I am living and breathing with amazing new lungs and life seriously could not be any sweeter!Katyhttp://www.blogger.com/profile/09575994566777502200noreply@blogger.com1tag:blogger.com,1999:blog-515730314827335191.post-17404966430109973292012-04-03T16:03:00.004-07:002012-04-03T16:13:21.732-07:00PFTs = 95% =) HOLLLA!I was actually stressing myself out over today's appointment. The past month I definitely haven't been AS great with my working out routine as I had been during previous visits so I was a little anxious that I would see a decline in my PFT's, X-RAY etc. As of April 1st I have gotten myself back on the exercising everyday band wagon. I have printed out inspirational pictures and hung them over my treadmill. <br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEilrkTaLDbtdqhj0kxkLp5jz0kG8sRR_wOYmchj1UWyGwOPM4PL6WKwR3cYGvYl_-q5Ub9rirzcnoPqVSwM8lhFLQWKF58k1WSdTKWnNRRYWEM5GjjtFfkRoF-9kXu21nCm5rhNGqjjckI/s1600/98445941824614972_kRRbFDrQ_f.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 286px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEilrkTaLDbtdqhj0kxkLp5jz0kG8sRR_wOYmchj1UWyGwOPM4PL6WKwR3cYGvYl_-q5Ub9rirzcnoPqVSwM8lhFLQWKF58k1WSdTKWnNRRYWEM5GjjtFfkRoF-9kXu21nCm5rhNGqjjckI/s320/98445941824614972_kRRbFDrQ_f.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5727314741545893986" /></a><br />If this little boy isn't the biggest motivator ever, I don't know what is. You really don't have any excuses after looking at him, running with a huge smile on his face! All the worrying however was for nothing. My PFT's have increased and are the highest that they have been post-transplant, and I honestly think EVER in my life ... my fev1 is 95%!!! That's with slacking on the treadmill. I keep thinking if I am consistent with working out .. I wonder what they could be at my next appointment next month!! I have also printed out a calendar and am filling in the miles that I run/walk daily - I think seeing how far I am going is a really good motivator as well! I don't want to see any blank days!! <br />I am so incredibly thankful to my donor. It is National Organ Donation Awareness month and I really want to help get the word out about how amazing organ donation can be .. I am volunteering at a table on friday to spread some awareness and hopefully recruit some new donors!! <br />I'm also back to work!! I am going through orientation right now .. but it feels amazing to actually have a job again and be part of the working class! I am just working on a per diem basis right now .. to slowly get back into the routine - but I think that I'll be ready to go back to full-time status again soon!! Either that - or continue per diem and go back to school to start my masters! Decisions, decisions!!Katyhttp://www.blogger.com/profile/09575994566777502200noreply@blogger.com2tag:blogger.com,1999:blog-515730314827335191.post-81563546672867420172011-12-27T10:02:00.001-08:002011-12-27T10:07:44.530-08:006 weeks post op appointment!!<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiekyFLIi_6FBT-aozPNnoGbCTvSyrm4Q4nj2F6iW2Yy3SMTB3prcwS5zytVzGh2N82UV3C9GiiEpoc-siN-oxzzlOVFuxaqzuCJhv0QCbsQcWfaxL28cTDE65lCg5X8Yh8NHpx7Lpk2eM/s1600/IMG_0731.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiekyFLIi_6FBT-aozPNnoGbCTvSyrm4Q4nj2F6iW2Yy3SMTB3prcwS5zytVzGh2N82UV3C9GiiEpoc-siN-oxzzlOVFuxaqzuCJhv0QCbsQcWfaxL28cTDE65lCg5X8Yh8NHpx7Lpk2eM/s320/IMG_0731.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5690870613962209154" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiGYcLlpq6kUGSPUoEm1Ivpv0V9N8fkE6SHPW2yfPSx3Ce73fBMTrbaLmLU6OiQeyfoHeGDY-YqKWgxA1PKGrUwIiA16KLR73Ud4-Y9xT-JKLRAPqEEKJREuAmUhr2UULSM0AZpjs2uSL4/s1600/IMG_0730.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiGYcLlpq6kUGSPUoEm1Ivpv0V9N8fkE6SHPW2yfPSx3Ce73fBMTrbaLmLU6OiQeyfoHeGDY-YqKWgxA1PKGrUwIiA16KLR73Ud4-Y9xT-JKLRAPqEEKJREuAmUhr2UULSM0AZpjs2uSL4/s320/IMG_0730.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5690870533367217554" /></a><br /><br />My staples are all officially out!! My PFT's are higher than I have seen them in YEARS and I haven't even really started working out yet. Now that my staples are out, I am allowed to return to Pulmonary Rehab. I am going to call later to set up my schedule. I honestly can't wait to start, and have a little routine to follow! I also bought myself a new treadmill so that when I do not have rehab and it's cold out, I can still work out! Nothing is going to stop me from maximizing the full potential of these amazing new lungs of mine! I'm also allowed to start driving again. I feel like my life is getting back to normal! It's SOOOO crazy. I feel amazing and I am more excited for the new year than ever before!! Bring on 2012!! I'm ready =)Katyhttp://www.blogger.com/profile/09575994566777502200noreply@blogger.com0tag:blogger.com,1999:blog-515730314827335191.post-13384865775908737312011-12-23T21:11:00.001-08:002011-12-23T21:35:17.433-08:00Forever Thankful ..I'm not the best with words but I feel like it's necessary to get down exactly how I am feeling this holiday season. Blessed and Lucky are two of the main words that come into my mind. I honestly cannot believe that I am sitting here, able to take a DEEP breath in and not end up in a coughing fit turning up my oxygen and wondering when it's going to end. That's all BEHIND me now, and it's completely surreal. <br /><br />I wish that I could meet my donor's family right now and let them know during this holiday season that they have given me the BEST gift in the entire world. I wish I could hug them and make their pain and sadness go away. I owe my life to my donor's family for making the decision to donate his/her lungs. <br /><br />Just two months ago, I had lost complete faith that I would still be alive right now. I had gotten so sick that I don't even think I realized how bad I was. I couldn't walk by myself, I couldn't bathe myself. I was completely dependent on my family to help me around, I couldn't breathe without oxygen, I was hooked up to the strongest IV cocktail almost 24 hours a day. I was in so much pain from my diseased, yucky, CF lungs. Now today, 6 weeks after my life saving transplant, I think about what it was like right before surgery, and it seems like a bad dream, but it was real. My donor's lungs are the ULTIMATE christmas gift. I will cherish them forever. <br /><br />In the new year I cannot wait to start giving back to the community. I want to help spread awareness about organ donation and how amazing and truly life changing it can be for people. I really hope that I can make a difference and make people realize that donating their organs is a beautiful thing. <br /><br />This is going to be the best Christmas I have ever had. All I need is to be with the people that I love. My family and friends have been amazing throughout my transplant journey. The love and support I have received is completely overwhelming. I want to thank my boyfriend, Joey for being my rock through everything. I want to thank my cysters who have been there for me, preparing me, answering my crazy questions and just knowing what I am feeling and thinking. <br /><br />I have never been so content and at peace with the world. I honestly feel like for once, everything is happening just like it should. I am very excited to start a brand new year, and put this new found "health" to good use!<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYBETuIcL53jb8-4V7DBqsSpQFC5JQsGZHcsIHCVKfstEeS1oyFa5JI5cgdv_9st0MdD9RNiebDsf5CMwA9YeL83kM3iKDvMAm7-wKS73Nf9xtjk0-XJI5f2-b0GavmoHO5RnmtMZD3-U/s1600/miracle.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 150px; height: 126px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYBETuIcL53jb8-4V7DBqsSpQFC5JQsGZHcsIHCVKfstEeS1oyFa5JI5cgdv_9st0MdD9RNiebDsf5CMwA9YeL83kM3iKDvMAm7-wKS73Nf9xtjk0-XJI5f2-b0GavmoHO5RnmtMZD3-U/s320/miracle.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5689562601256034610" /></a>Katyhttp://www.blogger.com/profile/09575994566777502200noreply@blogger.com0tag:blogger.com,1999:blog-515730314827335191.post-84010073033700306342011-12-14T15:54:00.000-08:002011-12-14T16:05:01.704-08:00A little pre-Christmas excitement!My two week post hospital check-up went PRETTY well. Turns out there was some fluid building up around my left lung, that went from a small amount to a more moderate amount. Being so new post-op, my fabulous doctor wanted to be aggressive and make sure everything was okay - so I was admitted yesterday. They placed a chest tube, took lots of blood and cultures and did a bronchoscopy this afternoon. Everything looks like it is resolving on its own and I should be able to go home in another day or two once they have definitite results from all of the tests they performed and are sure nothing else crazy is going on. Let's face it, sometimes I don't always follow the "norm", so being extra careful I guess is a GOOD thing!<br /><br />What's kind of cool is that my really amazing friend Kristy is here in the hospital as well, recovering from her double lung transplant which she received on December 9th! I took a stroll down the hall to see her a little while ago and she looks absolutely amazing!! Our mom's just went to grab a bite to eat outside of the hospital walls. They are really cute! Kristy and I also went to the same Pulmonary Rehab program pre-transplant, so we should be able to go back to the same program once we are both out of here and ready to start! Afterwards instead of going home exhausted, we might actually want to go out and do MORE fun activities!!<br /><br />That's it for now. I am BORED in here, so you might actually get another update before I leave. <br /><br />I am getting really excited for Christmas! I can't wait to see the kid's faces when they open all of their presents. I was able to get pretty much all of my shopping done online before I got re-admitted. All I have to do when I get home is wrap, which I actually love to do. I'll get all settled in my room, put some christmas music on, grab some hot chocolate and get to work!Katyhttp://www.blogger.com/profile/09575994566777502200noreply@blogger.com1tag:blogger.com,1999:blog-515730314827335191.post-60081412668386691162011-12-11T14:29:00.000-08:002011-12-11T14:42:25.753-08:00What a wonderful year!<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGLWuWm0Dxf2UFotD47pHskuKecvlP_4yUljqJyvcSEov6jpZVM3r7JVuJz5z6tgkeifS0rRJV-JBqKD9BJlhZUBXbRK0w6fpJ9iehUA1Xh3klT9ACutV7ua0XNN9rtzQ0xfU_fjNH1U8/s1600/205990_10150326619288755_540113754_9649178_7887653_n.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGLWuWm0Dxf2UFotD47pHskuKecvlP_4yUljqJyvcSEov6jpZVM3r7JVuJz5z6tgkeifS0rRJV-JBqKD9BJlhZUBXbRK0w6fpJ9iehUA1Xh3klT9ACutV7ua0XNN9rtzQ0xfU_fjNH1U8/s320/205990_10150326619288755_540113754_9649178_7887653_n.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5685003163830443554" /></a><br /><br />My transplant center has a sign up that says "Amazing Things are Happening Here", and I honestly am going to agree 110% with them! Since March they have been kicking ass at saving fellow CF patients lives! In March, my friend Charlie had a double lung transplant. Lyndsey followed in April! Most recently, my friend Allison who had a lung transplant back in 2004, needed a kidney transplant, and received one on 11/9/11 from an amazing friend of hers. Who knew I would be called two days later for my double lung transplant, followed almost one month later by another amazing friend of mine, Kristy! This is going to be one of the BEST holiday seasons ever!! I can't even imagine that we have all been blessed enough to have a second chance at life, free from the CF burdens (coughing, hours of therapy, hospital stays, nebulizers etc.). Not that we are in the clear and scott free because we had a transplant. There are tons of medications, and doctors appointments and tiny things that you need to pay close attention to, BUT doing all this and feeling GOOD is NO comparison to what it was like dealing with the old, sick, crappy CF lungs.<br /><br />The picture above was taken this summer. Lyndsey, Piper, Kelley and Alli all had their new lungs already. Alli was waiting for her kidney, and Kristy and I were waiting for lungs. All of our prayers have now been answered! The next time we get together, there will be NO oxygen cannulas, and rushing home because we ran out of oxygen! We'll be able to laugh without coughing, maybe even take a stroll on the beach once the weather gets warmer! There are so many exciting things that are now a possibility. I am so lucky to have this group of girls to go through this amazing journey.<br /><br />That's it for now. I promise I will try and update more often! Please pray for all of our donor families, as this first holiday season without their loved ones is probably going to be the hardest. Also, please, please, please, become an organ donor if you aren't already! It really does save lives - just look at the picture above! That's SIX people who would not still be here right now if it wasn't for organ donation.Katyhttp://www.blogger.com/profile/09575994566777502200noreply@blogger.com2tag:blogger.com,1999:blog-515730314827335191.post-32063652917835323392011-11-30T21:16:00.001-08:002011-11-30T21:20:33.410-08:00I got the call and it was a GO!This isn't a long message - I just wanted to let you all know that after 18 days in the hospital I am now home with my brand new lungs!! I am forever grateful to my donor and donor's family for giving me a second chance at life. I haven't felt this good in YEARS! 11/11/11 at 11:11pm I received a call from my transplant center telling me that they had a match for me. From then on, it's all kind of a big blur to me. I was in the hospital for 18 days, and I am finally home!! <br /><br />Please keep my amazing friend Kristy in your prayers, as she really needs a call to come as soon as possible!Katyhttp://www.blogger.com/profile/09575994566777502200noreply@blogger.com2tag:blogger.com,1999:blog-515730314827335191.post-30796426235454285572011-08-18T00:47:00.000-07:002011-08-18T00:59:34.441-07:003 months ...No ... I am not three months pregnant! Today marks the third month of being listed. I know that 3 months is typically early to receive a call, but of course deep down I was hoping I'd be on of the lucky ones! Unfortunately, it seems that there has been a lack of suitable donors. My friend had her appointment at the TRX center and they said they have been getting calls, just nothing worth while.
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<br />I feel like this waiting game has me on a roller coaster of emotions. One day I'm pretty optimistic and can't wait for the surgery and other days I guess I'm the exact opposite, wondering what will happen if the perfect pair of lungs doesn't come for me in time? I'm pretty sure these are all natural feelings, but nonetheless they are kind of stressful to deal with! I mean we are literally talking about life or death matters.
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<br />I just started a book tonight called "Joy for Beginners", it's a story about a woman who has a new lease on life after beating cancer. Her and her friends start coming up with ideas that have always frightened them and are going to try to succumb to those fears. I'm hoping it will be an uplifting book because I just finished "A Stolen Life" by Jaycee Dugard and that was pretty heavy, although equally amazing at the same time that she could share her ordeal with such truth and honesty.Katyhttp://www.blogger.com/profile/09575994566777502200noreply@blogger.com0tag:blogger.com,1999:blog-515730314827335191.post-11827383135860369412011-08-13T23:56:00.000-07:002011-08-13T23:59:17.279-07:00Twitter ...I am still not completely sure how I feel about the whole twitter thing, BUT since I have succumbed to facebook and now blogging, I feel it was the logical next step!
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<br />So please feel free to find me on Twitter, and follow me! I can't promise how often I'm going to use it or what I'm even going to post that isn't already on facebook or here, but WHO KNOWS!
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<br />My name on Twitter is: katyCFsurvivor
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<br />I'm also kind of obsessed with keeping up with celebrities, so while I am waiting on the transplant list - what's one more thing to add to my daily schedule!Katyhttp://www.blogger.com/profile/09575994566777502200noreply@blogger.com0tag:blogger.com,1999:blog-515730314827335191.post-11020008721144575762011-08-13T15:56:00.000-07:002012-01-08T23:07:15.806-08:00I don't mean to brag but ...<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOiUSkQpvQkm3k-1VuF-Tv65ddXM8S3JOcZl5P1eLxA-BdZLo4xpF-STGQVh6NVCPxnxmtr7t1PGztxuSpw4fDRpubOEXGPJiqbJJ660aJOtOSXCZfWWQn6UU5Iy_YaoywClYCL3PRC9I/s1600/joeynmerye.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 238px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOiUSkQpvQkm3k-1VuF-Tv65ddXM8S3JOcZl5P1eLxA-BdZLo4xpF-STGQVh6NVCPxnxmtr7t1PGztxuSpw4fDRpubOEXGPJiqbJJ660aJOtOSXCZfWWQn6UU5Iy_YaoywClYCL3PRC9I/s320/joeynmerye.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5640481887892462626" /></a><br /><br />My boyfriend is pretty much the best guy there is. I always knew that Joey was an amazing person inside and out. It wasn't until I started dating him and I got sicker and sicker and I realized that he didn't care. He loves me whether I can run along side him on the treadmill or if the only thing he can do to comfort me is come over and watch TV with me. <br /><br />I honestly feel like I hit the boyfriend jackpot. I would do anything for him and right now it's so hard because I would love to do little things here and there to show him that I love him as much as he loves me, but my health really limits me. He's studying to become a nurse, and he works almost every free minute at Erin's Isle (the restaurant that we both worked at and where we met about 10 years ago!). When I was studying for my nursing boards he would bring me random Starbucks coffee. I wish that I had energy and stamina where I could just do little things for him like that.<br /><br />We started dating in April of 2008 while I was still relatively healthy, except for the IV antibiotics 2-3 times a year. We went away to a wedding in Aruba in July of 2008 and ever since then my health has gotten progressively worse. We only had a good 3 months where I was feeling good to do fun things all the time. I jokingly told him that he's not going to know what to do with me post-transplant when I am feeling good and have energy again!<br /><br />This post is not directly to Joey or anyone in particular, but for those of you with CF who think that there are no good guys out there who will stick by you when things get tough, this is to prove that there are! When Joey and I started talking I wasn't exactly looking for anything. We had always been friends, and I always thought he was really cute and the nicest guy ever and that if he was just a LITTLE bit older he'd be my perfect match. Well a few years later, you realize a few years don't matter in the great scheme of things. <br /><br />I can honestly say that since I have gotten sicker, besides my family and friends support, Joey has been and continues to be my rock. I cannot wait for the day that I feel well enough to make him see that sticking by me, even when sometimes I sleep for days, will eventually be worth it!Katyhttp://www.blogger.com/profile/09575994566777502200noreply@blogger.com1tag:blogger.com,1999:blog-515730314827335191.post-8647758345157004112011-08-12T19:04:00.000-07:002011-08-13T15:30:37.213-07:00CF DR update<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIhe4fMTZB4uEhKAElRnHHMHbyri8tqQ8dCu_Ln0_1Cm_xoljYXcos1Jwfl9IHDYzw6mAk1JxWbIwGEriCC05cRK9oTl6pJhAASR_TJsqDugQrARFpfGU0Nqe3bP02qH2RRP23Fs1j550/s1600/whenlife.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 310px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIhe4fMTZB4uEhKAElRnHHMHbyri8tqQ8dCu_Ln0_1Cm_xoljYXcos1Jwfl9IHDYzw6mAk1JxWbIwGEriCC05cRK9oTl6pJhAASR_TJsqDugQrARFpfGU0Nqe3bP02qH2RRP23Fs1j550/s320/whenlife.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5640158265103792274" /></a>
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<br />So I had my usual every other week appointment with my CF doctor (now that I'm on IV's and the transplant list, they like to keep a really good tab on me!). Nothing really new except that I am finally going to be set up with an insulin pump, something that has been talked about for a few months now, until the whole getting on the transplant list took precedence. I'm still on 6L of oxygen, except this past week I feel like at certain times I need even MORE than that to feel comfortable, especially if I start coughing and can't catch my breath. I've been having really bad pain sporadically in my chest, I think it's more pleuritic, but nonetheless it HURTS and its kills when I have a coughing attack. I was prescribed Lidocaine patches, which so far are doing nothing! Percocet helps, but I think with the impending transplant they don't want my body to be used to a certain amount so that post-surgery I'll need even higher doses of pain meds. I didn't even do a PFT at the office. I have my transplant appointment next week where I need to do another PFT, EKG and 6 min walk test, so I think that's good enough. My entire body has been aching lately. I don't know why. It's my chest (obviously) and my lower back (I think that's from carrying the 6lb liquid oxygen backpack around whenever I am out). I've been having random feelings lately about what if I don't make it to transplant. I've mentioned it to my mom, but everyone tells me I'm crazy and that it's coming. However, it's a REAL possibility. There are so many people who die waiting on the list. I know that I need to be positive, but some days it's just REALLY hard.
<br />Katyhttp://www.blogger.com/profile/09575994566777502200noreply@blogger.com3tag:blogger.com,1999:blog-515730314827335191.post-63430072969201330382011-08-10T22:28:00.001-07:002011-08-10T22:39:26.292-07:00Post Transplant GoalsWhile I am waiting for the call to come I thought it would be fun to start thinking about some of the things that I would like to do when I am recovered and feeling great. I want to challenge myself and do things, whether they scare the living shit out of me or not. I truly want to live life to the fullest and experience as much as life as I can. My sister Christine said that if I decided to do such things as sky-diving, surfing etc. (which by the way are most likely going to be on the list), that she would like to do it too. I'm excited to experience things I have never experienced before, but more than that I can't wait to do the things that I used to enjoy and no longer can. I can't wait to be able to go skiing with my whole family. Now my niece and nephews are old enough to ski, so our family vacation will be so exciting. I can't wait to just work out and push the limits. One thing I have definitely regretted is not being more active with exercise. I would always get started and get in a routine, but as soon as I started feeling crappy, I let that be an excuse to stop, when in reality I should have just pushed harder. I guess that's one of the biggest life lessons I've learned. And for anyone with CF now, who's health and PFT's are still at a pretty good spot - PLEASE, take my advice and exercise your ass off. It can do wonders. Just check out amazing fellow CF'ers like Ronnie Sharpe and Jerry Cahill. A CF friend of mine from clinic has even run the NYC marathon a few times (and not with new lungs, with his original yucky CF lungs). I can't wait to take a deep breath and not have a huge coughing fit afterwards. I can't wait to travel around backpack free (my liquid oxygen backpack - my friends have ever so graciously named me Dora). I can't wait to wake up every morning and be able to stick to my plans because I KNOW I'll feel good. Today I was really looking forward to hanging out with one of my best friends Sara and our friend Aurora who we haven't really seen from HS, but I had a crappy night sleeping, my lungs felt super tight and I just could not get out of bed. I HATE that feeling. I also want to give back to the CF community in someway. Whether it's fundraisers, or volunteering for some of their functions, giving speeches. I just feel like If I get this second chance at life, I want to make the most of it and I want to be someone that people can look up to!Katyhttp://www.blogger.com/profile/09575994566777502200noreply@blogger.com0tag:blogger.com,1999:blog-515730314827335191.post-82790176254586424152011-08-08T21:56:00.000-07:002011-08-08T22:08:00.596-07:00insomnia strikes againBeing that for the last few weeks it seems like I can never sleep through the night, I don't know why I haven't been catching up more on my blogs. I guess that's also because I don't feel like much is going on in my life right now. I don't work. I wake up, I take my pills, do my morning therapy and IV medications, rest for a little, then some more meds in the afternoon, and then the same routine at bedtime with the therapy, IV meds and bed time pills. On monday, wednesday and fridays, when I feel well enough I go to Pulmonary Rehab for an hour and a half, in hopes of gaining some muscle to make my body as strong as it possibly can be for transplant. My good friend with CF Kristy is also in my Rehab class, and I have to seriously thank god that she is. We are the only young people in the program, everyone else pretty much is old and has lung problems due to smoking their entire lives, it's a blast let me tell you!
<br />Next week it will be three months that I have actually been on the list. I know that's not long in comparison to some people and I have no right to complain but for some reason I just thought that my new lungs would be here by now. I have to say my spirits are in a much better place. For a while I was kind of freaked out, not knowing if this was really the right step for me. Now, I am 100% sure that transplant is the thing I need next. I am constantly on 6L of oxygen now at all times, and if I am actually doing something strenuous could use more. I've been putting on some weight, but I am still fitting in my abercrombie kids size 12 shorts haha. My friends, both new and old have all been pretty amazing about keeping in touch with me and trying to get together, which has really helped! I feel like I sometimes have a busier schedule now than when I worked full time! I do have to take it easy at times though because after a day or two of fun, sometimes I need two or three days in bed to recover fully.
<br />I guess all in all, I've realized lately that life could have been easier, but I truly believe that it is the struggles that one person must overcome which makes them the person they are today.
<br />I'm just REALLY looking forward to the day where I can take a deep breath in, not feel pain and start a long, happy future with my amazing boyfriend and give back to my family who has turned their worlds upside down during this whole transplant process!Katyhttp://www.blogger.com/profile/09575994566777502200noreply@blogger.com0tag:blogger.com,1999:blog-515730314827335191.post-82442857022096073552011-07-30T14:51:00.001-07:002011-07-30T14:56:31.883-07:00Update ..I haven't blogged in quite a while. I don't know why I just can't seem to commit to keeping up with posts. I am not working at all anymore. Except for pulmonary rehab three times a week, I literally have NO schedule. I have been trying to keep as busy as possible though. My friend Lyndsey lent me a portable oxygen concentrator which has enabled me to stay out longer and even sleep out if I want to! Last week I went to Nancy's new house in long island and slept there instead of driving home late at night. Joey and I are even going on "vacation" to the city this week! We wanted to get away before transplant, but being that I am close to the top of the list and that even if we went to the Jersey Shore or the Hamptons, we could get stuck in hours of traffic if I happened to get the call for lungs while away. We actually have a gift certificate to a steakhouse and our friend Toni Ann bought us tickets to see Rock of Ages, so we are going to get a hotel room and have a NYC vacation! It will be nice to just get away for the night and spend some time with Joey! We don't get a lot of alone time and it SUCKS!Katyhttp://www.blogger.com/profile/09575994566777502200noreply@blogger.com0tag:blogger.com,1999:blog-515730314827335191.post-82091228897001814842011-05-24T22:46:00.000-07:002011-05-24T22:55:57.476-07:00CF Walk 2011 and Katy's KrusadersEvery year I usually write a letter to fundraise for the CF walk and send it out to my mom's address book and also post it online. This year I got it started really LATE because of everything that was going on with the transplant work-up and some other craziness in our family. Needless to say, I wasn't expecting this year to be one of our top fundraising years. Our team has grown from about 10-15 people the very first walk back in 1995 or 1996. This year I had a little over 70 walkers on my team. I had donations from people that I honestly have never met. I really think that CF is going down. I hope there is a cure for CF in my lifetime, but if not, I know there will eventually be. The determination and avid support of people dedicated to fight this disease is completely overwhelming. This year my team, Katy's Krusaders recruited a bunch of new walkers, whom really set the bar high with their own fundraising efforts. I want to thank everyone from the bottom of my heart. My team so far has over $17k and I am still getting e-mails saying that people are still donating! After transplant, I'd really like to give back to the CF Foundation and help them in anyway I can. Whether it's volunteering at walks, participating in meetings, anything. The never ending outpouring of support is what keeps me going everyday. It's amazing how some people have never even met me, yet they say that I have inspired them. Kind of crazy. But I'll take it, and I'll do everything in my power to keep raising money each and every year because we all know fundraising is what financially backs the research on the drugs that could in the future potentially wipe out this horrific genetic disease and stop taking innocent lives of loved ones all around the world.Katyhttp://www.blogger.com/profile/09575994566777502200noreply@blogger.com1tag:blogger.com,1999:blog-515730314827335191.post-775548399808400672011-05-13T19:09:00.000-07:002011-05-13T19:24:16.450-07:00ACTIVELY listedI apologize for not keeping up with my blog. I started the 30 Days of Blogging in hopes to really keep up to date with my posts - but life got kind of crazy for a little while. Since my last post a LOT has happened. I went through the evaluation process for a double lung transplant and found out today, that I am now ACTIVELY listed. The evaluation itself wasn't too bad, just time consuming! I was in the ICU again for a few days in March. They ended up taking out my port because I ran 105 fever. The blood cultures came back negative but because I have had two ports that were infected before they didn't want to take a chance. I went about two weeks on oral antibiotics and two inhaled antibiotics before I was back in the hospital with high fevers. Now they knew that the port wasn't the source of the fevers, so I got ANOTHER port. My lungs don't respond as well as they used to to oral antibiotics. My doctors think it's probably because they have formed a film and that now only IV antibiotics are strong enough to penetrate through. I am still on oxygen 24/7. I haven't been able to return to work which really stinks. Some people who are listed for transplant are well enough to be able to work while they are waiting for new organs, but because of my dependence on oxygen it unfortunately isn't an option for me. My doctor thinks that she is going to keep me on IV antibiotics until I get the call for lungs, because I seem to run a high fever the second I come off of IV's. I'm still kind of in shock that I am listed. The whole process happened so fast it's kind of amazing. I don't think it is really going to hit me until I am literally in the hospital being prepped for surgery. It kind of feels surreal for now. I am extremely grateful that I am going to get the opportunity to have a second chance at life. I'm deeply saddened however that someone has to pass away for that to happen. I will be forever indebted to my donor's family. Words can't even express the emotions that I'm already feeling thinking about the actual transplant and all that goes on with it.Katyhttp://www.blogger.com/profile/09575994566777502200noreply@blogger.com3tag:blogger.com,1999:blog-515730314827335191.post-60941412232084388152011-03-08T20:22:00.001-08:002011-03-08T20:43:30.658-08:00Day 6Day 6 - A picture of a person you'd love to trade places with for a day<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgP-ASwJqY9mEsy3VjLYJKFaS41pyi8QFO8YrTsuaNE3E7okeQXcLm6pm8twHFsE4nj5nkcisFIUz5QairuvAe17U-eUj0c2AydH8Pj6Ixof2qP5LErtWCZFVbLvDiRHlIPBnBJJTKi4Qc/s1600/171487_1828863318326_1142632238_2355357_3650616_o.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 213px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgP-ASwJqY9mEsy3VjLYJKFaS41pyi8QFO8YrTsuaNE3E7okeQXcLm6pm8twHFsE4nj5nkcisFIUz5QairuvAe17U-eUj0c2AydH8Pj6Ixof2qP5LErtWCZFVbLvDiRHlIPBnBJJTKi4Qc/s320/171487_1828863318326_1142632238_2355357_3650616_o.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5581933568529138978" /></a><br /><br /> As much as it sucks living with a chronic disease, I am very comfortable in this role. There aren't too many people that I would actually trade places with, if it were possible. However, one person I definitely would like to trade with is my older sister Christine. Not only has Christine been my role model since I was a little girl, she is an amazing sister and one of my bestest friends. My sister Christine is amazing. She deals with such a full plate, and still always has a smile on her face and she always seems to put everyone else's needs before her own. She has been like the energizer bunny ever since I can remember. Even now, as a wife and mother of two little boys, she holds down not only one full-time job, but she teaches lectures to PA students and she is taking classes online to further her degree. <br /> Her drive and commitment have always inspired me. I'd like to see what it was actually like to juggle everything she has going on. I also would like to see what it was like to be a PA (Physician Assistant). I am in the medical field, so seeing a different side of the medical model would definitely be interesting. <br /> I would also LOVE to be around my nephews for more than just a few hours. I am not sure that I will ever have children, so being in her shoes for a little while would be amazing. My niece and nephews mean the world to me.Katyhttp://www.blogger.com/profile/09575994566777502200noreply@blogger.com2tag:blogger.com,1999:blog-515730314827335191.post-26839607611715299582011-02-20T12:14:00.000-08:002011-02-20T12:32:14.461-08:00Day 5<span style="font-weight:bold;">Day 5 - A Picture of your Favorite Memory</span><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNYdEeCVt67YXUz1VMAjP2ktYuLpSfK2xhQ0rlW5Lx-VibGPiPJ0L1GF81q6SzJpdHRG4ebY_ajHJQIK35T9A6j6XwS6oaMDHBfiSMpZovASgnLzltaoOJJB38tL7E8iDumxJEaSd-gX4/s1600/Scan+103550004.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 214px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNYdEeCVt67YXUz1VMAjP2ktYuLpSfK2xhQ0rlW5Lx-VibGPiPJ0L1GF81q6SzJpdHRG4ebY_ajHJQIK35T9A6j6XwS6oaMDHBfiSMpZovASgnLzltaoOJJB38tL7E8iDumxJEaSd-gX4/s320/Scan+103550004.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5575868309232725106" /></a><br /><br /> I have always loved holidays. Mainly, because it gets everyone together, I also happen to enjoy the yummy food that usually accompanies the festivities! Christmas was always my favorite. My older sisters, Terrianne and Jeanine were out of the house by the time I was born, so it was just me, Tricia and Christine on Christmas Eve. My mother always dressed us in matching pajamas and we all slept cuddled in one bed. We tried to stay up as late as we possibly could so that we might hear Santa's sleigh or something else miraculous. We sometimes siked ourselves out and really believed that we heard rustling on our rooftop (mind you, we have NO chimney! so I don't know how Santa would get down!). <br /> The next morning we couldn't get our parents up fast enough. Then the dreaded wait at the top of the stairs, waiting for my parents to get the video camera set up JUST RIGHT. Every year, the same thing and every year it felt like a MILLION hours passed by before they finally said "Okay girls, time to come down".<br /> After the rush and craziness of opening all of our presents, we went down the block. My Aunt, Uncle and cousin live two houses away from us. Every year we would make Christmas breakfast and eat as a large, extended family. Around 2-3 in the afternoon my older sisters came over, and it was like Christmas all over again. <br /> Growing up now, seeing that Christmas is not the awe inspiring holiday it used to be is kind of depressing. I still love Christmas but it's just not the same. I can't wait to have my own kids one day, because I think then it will start to be exciting again. I love watching my niece and nephews open gifts and talk about Santa Claus. Holidays were so amazing and magical when you were little and just believed!Katyhttp://www.blogger.com/profile/09575994566777502200noreply@blogger.com0