The "Cysters" hit again

Not 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?

life is short .. do what you can .. when you can

Went 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.

Can'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.

Here 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.