Thursday, March 13, 2014

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.

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