tag:blogger.com,1999:blog-53266365689816525462024-03-13T01:57:35.826-04:00Living and Loving LifeJen Girlhttp://www.blogger.com/profile/09422438977113019712noreply@blogger.comBlogger92125tag:blogger.com,1999:blog-5326636568981652546.post-88299732352292270502013-07-13T05:37:00.001-04:002013-07-13T05:37:30.053-04:00We said Yes and then we were tested. A lot has been happening since my last post.<br />
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Cameron and I are finally married! All of the hard work paid off, and everything was beautiful. <br />
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We left a couple days after for our honeymoon. 2 night in New York City and 3 nights in Washington DC. We went to a ton of museums and let out our geeky-ness. It was nice to spend time with my best friend and just acknowledge the fact that we've pledged our lives to each other. Plus, having 2 weeks off work wasn't a bad thing either!<br />
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When we got back, I had a slew of doctor's appointments. The first one was with Dr. T. Honestly, it didn't go as I wanted it to. My FEV1 is down 12% since December. Dr. thinks it's asthma related, so he started me on Advair. Here's hoping that is really what it is... but I'm starting that think that it isn't.<br />
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We did a repeat PFT a couple weeks after I started the Advair. There wasn't any change. <br />
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So, following Dr. T's instructions, I have made an appointment with Cleveland. I go next week, and most likely, I'll be having a biopsy done. So, basically, I've been an emotional mess for the last couple weeks. <br />
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On top of all of that, I've had some women issues. It's required me to have an endometrial biopsy, which has come back "normal", except that the stage in my cycle isn't where it is supposed to be. They're thinking that I may not ovulate. With that, and with the results of my last ultrasound that my Dr said my lining looked like that of a women who's gone through menopause. <br />
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Cameron and I were starting to investigate the possibility of us conceiving our own child. But with the recent health news, I don't think that it's going to happen. <br />
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So honestly, I've been grieving. Grieving over the lost dream of having a child of my own. Over never being able to carry a child. To feel their movements inside, to hear their heartbeat for the first time, to be able to have that bond with my child. <br />
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So now it's back to adoption or surrogacy. Either way, it's an expensive process that I just don't find fair. Why should I have to pay a ridiculous amount of money, when my insurance would have covered me fully if I were pregnant on my own? There are thousands of children that need homes. Why should I already be that much more in debt? There are thousands of parents who don't want their child, who aren't qualified to be a parent, and a million other things... but they have them. Why not me?! <br />
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I've been scared too. Mostly, what if I'm going through rejection? I know I've had it in the past, we've treated it, it got better and we moved on. But... what if. What if this isn't your normal "acute rejection". What if I've somehow developed "chronic rejection"? Only 50% of double lung recipients make it to the 5 year mark with their original set. Many have to get re-transplanted or die. I don't want to be in that statistic. I want to be part of the 10+ years statistic. <br />
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So right now, I think Cameron and I have "assumed crash positions" and we're just waiting to see what next week holds. Maybe, we'll get there and things will be fine. We can start back with planning for a family. Maybe it'll happen, maybe it won't. At the very least, we can start looking at other options for a family and continue on planning for our future together. Jen Girlhttp://www.blogger.com/profile/09422438977113019712noreply@blogger.com1tag:blogger.com,1999:blog-5326636568981652546.post-54569302186053861162013-01-19T09:12:00.000-05:002013-04-13T07:56:41.091-04:00Uh... so it's been a while... There has been so much going on lately! I just realized that the last time I posted anything was back in June. woah.<br />
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Let's see...<br />
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I finished my last quarter of college and GRADUATED!! I officially have my bachelor's of science :). I can't believe that I made it through all of that! And... I have a full time job :D<br />
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I'm working at the children's hospital in town, during 3rd shift. Not my shift preference of choice, but it's where the job openings were, so I'll take it. I love the hospital (it's where I was a patient so often before transplant), I love the people, my boss is awesome, and the job is exactly what I feel like I was meant to do. I know from personal experience how important some of these lab values are, and I know what it's like to be a patient and have to be stuck multiple times (it sucks) so I feel like I'm extra careful, but always willing to get it a shot in running the samples. I have a couple co-workers that would rather cancel things instead of giving it a shot.<br />
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No one at work (other than some of my classmates who also go hired with me) know anything about my health situation. I want to keep it that way. My doctor actually told me to keep it that way as long as I can. Just to avoid possible problems.<br />
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Nothing new on the health front. I need to have sinus surgery again, but that is to be expected every few years. Those dang polyps. And I actually have a week break in the middle of February that we're trying to get the surgery done in, but not sure it that'll actually happen or not. The scheduler was a little difficult. We'll see!<br />
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Wedding plans are coming along nicely. I'm getting ready to send Save the Dates out, and the next step is finding a song for my dad and I to dance to, along with readings for the ceremony (along with the music for that as well... ugh). But for being about 4.5 months out, I feel like I'm right on target.<br />
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Hope all is going well with you and yours! Jen Girlhttp://www.blogger.com/profile/09422438977113019712noreply@blogger.com0tag:blogger.com,1999:blog-5326636568981652546.post-68884830641776126252012-06-11T22:23:00.001-04:002012-06-11T22:23:23.784-04:00PFT results and Transplant FriendsSo, another quarter of school has ended. Usually at this time, I'd be posting about my grades and what I'm doing next quarter and some of my upcoming wedding plans... I just can't seem to make myself do that this time. <br />
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I've been on Facebook and catching up on my blog list. As much as I needed to the support of the CF community while I was waiting for my transplant, making all of these friends has been hard as hell on me emotionally now. <br />
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I've felt myself slowly pulling out of the community, strictly for the fact that I just can't handle sitting around and watching my friends be so sick. I have friends on both sides of transplant now. I fear for the ones who have not had their transplant. That things may get too bad for them, that they may not get the same chance that I've had. I always thought that it was hard to be the one waiting for transplant... that's a walk in the park when compared to watching someone you care for go through the waiting. Gives me a whole new respect for the parents of CF children, being on this side now... <br />
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Even others that I know mostly online... watching them through the computer screen is just as hard as sitting by their bedside and holding their hand. It's just... it's been a hard week for me, and if there's anyone that still reads this blog... I ask that you keep my friends in your prayers. <br />
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So that all being said, I did manage to have some great news today! I did a full PFT this morning and my FEV1 was at 76%, the highest I can ever remember it being! It was a wonderful moment for me, especially since I've been waiting for 3 years to have such good numbers. I was beginning to believe that it just wasn't meant for me... but now, I have motivation again to try and push even harder. Exercise a little bit more... Eat a little bit healthier... and maybe, just maybe, I can reach where my other transplant friends have their PFTs sitting :)Jen Girlhttp://www.blogger.com/profile/09422438977113019712noreply@blogger.com0tag:blogger.com,1999:blog-5326636568981652546.post-82720846039593219512012-05-03T23:51:00.000-04:002012-05-03T23:54:23.587-04:00Sad, Late Night RantSo I sat down tonight with Cameron and tried to watch 65_RedRoses. Yeah... that didn't happen. I got all of 5 minutes into the film and couldn't stop sobbing. Cameron wasn't far behind me.<br />
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Yes, watching the film was hard. Actually, Cameron was the first one to say "well, that doesn't bring back all sorts of horrible memories" when Eva was coughing so hard that she couldn't breathe in the opening segment. But it wasn't that part that made me cry so hard. It's the plain fact that I miss her. I miss all of my CF friends who are no longer with me.<br />
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This is the reason I stayed away from support groups for so many years. I know the truth behind this disease. I know that the odds are not in our favor, that most of us will die way before our time. Even the transplant doesn't "cure" us. I learned that I had lost an online friend today. She had her transplant already, but was experiencing chronic rejection. It's the most horrible word I think they can tell us post transplant.<br />
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rejection<br />
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A few weeks ago, I have having some major shortness of breath when I did things. It scared the shit out of me. There were moments that I just couldn't think right, and when I told my professors that I may have to go up to Cleveland to get checked out, they were fine... but I wasn't OK with that. I haven't missed a full school day yet. I don't plan on missing one. That's why I got this transplant - to finish school without missing a ton and to get a job and LIVE MY LIFE. But by getting short of breath while I was outside doing yard work, I had a moment of panic. That it was all going to go away. That I was rejecting...
Turned out, I was freaking out over nothing. Looks like I've developed mild asthma, which I can deal with. But the panicking over the "unknown", boy, that just isn't for me anymore!<br />
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So... back to the support groups and Eva.
I only talked to Eva a couple times. I can't technically say that we were friends. She probably didn't even know that I truly existed. But to me, someone who was getting ready to have a double lung transplant, seeing her and reading about her was my lifeline. I clung to the fact that she made it to the other side. About a year after my transplant, while she was waiting for her second transplant, she passed away. Her death hit me as hard as Danny's death did. They were a couple of the people that I used to force myself to go through a surgery that I wasn't sure I wanted until about a month before I had it. They reminded me that I could be "ME" again, not just a bunch of tubes and a girl that was so dependent on everyone else. That I could actually LIVE. I could go anywhere and do almost anything I wanted to do. I could go back to school... Get married... Get a job... Have a family... All things that I'm accomplishing today.<br />
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Not married yet, but will be soon. Don't have a family in the traditional sense, but have 2 wonderful dog babies and plan to start the adoption process as soon as possible.<br />
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It's just... somedays it's hard to keep putting one foot in front of the other, when you feel like you are surrounded by Death. That they are taking all of your friends away. And the scariest thought of all... that you may be next.<br />
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But most days, I wake up just fine. I am excited (to a certain extent) to be going to class, or spending time with the ones I love. I look forward to August when I'll officially have my bachelor's degree. I try to remind myself that today, I am healthy. And then I try not to think too far in the future or too hard about everything else.
I am blessed for today. I am one lucky girl who got a second birthday to finish all of the things I didn't think would happen when I was waiting for my transplant. And, I'd like to think that maybe... just maybe... I am the one that someone waiting for their transplant has held on to, to keep them going, keep them dreaming of what life will be like when you don't have to fight for air.<br />
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I will say one final thing: When you don't have to fight for every breath, that first year post transplant is magical. It may be hard as hell, but it's something that I'd go through all over again if I had to.Jen Girlhttp://www.blogger.com/profile/09422438977113019712noreply@blogger.com2tag:blogger.com,1999:blog-5326636568981652546.post-74142534172169558392012-02-02T09:15:00.002-05:002012-02-03T21:50:43.189-05:00Highly EmotionalI have been extremely emotional lately. I'm usually pretty high strung around this time of year though, being that I'm so close to my transplantiversary. Every year I start to go through my blog entries before, during, and after transplant and am absolutely amazed at how far I've come! <br /><br />Just 3 years ago around this time, I was beginning to wonder if I was going to survive to transplant. I recall saying a prayer every night before I went to bed for God to just let me wake up in the morning. Just let me survive one more night. I knew my time was winding down and there was nothing left for me to do about it. I was depressed and scared and frankly, just down right pissed off that I had to go through the torture that is waiting for a double lung transplant. <br /><br />4 years ago, I was just getting use to the idea that I was going to need this surgery. I wish I could go back in time to let myself know that things turned out ok, that the surgery wasnt as bad as I thought it was going to be and that I survived. That was the biggest thing that held back my going forward with the transplant process. <br /><br />It's funny though if you think about it. In order to say that you want to live, you have to be willing to undergo a surgery that could very well cause you to die. You have to be on death's door. You have to be able to accept all of that and then move on slowly hoping that someone along the way had signed their donor card and told their family their wishes to be a donor AND they have to be a good match. If all of those little pieces fall into place then you get the greatest gift of all. You get to live. <br /><br />Even better, you get to live with health. Something as a CF patient, was a little hard to comprehend. <br /><br />Don't gets wrong, as a child, I didn't realize that I was "sick". It wasn't until forth grade that I knew that my lungs were much different than anyone elses when I got sick and had to do inhaled antibiotics for weeks. That's when things began to click. Even though I knew I had cystic fibrosis, I don't think I really understood what it really meant for my future. <br /><br />Having everything happen to me the way it has, however, has been a blessing to me. It's allowed me to meet some great people online that I am so proud to say I'm part of that community. It was allowed me to look at life with a sense that I'm not taking a second for granted. I'm living life with every breath, every beautiful, deep, perfect, healthy, donor lung breath :)<br /><br />With all of that being said....<br /><br />Earlier this week an amazing advancement in the CF world happened. The FDA approved a drug that corrects the underlying cause of the disease. It will only work for one mutation though, even though there are thousands of combinations of the CF mutations. This drug will only work for G551D. Not the mutation I have. In fact, not the mutation that the majority of the CF world has. But it's a start. It brings hope to thousands that the cure for all of us will be found during our lifetime. And even better, that all of the children being born now have a chance to live completely normal lives! <br /><br />I don't know where all of tears have come from this past week, but I do know that I am thankful to be alive because someone said yes. I am thankful for the brilliant people who are so close to riding this disease. I am thankful for all of the donations that my friends and family have given the CFF, because without them all of the funding needed to make this leap wouldn't have happened. <br /><br />I am thankful at this time of year and I am blessedJen Girlhttp://www.blogger.com/profile/09422438977113019712noreply@blogger.com1tag:blogger.com,1999:blog-5326636568981652546.post-12429024763576034552012-01-16T20:51:00.004-05:002012-01-16T21:07:22.445-05:00Oh wow, this is hard work!So instead of studying, I've decided to update my blog a little. I know... it's been forever since I've done this. I've been a little busy :)<br /><br />Cameron and I have been slowly making plans for our wedding. The date that we want is June 7, 2013, and we are looking at venues now to find one that fits us, our budget and our date. That's been a bit of a challenge for the budget part. There's just so many details that I didn't realize that I'd be having to deal with. Every spare chance I have, I'm looking at things online. Right now I'm on a flower and invitation kick. Found a few flowers I like, but hoping that they won't cost me a fortune to get them. <br /><br />I think I'm going to go simple for my bridesmaids bouquets. They'll be wearing purple dresses and I think I either want tiger lilies or tulips in orange for them to carry. With it being a June wedding, both should be in season, so not too bad for price and being able to find them. I want my bouquet to have orange and purple in it. It'd also be nice to have a good amount of green in it too to fill it out a little. But I dunno. I feel a little silly spending the amount that I'm going to be spending on flowers which will just die.... oh well. It's all about the pictures, right? haha<br /><br />I do have my dress and my shoes though, so the important part of the wedding is taken care of :). <br /><br /><br /><br />I've been working my way through the last year of school. It has not been easy at all. Last quarter I took Intro to CLS (an introductory course to the program which explains how the lab is set up, accreditation and lab techniques), Hematology I and II, and Clinical Chemistry. It was the hardest quarter of school I've ever had to go through! But, I did manage to make the Dean's List!! I have never been so proud of myself :) <br /><br />This quarter is looking to be just as hard, if not harder. I'm in Clinical Immunology II, Clinical Practicum I, and Clinical Parasitology right now. In a couple of weeks, we'll take a couple weeks off Practicum and do Hemostasis and Urinalysis. Also, at some point, we're going to cover our Senior Seminar class. Not really sure how that is going to go, but I figure it shouldn't be too bad. My practicum site is awesome! I'm in the hematology department right now and have been running the machines and really getting good hands-on experience. I now know that this is what I want to do, and that makes me feel a little better about my choice of degrees. It would be rather frustrating if I were to go through this year and then find out when I got in the field that I hated it. <br /><br />That's the basics of what's been going on with me... not much to talk about, but my days are pleasantly filled. I have my dogs, my fiance, and my health. Couldn't ask for much more right now :)Jen Girlhttp://www.blogger.com/profile/09422438977113019712noreply@blogger.com0tag:blogger.com,1999:blog-5326636568981652546.post-25645589244672266532011-10-17T21:01:00.003-04:002011-10-17T21:05:31.567-04:00Engaged!So I don't have a lot of time to go into the details of how it happened, but Cameron and I are engaged! He proposed the day after his birthday at his mom and his birthday party (they share the same birthday). All of our family and a few friends were there. It was simple and it was beautiful. <br /><br />Here's a picture of the ring!<br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghiQff_WESy3xrfJJkdGh5DstY7dtXlfmwHUX3_2tscV0P2b4BsX8hBcXH8GybEh194vXn3fKXrxJD04p_lNRcIbXEXWrtU_Xuj4BzN2h8XEY4WJ9u5sG5hGlDJ3Ev5pGDZIM8U9I54zvz/s1600/308416_976973275972_41103652_42740841_1850019835_n.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/AVvXsEghiQff_WESy3xrfJJkdGh5DstY7dtXlfmwHUX3_2tscV0P2b4BsX8hBcXH8GybEh194vXn3fKXrxJD04p_lNRcIbXEXWrtU_Xuj4BzN2h8XEY4WJ9u5sG5hGlDJ3Ev5pGDZIM8U9I54zvz/s320/308416_976973275972_41103652_42740841_1850019835_n.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5664631859042308722" /></a><br /><br />Now back to studying for school. I'm in clinicals now and don't have much time to spare. :)Jen Girlhttp://www.blogger.com/profile/09422438977113019712noreply@blogger.com1tag:blogger.com,1999:blog-5326636568981652546.post-50673760945536732002011-07-28T15:07:00.004-04:002011-07-28T16:01:22.346-04:00Blogger ChallengeThere are a few blogs that I follow on a regular basis. Especially being post-tx, I have less time to focus on them as I have had in the past, but since I've taken this summer off from school, I've had plenty of extra time to catch up on my online community that helped me get through so much in the past few years. One of them is Piper and she is now post-tx herself and is very active in the CF community. Her blog <a href="http://amatteroflifeandbreath.blogspot.com/2011/07/blogger-challenge-personal-disease.html"></a> gave a challenge to her readers, which I found interesting... <br /><br /><br />1. Write a blog explaining your personal thoughts and experiences in dealing with CF control and progression. This could include your views on whether CF is in fact a "controllable" disease, your personal definition of compliance, your thoughts on whether (or how) someone with CF should be judged in terms of "good enough" self-care (what makes you feel judged? do you think those fears are justified? is judgment ever useful in this context?), your own struggles with control vs. unpredictability, and how you keep motivated in the face of so many questions. Or, you know, whatever you want to write about really. It's your blog.<br /><br />2. Comment below with a link to your blog so that all of us can read your response. YOU DO NOT NEED TO LINK TO MY BLOG IN YOUR ANSWER. If you'd like to do so, please feel free, but this is about starting a discussion, not publicity.<br /><br />3. Encourage your own readers to get in on the conversation by posting the same instructions on your blog. Remember, the more responses, the better the conversation. Let's see if we can get this one going as much as with past challenges.<br /><br />4. If you don't have a personal blog (or just don't feel like going through steps 1-3), feel free to still make yourself heard by simply leaving a comment with your thoughts below.<br /><br />5. Non-CFers are 100% welcome to participate, either by pulling from their own experiences or simply by offering their perspective as people, friends, and loved ones.<br /><br />So here it goes... <br /><br /><br /><br /><br /><br /><br />I've mentioned in other posts that compliance is something that I feel is held over the heads of those of us with chronic diseases. Especially before transplant, I felt that it was a threat from people who held the power over us for recommendations for transplant. If we don't do our treatments as told, if we don't take our pills exactly, if we don't exercise like we should... basically, if we're human for a day and forget something we run the risk of not getting recommending for transplant, should the need arise. It's a lot of pressure to place on a person their entire life! <br /><br />At the same time, compliance is not the only piece to the health care puzzle. I had one doctor who would constantly remind me that I needed to exercise more to maintain my lung function. That it would help me build muscle which would help me maintain my weight. Weight and lung function go hand in hand, so it would seem like if I could keep my weight, I would keep my lung function. (What a mouthful of twisted thinking...) All of that being said, any time I had a decrease in lung function, especially after a few weeks of IVs, the doctor would simply shrug her shoulders and tell me it was just the nature of the disease to gradually decline over the years. So in a way, she was playing both sides of the issue... You need to work harder, but if you fail, it's not your fault. It was very confusing to me. I was constantly told that it was my fault for failing lung function while in the same breath being told that it wasn't my fault, it's the disease's fault. Confused yet, because I am! That's what I feel this poor young lady is being told (from Piper's blog)<br /><br />Here's what I came up with to help my own sanity:<br /><br /><br />CF is a crazy bitch. <br /><br /><br />I believe what my doctor was trying to tell me was that with regular exercise, treatments, medication, etc. we can control how quickly we decline. In some cases, people have been able to reverse the downward trend, but that isn't the case for everyone. To help not get so discouraged many fall back on the mantra "It's the nature of the disease - it's progressive and not my fault." While I feel that this is OK to get you through the rough patches, I don't feel that it is what patients should hold on to. I personally feel like this is accepting your decline and in my case, my fight declined. <br /><br />Waiting for transplant, I continued to deteriorate on a regular basis. It was what was expected of me and at times, I almost felt it was encouraged to get me a higher LAS score. Get me closer to transplant. While I wanted to live to make it to transplant, I had a hard time finding the fight to continue pushing myself to try and get "better". It was a weird backwards world for me, not fighting and not feeling like I had control over myself, where we almost celebrated the decline. What was even more strange to me was that when I woke up after my surgery, it was like a switch had been flipped and I expected everything to be going up instead of down. I was willing to work again and push myself to get "better". Basically, the point I'm trying to find here is that I think our attitude to which trend we should be following (for me) is in the hands of our doctors. If they expect us to get better, we expect it to. If we fail in any way, many of us take it far too personal. Lately though, I have found that going home and looking at where I started and see where I am today (regardless of the results of the last test) I am still better off... I have still gained ground. It makes me feel a little bit better about how things are going. <br /><br />Maybe, for those starting the transplant process, or those who are in the middle of it, need to realize that even though you are declining you have to keep fighting. That's what proves to the transplant center that you deserve a transplant. As long as you are trying, you are winning. I know... corny... but that's what they look for. And for all those CFers wondering if they are going to be a candidate for transplant, most centers that that you are a CFer into consideration. You can take millions of pills a day. That's a key to surviving post-transplant. You know that exercise is a key to life. That will only help speed up your recovery. <br /><br />So after feeling like I've just rambled on and on... I hope that someone got something out of this. Best wishes to all of my Fibros and Cysters and I hope that everyone keeps fighting, regardless of what your current status you are at. <3Jen Girlhttp://www.blogger.com/profile/09422438977113019712noreply@blogger.com0tag:blogger.com,1999:blog-5326636568981652546.post-79598130589529949482011-07-23T21:59:00.003-04:002011-07-23T22:31:14.320-04:00Not a whole lot to report on. Life has been rather boring actually, but I'm not complaining! <br /><br />I did have another ER trip a few weeks after Easter for chest pain. After some tests, the ER doc at the West Chester Medical Center decided that the most likely cause for the pain was pleurisy. That's inflammation of the lining surrounding the lungs. I had it often before transplant, but it was also linked to an infection. I still don't know what my pleurisy was from this last time. Dr. Trapnell is stumped by it too. And to make things more frustrating, I still have the pain from time to time with no connecting factor to help decide what the cause is. <br /><br />The bad thing about me having the pleurisy episode was that they gave me pain killers which made it hard to finish my lab report which was due the next day. I did manage to get an extension, I only had to provide documentation for everything, which is definitely something I can come up with :) I did manage to have a horrible GI reaction to the pain meds though. I think what happened was that instead of taking 2 percocet like I've done in the past, I think I grabbed the dilaudid instead which is much stronger. I ended up being sick the entire next day, but managed to get through my classes anyway. <br /><br />I am now done with classes for the summer though. I managed to get an A in statistics, a B+ in Anatomy and a B in Ecology. Not what I was wanting to get, and I'll admit, I did sulk for a few days after getting my final grades. A few days after that though, I found a new love :) Her name is Eva and my mom found her at the groomers when she dropped her dogs off. An older lady owned her before and decided that she wasn't able to care for her so wanted to find her a new home. Below is a picture of my little girl :)<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgY8nzoAr6x6v2Ph_4hGlpFxhv1j8_rrETIluXrsEHu5bGER8cJ1sKunESKqTyUVnyFYUQsD7C6g8tkuQaed0DaqKoFi9TRSQHu9b5hbWI7U1OzmuGyW_9PkmJnBEsuncE8npKqWQmDX7a_/s1600/IMG00108.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/AVvXsEgY8nzoAr6x6v2Ph_4hGlpFxhv1j8_rrETIluXrsEHu5bGER8cJ1sKunESKqTyUVnyFYUQsD7C6g8tkuQaed0DaqKoFi9TRSQHu9b5hbWI7U1OzmuGyW_9PkmJnBEsuncE8npKqWQmDX7a_/s320/IMG00108.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5632738057802111426" /></a><br /><br />Finally, Cameron and I celebrated our 10 year anniversary and took a trip out to New Mexico to celebrate. It was my first time on a plane since transplant and it was wonderful to not have issues during the flight like I have had before. It was a great trip. We took a couple days and traveled up to Albuquerque and Sante Fe, which was beautiful. We also did a day trip to the Gila Cliff Dwellings. I still can't decide if I had altitude sickness, car sickness, or both during that trip. Cameron's dad drove up to the dwellings and I think he climbed too quickly and the roads were very curvy. That didn't help matters... so I was sick when we got there. Then we climbed the trail to the cliff dwellings, which I'm glad I did because it was gorgeous, but I had my heart pounding in my ears and felt nausious the whole time... plus, I was short of breath. Not something that I like to be now that I'm post-tx. It just hits too close to home in reminding me how things were before transplant. As soon as we came down in altitude though, I felt much better. I also had taken an anti-nausea pill so that helped a lot too. <br /><br />So basically, since we got back in the beginning of July, I've been doing a whole lot of sitting on the couch and training the new puppy. Jack's getting along with her, but he likes it better when she's not here. I have been officially accepted into my clinicals though, so they start on September 21st. I probably won't be writing a whole lot when those start :) Wish me luck!!Jen Girlhttp://www.blogger.com/profile/09422438977113019712noreply@blogger.com0tag:blogger.com,1999:blog-5326636568981652546.post-20475090641355056162011-05-06T15:32:00.002-04:002011-05-06T16:14:12.855-04:00EasterSo it's been a while since I've had a real health post. I guess all good streaks come to an end eventually... <br /><br />I went to my family's Easter party on Saturday. That went fine and I was happy to see everyone. I had been a little tired that whole week, but all of my being tired I usually contribute to school stress. Anyway, I went to bed a little early since I planned on getting up extra early for church. <br /><br />About 2am I woke up and was freezing. I got up to take my temperature (I was surrounded by dogs, there was no way that I was just normally cold) and ended up getting sick twice. I took my temperature and was at 99.5 degrees, which is a fever for me. I normally run around 97. So I took a couple tylenol to head things off and went back to bed. I didn't sleep well since I was still feeling so cold. <br /><br />Around 5am I woke back up and was still shivering so I took my temperature again. At this point, my fever had risen to 102, so I knew it was time to give Cleveland a call and check in. After a brief chat with the pulmonary fellow on-call, we decided it would be best for me to head to the ER to get checked out, just to make sure there wasn't something else going on that couldn't be diagnosed over the phone. <br /><br />After waking Cameron up, we headed to UC's emergency room. In hind sight, I should have never gone there, I should have tried to go to Children's... But anyway... Things ran smoothly for the first hour I was there, then they had a shift change and I got a horrible resident who insisted that I be admitted. She kept telling me that I had a pneumonia, but I don't think that's the case. I have some scaring on my left lung and the doctors not familiar with my case see it as pneumonia. I had a ton of things due in classes the following week and flat out told the resident that I hated the hospital and refused to be admitted there. I told her to set up a transfer to either Children's or to Cleveland. Children's doctor on the floor wasn't comfortable with me coming there so I thought I was heading to Cleveland. <br /><br />At that point, Cameron called Dr. Trapnell and they came up with a plan for me to do IV antibiotics at home instead of being admitted. He figured that I probably had a GI thing going on, not pulmonary involvement. The UC ER doc didn't like that plan and made me sign out AMA (against medical advice). Since I had to sign the AMA, no home healthcare company would take my case to do the home IVs. Making a 12 hour story a little shorter, the next day Dr. Trapnell and I made the decision not to do IVs since we were mostly sure that I only had a stomach bug. Looking back on my weekend, I probably brought this on myself. <br /><br />Earlier that weekend I had dinner at a friend's house. They weren't completely aware of my dietary restrictions since transplant and well... I didn't have the heart to tell them that I couldn't eat the food (It had feta cheese) but figured I could chance it and it would probably be ok. I'm guessing that's where the vomiting and fever came from. Regardless, it still falls under the GI bug category, so I just left the details out from Dr. Trapnell because I felt bad for being a "bad transplant patient"<br /><br />Now, 2 weeks later, the only thing that I have are a few giant bruises from the IVs and a small lecture from Dr. Trapnell that I should have called him sooner than I did. You could tell by what he said that he honestly cares about me. <br /><br />I only have a few more weeks left of school and then I'm done for the summer. Still waiting to hear if I got my clinicals. Figured I'd give them until the end of the week (which I have now) and then go to the office next week and talk to them face to face and see what the hold up is (which I will do on monday). <br /><br />Hope everyone's having a wonderful spring!Jen Girlhttp://www.blogger.com/profile/09422438977113019712noreply@blogger.com1tag:blogger.com,1999:blog-5326636568981652546.post-19962238200836310402011-04-21T15:09:00.002-04:002011-04-21T15:31:42.206-04:00ProjectsSo I've decided I'm going to be more active. I mean that in multiple ways. <br /><br />1) I am going to start taking care of my diabetes. Honestly, I am not the best when it comes to checking sugars or taking my insulin. I go in phases where for about a month, I'll be really good about things. Then I miss a day, and that day turns into 2, which turns into a week, which turns into a month. Then I realize that I haven't been taking care of myself, and start the pattern over again. Well I've had it with myself. I'm going to start being responsible. I am going to watch my diet and avoid excessive sugar (like having 4 sodas in one day) hopefully that won't have an impact on my weight. <br /><br />2) I'm going to start running. I got it in my head that I want to run the Flying Pigs Marathon. Right now, I'm just going to train for next year (2012) and I'm aiming to run the half-marathon. If I get really good at running and really enjoy it, I may do the full... but I wouldn't get your hopes up on that one. I'm a little nervous about doing this though. Mostly because I don't have great joints from all the years of dance and I am also worried that such an increase in my cardio will cause me to loose weight. I have been trying to do my research about diets to have while running and ways to not injure myself. We'll see if I can manage that much. <br /><br />I have a theory with the running though. I have been hovering around 70% with my FEV1 post transplant. I have been disappointed by that, since most people I know that are post have a lung function in the 100s. I am hoping that by running and breathing deeper that I can get my lung function to increase in volume. <br /><br />I'm really hoping that now that I have these things down in writing that I'll keep myself accountable. We'll see!!Jen Girlhttp://www.blogger.com/profile/09422438977113019712noreply@blogger.com1tag:blogger.com,1999:blog-5326636568981652546.post-61874835702883231832011-03-28T17:03:00.002-04:002011-03-28T17:10:38.557-04:00And the Craziness Continues!The Winter quarter was rough!! I had Literature (the topic was travel writing during the Romantic period) which I got an A- in, Cell Biology (the HARDEST class I've ever taken!) which I got a B- in, and the 2nd quarter of Anatomy and Physiology which I got an A. Overall, I was happy with how my grades turned out. That was pretty much all I've done in the last few months. <br /><br />I did go to a couple of Kelly's dance competitions. Sad to think that these are her last ones since she graduates. I'm sure I'll see her dance in college though. She's already planning on joining the dance team at the school she decides on. She hasn't picked a school yet, but I'm sure that decision will come soon :) <br /><br />Had another appointment in Cleveland last week. Everything went well and I don't have to go back for another 6 months. Finally, I have been pushed to every 6 months!! I have been waiting for that for a while since it means that I'm far enough out and that I'm stable. It makes me happy :)<br /><br />I started the new quarter today. I'm taking Ecology, which is going to be rough since I am not interested in this subject at all, the last quarter of Anatomy and Statistics. My Stats class is Tuesdays from 6-8:50. That's going to be the eternal class :( Wish me Luck!!!Jen Girlhttp://www.blogger.com/profile/09422438977113019712noreply@blogger.com0tag:blogger.com,1999:blog-5326636568981652546.post-66729045276101899272011-01-03T16:17:00.002-05:002011-01-03T16:47:55.617-05:00One quarter ends.... another begins!Since my last post, I've had sinus surgery (verdict is still out on whether or not it was successful), written a research paper on the gene that codes for alpha-1 antitrypsin, taken 2 final exams, and started my new quarter at UC. <br /><br />The sinus surgery went well. The recovery was quick, which was all I was really hoping for. I'm still super congested and having headaches. The doc put me on a steroid rinse, so that hopefully will help with everything. Also on the health front, I went back to Cleveland for a checkup. All is well again. PFTs were actually a little bit higher, so the goal is to keep moving and maybe they'll go up some more! My white blood count was a little low when I was up there, so they had me re-check it a few weeks later, and it was back in normal range. <br /><br />School went well. I was proud of how I did with my first quarter back. I got an A in anatomy, and a B in genetics. The B in genetics was the hardest B I've ever earned! But I think a lot of it had to do with the paper I wrote on alpha-1 antitrypsin. It was the hardest paper I've ever written due to the fact that I couldn't find information that was on my level of knowledge. Everything I found was written for people doing research on the gene. Definitely not meant for an undergrad genetics student! Somehow I made it work though and got a 100% - yay! <br /><br />Had a good break and a wonderful holiday season. Spent a lot of time with family and a good amount of time catching up on sleep and relaxing with my poodle. During that time, a friend of the family, Tina, received her double lung transplant and is doing wonderful! She got out of the hospital in 10 days and is now back at home. AMAZING! I'm so proud of her and reading her story on her caringbridge site just brings back all of the emotions I had when I went through my transplant. <br /><br />I started the winter quarter today, which so far is looking promising. I'm taking Topics in Literature (writings about travel in the romantic period - yawn), Cell Structure and Function (could be promising, but mostly boring so far) and Anatomy II (Getting more in depth on other systems we didn't cover last quarter) so I'm crossing my fingers and hoping for straight As. We'll see. <br /><br />Hope everyone had a wonderful holiday season and best of luck to everyone in 2011!!Jen Girlhttp://www.blogger.com/profile/09422438977113019712noreply@blogger.com0tag:blogger.com,1999:blog-5326636568981652546.post-28477324401316718182010-10-27T19:31:00.002-04:002010-10-27T19:44:54.507-04:00Oh My...So I just realized that it's been a LONG time since I've had a post. Most of that is due to the fact that I moved out of my parents' house. <br /><br />Cameron and I bought a house in Westwood! :) It's already been a month since I've moved in and it has already been a lot of work. We haven't had to deal with yard work or any major repairs yet. Just little things, but it's still been a lot! The worst has been working on the kitchen sink, which despite our best efforts, is still leaking. I think it may be time to call in a plumber... or maybe a Daddy :) <br /><br />The other thing that has been going on is I started school again! Yay! I'm only taking 2 classes, but it's 8 credit hours, which is a good amount considering it's been 3 years since I've been in school. Genetics and Anatomy I. Anatomy isn't too bad since I took it in high school, so a lot of it is review for me. Genetics on the other hand... wow, way more difficult than I was expecting! So far I'm doing OK in my classes. As and Bs, which I can't really ask for more since I'm re-learning how to learn. <br /><br />On the health side, I've been having recurring sinus infections, so it's back for some sinus surgery for me! November 17th... and I'm going to have my dog vaccinated around then so he'll be at my parents' house for a week during that time. Figured it'd be best to have him out of the house while I'm recovering so I don't have to care for him while I'm trying to heal. It shouldn't be more than a day or two until I'm mobile, but it just times out well. <br /><br />Hopefully I'll write more again when the quarter ends. Just don't have a ton of time right now!Jen Girlhttp://www.blogger.com/profile/09422438977113019712noreply@blogger.com1tag:blogger.com,1999:blog-5326636568981652546.post-5243709073577022922010-07-25T23:05:00.002-04:002010-07-25T23:21:59.512-04:00Spoons - RevisitedI was talking to Cameron the other day about my blog and have come to realize that my favorite blog entry, the one I always get the most comments about, the one that was the most personal to me was the one where I referenced the spoon theory. I wrote it about a month before my lung transplant and I was re-reading it tonight. Wow, what a difference a new set of lungs makes! <br /><br />I said that on average, I had 10 spoons a day. Now, I have an easy 20 on a bad day. A BAD day... I don't think I could even comprehend that when I wrote the original! A bad day for me is when I am not getting sleep because the meds have kept me awake, the meds have upset my stomach, exhausted because my EBV titers are high from the donor lungs, but all in all, I still can breathe, I can run up the stairs if I wanted to, and the amount of care that I need is next to none. The most help that I need to take care of myself now is the occasional preparring of meals or running upstairs for me to fetch something. And that really, is because I'm too lazy to do it myself, not because I can't do it. <br /><br />It's an amazing feeling to take a look back and see how far I've come. I've come so far that I'm getting ready to move out on my own... something that I wasn't sure if it was possible pre-tx. I'm making plans to travel down to Knoxville to visit my college roommate, Stefanie. Plans that are WEEKS in the future, not DAYS. I was always so scarred to make plans before. I never knew how I would be feeling, if I'd be on IVs again, plus... having to lug all of that equipment around. Seesh! Even when I went to Cameron's family reunion, I only had a duffle back and another small extra bag for toiletries - leave it to being a girl to add bags to my packing :)<br /><br />Anyway, for those who would like to know... a typical day for me:<br /><br />I wake up at 8am and take my morning pills. Sometimes I fall back asleep, but most days I'm up for the day. I sit around, sometimes do some house work (or, atleast I did until my dad lost his job and took those over to keep himself busy).<br /><br />Come lunch time, either Dad or I make lunch for the both of us. Right now we've been trying to sit outside with the dogs and eat it if it's not too hot. <br /><br />Then I run my erronds or do some more sitting around or sometimes, exercise... depending on how the weather is. <br /><br />Then comes dinner and hanging out with the family and Cameron. 8pm I take my evening pills. Then I hang out with everyone until it's time to go to bed. <br /><br />Once a month I do an inhaled antibiotic in the afternoon, but that's the only extra medical thing I do. <br /><br />That's it... that's my post-transplant living. You have to admmit, compared to all that I had to go through on a daily basis before, it's pretty sweet living :)Jen Girlhttp://www.blogger.com/profile/09422438977113019712noreply@blogger.com0tag:blogger.com,1999:blog-5326636568981652546.post-37994145234577767792010-06-12T08:59:00.002-04:002010-07-20T17:53:17.824-04:00A whole lot of NormalSo my life has been busy and boring, all at the same time! <br /><br />Not a lot going on since my last post. Just the basics, a few doctors appointments, hanging out with friends, having a good time, and then there's the trying to find a home for Cameron and I, as well as starting to freak out a little about school. <br /><br />Cameron and I had found a house, and we both were head of heels in love with it. Then the mold inspection came back... oh boy... so now we're heart-broken and shopping again for houses. Unfortunately, all of the buffered time we had before I started school again is gone, so we're under a deadline to find a house now. The last thing in the world that I want to be doing is moving while trying to get use to going to school again. ick. <br /><br />And while I'm talking about school, I am about as nervous as one can be about going back. I've been out of school for about, oh... 3 years now. And it's not like I was out of school and working during that time, well.. I was working, but in a completely different sense of the word. My job was taking care of myself and that was almost too much of a job for me to do by myself. Thank God for great families :) But anyway, I can already feel the anxiety building with school approaching. I have 2 months left before I start still... and my personality is to take the next 2 months and fret over it until the week before, and then I go into full panic mode. After I get through my first day, I know I'll be fine... but it's just getting through that first day. blah. <br /><br />But that's all that's been going on. As soon as I have anything else going on, I'll be sure to post it, but until then.... <3Jen Girlhttp://www.blogger.com/profile/09422438977113019712noreply@blogger.com0tag:blogger.com,1999:blog-5326636568981652546.post-75508812805440873352010-06-01T13:06:00.000-04:002010-06-01T13:20:15.059-04:00Just a normal updateI really am going to try and post more often. It helps keep me a little more sane :). <br />So since my last update post, I've been busy! Mid-April Cam and I went to Indianapolis for the midwest CF consortium for social workers and nutritionalist. I was part of the panel discussion and got to meet some really cool CFers. We were all post transplant and I am finding, the further out I get from transplant, that I am starting to crave talking to others who are in the transplant know. I also got to meet Tiffany Christenson who wrote the book "sick girl speaks!" Which is fabulous! The book is neither about CF nor transplant, but references them both throughout. <br /><br />I also met Sam, a fellow Cincinnatian, and her parents. All were so nice, and I felt honored to be on the panel with each of them.<br /><br />Next was the CF walk. My team wasn't as successful as years past, but I walked most of it this year, and that's what really mattered to me!! It was a beautiful day and Sam got to cut the ribbon. I was so excited for her. Her dad took a picture of the two of us, and I'm axiously waiting for them to put it on facebook :)<br /><br />Finally, Cameron and I are house shopping, so I've been a little busy! It's a fine balance betweeen what we can afford and what we're willing to put into a house. A lot of the houses we've looked at have been "handyman specials" which is kind of frightening :). <br /><br />Oh! And I saw Dr. Trapnell last week and my lung function is at 70% - the highest it's been post-transplant! I figure if I really start trying to work out, I can get it higher. Maybe this is the motivation I've needed all along, especially since dance is coming to an end this weekend. Come see me in the recital if you can! :).Jen Girlhttp://www.blogger.com/profile/09422438977113019712noreply@blogger.com0tag:blogger.com,1999:blog-5326636568981652546.post-90472396646875394622010-05-26T07:51:00.002-04:002010-05-26T08:25:27.199-04:00Growing UpOver the last year I've run into people that I haven't seen in months/years. It's almost always the same conversation. <br /><br />"Wow, a double lung transplant?! I'm so glad you got that, you were so sick as a kid!"<br /><br />Maybe it was just me, but I never felt sick as a kid. I played just as hard as the boys I grew up around (there just weren't many girls on my street) and I can remember occasionally having to stop and cough. That's it, just a cough here and there. In fact, now that I have my transplant, I constantly am comparing my life to when I was about 12. Health-wise that is. I hope I've at least matured a little since then ;) but to call myself sick while I was in grade school, still to this day, doesn't make sense to me. <br /><br />For a CFer, I was healthy as a kid. I didn't know many other CFers growing up. The only other kid I knew was Danny, and that was strictly because our parents worked together. I knew he was typically sicker than I was, but I just figured that was because he had a more severe case or that he just didn't take care of himself like my parents had made me. But still, I never FELT sick. Mentally, emotionally, physically, I felt like a normal child. I KNEW I was different, only because how many 7 year olds have you seen grab a handful of pills and swallow them in one swallow? How many 10 year olds have you met that were voluntarily beaten by their parents each morning, sometimes twice a day (haha, CPTs, not thrown around)? Of course I complained about these things because I recognized them as "not normal" but never once did I ever sit down and think "it must be because I'm sick". I was raised to think "I do this to NOT get sick" and I think that made all the difference.<br /><br />I know this now, but I think it made me push harder to do the physical things I loved to do, like dance. I seriously danced until I was about 16 years old, then I decided to get a job and there just wasn't enough time in the day to do dance, work, and keep up with school. It's one of my regrets. I can't help but think that if I continued to dance, if I kept exercising seriously, if I didn't hang around all of my friends who smoked (most of which have quit now and I'm glad I have them all in my life, regardless of their choices) that I could have postponed the transplant process. Maybe I could have gotten out of school during the 4 years, instead of taking so much time off because I just couldn't physically get to class. But these are all "what-if's" and don't matter. <br /><br />Starting during the second half of my high school years, I began to get sick. I held on as tight as I could to a normal life... which is so common in the CF community, I'm now finding. We cling to normalcy, we crave it. We want it so bad and there isn't anything anyone can say to change our minds. It makes us fighters, warriors in life. Many of us experience things that most people will never come across. We're stubborn, but some of the most loyal and caring people you'll ever meet. Talk to a CF child and most of the time, you'll feel like you're talking to an adult. We grow up quick and we learn the medical field just as fast. Making decisions about feeding tubes, insulin, IV antibiotics/ports/PICC lines, GI surgeries, lung transplants, bronchoscopies, sinus surgeries, and whatever other problems arise all become second nature. Here's the problem, here's a couple of solutions, which one are you going to pick? Doubt constantly nags the back of your mind that you're making the right decision and that there won't be any further complications from the choice you made. <br /><br />As a child, those were my parents problems. They tried to let me be a kid for as long as I could. As I grew older, the decisions fell more on me. I grew up quick, but never as quick as when they first brought the idea of transplantation to the table. I went into denial, through all the stages of grief during the waiting process, but am so happy I made the choice that I did. I'm alive today because of that choice and because my donor's family said "yes." I am almost certain I wouldn't be alive today if we both hadn't done what we did.Jen Girlhttp://www.blogger.com/profile/09422438977113019712noreply@blogger.com3tag:blogger.com,1999:blog-5326636568981652546.post-78093047288222633862010-04-14T13:11:00.002-04:002010-04-14T13:34:50.758-04:00Wow, I need to post more!SO I guess the old adage holds... no news is good news! <br /><br />I went back up to Cleveland on March 15 and 16 to be rechecked for the acute rejection they found in February. Cameron and I went and made a little vacation out of it :) We went to the Science Center which was geared toward little kids, but we loved it all the same. Then we went to the Rock and Roll Hall of Fame. I'd been meaning to go there since I first went up to Cleveland almost 2 years ago, but I've been and it was awesome! That Friday I got the call from Cleveland saying that the rejection had cleared... so.... I'm done with biopsies!!! Well, unless something goes wrong, and I've decided that it's not, so I'm done :p<br /><br />Kelly's had 2 dance competitions and done wonderfully at them. Cameron and I have done some running around, getting dinners with friends and such. We're really trying to find a place to live now since June is coming closer by the minute! <br /><br />On April 2, I had my g-tube site stitched up and my port removed, so now I'm as normal as I'm going to get :) I got back to Dr. J next monday to have things looked at, but in my opinion, it looks great! <br /><br />Oh, and on a little side note, I'm officially registered for classes at University of Cincinnati! My class for the summer starts in July and it's a literature class... we'll see... I have to take it to complete my gen.ed. requirements. Wish me Luck!!Jen Girlhttp://www.blogger.com/profile/09422438977113019712noreply@blogger.com0tag:blogger.com,1999:blog-5326636568981652546.post-12282999769330212042010-03-12T13:59:00.002-05:002010-03-12T14:31:29.750-05:00A Case of the BlahsI just haven't felt right the last couple days. Been extra sleepy and had a total lack of motivation to actually do the things I need to get done. I should exercise everyday (shouldn't we all), I should be eating healthier (again... all of us), and I should just forse my little butt into bed and take a nap. Of course, none of this has happened and I just keep feeling like I'm loosing my CF role models. <br /><br />In Decemeber, a shining beakon in the CF community passed away. Her name was Melissa and I talked to her often online. She was part of the CF.com family and also made an appearance on CF2Chat.com every now and then. I knew in November that she was making her final plans and it crushed me. Her positive spirit is one of many that gave me the courage to take the risk on transplant and to push forward. I didn't find out about her death until a week after it had happened. <br /><br />Now another girl, Eva, is waiting for another set of lungs. She had her transplant almsot 3 years ago and has gone into chronic rejection. If you're active in the CF web community, you know who she is and her story. About a month ago they gave her just a few more days to live. <em><em><strong>DAYS</strong></em></em> but she's stilling holding on as of now. Very weak, but alive. <br /><br />Melissa's death hit me because I considered her a friend, Eva's on the other hand, I've never spoken with her. I've read her blog and I feel like I have gotten to know her. But her being this sick really stricks a cord with me. Post-transplant living is great, I wouldn't trade it for anything... but it scares the shit out of me. There's Danny, and now Eva, and there's another girl I've been talking to who is also in chronic rejection and waiting on the list at Cleveland for her 2nd transplant. <br /><br />So with all of that being said, I'm just kind of in a funk of a mood. I think tonight will be a good night to cook a good dinner for Cameron and I and then sit on the couch watching a movie. Just the two of us. Maybe I'll actually get to sleep in tomorrow.Jen Girlhttp://www.blogger.com/profile/09422438977113019712noreply@blogger.com0tag:blogger.com,1999:blog-5326636568981652546.post-3713783705216069622010-03-02T09:42:00.002-05:002010-03-02T10:12:38.075-05:00Time FliesWhere did February go?! I've been meaning to sit down and put an update on here for the last 2 weeks and things have just been a little crazy in our house. <br /><br />Kelly turned 17, which is a little scary. On her actual birthday she was on her way to school and got in a car accident. What a great gift, huh! Everyone was fine, but the cars were a little banged up. We've been dealing with the aftermath of the other driver since though. Neither Kelly or the other kid were given a ticket so the plan was to have the insurance companies pay for their own cars. The other driver didn't have collision coverage so they threatened to sue... people are just so friendly anymore :) But I think that's all resolved now, or at least, I hope it is. <br /><br />February 9 I went back up to Cleveland for my 1 year appointment!! I spent a lot of that week just reflecting on everything I've been through this last year. There are times when it feels like my transplant was forever ago, and then in the same moment, it feels like it still hasn't happened. Like the 2 years leading up to transplant were all just a bad dream and I woke up, got out of bed, and felt fine. I also got a letter from Lifebanc, the group that handles the correspondence between donors and recipients, and they said they were unable to deliver my letter to my donor family because they were unable to locate them. That kind of deflated me for a few days... I wanted to get a letter back so badly!! I want to know who my donor was and to be able to thank the family properly. I know if it's meant to be it'll happen, but it doesn't make it suck any less.<br /><br />That Friday, Cleveland called with my biopsy results telling me that I was, once again, in slight rejection. I wasn't so upset about the fact that I was in rejection (they just up my prednisone and see me back in about a month), I was upset that I had to go back for another biopsy. My last biopsy was suppose to be at the 1 year mark unless something went wrong. So March 15 and 16 (yes, it's a 2 day trip this time... don't even get my family started on that...) I go back up, see the doctors and have, what I'm hoping really is this time, my last biopsy. <br /><br />February 13th marked 1 year for me and I couldn't stop smiling the whole day. To me, making it to 1 year is a HUGE step! So, in true family tradition, we had a 1st Birthday Party for dear Andrew :) So many people came... friends, family, anyone who was in town and we ate and drank and had the best time. Cameron took some pictures but I haven't had a chance to look at them yet. If I find a good one, I'll try and post it on here. I'm still working on getting all of the thank-you notes written for the beautiful gifts people brought... which was not the purpose of the party, but I loved each gift all the same.<br /><br />Around that time, I also quit my job at Wendy's. I think I've outgrown it at this point. It was great in high school, but I'm ready to get through school and have a real job. Preferably something that isn't so physical would be nice too. After years of dance and all of the surgeries, my body hurts!! <br /><br />Finally, last week my dad was trying to get Sam (our older dog who has cataracts real bad) back into the house. After he picked the dog up and started walking back, he slipped on some snow/ice in our backyard and fell. I'm guessing his foot got caught on a tree root, but the result was that he broke his right leg down near the ankle. So for the last week and a half I've been driving my dad to work and just trying to help him get around the house. He's on crutches and has an air cast, so he can't put any weight on the right leg... poor Daddy :( He goes back to the ortho the same day that I go back to Cleveland... Don't know how we're going to make that work, but somehow it will just have to happen. <br /><br />So that's all that's been going on in around here. Nothing too exciting :) I'm going to try and get out here more often but I don't know how my schedule's going to be in the next few months. Cameron and I are still planning on moving in June and I plan on starting classes at UC then as well. Wish me luck!!Jen Girlhttp://www.blogger.com/profile/09422438977113019712noreply@blogger.com1tag:blogger.com,1999:blog-5326636568981652546.post-80568708085576582252010-01-27T11:53:00.002-05:002010-01-27T12:00:26.754-05:00Button's Gone!So I went to see Dr. Trapnell last Thursday and things are looking good :) My weight is up to 109lbs and my PFT is holding at 65%! yay! So that meant that I could get my g-tube out. I don't think I've ever been so happy in my life! On Monday that's where Dad and I went... to see Dr. J to get my button removed. Now I have a hole in my stomach where it was, but that'll heal over some time. Hopefully by tomorrow I can stop putting the gauze over it to prevent stuff from leaking out. Just think, this summer I could wear a bikini if I want to now... well, ok, maybe not a bikini. I have a few too many scars to make that look pretty :) But maybe I will just on principle now! <br /><br />On other, rather depressing news, I wasn't accepted back to St. Elizabeth's program. I didn't really get a clear answer as to why, but there ya have it. I have applied to the University of Cincinnati and hopefully they'll take me. We'll see.Jen Girlhttp://www.blogger.com/profile/09422438977113019712noreply@blogger.com1tag:blogger.com,1999:blog-5326636568981652546.post-32742480153086417402010-01-03T00:34:00.002-05:002010-01-25T00:31:38.945-05:002009So I thought I'd follow the trend and sumerize 2009 as I saw it. <br /><br />January didn't hold anything new for me. More IV's, another trip to Cleveland, and growing anticipation for my new lungs to arrive. I remember lots of nights crying myself to sleep because I had to hook myself up to so many machines just to sustain life. All I wanted in life was my second chance.<br /><br />February came and I had my first shot at my rebirth on the 9th. It wasn't meant to be that night but it sure scared the hell out of everyone involved. Little did we know that the following week would be that life changing event. February 13th at 8pm I went in for surgery and on the 15th I took my first breath on my own with Andrew. It wasn't the amazing movie moment where I gasped in air and everything was better, but it was amazing and I have a picture of me at that moment -- Best. picture. ever.<br /><br />March I was still having clotting issues which would haunt me for the next couple months. But the best part of that month was the fact that I got to go back home to Cincinnati. I made it to Kelly's dance competitions for the first time in years, cheered her on, and overall just enjoyed life! I also found out that Jessica had passed, which is something that still makes my heart hurt when I think about it.<br /><br />April I had to go back to Cleveland to be admitted... again... for a yeast infection they found in the liquid they drained from my left lung. Wasn't a bad trip, just long... but switched my antifungal medication around and back home we go :) I was also having a hard time tolerating some of my meds (mostly the CellCept) which were making me so sick! But again, more adjusting to meds and sent on my way. <br /><br />May marked 3 months post-transplant. We had the CF walk where I was honored by cutting the ribbon to start the walk. I still have the ribbon sitting in my room... now to figure out what to do with it :) I also learned that the fluid around my left lung was back and now required surgery to remove. That was scheduled for June 8th so I could see my sister's dance recital. <br /><br />June was a hard month. I went back up to Cleveland for my surgery, which was suppose to be laporscopically done, but nope. They had to hope my side up since the liquid had solidified so much. I woke up in more pain than I had when I woke up from tranplant. Of course, the drugs were different, but still... OWW!! I spent all of June battling pain from that procedure. I did make it home though in time for my "Yay Lungs!" party. It was so great to be able to celebrate with everyone... even though I don't remember much since I had so many pain killers in my system. <br /><br />July wasn't much better. I was still on pain meds, which caused serious constipation, which landed me back in the hospital. Fortunately I was able to be in Cincinnati for that stay. Once I had a good poop though, the pain started to go away. Go figure ;) When I was released from the hospital, Cameron and I went to see Momma Mia, which is fantastic! <br /><br />August was great! I went to a Red's game with Cameron and our friend Jesse. Walked all the way up to the top seats and didn't even get winded! It was wonderful :) I then made my way up to Columbus to visit my friend Michelle. It was great to go up there without having all of my medical supplies. I then got to go out to dinner with all of my guy friends from WKU for my 25th birthday. On my actual birthday I was sick. I think it was food poisoning from the restaurant we went to, but no one else get sick, so who knows. I then found out that Danny had passed, and that just about broke my heart. <br /><br />September I started dance classes again. It had been so long since I'd been able to complete a dance class, it felt amazing to do so! I just kept living life to it's fullest :)<br /><br />October was yet another bump. I went for my appointment at Cleveland to check to make sure the rejection had cleared, and when they did the biopsy, they caused my right lung to collapse. So most of October I spent trying to get that pain under control. Wasn't as bad as the decortication surgery though. I even went back to work at the end of the month. Wendy's :D<br /><br />November was boring. I don't mean that as a bad thing, I was very happy with boring. I got up, went to work, came home, went to dance, slept and ate. I got to go out the day after thanksgiving for some quality Black Friday shopping. It was great to do it without an O2 tank!! <br /><br />December was full of Christmas Cheer :) All I can say is that I'm happy to have the holidays without having IVs, without having to worry about being sick, just quality time with family and friends. <br /><br />That's 2009 in a nutshell... I can only hope that 2010 is even better!!Jen Girlhttp://www.blogger.com/profile/09422438977113019712noreply@blogger.com1tag:blogger.com,1999:blog-5326636568981652546.post-48648418154122831572009-11-30T14:55:00.003-05:002009-12-04T09:59:45.654-05:00Andrew's first ThanksgivingI know I've gotten really bad about updating my blog. What can I say, it's hard to do when you're busy :) and I like it that way :) but this is my late Thanksgiving entry.<br /><br />I had today off work and didn't have any appointments, so I spent most of the morning catching up on my fellow CF blogs and forums. So much has happened with them, including a lot of CF deaths. It just hits on a deep level that is hard to describe. There's been a few CFers that have received their lung transplants, which always makes me smile. Then there's one cystic who's blog I've been following, she's #1 on her list right now. Maybe she'll get lungs by Christmas! Reading everyone's transplant journeys makes me remember my whole experience and I can't help but smile. While it was one of the hardest things I've ever done, the rewards I've received after have been wonderful! <br /><br />It all reminds me of all that I have to be thankful for this year. I'm alive... above and beyond anything else, I AM ALIVE! Truth be told, I wasn't sure I was going to be here this year for Thanksgiving. So I leave this entry with just a simple thanks... Thank you to all of the organ donors (especially mine :) ), to all of the members of CF.com which have given me such support, and most of all, my family. Without them I wouldn't have had the strength to get through this last year.Jen Girlhttp://www.blogger.com/profile/09422438977113019712noreply@blogger.com2tag:blogger.com,1999:blog-5326636568981652546.post-45823932719436674562009-11-02T14:59:00.002-05:002009-11-02T18:22:15.636-05:00Yay!!So it's been a month since they biopsied and collapsed my right lung. That's all healed and I'm returning to dance tonight. I didn't quite feel up to dancing since I was dealing with the pain in my lung. It wasn't constant, just when I took a deep breath. Ya know, the thing you do when you're dancing and exercising :) <br /><br />I started working last week. Most of Sunday I spent with my head in the toilet because of an antibiotic I was taking for infiltrates they saw on my xray when I saw Dr. Trapnell. They stopped the antibiotic and I felt much better. Thought I should give work a try since I was scheduled and knew I wasn't contagious. So Monday I went in and tried to work 11-2. I spent most of my shift sitting in the back office because I kept getting light headed and whiting out... not black out, white. I think it was because I was dehydrated from being sick Sunday. I worked again on Tuesday and only had to take one 5 minute break because I felt a little weak. I worked again on Friday and that went much better. <br /><br />Thursday I was back up in Cleveland for the repeat/9 month bronch. Cleveland does bronchs with biopsies at 3 weeks, 6 weeks, 3 months, 6 months, 9 months, and one year. Then I'm done unless a problem comes up. It was the never ending day... 7:30 started it all with bloodwork, like always, and my bronch was at 3:30. We finally got in the car around 5:30 and didn't get home until 10pm. Dr. Budev did my bronch this time and said that everything looked wonderful but wouldn't be surprised if I had a slight amount of rejection because of my anti-rejection med levels being pretty low. Well, here's the best part. I talked to Cleveland today and everything about the bronch came back negative. So I have to reduce my prednisone and I'm off all of my antibiotics as of tomorrow! yay!<br /><br />So off to work I go tomorrow for 3 days and then tap on friday :) Life's good again :)Jen Girlhttp://www.blogger.com/profile/09422438977113019712noreply@blogger.com1