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Saturday, July 13, 2013

We said Yes and then we were tested.

A lot has been happening since my last post.

Cameron and I are finally married!  All of the hard work paid off, and everything was beautiful.

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!

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.

We did a repeat PFT a couple weeks after I started the Advair.  There wasn't any change.

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.

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.

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.

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.

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?!

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.

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.

Saturday, January 19, 2013

Uh... 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.

Let's see...

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

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.

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.

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!

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.

Hope all is going well with you and yours! 

Monday, June 11, 2012

PFT results and Transplant Friends

So, 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. 

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. 

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... 

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. 

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 :)

Thursday, May 3, 2012

Sad, Late Night Rant

So 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.

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.

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.


 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!

 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.

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.

 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.

 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.

 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.

Thursday, February 2, 2012

Highly Emotional

I 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!

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.

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.

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.

Even better, you get to live with health. Something as a CF patient, was a little hard to comprehend.

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.

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 :)

With all of that being said....

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!

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.

I am thankful at this time of year and I am blessed