Wednesday, March 30, 2016

This Beautiful Hell I Live In

So much has changed over the last few months and since my last post! Jeff and I got married!  No, I had not been divorced long before I remarried, and no, Jeff and I haven't been together for a long time. HOWEVER, let me tell you something about Jeff. He has done more for me (and my family) over the shorter period of time we have been together than anyone else I have ever been in a relationship with, including my ex-husband. Jeff has already spent more days and nights in the hospital with me since we've been together than other person I know, including my ex-husband (with the exception of my foster mom). He has learned more about Cystic Fibrosis, diabetes, my treatments, and my medications than anyone else I've ever been with as well. He reminds me
regularly that I'm strong enough to fight this and that I am strong enough to make it through the possibility of transplant. He comforts me and reminds me I am worth everything to him when I feel worthless because I can't do everything I feel like I should do or want to do because my disease has progressed to the point of needing transplant. Jeff has already shown me that I can count on him to be there no matter what, and so has his family. And the most important thing is that I KNOW he loves me, and I love him too. He makes me smile and laugh at least 20 times every single day and he makes me happier than I have ever felt with another person and he knows how to say he's sorry. And THAT is ALL that matters.
 So despite what outsiders may think, we have the most amazing relationship, and it is one that will most definitely last.

My newest central line
I have finally gone through the lung transplant evaluation process at Duke. The only things holding me back from being listed right now are $15,000 and 23 sessions of pulmonary rehab with my caregiver. The $15,000 is needed to be raised BEFORE I can be listed to ensure my caregiver and I will be financially ok during and after the transplant itself. We are required to relocate to Durham to be within 20 minutes of the transplant center. There is also the 23 sessions of rehab that need to be done before being listed to help build up enough strength to make it through the surgery and to help ease the recovery process. I have to be listed in my "window for transplant," before I get "too sick." I am currently in my window, according to my transplant team. The only thing holding me back is that 15k.
Home IV antibiotics
I have also been in and out of the hospital several times since my last post. Most recently discharged this past Thursday. I am continuing for the next two weeks with IV antibiotics at home. It seems I have been in the hospital more than I've been home the past few months. I've struggled a lot with fevers and low o2 levels despite being on oxygen all the time. Over the past few months I have gone from needing 2-3 liters with
activity to needing 5-6 liters all the time. 
Overall, I'm just exhausted all the time.  Somedays, just getting out of bed is a chore, but I have to because I refuse to give up and I will NOT quit. My days are filled with medications, breathing
treatments, oxygen, insulin, blood sugar checks, tube feeds, doctor appointments, nursing visits and my regular, non-medical daily chores. I don't have much time, or energy, for anything extra anymore. No trips to the mall. No parties. No outings. No BBQs. Nothing.

It's so hard adjusting to life needing transplant. I've never been someone to really ask for help, but since I have had such a drastic decline in my health I've had to swallow my pride on many occasions and ask people to assist me in some of the simplest things. I used to be able to just force myself to do these things despite knowing I may be pushing my body a bit too hard, but now I am positive that if I don't ask for help I will be too exhausted from simple tasks to last the rest of the day. Trying to function with a lung function less than 16% is physically and mentally draining... 
My health definitely plays into my mood and how I deal with the day. Most days, I don't even think about the possibility of not raising the money for this
Tank was my Christmas present from Jeff <3
transplant on time. Most days, I am upbeat and positive and know that I will make it. I have my faith and a close personal relationship with God, my savior, to thank for that. On days where I may have a rougher time, I usually have the mental/emotional strength to battle the negative/"what if" thoughts that may surface head on. Rarely, I have days where I don't have the mental ability to overcome the fear of not being able to raise the money for transplant before my "window" closes or the fear of just not getting lungs in time.

I don't really know how many people read my blog, but if you do, and you can afford to donate to my transplant fund, you would be helping to give me a fighting second chance at life, my family and I would be forever grateful! Every little bit helps, even just a few dollars! It all adds up! I have a gofundme, a giveforward, and a tee shirt fundraiser. I will link them below. Again, if you can help with even just a few dollars, it would be AMAZING!
Bonfirefunds (tee-shirt fundraiser): 

Lucas, my brother, myself, and the other Lucas
Ry's football cheer section.
I was so blessed to have been able to go back home to Minne-sota for a visit in October. I saw my wonderful foster family and some great friends over the week and a half I was there. I got to go to my little brother, Ryan's, last high school football game! He's a senior this year! 

I was also so thankful to have met Ducky Kate IN PERSON in January when she came to North Carolina for a visit! Even though I was in the hospital, she came and spent the whole day making me laugh and talking and taking pictures. 

"I've been fighting to survive since the day I was born. I'm not a survivor, I am an absolute warrior."

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