My Moments to Breathe

Thursday, May 23, 2013


So its been a few days since I got my port. At the moment I am classifying it as putting it under the "what the heck was I thinking" category. Yeah, I could just be being a baby, but it hurts.

I went in on Monday and the procedure went pretty quick and I was on pretty good meds. I know I was "awake" during surgery (but falling asleep because of meds) and the only thing I remember is one guy asking if it was ok if he took my nail polish off my finger and me replying, "Yeah, cause then it will force me to paint them again..." HAHA, ok so even when I am super loopy, my nails and the way they are polished are a huge concern. Good to know!!

So if you look at the picture you can see some yellowing and bruising around the bottom of my neck, that is a small incision for the tube the runs down toward the big incision (if you look close enough you can see the tube through my skin because I am so little and the swelling as to go down still. And yes, there you have it the port itself. The skin is being held by glue and I am trying to slowly get rid of the nasty blood dried to it. But you can also see the port and the bruising around that area as well.

I am sore, I can't feel the skin that covers the port, and I can't raise my hand above my head or pick of Laila for a week. This is pretty hard!! But the good thing is today I got to take my bandage off so it is feeling a bit better without all the tape pulling and itching. I go back on Tuesday to make sure everything is working and healing right. Phew. Lets hope.

Now, I know that right now my emotions are whats making me hate every inch of the port because it hurts and I hate the sight of it. I do know that this is going to help me be a better patient, mom, wife and over all Cyster in the long run. So before anyone tells me I am silly for hating it, I just needed a little pity party until I see how much it is going to help me and make my life easier. (And thanks for all the "PORT" jokes on Facebook....) Less pokes and PICCS is also good news. Let the healing continue!!!

So here is another step in not only staying a fighter, but becoming a warrior!!

Friday, May 17, 2013

Bye Michigan

I am back in WI and on day 2 of waiting by my phone, or as I my aunt would put phone waiting by me!. They say it will get easier. I still have a few things to do before they pack my bag, Lailas bag, Jer Jons bag, and clean my house. So needless to say I am ok with waiting a few more days (or weeks, or months...lets not hope years!)

It was very hard to leave MI and still hard to think about how it will probably be awhile before I am back to that side of the state. I did take a longer glance at the house driving away, and a few more looks in the backyard and a moment longer in my old room for the just in cases. Yeap, I have the just in cases going on pretty hard core. 

Sadly, I still think my brain stops me from fully grasping everything because when it came to saying goodbye to people, I just couldn't. It was all normal goodbyes like I was going to see them all tomorrow. It was more of a reality when I had to say bye to my parents because we all knew it would be for awhile. Big hugs and many tears from me. I felt better when my Dad confirmed, "You will be back here." Amazing how he knows me so well. But this makes me think, how can I say bye to Jer and Laila?! Yeap, again, the Lord will get me through this.

Now to enjoy my collar the way it is before they put in a port on Monday. The one part of my body that isn't deformed in some way will now have something wrong with it. But I am trying to look at it as another battle scar. And I am hoping that once my transplant in here, over, and I am healed and on a good road, that I will be able to get rid of that as well as my tube. So many battle scars, but whats a scar in order to breathe an live?!

Monday, May 13, 2013

Sign, waiting for Delivery!!


Did anybody get as many goosebumps and tears from reading this as I did writing it? I got the call to confirm everything this morning and have still not fully digested it all. Sorry this blog is gonna be a short one, right now my emotions are going crazy. A better word would be: Overwhelmed. As Tay put it "Crud just got real!"

All my ducks are in a row with Kelly my coordinator and will family and friends for what happens once we get the call, now its just time to pack bags and wait for it. Please pray that we don't have to wait too long for our lives to start getting back to normal.

Will blog more about this in the week to come!

Thursday, May 9, 2013

Getting closer

(Me and Ang in FL like 3 years ago...haha my hair is dark and short!!)

It feels so nice to be in Michigan right now. I am enjoying the warm weather, the birds chirping, the green trees...and well, just Michigan itself.

This was the first time I knew I would not be able to make the trip via the wonderful train. It was just too much for me now and this way I could bring my home oxygen system with me. You can never have too many 02s right. So thanks to my Jer Jon and my parents (and of course Archie too) for driving half way just to make sure I could come back to MI and enjoy my last week NOT on the list. And I will enjoy it no matter if my body and brain won't let me sleep at night.

It is almost official that I am on the lung transplant list. Talk to my coordinator today and they are just waiting on one more thing. SIGH its getting closer and my nerves are going crazy. It hit me hard when she said " time we talk I will be listing you, and then we could call you at any time." My body did that go cold thing because it was like a scary (but good scary too) reality hitting you hard. I could have new lungs, and not my own lungs, in my body in the matter of a month. My head still can't fully wrap my brain around this one.

The Great Strides walk is in 2 days and I am looking forward to it, still deciding on whether or not to actually walk or just be a cheerleader like last year. I have my tank of O2, but maybe my energy should be saved...guess we will see when the time gets here. Stay tuned for more fundraising in the works too...people of Hartford have helped a ton and I am in works setting up another one now. As a matter of fact when I am done with this blog I am gonna work a little more on it.

Saturday, May 4, 2013

Just relax

It is a Saturday morning and I am up too early (Yes, I know most people wake up super early, but I need extra beauty sleep!) The last few days my mind just hasn't been able to shut off.

Its is a life style change. From the moment you are put on the list it is a life style change. I have one more week of the life I know and then things change forever. I want to cram so much in but just don't know how. This is the last week I don't have to sit by my cell phone 24 hours. This is the last week of not wondering WHEN. This is the last time I get to freely go to Michigan. Cramming way too much into my trip, but not being able to. I am glad I will see so many faces at the walk for this reason. The list could go on. I don't know how to do this new life, I only know the life and lungs I have now. Again, its all about the fear of the unknown. Jeremy and I will be sitting and getting all our ducks in a row within the next few days. I am putting all my trust in the Lord on this one.

I will be fine.

I learned 2 days ago that my health is on Laila's mind more than I thought. Apparently in school she asks if they can pray for "Momma" when they all pray. This makes me have tears of happiness and guilt. So happy my little girl knows who to turn to and that she wants me to feel better. I love her for that. But also sad that made she carries that thought with her often. Again, just the thought of being unfair to her. But man am I going to raise such a strong girl. And I love her for that too.

So this is the week that although I will be asked so many questions, and will be doing a CF fundraiser, I will NOT let CF get the best of me or rule my life (and those I love.) Bring it CF, you don't know who you are dealing with. 

Thursday, May 2, 2013

Hello May...I'm ready!

Yeah! Tues is here and over and it was a great CF day in Madison for this girl (is there such a thing as a good CF day?! The answer is YES when you are at a certain point!)

I got to meet with the surgeon who has a 50% chance of doing my transplant and it was good to see a face and ask questions to a person who will be in the room and be handling the lungs that are going in (and out) of  my body. The man who has had a hand in so many of these things and seemed so confidant in what he was doing. Meeting him was another step closer to being on the list.

Then off to the ENT my family and I went for the appointment that the team said I should have before being on the list. I will skip all the details of the appointment and tell you all the good news that I do NOT need to have sinus surgery. There isn't much to clean up there in terms of being on the great list or not. WOO HOO and another step closer to being on the list.

After that quick visit we headed off to the Pulm lab to have my PICC pulled and to sign consent form on the transplant surgery. My lungs are up to a 28%, I gained 2 pounds (now putting my up to 99) and we talked about the port (which I am getting later in May), and got my 3 vaccines I needed for the great list. My transplant coordinator was there to talk about the lungs I could get and to have me sign papers, it was nice to see her again and have her tell me I did a great job as a patient. So there it was the last step I need to be on the list.

Now is a waiting game for another week to get the call with a huge YES you are an official member of the transplant list. And I sit here as anxious as ever, with my emotions at an ultimate high. The entire month of April CF was thrown in my face and I am so excited to see it go. See you later April showers and bring on those May flowers!!! 

There are so many exciting fundraisers in the works to help with the cost of the upcoming transplant (just talked to some awesome people today that want to set one up!) and I want to thank ALL of you who are willing to spend their time and hard work to help my family out. As well to all of those who come and support the fundraisers themselves. PLUS next weekend in the Great Strides walk in Ann Arbor and I am thrilled to be heading that way with some oxygen to help raise money!