Thursday, January 31, 2013
Back from MI and back on my PICC meds. The funeral was nice and the fmaily is doing well. Thanks for all those who stopped by or sent their thoughts and prayers.
We left our little lady behind at Ge and PaPops house and she barley talked to me today because she was loving life so much. The only thing I know about today is that she got new underwear...gosh, Lai, thanks for letting me know all the important details! But it is nice because today I got to sleep when I wanted to and since this week is the turn in feeling a bit better again, I will get to clean without a somebody "helping." But ugh I miss her so much. Luckily there are so many pictures of her in this house that I still get to see her little face.
I started Pulmonary Rehab today and now am going 3 times a week (again going tomorrow!) But since I am starting to feel better and knowing that this rehab will help even more I am slowly getting back to my old self...back to the girl who has fight left in her. I just hope this can last awhile. I am ready for the crazy next few weeks and months to come. My little ducks are slowly getting in order and that makes me feel a bit better.
I am not going to sit here and tell you that I am ok with the lung transplant, because those are 2 words that my mind can't quite grasp...basically because I won't let it. I still need to mentally prepare for it. And in a week I may need to do that sooner. So for all those I call (I know its a very very short list) for some extra strength, be prepared for it. My friends and family are so important in this part of my life and this now is when I need you the most.
I still am not sure about the port. Yes, it would be easier and less stress. And since my arm is bruised so badly and itches like crazy my mind screams GET IT! But then I think of the Cassie I know I am...she so doesn't want it. I don't want to see my CF when I don't have to. Not that I am ashamed I am sick or have this disease...because its a part of me and I wear it on my sleeve. Just not sure I want to wear it on my chest for everyone and myself to see. (Still trying to talk myself into it and make sure Cassie down the road will be ok with the decision!)
Another battle. Another scar...or 2...or 3.
Saturday, January 26, 2013
Here I am again in D6/5 again. Is it odd that nurses start remembering you so much and know what needs to be done before they even look at the orders. Oh well, at least this way I have a good name...mostly because of the curly haired baby that sits beside me most of the stay.
Now I am not as sick as I should be. Why, not sure, I guess with most CF patients...you learn to be sick and deal with the new challenges that come with it. Or in other words, you sort of get used to it. Weird how your body can get used to breathing only 22% of what it should. But thats the amazing thing about our body, it can be trained. Thats why after transplant you have to learn how to use those muscle to breathe in deep again. Expand thy lungs.
Thankfully, with my body being stubborn I am able to bust out of this jail early. I am headed out on Monday and hoping in the car to head back to MI for a quick whirlwind of a trip. Friday morning we learned that Jer Jon's grandpa passed away that morning, funeral to be on Tuesday. Gramps had been sick for awhile and so we praise and thank God that he is now in the arms of his Savior. What a wonderful place to be.
Now for the crazy part that makes my head spin: I have more things that I have to think about and make decisions about due to the nature of this beast we so "lovingly" call CF. As always I have to eat EAT EAT and then when I am full I should eat some more. Gain weight and as much as a quickly as I can. In 2 weeks when I am having a "good CF day" (basically saying after my IV treatments are done and ran its course...when I should be pretty stinking...well for lack of better words... HEALTHY) I have to blow some PFTs in the lab. If those number don't improve much (please pray they do!) I will have to make a choice to move up the lung transplant eval. SIGH that bad huh?!
Normally I suppose this thing wouldn't bother me so much. But I had a few months to get my body ready for all this: gain weight, pulm rehab, and just mentally be ready too. Ok, so I start now and just be prepared for what is to come. Easier said than done but I just need to remember to breathe and take this head on. Just get all my little ducks in a row.
One more decision. My veins are getting pretty tired of having PICCs placed so my doctor as well as my NP has suggested getting port placed. Now I am trying to look at the thought of that little disc always in me and sticking out as just another battle wound in the war. It shouldn't be a big deal..it shouldn't (see how I am still trying to convince myself of that...) I should do it and be happy there is such a thing, right?! I would always have both arms, and in transplant it could be used easily. (Yes, more me trying to talk myself into it.) But the thing is after these 2 weeks with a PICC, its just pulled and then I don't have it...less CF if you will. But with a port it will always be there... can always see, feel and have that little bit of CF.
Thinking. Eating. Breathing.
Thursday, January 24, 2013
Ok so I was going to totally ignore this one but I guess I can't because of facebook.
Tomorrow I am off to Madison for another little tune up. I spent the day at the doctors yesterday trying to figure out what was the best next move for my health (but shhh don't tell anyone but I stopped for a sandwich and shake on the way home....). My lung function went down to a 22%, I just smiled and told my doctor that it wasn't a very pretty number. EEPS a 22%...my lungs only work 22 out of 100. Sounds pretty scary. But he was very amazed that I still am not oxygen dependent. Well, do you know me very well, I am very stubborn when it comes to certain things. And walking with oxygen is like the last thing I really wanna do until its literally life or death. Good news is he told me that I should do pretty well post transplant. Yeap I said that word without as much cringe today.
Talking to my actual doctor helped my fears for the next few months, If I work hard in my pulm rehab, trying gaining 6 lbs and just keep up with my meds I more likely will get a good grade on my eval. And he also told me that he will fight for a few people if and I am pretty sure he wouldn't say that if he wouldn't be willing to do so for me. Sigh of relief. Now just to get my butt in gear.
I did make the smart choice to hit this infection with the hard stuff vs trying another band-aid in hopes it could work. No this wasn't an easy decision ad it never will be. But oh those 2 weeks that I felt really well was like a little slice of heaven. I could laugh and sleep and play with Lai and clean and do whatever without having to sit for 30 min or whatever. Again this is part of my stubbornness that will help in the long run (but maybe not so much right now!)
I am still trying to learn my boundaries on what I can and can not do without getting sick. If I know something huge is coming up, so I relax the few days before and few days after...no biggie right!! Just need to remember that. Guess I can't be too spontaneous anymore, but that will help for the time before transplant. Breathing is more important.
I told Laila today and she of course has been pretty bummed, but I she will be alright. And its awesome because I am pretty sure this trip is only for a few days and then home for the rest of the treatment. That way my little leading lady can have some what of a normal life. (Yes, guilt still comes very high when it comes to her life being normal!!)
Well, I have a TON of stuff to do before I go in tomorrow and really want to be able to spend tonight as a normal family. More from my comfy bed in Madison!!
Tuesday, January 15, 2013
I have been so down and out this last week and a half. YUCK! I think this cold is a super cold that doesn't want anybody who has it to get better. I have been on antibiotics for over a week and although feeling better, I'm not feeling great.
I am still having fun with my camera and am itching to feel better so that I can take more pictures of people. And waiting to get back to Michigan where I have a few people to shoot. Laila is just going to have to get used to her mom dressing her up and making her pose.
I have to still catch up on my blog but need to get pictures to go with it...so be patient because I still get to cross a few things off my list. But in a little bit I may have to take a step back from hitting it hard and work on my health and getting ready for my evaluation.
It still scares me and I still can't say, hear or even type those two words without having tears come to my eyes. It's all getting so real, not just talk but the real deal. And this is just to get on the list...whats going to happen when I am on the list. Jeremy and I have talked quite a bit on how our world will change once my name is put on that list. So I am trying to take a deep breath and enjoy the life I have known for 30 years and the time I have left before it gets all turned around. Yes, I know that it will be for the good in the long run. But right now it is in the scary real life part. I just need to get healthy, get thru the eval and then get all my ducks in a row before my name is on a list.
Think about it for a minute, being on a transplant list. Is it like hoping somebody dies so that maybe you can live? Guilt that I pray everyday I don't have. I try not to think about it in that way. More like a gift from God and the family of that person...and really from that person. I will have another persons organ in my body helping me live...its not mine anymore. Wow thats crazy if you let yourself really consider that. No wonder you have to have a stronger mental constitution going into this. I don't know how to breathe any other way than with MY lungs. I don't know how to breathe with anybody elses GOOD lungs. J
Just think about that.
Friday, January 11, 2013
30?! Psh really I am not feeling sorry for myself that I am no longer in my 20's...that just means I survived and was a fighter for 30 years now. CF may be getting the small battles in but on that day I won a big battle.
I made it to 30 and was feeling so good that day. And look at that, all 30 candles lit and even though it may have taken a few (like 4) and a tiny help from Lai they all went out. I blew them out. ALL 30 CANDLES. I do have to admit I went and did my nebulizer right before just to open the airways a tiny bit more and it worked. Now to look forward to blowing them out for number 31...cause no matter what or where I am or whose lungs I have, I will blow them out.
This was a pretty big moment for me and seeing and hearing my family around me that day (it was a pretty big snow storm in MI and it didn't stop them from coming to help me celebrate) showed me that it was pretty big for most of them too. I am not going to bore you with things they wrote or said to me, but I was so beyond touched. Thanks everyone!
I DID IT! Crossing off #17 Blow out all 30 candles
Wednesday, January 2, 2013
CLICK CLICK CLICK!!! I am sure most of you can guess by now one of the check marks I get to make on my list. I got an awesome stinking camera for Christmas, and I mean AWESOME!
This thing is maxed out and way too smart for me. I for sure need to sit down and learn how to use it so I can put it towards even better use. I have been a very busy and happy girl. A true dream comes to life. I get to have pictures of all the people I love and a memory is made with every single picture. This last week I don't think there was a time that I wasn't either behind the camera or on the computer editing and really I wouldn't have it too many more ways.
Thanks to Trish for this awesome gift. It was so beyond thoughtful and generous. And for those of you who know her will shake your head in agreement with the next few statements. Trish is one of the genuinely nicest girls you will meet. And her outer beauty matches in her inner beauty as you can see. She does things for people just out of the goodness of what is her. There for sure aren't too many people in the world like that. Plus she is so much fun to hang out with! Love you Trish!
I am still very scared to break my new pride and joy. When it comes to falling on the ice you best believe I would rather break my leg than drop it. I am always looking for more people to pratice on, so how about it?
A BIG thanks to Trish for making another cross of the Heaven list. #19 Own a nice camera