Stop Growing, Laila!! Today was Lailas first day of school this year. My little lady is getting too big, she was actually taller than some kids this year! My little peanut. Look at her writing her own name..so cute!
She is going 3 days a week this year and is very excited about it. We dropped her off after all the pictures, and first day of school traditions I have started. She was OK with all of it until it was time to say goodbye and then she started to get a little nervous. Of course it only took a, "Look, Pieper is here!" for her to hug and give a few kisses before she ran over to sit by her.
We picked her up and wasn't ready to go home, we had tears the whole walk back because she wanted a friend to come over...and Mom and Dad did NOT qualify as a friend. Whatever, I play a pretty awesome My Little Pony!!
This could be because I am feeling a little better and have enough energy to use on planning, but I am going to start a few things this school year and hope to follow through with them. More planned dinners, more reading, more crafts, more outings. I would like to continue it until my body tells me to slow down, and then slowly continue until I get "the call" and then hopefully everyone else can help continue her little routines.
I was hoping to have them by the time school started so that she wouldn't have to miss so much school while she was in Michigan, and part of the reason I was so excited about getting the dry run call when I did. But I do know that God has his plan and whatever it is REALLY is best. Luckily, Laila has one of the best teachers who understands and is willing to help. Jeremy and I are also lucky enough that her teacher is a friend and can go on a personal level can get so much help from her, this really is added to the list of blessings we have during this process.
I have signed up to do 2 CFF events in the next couple months...some very awesome opportunities. I am looking forward to them both and hope they go without a hitch. Fingers crossed and prayers sent!! I also hope all of the Team Cassie events both in Michigan and Wisconsin go smoothly too, thanks to all who have worked so hard in both states to help us and the CFF out.
I am still hanging in there, and since it is summer the color I have got from the sun and some good makeup makes it look like I am a little healthy...and would be better if I put on a little weight. I still have so many crackles in my lungs and they are getting louder and more annoying. I am not a quiet person any more and if I needed to hide to save my life, it wouldn't happen...my breathing would give it away. I am dreaming about the day I can be quiet again, run, jump, clean, cook, shower, shop, travel, and most importantly BREATHE again.
Here is to another school year, and a crazy one at that!
Today is Monday. And this weekend is Labor Day weekend. But lets back up a few days...
I took a little nap on Saturday knowing that I was going to be taking some pictures that evening and just wanted to make sure to "rest my body" and try to stay as healthy as I can for as long as I can. I had started to wake up when my phone rang, naturally when my phone rings as of late there is always that moment that I think, "THIS IS IT..." but as you can see, it hasn't been (well except, you know that ONE time like a month ago...) It was mom and as much as I love her I decided to let her go to voice mail so I could wake up a little more.
I walked out into the living room to Jeremy talking to Mom...my grandma is not doing well. UGH this is one of those times that you remember how not fun it is to live far away from family. And you also remember how not fun it is to be on a list so you aren't able to just pick and go. SIGH. I was told that it was some peoples wishes that I stay on the list and not come back...I have my own opinions on this but will just hush. I am sure you can guess what they are. From past experiences of things semi-related to this topic, some people knew that I would get worked up and my health could and probably would decline so I know I need to watch that and keep my mind on my health too.
This weekend is a harvest weekend in the world of transplants and I know I should stay, CF Cassie knows I have to stay...but the other Cassie knows I have to go back for whatever should happen. It was going to have to be a waiting game and a talk to my coordinator. Thats very hard for me, more than I can explain.
I will admit that I was/am quite blue and wanted to be home, luckily my sister had some time off and caught a flight out last night. We have always gone through hard things together. And, of course, we weren't going to stop here. But thankfully the Lord has been watching out and looks like Ma is doing a little better and will hopefully be able to enter at home hospice. I called and was able to talk to her again tonight and it was so great, we laughed (and I cried a bit...) joked and just, well, talked. Thank you Lord. Let the waiting game continue a little longer!!!
I have had good quality time with my sister, doing all the things we go to feel a little better (its starting to be a routine and I am ok with that) like eating Mongo, doing nails, pictures, chit chatting....just being girls with a side of Jeremy! Thanks Nit for coming out.
So today is Monday and we continue to wait and in the mean time...staying healthy, praying, and dealing.
Yeap, more blood last night. I finally had coughed up all the old blood from last week and was so excited about that, but then when I went back to bed the rattling started and I just knew. Back to the bathroom I went to spit out and cough up some more new, bright red blood. Luckily it wasn't as much as the last 2 times, but still, it was new blood. My poor lungs!
I am hoping that this was just them being super irritated because there was so much old blood sitting down there. I am not even sure that would make sense, but am frustrated because there is more old blood in there now. My lungs actually hurt afterwards, one of the first times that I have ever used the word PAIN referring to my lungs before. Ugh. I hate this.
Today I will take it a bit easy (last day of antibiotics too) and will just try and heal whatever it is AGAIN....just wish I knew how to do it better. The Hello Kitty band aid I tried last time must have fallen off haha. But seriously, my lungs have gone through so much and now they keep bleeding. That is so weird sounding...Lungs bleeding....lungs aren't suppose to bleed.
Resting, breathing, and healing all so CF won't win. I will say it again...I NEED NEW LUNGS!
Here I am again on "bed rest" for at least a day. I coughed up more blood. Bright, red, thick, blood. I am facing my biggest fear again. How does this happen?
I had called the doctor today to say that I was going to bite the bullet and go on antibiotics for another week since I was starting to feel a little better finally. Maybe I was wrong, or maybe this was the last bit that needed to come up and now heal. I have no idea. Just no idea. I am going to call in the morning to let my doctors know this happened. I need new lungs.
The weird thing was it came out of NO WHERE! I was taking some senior pictures when my rattling was starting to go crazy, I just kept clearing it...then I tasted that taste. I excused myself from the senior (poor boy, I am sure it wasn't the most pleasant to hear!) and went to the other side of the building to spit stuff out. And one of the scariest things is, my lungs just fill up fast with blood again so I have to keep coughing and spitting. It is not very pretty to look down at the grass and see pure blood coming from an organ in your body. My lungs are bleeding. I knew I couldn't go home to put a Hello Kitty band-aid on them, but knew I needed to go home and have Jer help.
So I told them I needed to leave and would take more another time. Thankfully this family is more than understanding and didn't have a problem with it. As a matter of fact, the senior went and picked up my car so I didn't have to walk anymore. I got in my car and went home to Jer. He helped me into bed with O2 and just had my stay there for awhile. He went to the store for me while I just sat on the couch and breathed slow and tried to relax all the anxiety. And I am still here on the couch trying to breathe and relax my anxiety.
Praying new lungs come soon.
YOU SEE THAT?! I won $5,000 for the Cystic Fibrosis Foundation!!
So I get to cross something else off m bucket list. I won a contest and, HELLO, could this contest have a cooler prize? I won and get to give my charity some money, which in turn could help save my life (and all my other cyster and fibros!) I am pretty excited about this and wouldn't have been able to do it without the help of all those who voted for me to move forward in the contest. Thank you so much, all your clicks and time for sure did not go to waste! You all helped donate to the CFF! I am so excited about this and even more excited to be able to blog about it. What awesome news, right? A great pick me up! I also want to thank Jamie L. for asking me to be a part of this and helping with my makeover.
Doing everything I can possibly do to make CF stand for Cure Found! And getting to cross something else off the list #60. Win a contest
I am home now and still not feeling the best. I still have a hack and stuff stuck that is rattling around. I got some of it out a bit ago and, yes, there was quite a bit of blood in it. FRUSTRATED. I am sick of being sick.
I was blue sitting in the hospital (hearing the helicopter go back and forth) thinking how I wish I could just feel better. And the thing I have to look forward to is a transplant. Meds aren't cutting it like they used to. Heck, I can't even take oral antibiotics anymore to help fight crud. I can't take care of my daughter like I should be able to. She is in MI right now and I miss her like crazy, but think of how glad I am that at least she is being well taken care of and can be a kid without so much worry (I talked to her and was coughing, poor baby asked if I was OK and if I got rid of my CF yet?) I don't want her to worry about her mom and her health. I feel so guilty. The thought pf a shower is exhausting, and not even mentioning any trip to the grocery store. I just want to be a normal person. I want to be able to do the little things again. I hate this.
Jer Jon has been so good this past week. He even made me homemade scones and brought them to the hospital. Plus brought me Arbys...YUM! I am thinking (dont tell him) that tomorrow I will make him an awesome dinner followed by sitting outside and enjoying the last part of summer in peace and quiet. (or maybe invite people over!) Thanks for everything you do, even when it is a pain!
I am now back to the point and healed enough from the dry run that I am ready for my phone to ring.. NOW...ok...NOW! Hmmm, a watched phone really doesn't ring. I am not sure I will be fully healed from the drama that went on during those 24 hours until the real deal is done (not to sound like a cry baby.) But little things hit me, like...when I was coming home I was thinking about it should have been coming home after transplant mending and feeling better. Not going home in hopes to feel better and get enough 02 in those lungs to last until the next call.
I know I am not the first, and by far not the last person to watch themselves slowly die...but it doesn't mean it is any easier. It is scary. I am not scared to die, because I know that my Savior will greet me with open arms and I will feel no more pain. Really that doesn't scare me. What does scare me is all the things left behind here. Laila needs a mom and how can I do that to her. She is so strong, she really is. And I know she is going to be such an awesome woman one day, But she needs a mom too. I want to be that Mom and I want to watch her life and be there to support her. I need to tell her things that my mom told me. Maybe I just need her more than she needs me...who knows.
I am looking forward to having a sanity break this weekend. YAY for visitors to help Jeremy and I get our minds away from CF and on to some fun things. Even if I am on 02 and sitting in a wheelchair for part of it (or at least walking veeery slow and taking breaks) I will have a good time. I will get dolled up and go out. I will be the old me. PLUS I GET MY GIRL BACK!!
We took our vacation and it was so nice to be able to be with family for awhile (and hanging out in a gorgeous house and pool helped a little too!) Thanks to all the Husbys I didn't have to do anything, to the point that I started to feel bad. I was so well taken care of, and they did it without complaining. I am not sure I can say "Thank You" enough! Next year when I have my new lungs, I will do most of the cooking and cleaning guys!
Thursday I had a doctors appointment which led me straight up to a visit to D6/5 for a good ol' tune up. Yeap, I am in in the hospital trying to shake whatever this infection is. I am not going to bore you with any sob story, but can tell you I don't remember the last time I was this sick. It has brought me down hard. Hoping that I can heal pretty quick and be able to go home (they are thinking Monday!)
I have had so many people come up to me and say how sorry they were about my dry run. Everyone here was rooting for better results, as to be expected. They were pretty interested in my story...we learned today that I was only the 2nd person in this hospital to get as far as I did in the dry run processes. Thats crazy! My parents always said I never did anything easy. We also learned that the surgeon got questioned a ton, and was brought in by the big wigs to have a meeting about it. But he made the right decision, I guess there was quite a bit of fluid in the back lobes and for as healthy as the donors heart was, there was no reason for the lungs to be as heavy as they were. Which means something just wasn't right, and I am glad the surgeons made the decision they did. If they weren't perfect I don't want them. I will get my turn soon.