Thursday, November 29, 2012
So you know something is up after 6 years of avoiding a CF support group, and I found myself in one tonight. I don't want to claim that I loved it, but I did like hearing about the guy who was 4 months transplant. Not too far removed from where I am now. Dear Lord, this will be ok.
I got word that I will be staying throughout the weekend. Sicker than I have ever been and still trying to be ok with it. And before I leave I need to do a six minute walk to see where my oxygen is at so I can take some home with me. Oh plus get my handicap sticker so I can stay level with this cold weather coming up. Again, dear Lord, it will be ok.
Jeremy and I met with a member from the transplant team (a coordinator) yesterday to talk about a few things including what all happens. A scary mess of a meeting that left me overwhelmed and feeling very hopeless. I have fears of failing this evaluation and will let every down, including myself and family. Plus, then what happens when I have to look at my 3 year old knowing I can't continue the for her. Yes, I know to not think that way and to just kick some butt. But I just find myself with the major cases of the WHAT-IFS lately.
"You know you could not make it out of surgery, you have to prepare for that"....AHHHH!! How do you prepare for that? How do I say goodbye to so many people and make sure all the words I want to say are said and that they all know its ok if I die. How do I tell Jeremy that he will be good and that Laila will be ok and not to worry because he is a strong person? How do I hug my daughter thinking it may be the last time I hug her...or that she ever hugs her Mommy. How do you do that?! She needs a Mom. I wish I could hug her right now so that I could be ok at this moment.
Sometime reality is a big nasty thing. And listening to all that was reality. Jeremy and I are going to sit down together and with some family and figure out when the best time to schedule this work up/evaluation is. Yes, it will be coming up in the next few months...feb...march. So time to study for the biggest test in my life. What does that mean?
It means I work my buns off to do everything I can. I eat like crazy. Food is no longer just something for fun...its like medicine. When I am full, I need to grab that extra few forks full....and add butter to them. I start a monitored exercise in Hartford. Go someplace like the local hospital and work out while being put on oxygen and a heart monitor and having somebody tell me how and what to do. Start going into the hospital, even if Thanksgiving or a MI trip is around the corner...this comes first. Get more protein and more vitamins. The stronger I am and more I can prolong my life pre-transplant means the stronger I am and longer I can prolong my life post transplant.
Tears, fears, and a positive attitude. I need to get the old me back again.
Wednesday, November 28, 2012
Hey everyone. Ok so I have had a few days to calm down from CFcrabbyville and ready to update.
I am still as sick as a dog but my oxygen is up to 93% and my pulse rate is 98. And I am not having the oxygen on ALL the time. So two things are better off. I weighed 102 things morning but don't get excited, that should just tell you all how much water weight I am carrying from getting pumped full of fluids. A little funny really.
A member of the transplant team is suppose to come talk to me today (or really in the next week I am sure) to give me some more information and talk about the evaluation. Although scary I am looking forward to knowing just a bit more of the big battle ahead of me. I like to be informed and please don't sugar coat this crap. I just hope I make a good impression in my sweatpants and dirty hospital hair....I'm looking good. It will be nice to get some questions answered and learn what I need to work on the most in the next few weeks or days or whatever the time limit is before the evaluation starts.
I am starting to eat more and....wait for it...having been doing some tube feeding. They switched formula and it seems to be doing my tummy much better than the other stuff. PHEW cause if I need to pack on pounds and have to do it this way too then I need my tummy to enjoy the ride as well.
My sugars are all over, but mostly high. From the past we know that when I get sick that this happens, but I need to get them regulated for this evaluation....so umm Sugars let go. I did need insulin yesterday and wondering if today will be the same.
I have one of my favorite nurses here on D6 and just makes me feel safe and like somebody is fighting for me when I need something done. YAY DEB! Thanks to everyone for all the kind words, thoughts, and prayers. And for those who have asked to come visit too...just a little crazy around here right now (or I'm spacey so I think its crazier than it is...either way!)
Plus Jeremy and Laila are coming to give me a little slice of home today. They came yesterday as well and I am pretty sure Laila thinks that the hospital is the coolest place on earth. She came in hugged me, kissed me, blah blah mom...took her shoes off, climbed in bed, pulled the covers off and asked to watch cartoons. What a gooseball (as Laila would say!) Jeremy and I did some Christmas idea shopping and card making. Then went for a walk...I lasted for like 5 minutes before I ran to cough and grab some oxygen. HAHA! Thanks you too for doing all that for me!
Sorry the last post was so grumpy and gloomy...just having a bad day. But as the antibiotics are flowing and the oxygen is coming I think I will be getting back a little at a time. But CF can still suck it!
Monday, November 26, 2012
I hate being sick. But what is worse is when you are 50x times sicker than you had thought. Thats how my day has been. This is the first time most of you will hear, but I am sitting in Madison hooked up to about 4 things. Not a very pretty sight. And my NP uttered the words, "you are towards the end of CF." GULP. The truth sometimes is way too harsh.
I came into the hospital knowing I was going to stay for a few days to get things moving on the month long sickness that has ruled my life. Well, looks like I am in for almost a week. Every number was way too high or way too low and I feel like a CF failure. And I know many of you don't like hearing me say that and can disagree to you are blue in the face, but I do feel like one.
My oxygen was at 87%. Yeap 87% so thats one test I don't have to take, cause I already failed it...Cassie gets oxygen for home. My heart rate won't go below 112 because of the no oxygen thing, heck my blood was even like BLACK. I am a whole...wait for it...96 lbs! Yeap lost 6 lbs. And I could go on but will save you all my sad grumpy mood. Lets just say I have a huge uphill battle to fight, and fast. I am also in talks with meeting a member of the transplant team and getting that whole things really rolling. So to sum this all up...SCARED.
But oxygen has proved to be my best companion right now, in a matter of 30 minutes my oxygen had already gone up to 92% and I am thinking that I will be able to get an ok night sleep tonight. (After I order more food, even if it is 5gm, right Jeremy!) So I hope I can be well rested for whatever the game plan is for tomorrow.
I am so sorry this entire blog seems like a downer, I just am in a CF can suck it kind of mood. But I am hoping all my friends and family are having a good day and can be thankful for the health most of them have. Don't take it or time with people you love for granted. You never know when it could be taken away. While I can think of a few families who know this feeling and I love you guys very much. Go hug your children or call you Mom to just chat or sit down with your spouse and hold their hand.
Like I said this is a battle...but one I need to beat so I can win the war.
Friday, November 9, 2012
When I was a little girl I never had to be told I was sick. Or what CF was. I just grew up knowing I was a little different than most kids.
Now the odd thing is that my sister is not that healthy either. When she was a baby she had open heart surgery and has had to go to the doctor every few years to check her heart out. We often joke to my parents that it was a sign they shouldn't have mixed Italian, Swedish and German together and that God was telling them ENOUGH! Ok all jokes aside I think that her being sick too helped a bit. Only because at least I wasn't the only messed up child in our families! (BTW she is doing AWESOME!!)
I was the ditzy little blonde you see up there posing because I was for sure thinking I could and would be the best model ever (you know if the bird thing didn't work out...only a few people are laughing right now and thats ok!) I loved to play Barbies or My Little Ponies with my sister. I was the girl who would rather wait til the last second to go potty so I wouldn't miss anything. I was the little girl who ran (very clumsily!) and didn't get out of breathe. Life was pretty normal, I just had to go to the doctors more often.
My parents did a great job to make sure I had a normal life and that is very important. I was normal after all, right!? If I was a good girl when I got a shot or stayed still during a sit with the ENT I could get a special treat...I remember one time my dad during an ENT visit (which he HATED) told me if I held still and didn't cry he would buy me a Barbie. Little did he know I didn't mind the ENT because it meant no needles. I sat SO still cause that Barbie was gonna be mine. She was so beautiful. The other thing my mom would do in high school was let me skip a half day after an appointment and let me relax while she and Grandma would make some lunch. If you have the bad, you can have some good too.
But I do remember getting certain new meds. Like my nebulizer or when I started to take my pills in capsule form and not mixed into my applesauce! I never questioned what it was for, I just did it. I also remember my first PICC line (Ok, I questioned that one and many of those after!!) And I remember every surgery. I look at Laila and just think, "How did my parents do it?!"
But Laila is at that age (and seeing me sick so much) that she is starting to just KNOW about CF. Now I haven't been to the point, and not sure how or if I ever will be, in explaining to her how this is terminal. YUCK I hate that word...TERMINAL. I figure one day she will figure it out when she learns more through my doctors appointments, hospitalizations, surgeries, sicknesses and listening to her parents talk. But for now I am letting her enjoy the childhood she has without having to worry about her mommy and the thought of not always having one.
Still sick...sicker...so now its time to do some work and rest up. Meds and water!
Wednesday, November 7, 2012
I am doing my respiratory vest right now so feel free to read this entire blog in a shaking voice.
It was great to be back in Michigan and I miss it and am looking forward to going back. But now that I am in Wisconsin again its time to start feeling better. HAHA! I still feel like crud and even ran a fever yesterday. Way to go Cassie. But the fever broke during a night nap and I sweat it out and through my sweatshirt.
It is crazy how I can say I am not going to let Cystic Fibrosis run my life, but in reality...of course it does. It always has and always will until either the cure is found or I am gone. But for now lets just keep the infections and germs to a minimal. Great season to want that to happen. I have a doctor appointment set up for December so we will see what he has to say and whether or not to go to the next step of a lung transplant...oh that those dirty words.
Jeremy and I went around to a few classes in Laila's school yesterday to talk to the kids about CF and he did a great job, as for me, I am pretty sure a few kids want CF so they can wear the vest. D'OH I didn't get thru to them. But at least they know a little more and maybe have good questions for their teachers and can raise some money.
This morning we went to Laila's class and the girl was cracking me up. She was answering everything and the only kid who laughed when they were suppose to. Granted it was a forced laugh but it was still a laugh. One kid told us the vest was cool...Lai responded with a "My Dad is cool too!" Made his morning. While Jeremy was telling the kids how raising money would help me Laila says "Yeah to but a horse! WHAT?! No, girl to find a cure. But she loved having us in there and it was the first time she cried when she had to stay at school. Even though I was sad she cried it was kind of cute to watch her lip pucker and try to hold back tears before they ran down her cheek. But luckily she has an amazing teacher who made her a happy girl.
I really need to shake whatever this nasty stuff is because its affecting everything including my mood and my house. But I am hoping that once the freeze comes my lungs will settle down a bit. PSH I hope so cause this no sleep thing is giving me dark bags under my eyes! I NEED BEAUTY SLEEP :)
Thursday, November 1, 2012
Looting candy from your child...I finally know the best part of Halloween. Thanks for the Snickers Laila!
I woke up yesterday feeling like such crud!! Of course, why not on Halloween when I want to walk door to door right?! So I made sure to rest as much as possible before the big night. It kinda worked, kinda didn't. I made the choice not to go door to door with the little one because of some factors. But was so thankful that I had 3 adults who were willing to dress up and walk as much as Laila wanted to!
We went to Aunt Dianes house and ate soup, enjoyed company and Laila got to have a Halloween to remember. Full of ghosts, goblins, and unicorns!!
The stories I heard where so super cute. I guess I taught my daughter about the unwritten rules of Halloween. When a lady offered to let Laila pick her own candy out she picked a tootsie roll (Moms rule: take only one candy!) So the nice lady told her she could pick another one out...another tootsie roll. One lady offered to take some back to Ge. Laila's response, "No she doesn't have a bucket!" (Moms rule: Laila is the only one with a bucket who collects candy, its just for kids!) She told one lady she couldn't have a big candy bar because she didn't have room in her bucket!
She had a ball and honestly thats all that matters to me. Even if I made a choice to not see it. It was hard and earlier in the day I got teary eyed thinking about her life not being normal because her mom is so sick. I started thinking how unfair of me it was to her. Luckily I have a good support system for her that steps in when need be (you all know who you are!!) One day I hope I can go house to house and watch as she pillages the village!