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I still haven't been able to get a good night sleep and we are guessing most of it has to do with anxiety. I guess I need to get rid of things that cause anxiety...at least the things I can control. That will be my main goal this week.
I had a doctors appointment on Tuesday to follow up with my cold, just to make sure everything was OK and that it wasn't anything else. I still weigh only about 89 lbs, but slowly trying to learn how to eat and be OK with eating and correcting later. Medically induced things are crazy....def harder to control. But still gives me hope that once I figure it out more I can make it stable. Then with a good diet and exercise things will all work out.
My chest X-ray looked great and the bronch from the other week didn't show anything except that I had a cold. They knew I had a cold before I did.. Wish I had the warning HAHA!
My 6 minute walk went well, kept an 02 level of 97%, but once I took my mask off it jumped straight up to a 100% in literally 1 minute. Thats an awesome number to see and honestly it never gets old. The other number that rocked and made me pretty much cry (happy tears) was from my PFTS. My lungs are now functioning at 84%. You need me to say that again?! 84%.
84%!!!!
And thats with a cold and only 2 months out. I just wanted to squeeze my lungs and donor family so badly. Thanks for this new look on life....well, really, just thanks for life.
Its crazy and I really just can't wrap my little anxiety ridden brain around that fully...not yet at least.
I did get an antibiotic just in case there was something in my sinus (they took a culture) and just to make sure whats in my chest doesn't settle and turn into anything else. To keep my shiny new lungs as shiny as when I first got them. So I have been doing my PEP, exercise, and just doing some deep breathes.
I am starting to feel pretty good and the chest area seems to be getting a bit better...all of it. I know that some of you have seen the site and how crazy it looks. Well, it is all healing very well and the nerves are growing back...which causes discomfort and my ability to wear certain shirts cringe worthingly impossible. So I have been pretty much living in the same few outfits, depending on what area the nerves are growing back in. But I can rock them with some good nail polish, hair style, and accessories.
I also am starting a desensitization to sulfa drugs this week. THIS. IS. WEIRD. All my life I have been told and only known to stick away from these drugs. And now I am going to willingly put them in my body slowly and hope that I don't react to them. Fingers crossed and prayers sent please. In this process I was also told that if it works I am not able to ever...let me type that again...EVER....miss a day or my immune system will freak out and never ever accept the drug again. I mean I know that I am already on a good routine of other meds that can't be skipped, but those are ones too that my body won't let me take is for some reason I skipped a dose for the day. Hmmm, doesn't that sound like a good reason to have stress therefore some anxiety? Add it to the list of musts...kick another anxiety out that I can control.
But even with all that I am so glad to be able to breathe easier and know in a year I will look back at this journey and my scar and know it is out of love that I did it all. The pain with numb. The memory of the pain will numb.
It is 5:45 am and I still haven't fallen asleep. Tomorrow is going to be a long cranky day. I don't know whether to root for school to be cancelled so I can have my girl home or to root for school to still be on so I can at least have a 2 hour nap.
Well, I caught that nasty cold Laila had. At first it was no big deal and I was all like "if this is what a cold is like, you non diseased people are babies." I spoke to soon. Granted, yes, this cold is still easier to breathe than my 18% lung days and I can still do things. It seems like now I have caught an infection...or worse. I am going to the doctors on Tuesday to get it all checked out and I guess I may need a bronch sooner than they thought, to clean me out and check stuff out. I wasn't able to keep any food down on Saturday, I even tossed the apple juice and graham cracker I ate to make my low sugar of 48 go back up to normal.
My skin is back to being very sensitive and my chest where the sternum is is burning. My arm that was "normal" now seems to be giving my trouble with the "going numb" and "getting hot" thing...blood clot...?!...I don't know how because I am on blood thinner. I guess thats something else they will need to look at on Tues. I honestly just am GRRR!
I have my good days, my ok days, my not so good days, and my bad days....yeah, its normal and I can tell myself that until I am blue in the face but I want perfection. I want it all. I want no infection, rejection, I want to be healed, 100% o2 level, 100% fev1, my weight back up, no diabetes, no blood clots, no anything...just all healed and perfect.
I am aware that most of this is a good pain because its not pain that is getting worse and making me sicker, but pain that is going to slow down and make me healthier (if that makes sense like it did in my head I am not sure!) Like I said I just want to feel normal again. I got my new lungs, now I want to use them as perfect as they were. As I was sitting in bed in middle of the night, my mind wandering, I started to feel bad for my new bling...they were used to a healthy life without mucus, coughing, or fighting to stay in the body. They were happy....now they have to work!
Laila is still happy to be home and starting to remember that I am a push over...hence the little girl sprawled out in our bed. Jeremy has a cold too so we have been trying to battle through it, luckily he still has enough go to get everything ready for dinner, to clean, and to take Laila when I just need 5 minutes. I owe him.
I hope you all are keeping warm and safe this winter, YUCK...isn't it nasty?! I know my plans are to snuggle up in a heating blanket and read a book today (after a little nap...whenever it is that I finally get tired.) I am wishing that I feel a little better so I can straighten up this house, its a clutter and I hate that!
Have a good day at work, school, or staying home out of the snow!
It has almost been 2 months and I am getting antsy.
I am still sore, but it is mostly the part that they broke my sternum that bugs me. But what can I expect there, they broke a bone and I have wire holding it together. It just feels weird because it gets tight, and my lungs just feel like they want to burst out and expand more than my chest is letting them. I know it will just take time, but as most of you can tell...I don't have the patience for that! I want it healed, and I want it healed NOW!
I have a bronch tomorrow so that they can check out my lungs straight from the source...my lungs. They will check to see how everything is doing and make sure there is no rejection. I am trying not to worry but I have as much problem trying not to worry as I do trying to be patient. I am hoping that everything goes well with the bronch itself as well as the outcome.
My meds are still giving me some hassle thats a tad annoying. I get nauseous and even have thrown up (like yesterday) and the shakes are still very bad. BLAH these shakes are starting to interfere a bit, and I just want them to go away which my doctor said they probably wouldn't. But I keep trying to remind myself it is better than not being able to breathe. I have been keeping up on them all and while I am getting ready for my bronch I actually had to add a new injection for a week or so, but at least this one will go away soon.
Laila has a cold, a pretty nasty one and it has me scared. I can't catch it, like really I can't because I don't want anything to happen to these brand new puppies I got 2 months ago. They need to stay strong while they are getting stronger. So as if this household wasn't obsessed with hand washing and sanitizer as it was....now Laila is even more so now. She put on her sanitizer cocktail and even does her whole arm and sometimes even her legs. It may be awful but I don't stop her from doing so. And today I am going to wear a duck mask around my own house. BOO...breathing paper in the comfort of your own home equals NO COMFORT! But it is better than her having to wear one or the alternative of catching this bug.
We bought a treadmill that I can continue my workouts at home so those lungs can expand more and more. And even if its only for short times, when I get done walking my lungs are always a little better and my chest is expanded. A little pressure off.
I am still trying to gain weight, and its not that easy. I am still down to around 90 lbs and the thought of gaining about 20 lbs seems overwhelming, so in my head I am just breaking it up to goals of 5 lbs. A ton less scary then a big number. My body looks so deformed when I see it in a mirror. Thats not the shape I remember seeing.
Sometimes things just get all jumbled in my head and create this ultra emotion and anxiety sets in. I get a little crazy and just need my 10 minutes to cry it out. Breathing is the best, don't get me wrong. But everything catches me and I get nervous, I wonder a lot, I cry, I breathe, and I try and go on with my day. Its a learning curve that in a few months when all this pain goes away, my lungs are pretty healed, my body has weight, I can carry my daughter, my life gets back to a normal...then my brain will start to relax. Time. It will take time. Please just everyone be patient with me while I go through this little process. I am not leaving my house often and when I do, its never alone yet...anxiety gets me. I am trying to continue to be me and to be as strong as I can be. But as you can assume, sometimes its just a lot to grasp and hold onto. Remember it takes time.
I took a break in order to concentrate on my new life and to enjoy the Christmas and holiday season, sorry for those who look here to get all the new info!
First I will get it out of the way and tell you all that my lungs are still the talk of the town around here. They are still shiny new and healing well. I had a doctors appointment on the 30th and everything went very well. They changed my insulin dosage so I don't have to take quite as much (not trying to get my hopes up that this will all go away when my medicine get lowered...but they all seem to think so.) I now have a case of the shakes....and they can get pretty bad to the point that y fingers don't work as I want them to (as a matter of fact thats how they are right now and I am getting pretty upset about it....STOP SHAKING BODY!) I gained 1 lb, and am happy its at least going in the right direction. My lung function in now 70% and I am so thrilled with that.
I honestly can't remember the last time I was at a 70%. Back in 2006 I was in the 50s, so its been so long since I was able to breathe like this. I still have bad days when my body just isn't handling everything like the meds as well as I want them to, but its funny because my mom asked the other day, "what doesn't feel good?" and my answer shocked me..."everything BUT my lungs." HAHA! When is the last time my lungs felt good and my body was what was yucky? Like never...
Christmas was wonderful this year. I got new lungs, got to go home to Michgan, got to surprise Laila (the video of us surprising Laila in on FB...check it out and like TEAM CASSIE while you are at it https://www.facebook.com/TeamCassie) and just got to have a great time
Laila was so excited that it still brings tears to my eyes to see her little face light up. She had been asking me for awhile when I was going to go to MI and I was starting to feel very sad and like a not so good Mom...even if I knew what we had done was the right thing. Needless to say, the girl hasn't left my side since and I am loving every second of it. She asks a lot of questions about my new lungs, the hospital, my medicine...she is very curious and concerned. I love that little lady.
Sorry for the short blog but my girl wants me to go play and now that I am done with my night time meds, I am able to....and I am still in the "she can have whatever she wants" mode.
I hope you all had a Merry Christmas and Happy New Year. I know we did!
It has been a month (and 1 day) since I got my new bling. And this morning it REALLY hit me. I am able to live now. I am able to have a new life. I can breathe, I can walk, I can live.
I had another doctors appointment on Monday and everything is still going so well. They are still amazed at what I have been able to do. They say I look amazing. They say my lungs look amazing, as a matter of fact all the extra air that surrounded them is now gone. I got all my staples and stitches out now (besides the ones that dissolve...it should take about 2 or 3 months to fully heal.)
My lung function went up 1% HAHA but hey its going the right direction! But the cool thing was when they measure the air I could force out between a certain area, pre transplant I was at 7%...yes that is a 7...and on Monday I was at a 102%!! Imagine that difference, feels amazing. It is also crazy how I can blow out air for more than 10 seconds and am still not entirely out. Before if I could do that for 5 seconds it was a good day and that would still include a minute to catch my breathe. I didn't realize how cruddy my lungs were until now...breathing is a fun thing. It never gets old seeing my oxygen at 99 or 100% either. Still makes me very teary eyed. I can breathe!
Now BLAH I have to gain lots of weight...and good weight. I now only weigh 89.9 lbs and probably look like a skeleton. Eating is getting easier and things are starting to taste normal again so no worries right now, I am getting there. I am going to throw this out there though...I KNOW I AM TOO SKINNY. I KNOW I NEED TO EAT. I KNOW THIS ALL SO PLEASE WHEN YOU SEE ME, I DON'T NEED TO BE REMINDED. All it really does is hurt my feeling a little bit. I eat what I can and am trying to learn a new life style. I will get there so you all need to be as patient as I should be :)
I started Pulm Rehab this week and eeps I have no muscle. I am like a little toddler who just learned how to walk again. Walking up and down stairs is pretty pathetic right now...but funny to watch. Again, I am getting there. Just need to take it a bit slow and really just pace myself.
My medicine is still a little crazy and still adjusting, which makes for a pretty messed up body. I shake now and always have a bad taste in my mouth. But I can breathe. I am looking forward to when things start to become normal and when things can stay the same for awhile. My body really just wants to adjust to all this but doesn't know how. I try and tell myself this was a pretty big surgery and its only been a month...but that whole healthy girl inside really wants to bust out!!!
Jeremy is doing really well, and has had 1 afternoon and 1 evening off of Cassie duty (thanks Ape and Connie for taking me out...) and enjoyed time to relax and not have to worry about anything but taking care of himself. This made me pretty happy to know he got some him time (he gets more tomorrow because I am getting my nails done for Christmas WOO HOO!) He has been so good throughout this whole thing. Amazing!
Laila is still doing well too. We got to FaceTime her the other day and after 4 weeks I finally got to see her sweet little face. I tell you what, it was the best feeling. That little girl was all smiles and questions. She wanted to show me everything and tell my everything...she was so excited she even told me a present Angie bought me....ooopps!! She is being super spoiled and calls about 4 times a day. Her phrase is, "I'm waiting to long for you to come here..." And all I can do is agree, it seems like its been forever since I have seen or hugged her (great now I am crying...) I just miss her so much. I am trying to remember that this is whats best. I can heal longer, get in a routine, rest, and she can have a wonderful Christmas filled with everything she deserves!! Its just hard when you as a Mom (and Dad) have to miss it.
Still healing and still praying!!!
Today was my first pot transplant doctors appointment and it went so well. I am not used to going into the doctor and getting good news. Guess I am going to have to get used to it!
We had to be in Madison (about 1.5 hours away) by 8 am this morning. But once Jeremy woke me up I had no problem moving and busting a move to make sure I got there. I was pretty excited because I got everything done I needed to do in the morning before I move on with my daily life (temp, blood pressure, meds, nebs, spiro, pep...) and we were out the door. We were a little late because of traffic but psh that was the worst thing that happened all day!
I got my labs drawn and since they had to remove my port I need to get poked with a needle everytime now. They can't use my right arm due to the blood clot so they are very limited in spots to pick from elbow down on my left arm. Needless to say my veins are getting bruised and I have been poked more than once in one sitting and am really starting to hate getting my blood drawn. But I got Michelle, who was a wizard and got an awesome vein right away and I felt NOTHING. A miracle I tell you!
Then off to chest xray, no big deal as long as the picture comes back with everything still in place and doing what it suppose to do. And of course, no junk in the shiny new gift. And since I can still feel a rattle I was worried that maybe there would be too much fluid and I may need an extra chest tube to drain it. But the good news is that it came back and everything looks beautiful, my donors lung, MY LUNGS, are beautiful. A way I have never heard the things in my body that are suppose to bring air in and out called, but now the lungs that sit there are BEAUTIFUL.
My PFTS were great too. As you can see by the picture they are already at a 53% and thats not even the full shebang yet! I have to admit when I blew that 53 I began to cry because I was jut so overwhelmed with joy. A little over 3 weeks ago I was lucky to hit in the 20s, and now on a day that my lungs are still learning how to work, I can blow a 53%. A 53 PERCENT!!!!!! Ahhhh! Crazy awesome.
The 6 minute walk was just as wonderful. I started off with my oxygen at a 100% and walked the 6 minutes with a 100% the entire time and finished with a rest result of, yeap you guessed it, a 100%!! YOU CAN"T GET BETTER THAN 100%!
I saw my PA, my new DR, and my coordinator and each said I was doing unbelievable. That I looked amazing, sounded amazing, numbers for everything was AMAZING! A girl could get used to hearing that about her new gift, they are AMAZING. And if all that good news wasn't enough...I got my stitches from my chest tubes removed AND half my staples (I had a total of 58!) It just means I am healing well, and my site looks amazing. They are thinking of taking the rest of the staples out next week, which would mean the stitches left over would jut need to dissolve. YEAH WOO!
My skin is still very sensitive, but Tiffany jut reassured me its because all the nerves that got cut and hacked are starting to grow back making it uber sensitive. And thank to my Mom and her sensitive skin, it also mean I have to watch what I wear...my shirt yesterday burned on my skin, especially where the seams where. So I pretty much live in the same shirt or the same blanket everyday. I am also on some anxiety medication now, because I can't sleep too well and then my brain starts to race. But it will all be worth it...because I can breathe in clean fresh air.
One smiley transplant patient tonight!
Woo Hoo!!
We got to come home!
We have been home since Friday night and boy does it feel good. Surreal, but good. The very hard part is over and we are home to start the next chapter in the long book of transplant living. My own bed and blankets felt so good last night. I have crashed like 4 times today because I was so relaxed and happy to be home.
The first full day was a success! Now we just have to organize my life a little bit and set up a "transplant" section in our house and we will be all set. I guess Target is calling my name...better answer (who could stay away from Target!) Thanks to my family and Jeremy's (Beth and April too) for cleaning our house and getting things ready for us while we were in the joint. It was beyond nice to come back to a clean house and painted room. It was a huge weight off the ol' shoulders to come in to all that.
It has been nice to eat when and what I want (for the most part since I have to watch my sugars!) and to rest, walk, talk, really WHATEVER I want to do when I want to. I even got to shower in my own shower and the best was worshiping at church tonight! It was great being back!!
There was much to come home to! The mail had been piling up and we have had such a good time going through all the well wish cards as well as the start of the Christmas ones too. It was also fun to come home and get a present from Jeremy...look at that shirt, pretty sure I am going to rock that one quite a bit!
So for the next few weeks I am ordered to walk, sleep and eat. Literally, that is what the Drs ordered. Therefore that is what I will be doing....that and going to all my Dr appointments in the next couple weeks.
I love to be able to cross this number off my list: #88. Get out of the hospital after the transplant
