Tuesday, February 25, 2014
My Old Lungs, fresh out of my body! Thanks for working as hard and as long as you did, now your work is done and you can breathe easily!
I guess it is time to write down the little I remember from this huge experience. And seeing as I am going on night number 4 with no sleep I feel it is the perfect time. You will have to be warned now that there will be HUGE holes in this story. I lost a huge chunk of time and the things after surgery while on all the meds that I still am hearing new things I did every week.
It was about 4:30 On Sunday November 17th. I was pretty tired that , had just woke up from a nap and was on the computer, dreading the thought of getting ready to go get something to eat (I was feeling too sorry for myself to cook or clean...so it was such an easy option.) My phone lite up and I ignored it for a second, knowing Mom could wait another ring while I pinned this awesome thing on Pinterest. HAHA joke was on me, it wasn't Mom...my phone said that magic word, LUNGS!!! What came out of my mouth next was for sure not the nicest thing, out of excitement I got a little sailor like and then answered my phone (to be fair it was my only huge freak out moment for the next 24 hours.)
The voice on the other end was my coordinator, and she had some great news. Lungs that were a match were mine if everything went well. With a huge smile and a ton of excited fear, I said YES and got my instructions. We again needed to be there pretty quickly.
I called my family to let them all know that another set of lungs were potentially mine again. They were all excited and had that same fear in them as well. How could you not? They told me the plan was from Dad and my Aunt to leave early in the morning and come to Hartford first, make sure Laila was set, and Dad would come out to Madison to be there with me...ok so I wouldn't know he was there. Maybe it was for more him and Jeremy at that point! Mom and Angie would catch a flight later that day. You see, the night before Mom had a weird dizzy spell, fell and literally cracked her teeth out of her head. We were all very worried and she needed to make sure everything was ok with her before she could come. Thank goodness everything was ok (she is still bruised and working on the big fix 3 months later!)
Now the hard part, telling Laila and trying to explain it while saying "see you later"...I realize through all this that I don't say bye to anyone. I have never been good at byes, but this one was one I could fathom. It wouldn't be a bye but a see you later. She was excited, sad and not real sure how to feel until I told her that I could run around with her this summer and push her on the swings...she wanted me to hurry up and leave after that. So we called our loving neighbors who without a second thought took her, made sure she was happy, slept well and headed off the school the next day. Laila told everyone....yes everyone that Mom was getting new lungs. She told everyone at school with a fist pump, she told the cashier at that outlet store, she even told Santa Clause! Like I said, she was pretty excited!
I stayed very calm, and just kind of got ready. Packed a few more things, washed my face and brushed my teeth again, threw on a CF sweatshirt, and said a prayer (over and over again) while I was hooked up to my nightly antibiotic. Jeremy got home, we stood there for a minute, he packed the car, I sent out a few more texts, and we jumped in the car and headed off to get me some new lungs!
The car ride was much calmer this time, seeing as social media blew up we were very thrilled to see all the love and support from all of you. We were getting messages (100s of them), emails, texts, phone calls, Fb notifications...you name it we were getting it. It was very nice and overwhelming to see all the out-pour. Thanks!
We got there around 6:30 and there was no wait before prep. They were all looking at about 11-12 o'clock surgery! WOW, huh, that early? remembered from my dry run, meds, blood work, xray, shower, praying, all that. I thank the Lord I was so calm this time, I even got a nap in. Well, 11, 12, 1 passed by and there was still no word. They finally came back and said they were waiting for an operating room. They ended taking me down to the holding area where Jer and I were honestly the only 2 there with one dim light above us. We stayed there until about 7 am when they came to get me ready. November 18th, at about 7 am I said see you to Jeremy, texted my family 1 more I love you and I was off to the operating room.
This is where my story gets very fuzzy. Very fuzzy. My memory was so messed up that I couldn't remember the code to get into the house...and I am the only one who at the time knew it. (not smart by the way!)
The room was cold, and after I slowly made my way on the very thin table, they wrapped me in very warm blankets, I said hi to the surgeon, got juiced up, started cracking jokes again, watched the lights get blurry and then....
It was who knows how long. I don't remember waking up. I remember some people there, but I couldn't see a face my vision was that blurry. Its a good thing I knew voices. Much like last time I will write a few things I do remember:
Angies hair was in a bun.
Worried about my moms teeth.
Wanting the breathing tube out...and out NOW.
Sitting in a chair, passing out every 3 minutes.
Talking for the first time.
Wondering where Jeremy was sleeping.
Having to pee. (even though I was already...)
My dad wanting to go for a walk with my so badly, and then getting to.
How big my arm was getting and them telling me I needed my port out.
My mom spending the night and I drove her crazy. CRAZY! But she handled me well.
My Aunt Diane coming up and Angie staying in Hartford.
Saying see you to all of them and letting them know I was fine.
Seeing all the tubes coming out of my body, and being in a good amount of pain.
....That is the first 48 hours or so.
My vision started to slowly come back over the next week or so. And everytime I took a walk I would get stronger and didn't need assistance from anything other than someone putting all my chest tube boxes on my pole. It was a great day when Dean my PA came in a pulled that last one. He was a little angle and in my medicated state I told him so. Thanks Dean! I was learning all my new meds and learning what they were for, how and when to take them, etc. (Insert headache here!)
I had a few visitors while I was in in b4/5, one of my pastors and the principle from school came to have a devotion and the Lord's Supper with me. It was so awesome that they came, I just wish I could have remembered it more. I did my best!
A woman who had a double double-lung transplant (yes there are 2 doubles there) and her mom came to lend a supportive hand. I heard all about both of hers and the little things that went on. At the time I laughed at a few thinking it would never happen to me...not wanting your main support person to leave your side for a long period, being nervous to fall asleep thinking something could happen, hallucinations. Well, I ended up with all of them. Jeremy knew everything and I didn't he knew how to take care of me and what to do, I didn't, Luckily he got to work from home once we ended back her. The sleeping thing was very weird. Yeap, everytime I fell asleep I would be scared. I thought I was breathing while I was sleeping. I had nightmares of asthma attacks and even woke Jeremy up questioning if my lungs were working and panicking....you need lungs o work in order to live. I knew this by now. The hallucinations weren't so bad...funny really. I saw Disney princesses and characters wherever I looked, even in the wood grain on my hospital floor. I also thought I would see things scatter across the floor like someone throw something or dropped something. So what would Jeremy do?! Pretend to throw things. SIGH.
My in-laws came and helped us celebrate Thanksgiving. It may not have been everyone ideal Thanksgiving meal or attire or even venue...but it was right were I was supposed to be. The next 2 nights they would stay late and keep my insomnia brain occupied with cribbage and euchre! It was nice to have a little distraction now and then!
And then there was Tay, who spent a few days (all day) next to me doing nothing but really everything all at the same time. Just having her there was what I needed. As a matter of fact the surgeon was pretty sure she should have been his PA and asked her a few times to interview. Ummm...Tay work in Madison?! I may have pushed this a little too. But she is happy in Ann Arbor so I guess I can't complain! I love you Tay!
My legs blew up about 20 lbs and they hurt so badly I could barley walk let alone wear socks or shoes. As a matter of fact, the first week all I could put on my feet were mens extra large slippers...so whenever I would go out that it what I would wear. Shopping, church, doctors...you name it I wore them.
It took 2 weeks and a ton of work in the hospital, thats it, just 2 weeks after my life changing operation. I was out and starting to live a post transplant life. I am still in awe of this entire thing. It was painful. It took a ton out of me (and still does) physically and mentally. Transplants are such an amazing and awesome thing that turns your world completely around. You start new while trying to keep the old you together there too. I am grateful for what happened to me and that I was able to bounce back as well as I have. I do have a mild case of rejection right now and still have rsv...but the meds and prayers are both flowing. The doctor said it was pretty normal for this to happen in the first 6 months. Yes, I am still taking this beyond serious, but my nerves are trying to stay as calm as my brain will let them. I want to keep this bling!
I know that my story doesn't make much sense, and there are so many holes that need to be filled in. Heck, maybe Jeremy should write and entry so you can get his take. I do remember things more and more, and if Jer does ask me things then it all comes back to me. So if you want to know something from either of us about anything related to this, don't hesitate to ask. We love to share this story and hope that it may just get a few of you to sign that donor line on your drivers license. You really should consider it and talk to your family members too. Not everyone gets the chance to live long enough to get there organs, but you could save someone elses life!
This is my story...x2!
Tuesday, February 18, 2014
Wow! It is 3 months to the day that I had my transplant. And it took all 3 months to finally feel semi human again! My shakes are still bad, still working with my diabetes, blood thinner, and insomnia...but the rest is turning out better than I could ask for.
To celebrate three months out, I got to go to a clinic appointment. It was the first time in YEARS that I wasn't nervous at all to go. I trusted that I was going to do some amazing things. My chest XRAY turned out great. As a matter of fact you can see it up there on the left, the one on the right was right before transplant. Big difference?...I'd say so. I still have a small spot of the left side of the picture from the infection that I am fighting off (with the help of good ol' meds) but it shrank a huge amount in the last 2 weeks, no worries there. Just keeping an eye on it. You can also see my port in the picture on the right.
My 6 minute walk improved and again I stayed at 100% the whole time, isn't that an amazing number to see?! I think so. But speaking of numbers...I blew my pft and it was a 97%
Let me type that again because I can't believe it either...
I am so teary eyed just looking at that number, its amazing. If I could hug my lungs and my donor family right now I for sure would. My breathing is out of control good, and thats still with that little spot on my lung. Amazing. Just amazing. I honestly don't know the last time I felt this good. Maybe grade school? I am, for now, what I wanted to be...a healthy girl in a semi-healthy girls body. Happy tears.
Now to all the little things we talked to the doctor about:
One of my levels for an anti-rejection medicine is way off....way too low. So he upped my prednisone by quite a bit for the next 2 weeks, and said my sugars will be a little crazy again. BOO. I was really hoping my sugars were going to go back to semi normal, although I am getting used to weird sugars and just eating and covering (or correcting) it still isn't fun. But anyways...the level....they are going to work on that. Double check it tomorrow to make sure it wasnt the test that got messed up a bit (I have a bronc in the morning. Prayers again please.) But this is something we can fix.
I can now pick up Laila. So who is more excited, me or the little one?! I am pretty sure as excited as I am...Laila takes the cake. When the doctor gave me the ok today she gasped and ran over, "Lets practice!! Mom, stand up and pick me up!!" And then when I did pick her up she said while giving me a huge hug, "Mom, I missed you!" Pull on the heart strings for sure. I get my girl back all the way!!
Now for my challenge: I got the OK to get my GTube pulled in a few weeks until Dr. S talked to my PA and she said she didn't like that thought. SIGH. Then the discussion/argument (...a nice argument) started. (insert time laps of about 20 minutes for the discussion here) To which the results were what neither of us really wanted, but a good compromise. If, no I will re-phrase that, WHEN I gain 6 pounds she will give me the thumbs up and I can have it removed. And in the mean time I should be having a chocolate shake a day (not even kidding here.) CHALLENGE ACCEPTED!!
It was a great way to celebrate 3 months out. I thank the Lord for this wonderful gift every day. I can now start living again!!
Thursday, January 30, 2014
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%.
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.
Monday, January 27, 2014
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!
Monday, January 13, 2014
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.
Wednesday, January 1, 2014
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!
Thursday, December 19, 2013
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!!!