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!!