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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
This is just a small little post to make it an official cross off on the 100 things list! I did it. I crossed off one of the most important things on that ever shrinking list!! And in order to do so (since I am not quite ready to write my story...) I am going to share a few pictures from my adventures.
This is a picture of me as soon as we got into the car on Sunday about 5:15. Phone in hand letting everyone know it was another GO. Hooked up to the current antibiotics that I was doing. I think you can tell that I was excited and scared and just not real sure. We were sitting at home thinking of where to go to dinner (because I didn't feel well enough to cook or clean after!) It was a relaxing day...well, WAS a relaxing day!
Here I am after my last shower for the next 2 weeks. I had to use special soap on my chest. I gave it one more good scrub and kissed my skin goodbye. I was waiting for my NA to come braid my hair so it would be out of my face post transplant. My nurse Kyle told me that was such a girl thing to do. HA I just thought it was smart...and I stand by that!!!
Here I am coming back from the 2nd time in the OR (yeap you read that right...I went back in to get reopened...) I am till hooked up to lots of wires and tubes and had no clue what was going on!! Jeremy told me I looked at ease. Thanks to the vent for helping my new lungs get a kick start...but my little body would be able to work them on my own soon. LOOK AT ALL THOSE WIRES AND TUBES...you can't even seen them all!
Up and walking! They got me and my IVs and 5 chest tubes, packed me up and sent me on a walk. Luckily I had some good support from the wheelchair, my goofy dad, mom ad aunt. They look pretty good in yellow don't they?! I walked at least 4 times a day while I was in...and every one felt better and was easier!
Thumbs up for getting the big IV line in my neck out! Another thing gone...more freedom! I got a blood in my arm so they wanted everything near the clot out. It felt good to have it out though. (You can tell I am a super fruit loop in this picture!)
HAPPY THANKSGIVING! This may not have been the meal people dream of, but to me it was a dream come true! My in-laws came and eat our "hospital thanksgiving" meal together. Turkey, mashed potato, gravy, pumpkin pie. It wasn't bad!! I got dressed up that day with a gown that was given to me in memory of another Cyster. I even fixed my hair and everything. It must have been a holiday!
I AM TUBE FREE! I just had all my chest tubes removed and was the first time I was able to unhook from my iv. I took advantage of it and went for a walk all by myself (until Jeremy found me!) I was starting to feel like a person again (at least a little bit.) I am rocking my MTJM sweatshirt and the pretty slippers Angie bought me. Remember, if I am gonna look bad, I am not gonna look bad. (I will have more pics of my hospital gowns soon...)
The night before we got to bust out of B4/5. I had to wait at least 48 hours after my lat chest tube was taken out to shower or consider leaving. So my in-laws pent the night in Madison and played games with us all night. The girls rocked and we won a bunch (hence the point to the cribbage board score.)
These are the pictures I had so far to show a bit of my journey. Just a little glimpse of the 2 weeks we lived in B4/564 in order to cross off #50. Get a lung transplant!
It has been nice to be outside of the hospital and into hotel living. No surprise, but they were right when they said that life would start out rocky and be consumed by transplant things at first. Take meds, eat, rest, control pain, repeat. May not sound that big of a deal, but when you are on a schedule and need things done 4 times a day....it seems like thats all you do. Luckily, cell phones come with alarms and I have Jeremy to help with everything.
Things that I know soon enough will only take my 30 minutes in the morning and at night time take me about an hour now because I am so new and uncertain about each step. I can't wait til I can do everything like a boss again. I have gained so many new medications the last 2 weeks that it can seem a little intense...I just have to get used to do all this because I am healthy versus all the old things because I am sick. So what if I have to swallow 8 hand fulls off pills a day..they are going to keep me alive and breathing.
Pain and anxiety come and go. It is crazy...things like my long hair touching the skin on my back can make me cringe. My back freaks out, my legs are swollen and sore, the fog the oxy leaves me in isn't fun. But again, luckily I have Jeremy to help with so much of all that...and hasn't complained once. He for sure has had a ton he could too...heck, I peed on the poor guy. What a rock!
Breathing: this subject will change over time...as I learn how to breathe and cough and use all the bling these lung have. I am asked often what it feels like, all I can really say is CRAZY! Clean air goes in and even though it may not be deep yet and I still have junk to clean out of the lungs, the air I do have is just so easily placed all over. I am not out of breathe when I walk, as a matter of fact I did my 6 minute walk and did nothing less than a 98% on oxygen...and that was me walking by myself on my own 2 feet as quick as my chubby weak little legs would let me. I can do things without having to rest for more oxygen or because I need to catch my breathe or cough. That is just crazy. I am VERY weepy when I talk about the breathing part. Especially because I know it will only get better!
Blood sugar and insulin on the other hand have me working hard. I am not a good carb counter I guess, but will for sure get better at it and the more I get used to it the more I will eat etc. I am not used to and do not like the fact that I can't jut eat a little here or there or whatever. This is something I know will just take me some time. I can do this. I can do this. I can do this.
I am bruised up pretty badly and they are so nasty thanks to the blood thinner, but I am hoping this will only be for a few months and that all can get back to more of a normal thing. My clam incision looks really clean, sore, but clean. And the "holes" from the chest tubes are the same way. When I get a glimpse of it in the mirror it actually makes me a little woozy! EESH! I think just because it is on my body, but ouch and ick. I for sure can't wait until that is all healed.
I keep getting excited because I DID IT. I got my transplant and the surgery and hospital stay are over. The worst physical part is coming to a slow down...but now comes all the mental parts. It is a good thing I got new lungs because I know I am going to need to do some deep breathing on this one. Dear Lord, again wrap me in your arms and carry me to a state of constant sanity.
Here is to day 2 of a free transplant patient over. I will mark it as a success!!
So this is what breathing feels like.
New lungs. My new lungs. My shiny, blinged out, healthy, perfect NEW lungs.
I have so much to be thankful for this season. I have a new life to be thankful for. And even though at the moment I am still in this hard journey, and its quite the fight, I am thankful that I have this fight to do now. I have this beautiful gift, somebody else gave me a chance to be a mom, wife, daughter, sister, etc. again. I have a donor family that no matter if I ever hear from them or not, they are a part of my family. I literally carry there loved one next to my heart everyday. They gave me this new fresh air and lease on what I know will be a fabulous life.
Sorry it has been so log since I blogged, I am sure you can imagine between the emotions, drugs, and all that I have to do to stay fit in here...the time just hasn't been there. (Although I feel a few would have liked it a little more if I would have updated when I was a super fruit-loopy.) I thought that my dry run was an awesome story, but this one is a true fairy tale. I have found my fairy tale. The days have been filled with tears, laughs, food, insulin, trying to cough, chest tubes, fat legs, blood cots, walks and yes even a nail polish change. I will make sure I write down my story in the next week (with Jeremys help...I missed a good 36 hours in there someplace.) but for now I wanted to say how lucky and loved I feel. It is very overwhelming. It was so awesome to call back to Michigan on Thanksgiving to hear everyone with such a happy heart, it got me so choked up that I couldn't talk anymore.
I do feel like a minor pin cushion and get excited the more and more that things come off and out of my body. If you have never had chest tubes, please say a little prayer of thanksgiving right now. They don't just hurt your chest, they hurt your body. But as of this afternoon I am chest tube free. Which also means in 48 hours I can take my first shower since that Sunday night...as I am sure you can assume, it is well over due. Just another memory to write down...sponge baths. Never again. I will never complain about wanting or needing or being able to be clean again. I for sure went into this with the thoughts of..if you are gonna look bad you arent gonna look bad. So Thanks to Aunt Gwynn I have beautiful gowns. And thanks to a wonderful friend through Team Cassie I had a very special one I wore on Thanksgiving in memory of another Cyster gone too soon. My nails are done, my slippers are cute, my hair is rocking a headband, and my cheeks have tons of color in them now. I am a brand new girl.
I gained 20lbs in water weight, but carry nothing above the thighs...you can imagine 20 lb legs and feet, right? One day I will for sure laugh at the little sausages on the ends of my feet. My arm is finally down from the blood clot swelling. I have no more heart monitor. 1 PICC. 0 tubes. The list could go on. This warrior is fighting strong and I am no question about it...through all this pain/hassle/blah, I would sign up and do it all over again. There are a few things that will forever stick out in my memory bank...1 being Laila telling the cashier at the store that I got new lungs. My baby is so excited for me (and herself!) that listening to her happiness was well worth the things I will miss while staying strong in the beginning of this battle.
I want to once again send my thanks for everything you all have done for me and my family. For the thoughts, kind words, donations, prayers, cards, whatever it was...we thank you and appreciate it. We thank our donor and family of course too. Without them, we wouldn't have had this awesome reason to celebrate. I am sure there emotions are still running just as high as our are, just in a totally different way.
Now it is time to go strengthen my new gift....my lungs! I remembering how to breathe!!
This is what I think my new lungs will look like!!!!
As most of you know by now...I GOT MY CALL! I am currently sitting in Madison hooked up to a few machines just waiting for an operating room to open up. This seems to be a forever wait.
We got the call about 4:30 and I saw that special word and just looked at Jeremy and said something that I can't believe I said. HAHA...oops. But Kelly my coordinator was on the other end just waiting to give me the good news. And boy was it good news, I had a set of lungs and they weren't even high risk.
I said my goodbyes to Laila (again this is something you can NOT be ready for...still not sure I was/am ready for it.) But she was such an amazing girl full of smiles and running around the house saying I was getting new lungs and was going to be able to run with her. Sweet cheeks, I sure hope you are right.
I am calm. I am scared. I am excited. I cry. I am hungry and thirsty. I am anxious. I am impatient. I am tired. I am overwhelmed with love. I am overwhelmed with thinking if this is real life. I am obviously so many things all wrapped into one.
For those people who have asked YES my nails were polished, but I took them off once I got here so they could monitor me better. But my toes still aren't painted, so on the way out the door I said WAIT and went back to grab a bottle of polish so I could get them done this week. But maybe will have Jeremy bring me a happier color...I wasn't thinking how sad the color I brought was!
I didn't cry much on the way up here this time, and really I can say that for some reason I have stayed rather calm this whole time. Granted, yes, my emotions come in full force and I let it out in a cry and an apology to Jeremy. But I pray, I look at my Breathe Smile Breathe bracelet, and I remember why the heck I am here...to gain a new life.
We are long at another 3 hour wait and I have already slept for an hour, that should tell you either how calm I am or how exhausted I am. I got a small nap in today. But sadly I didn't eat much and was about to get ready to go out to eat when m y phone rang. So I am hungry and very thirsty and a big glass of cool apple juice sounds so wonderful. I know exactly what my first wish will be for when I wake up and can drink something.
Jeremy and I have talked about all the little miracles that have happened this past week that was just perfect for a set up for the day (minus your ouchie MOM!) and thank the Lord that things are working out so far. Lets just hope this time when I wake up from the meds there will be new shiny lungs in me and a thumbs up from Jeremy and my Dad. I have already started a nice list of all the good coming from this...you know because a new life with new lungs isn't enough HAHA. But here are some good things I came up with: I will get to drink 2% milk now, I will get my GTube out soon, I will get to go back to MI to see family more often, I will be feeling pretty good for Christmas, I will push Laila on the swing, I will get to walk the Great Strides this May. These are just a few guys!!
I am also thinking about as happy as my friends and family are, somebody elses family and friends are mourning right now. They lost a loved one. They are overwhelmed and have mixed emotions for a totally different reason then we do. Please keep them in your prayers too. And thank God that a family gave such a precious gift to me and others.
Thank you all for the TONS of support I have had already on FB and texts these past few hours. I do plan on writing back and I want to thank all you personally, but right now the emotions have me and I can't sort fast enough. Hope you all understand! Next time I write I will hopefully, God willingly, have these new set of perfect lungs that will easily be able to push air in and out with no real effort.
I am now going to relax and try to get another round of some sleep.
My biggest battle is about to begin.
Dear Lord, please wrap me in your arms.
