God is in control. Patience. Faith. Unconditional love. Answered prayers. Miracles.

The last few days have been great. I've felt pretty good considering. I am still having the fullness/numbness/swolleness feeling in my chest from the surgery/transplant. My vision is also still messed up which is still throwing me off some. Really though, other then that, I can't complain.

I can't even begin to tell you how God has been a large part of my life over the past few years. I'm not one to be preachy and if you don't want to read further, that is your choice. I just wanted to share a few things about what He has done to change me. :)

I grew up going to Sunday school and church every Sunday at Faith UM in Arcanum. For the most part I enjoyed going to church. I guess for me it was "just ok". I never really had a connection with God though. I believed in Him and His Son, but I didn't have the connection that so many people said that they had. Doug and I met and got married. Doug was brought up in the Catholic church and we had decided to raise any of our children as Catholics. Our wedding was beautiful and that day definitely was the best day of my entire life. I remember telling Doug that night as we danced that I didn't ever want the night to end. Of course, it did! :) We had an outside wedding at The Willow Tree Inn in Tipp City and it was a beautiful day. Our minister (from my church) even said what a beautiful day it was at the beginning of the ceremony, and the way he said it Doug and I will never forget. "Today is a B-E-A-U-ti-ful day!" It made us smile. Time went on and while we sent the kids to Catholic religion classes we rarely went to church ourselves. I, for one, didn't feel comfortable there because I wasn't raised as a Catholic. The only times we went were for baptisms, weddings, and funerals. We didn't even go during the holidays. I would say that I was starting to become ashamed of not going to church. Our kids were even asking why we (as a family) never went to church. It wasn't until Cameron's First Communion in May 2011 that finally had turned it around for me and for us. All of the other First Communicants had their pew full of family....parents, siblings, godparents, grandparents. Our pew just contained Doug, myself, Austin, Alexa and of course Cameron. I don't think it was really the fact that no one else was there, but there was just a sense of us not really belonging that hit me. I recall looking up at the cross during the service and asking over and over again "Why are we here? What are we doing?" I talked to Doug about it later and he admitted to having very similar thoughts and feelings. We talked about checking out some other churches just to see.

A friend of mine from school, Kristi, told me about the church she went to and invited Doug and I to come to a service. I told her that sounded great and we definitely would. It was a few months though before we went. With Doug's work schedule working every other weekend and with him working nights was a little hard to get him to go and check it out. September 11 though,Versailles Christian Church had a service that invited the local law and fire to their church to honor them. Doug went with the fire department (although, could've worn his sheriff deputy uniform too!):) and the kids and I also went. The church was so warm and inviting not just church wise, but people wise!  We went in and were immediately greeted by so many. It was so nice to feel so at home in a place you just walked into! The service was great, the message delivered by Pastor Wheeler was even better. We started attending regularly from then on. Doug, the kids, and I all enjoyed it. Most of all, I felt a strong connection that I knew could only come from God himself.

At the time we started to attend, I noticed a difference in the way I acted and felt right away. I also feel that it was at this time that "the lessons" started. The messages from Pastor Wheeler always seemed to hit home with me, and I found that if I missed a service due to being sick I was very bummed. I remember worrying so much in the beginning about money and not working anymore and how we were ever going to afford all of my medical bills, my transplant, things for the kids, our bills, etc. It was so overwhelming. But I turned it over to God. The first lesson I learned was that He is in control. I remember hearing this time and again but I found out for myself that it was true. I gave my worries to Him and He took care of it. He took care of us.

As the months passed on and I became sicker I was growing impatient. I was supposed to be up for transplant listing at the end of November 2011. When November's appointments with Cleveland came and went and they kept "putting me off" (or so I thought) I grew angry. I was sick! I wasn't getting better! All I wanted to do was get my new lungs so I could breathe and do the things I used to be able to do...and more! It wasn't that easy though. My coordinator at the time told me that I needed to keep what God gave me for as long as I can. It was during this time that I learned probably one of the best lessons, which was patience. I had to be patient. As hard as it was to function day to day, heck, sometimes hour to hour....I had to have patience. God's perfect timing. God is in control. He's got my back! ;) This was a very hard lesson. I think it was probably also the very longest lesson too. :) Once I had finally gotten listed in June, it was hard to have patience as I waited for "the call". It was hard to go to bed at night...sure that the phone would likely ring in the middle of the night. It was easier to just stay up, believing that the phone would ring any minute. It was hard to get through the day thinking that any minute the phone would ring and we would head to Cleveland. Instead, "the call" actually comes when you least expect it!

God does answer prayers and God does perform miracles. If you are a skeptic, then you haven't witnessed it firsthand. For that I am sorry and hope that maybe someday you can witness it for yourself. In reference to God answering prayers, I should say that He answers prayers though sometimes the answer to the prayer wasn't exactly what you were hoping it to be. Kind of like Garth Brooks' song, "Unanswered Prayers"..."Some of God's greatest gifts are unanswered prayers". You may be praying for one thing, but God gives you something else instead. I know that while I was praying for a set of lungs, someone else has been praying that their loved one would not die. So my prayer was answered, but someone else's was not. This does make me sad, of course it does. I still feel such sorrow at the loss my donor's family had to go through. I hope that they are able to find peace knowing that their loved one was a true hero. Their loved one saved so many lives with their own. Just like Jesus did for us on the cross.

Getting back to miracles though. God performed one for me. Everything lined up right...I was listed on Austin's 15th birthday (good sign) and just 2 days later, Doug broke his hand which had him off of work for at least 6 weeks. The weeks started to tick by though and I was getting a bit impatient that I still hadn't gotten "the call". But July 17, just a little more then a month from being listed, I got that call at 7:30 in the morning. I was told that the donor was a young woman and that she had been exposed to Hepatitis B. I had the option of declining the lungs because of this. (I would otherwise have no choice) Since I was AB+, I wasn't sure when another donor of the same blood type and body size would become available. My doctor told me that the donor was immune to Hep B, and even if I would get Hep B it was easily treatable and something they weren't too concerned with. I had my reservations, but I wasn't sure when another opportunity would come again. Doug and I briefly talked about it and decided that since the donor was young, that would be in my favor so I said I would take them. I was told to get to the hospital by 11, or 12 that morning. Doug and I packed up and scooted out and arrived right at noon. I actually thought that the wait wasn't that horrible. I thought it actually went pretty quickly. I was keeping myself pre-occupied and tried not to think about everything that was about to happen. I was supposed to be going into surgery about 10 that night, yet we heard that there was an issue, or a hold up at the donor's hospital. Apparently there was no one available to take the kidneys, so they were trying to find someone. We found out that our church was putting a prayer service together for me for around 10:00 that evening as they thought I was going to be in surgery at that time. I also found out that facebook was just blowing up with pictures of butterflies filling my newsfeed. My friends and family were changing their profile pictures to a butterfly letting me know they were thinking of me.

So around 10 pm, there were people from the church that was holding a prayer service. I knew others were praying for me at this time. In fact, I could feel the prayers all day long. I felt an overwhelming sense of peace this whole time. God is in control. A little before 10, the nurse said my doctor would be calling. I asked if surgery was still a go and she said she couldn't tell me. She brought the phone into me and told me to pick it up when it rang. A little after 10 pm, the phone rang. It was my doctor on the line and she told me that she had good news and bad news. The bad news was the lungs that she had called about earlier were no good. The team had went in and they didn't meet their expectations so they didn't take them. I would like to say that at hearing this I should've been disappointed. I actually tried to convey this in my response to her. Instead, I knew in my heart (via God) that He had planned something better. All I said was,"Oh, ok." She went on to tell me that the good news was they had another set of lungs available for me. It was almost like I already knew this. She went on to tell me that the lungs looked wonderful. She also told me how very lucky I was. She said that for someone with a common blood type to have gotten 2 offers of lungs within 24 hours is pretty much unheard of. But for me to get 2 offers with AB+ blood type is definitely unheard of. A miracle she said. Surgery at 6:30 am. Yep. I got my miracle. My prayers were answered. The light in my little ICU cubby was a golden light and I felt that power of prayer even greater then before. Gotta have faith. Another lesson learned.

I was wheeled into surgery a little after 6 am. I expected the room to look different somehow. I really wished there was a way Doug could've stayed with me until they knocked me out completely. No such luck. He has been my rock though. I had come to depend on him for a lot, and our relationship has grown a lot stronger over the course of the last few years, but more so over the last 6 months to a year. I don't know what I would do without him...and to know that even seeing me at my worst (and looking my worse, haha!) that he still loves me unconditionally just confirms that I married the right man! He may not show it in public, or when others are around....but he is the kindest, most amazing man that I know. I love him with all of my heart. unconditional love...something else He taught me. :) So my surgeon...great man...always warm, and friendly. He looked down at me and said, "It's a B-E-A-U-tiful day to get some lungs!" I cried out, "Yes it is!" and immediately thought back to the minister that married Doug and I 16 years ago. One of the nurses in there picked up on my anxiousness and stayed with me and talked to me until I was out cold. I will be forever thankful to her...man was I nervous! :) At one point I had asked her where she was from and she said Port Clinton. Which happened to be where one of my uncles had unexpectedly passed a few years ago. So I immediately thought of him and felt like he was there with me. Along with my 2 very strong grandma's...and their entourage of butterflies. :) My grandpa Coning was there too...waiting in the wings...making sure that the surgery was a success. :) I still have kids to raise and a husband to grow old with!

God worked a miracle by getting me to Cleveland with the first set of lungs even though they were no good. I needed to be there and ready because He was still putting the finishing touches on the wings that were truly meant for me. He is in control. Patience. Faith. Unconditional love. Answered prayers. Miracles. I've experienced all of these. Amazing, isn't it? I know there are other lessons I have learned while going on this journey, but these are the biggest and most important for it brought me back to Him.

I started this blog off as Kara the Caterpillar on her journey for new wings. To wrap up in a cocoon, for Him to create the perfect set of wings for me, and then to emerge as a  butterfly. This is exactly the way I feel my life has been from the start of my illness. I was a little caterpillar just crawling along the sidewalk. A little quick at first, but getting slower the sicker I got. Finding my way up the tree to a sturdy branch was hard work. Just like in real life it was hard to find solid ground sometimes. Being sick all of the time just makes it hard to find that sturdy branch that will help support you. Once I had spun my cocoon and was inside waiting for my wings, I learned patience. I didn't know how long I would be in the cocoon. I could be there a week, a month, a year...I just didn't know. Once I got the call, I saw a sliver of light from inside my cocoon. It was hope. Hope that my wings were ready and that I would soon be able to try them out on my own. When I found out that the second set of lungs was a good match for me and I would have surgery within a few hours, the sliver of light grew. Right after surgery I was in a lot of pain and my cocoon helped keep me safe while I tried to recover. The breathing tube was able to come out the next day and the sliver grew more and I felt myself emerge from my cocoon just a tiny bit. I felt a heaviness in my chest, but I was able to breathe! I could feel my wings flutter just a little as they started to come out of the cocoon. The chest tubes came out and with that some relief of that pressure came. I emerged a little more. Going to the step down unit 3 days after surgery I emerged some more. While in the step down unit, I was able to get up and walk around on the floor. Do you see my wings emerging from the cocoon yet? 9 days after surgery, I left the hospital to go to the hotel. I still hadn't emerged from the cocoon fully, but I was test driving my new wings quite a bit. My lung function had improved dramatically and soon I was well enough to go home and recover more there. I am almost totally out of my cocoon, ready to take on the world.

Today I walked to church, about 2 blocks away, and walked up the steps. It was so good to see everyone. They were all so happy to see me (and my family) and it showed. I got many hugs and hand shakes and a few high fives. It felt really good to be back at church and be surrounded by that love. Doug and I had decided to join the church today, so we (kids included) walked up to the front to become members. Pastor Wheeler gave thanks to God for my surgery and my recovery. That I will watch my kids grow up, have grand kids, and grow old with Doug. He also gave thanks to the doctors as well as my donor family. I couldn't have said things any better. I believe that it was at this exact moment that I broke completely free of my cocoon. I'm able to breathe. I'm able spread my wings and fly, thanks be to God and my donor. God is in control. Patience. Faith. Unconditional love. Answered prayers. Miracles.

Homecoming!

As most of you know by now, I was released on Monday to come home! Yay!! Re-reading over my last post I realize that I have some catching up to do. :) Some of you may already know the info if you are on Facebook. I put a lot of things on there because it is quicker.

So the neurosurgeon visit wasn't very informative. We were seen by a "fellow" and then she excused herself to take a page. It took forever (and I use that term lightly, lol!) before she came back in...with another doctor. We didn't learn anymore info then what we previously knew. I had a small stroke that affected my vision, more specifically the upper left quadrant. I am very thankful that the stroke was a small one and also that it only affected a small part of my vision. I have complained about it just because it is more annoying then anything, but I tell myself that it is something minor, and also something hopefully that will eventually come back. They tried to up my lipitor to 20 mg from 10 mg, but my transplant dr's said nope because that dose can interfere with one of my anti-rejection meds. They told me they didn't really need to see me unless something else came back up. I was supposed to go see the eye dr up there on the 24th, but apparently they said I didn't need to go...so it was cancelled. I guess it's just a wait and see game. There's nothing they can do for my eyesight because it is actually my brain that is affecting my eyesight.

I went that Thursday to do my 3 week post op visit that included the usual bloodwork, chest xray, pulmonary function test (my FEV1 and FVC), and see one of the docs. I was also scheduled for a bronch. I was super excited after my lung function test....I went from 73% the previous week, to 80%!!! Just to think that before transplant my lungs were functioning at 16%!!! How amazing is that?? Seeing the doctor, he was pleased with my progress but he also put a damper on it. He told me that one of the blood tests showed I was high in antibodies and that it could be a form of rejection. What?!? He said he wanted to possibly admit me, but he wanted to wait and see what the bronch showed. He said something about admitting me and then waiting for the results on Monday. What?!? so in other words, I would sit and wait ALL weekend in the hospital...just to see the bronch results. I told him I didn't quite understand. I asked why I couldn't just wait at our hotel where we would be together and have more room...I was starting to panic...I was feeling pretty good, how could I just "sit" in the hospital? I went to the bronch and was quiet most of the time while we waited. They took other people before me that had come in after me. (Doug was furious at this...as was I). Dr. Lane came in (I had seen him pre-transplant a few times) and he congratulated me and asked how I was feeling. I told him I felt pretty good, but was confused about the other dr wanting to admit me. He said that he saw that and was wondering the same thing. Doug and I both told him our thoughts and feelings; how it may be a step backward for me if I am in a hospital room/bed especially if no treatment is really being done. He agreed, said he would find out and let us know. The other doctor came in, said he talked to a few other doctors (Dr. Budev being one! Love her!) and the consensus was to send me to the hotel but I would have appointments on Monday to find out about the bronch and if I would need to do an IgG transfusion from the antibody level. I actually got a phone call the next day about the bronch results..everything was ok! A0-B0 (I think that's right?) which means no rejection!! They said they wanted to wait to see about my antibody level. For now, nothing is being done with that. I had an IgG transfusion about a week before transplant. I believe that I got another one right after transplant. They were giving me more so that my body would accept the lungs better...I had to have a blood type match, body type match and an antibody match. My antibodies didn't match with my donor, thus the transfusion. So I guess we wait and see what happens and will go from there.

At our hotel! My "spot". :)

After the bronch I was feeling really good (and I mean really good!) from the twilight medicine I was given. I only remember bits and pieces from when I went under until the time I woke up Friday morning. Apparently I ate broccoli and cheese soup on the way home in the car and about spilled it on me multiple times. I do not recall this. What person in their right mind would get soup for a person that's totally not "with  it"?? :) haha, only kidding...my wonderful husband is who! He takes care of me very well and I am so very blessed and thankful to have him in my life!! In fact, we celebrated our 16th wedding anniversary the next day! (another reason I didn't want to be stuck in the hotel ALL weekend!) I felt GREAT Friday from all of the sleep I was able to get from my "twilight sleep". We had checked out the casino and I won $100 of of $5! :) We ate lunch there and then went to the mall and walked around there for a few hours. We ate dinner at Five Guys and then crashed at the hotel. He said I wore him out! :)

I was getting tired! :)

Saturday I was a little tired, so we took it easy. I don't think Doug complained at all, haha! ;) On Sunday, we made it to the Botanical Gardens in Cleveland. I had found that they do a butterfly release everday at 2:00. Doug and I went but were at the 2nd level when they did the release. :( However, there were a TON of butterflies in there, it was simply amazing! We were able to see one butterfly, after the release, that his wing hadn't formed completely and was just sitting on the log. I put my hand out and he hopped on. Doug got some pictures and then a little girl with her mom and dad came up and the smile on her face was huge! They spoke Spanish, but I smiled and held my hand out asking if she wanted me to give her the butterfly. She shook her head yes and I transferred the butterfly from my hand to hers. Her dad snapped away with his camera. :)

This little guy had something wrong with his wing. :(

Me and the butterfly. :)

One of the butterflies at the Botanical Gardens

Love the Blue Morph and Love this guy! :) <3

Monday was another day of tests and an appointment with the pulmonary doctor. My chest xrays looked great...my FEV1 went up another % to 81%! I was excited about that. My chest felt a little tighter and I thought if anything my numbers may go down just a tad. But they went up instead. I was very happy about that! The dr said that everything looked great and I could go home!! We would still keep an eye on my antibody level and may have to do a transfusion again. I still had to see the surgeon before leaving for the day. The appointment wasn't until noon, but we were done with everything else by 9:30 so we thought we would try getting in earlier so we could get checked out of the hotel before noon and get home earlier! We were able to accomplish that as well! The surgeon's visit was with the nurse and that went smooth. She checked out my incision and said it looked great...that everything looked great...that I was a poster child for double lung transplant and to keep up the good work. We were out of there, packed up the rest of our stuff at the hotel, checked out of the hotel and was on the road at 10 till noon!

I absolutely love this man with all my heart! :)

The kids were super excited that we were finally coming home! The car ride home took forever! when we pulled up there were butterflies all over! They were on the fence, and some in the flower beds as you go into the house. Once inside, there were butterflies all around and "Welcome Home Mom (and dad)! on the wall. Love my kids! :) I'm still trying to unpack and organize things. It's mostly all done, but I still have my "good and bad days". The good seem to outnumber the bad...whereas before the bad outnumbered the good. I just feel so lucky and blessed, I just can't say it enough! God certainly has performed a miracle for me! Answered prayers!

Our fence with the butterflies. :)

The past week has been pretty good. I've had a few visitors and I have gone out and about twice. :) I went with Doug and the kids to get groceries on Friday and today I was kidnapped by 2 of my very good high school friends. We went to brunch at Bob Evans and then went to Tailgators for a margarita. (mine was a virgin) It was a good time with them...we had lots of laughs, and lots of hugs! :) While we were outside on the patio with our margaritas chatting it up, there was an older man outside who was smoking. I had my mask on and he asked us if it bothered us. I'm not one to speak up much, and one of my friends beat me to it. She said, "Not her and I, but she just had a double lung transplant so i probably does bother her." He said he was sorry and that he would move (I couldn't really smell it, maybe just a tad when the wind blew just right) and he asked (I think assumed) if I was a smoker. I said, "Nope, never smoked in all my life!" He put out his cigarette and walked into the bar. He came back out and said he was sorry to intrude and went on to ask me questions about what I had wrong and when I had my transplant. I told him it was a month today. He went on to tell me that the bartender had a friend that suddenly passed about a month ago and she donated all of her organs and he was sure I had gotten her lungs. I was highly doubtful but stranger things have happened so I didn't dismiss it. We went inside to take our glasses back in and the bar tender talked to me a little. She said she was going to go check the computer as to when her friend passed. She came back out to tell me that it was July 18 and she was 44 from Winchester, IN. She had a brain aneurysm and was air lifted to Indianapolis. She said her husband (I think??) wanted to find everyone that got her organs and have a meet and greet. I know from my end, I wrote to my donor...but I couldn't disclose my last name, my hometown, my transplant facility, my doctors, or my religious beliefs. I wrote a 2 page letter and had to put a separate piece of paper with it saying my full name, transplant, and date of transplant. I also had to put it into a separate envelope and then mail it to the coordinators at Cleveland. They have to read it to make sure I didn't put anything in it that I shouldn't have and then they would send it on to the donor's family. If the donor decides to contact me, they will write a letter that will somehow get to Cleveland and then Cleveland will pass it on to me. It's actually quite a process. With that all said, I just told them in there that it was a wonderful thing that she was able to donate all of her organs and that she has given the best gift that she possibly could. I got home and googled the name and found out that she actually passed on July 24 and she was 52, not 44! ;) Oh well, it was worth a shot and nice to know that there are organ donors!!!

Me, JanAl, and Sandra! Love these girls!! :)

I am currently sitting outside typing this blog. It feels sooooo wonderful to be outside and enjoying what is left of summer! The breeze...the smells....that feeling you get when you close your eyes and just listen to what's going on around you. Do it. Do you feel it? Doesn't it feel great? Take it from me (and my donor)...take the time to stop and see, feel, hear, smell, taste what's around you. It can be gone in an instant...

My Transformation (part 2)

...continued from yesterday...

Doug and Kara

Kara with her mom and dad

Sorry about having a continuation, but I was really tired last night and just couldn't write any more! :)

I am a little frustrated about my eyes and that part of my vision is gone. I am hopeful that it will return, but only time will tell. I also know that this is minor and things could be a lot worse. I am very thankful for the gift that I was given and if that means I have something wrong with my sight, I can live with that. (although it would be nice if it could be fixed or if it would go away) I joked with Doug telling him that this is God teaching me yet another lesson. As soon as I could, I wanted to start photographing with Bella Baby again and this is His way of telling me that we cannot rush my healing. If nothing had happened to my eyes I would jump back in full force like I do with everything else and that would do more harm then good. So I am waiting it out and seeing what He has planned for me. I am interested in seeing what the neurosurgeon will say tomorrow.

I am also considered to be diabetic now. I have to take my blood sugar 4 times a day. If it is below 150, I do not have to give myself any insulin. Depending on the levels, depends on the units of insulin I have to give myself. I am also taking 2 different pills to help keep my levels down and to avoid the insulin shots, but so far I'm averaging giving myself a shot a day. I have no problems doing this on my own, but Doug has had to give them to me because I shake so bad. I am hoping this is only temporary as this kind of diabetes could be medicine induced...but we will see. Time will tell once again. :)

While still in the hospital I had to learn about all of my medications and how to fill them each day. This was quite the challenge because there are so many! The nurse would bring them in with my 6:00 meds and I had until 8 am to get them sorted for my 9 am meds and the next nurse that would be on duty to check them. I hate the 9 am meds (now they are my 8 am meds) as there are 17 I have to take. I had no appetite in the hospital and to have to take all of those pills with water and then also expected to eat breakfast at the same time was not an easy feat! The pills and water was a meal all in itself! Doug and my parents would get after me every day about needing to eat. Not to mention that most of these meds just make my stomach upset! :(

Up on the roof...2 thumbs up!! :)

Thursday night (the 26th) I was sleeping pretty good. It was 2 am and I woke up...this time seemed to be one of the regular times I would wake in the morning. I used the restroom and asked my nurse for another vicodin. I "hopped" back into bed excited because I was scheduled to be released the next day. Ok, so I didn't actually hop, but I was feeling pretty good that I think I could have! ;) I have only been lying on my back because the pain from my incision was still hurting quite a bit yet. I laid down, put my bed down some and felt one of the ties from my gown digging into my back on the left side. So I reached behind me a little and gave  my gown a quick tug and heard and felt a "pop" on my right side. I froze. Major pain. Called the nurse....could barely say anything through the pain. Then I thought immediately that maybe they won't release me the next day! :( She listened to my lungs and said everything sounded ok from her standpoint. She examined my incision in that area and said that everything looked ok there too. She had the pulmonologist on call to come and take a look at me. She couldn't find anything wrong either and said I probably just pulled a muscle and she was going to get me a higher pain med. I got it through my IV...not sure what it was...it wasn't morphine as I said I didn't want that. Apparently I was given something stronger then morphine...which I didn't really want that either, but by the time I knew it was stronger, it was too late. It was already coursing through me veins. I was out. I had really weird dreams...felt really sick to my stomach and I felt really off the next day. I was still scared they wouldn't let me go. I got an ice pack for my right side and that did help some.

I was tested to see if I needed to go home with any oxygen (for activity) but it turns out I didn't need any oxygen at all!! Yay! :) This was a difficult thing to get rid of believe it or not. I had been on it for so long that I was afraid to give it up. Sure, I knew that I didn't need it...that my new lungs were doing just great. But psychologically I just needed it. On the 19th I know that the respiratory therapist took me off of the oxygen (Doug posted this on facebook) but one of the nurses got after him and said that was totally ridiculous coming right out of surgery and we would wait to see how I did before taking me off of it completely. I was only on 2L at that time. Then they moved me to 1L when I went to the step down unit. It wasn't until the 25th (I think) that my doctor took me off of it completely. I was nervous but thought to myself that it was there if I "needed" it...I would just tell the nurses. It got me through thinking this way. If they had taken it out of the room completely and I couldn't see the tubing and cannula, I probably would've had an anxiety attack! :)

My big box of medications came to my room and we had to go through everything to make sure it was all there. Doug and my dad had to actually leave to take some stuff to the hotel so we would have room in the car for the rest of my stuff and for us! I was so happy to be leaving!

Everything seemed so surreal though. It surely didn't feel like I had surgery 9 days before. I truly felt like I had been through a major transformation; and I had. Think about it. I was a "caterpillar". I moved slow and knew that I had to get to a certain spot before I could spin my cocoon. Along the way to find the perfect place to spin my cocoon I had many trials and tribulations. Once I found the perfect spot, I was able to spin my cocoon. I believe this to be the time that I was put on the list. All I could do at that point was wait in my cocoon until the time was right and I could emerge. The cocoon represented God's arms wrapped tightly around me; helping me, protecting me until the time was right. Finally, July 18 I was able to emerge from my cocoon. I had to do it so slowly and ever so carefully. July 19 was my "first breath" and I was able to break through my cocoon even more by being able to take that breath. With everyone's love, support, and encouragement I was able to break out some more. I truly felt that day by day as I was getting better and stronger that I was breaking free from the cocoon and I've been able to stretch my wings and finally fly! I'm still waiting to "fly solo" and hope that happens by the end of the week! ;)

In just 2 days, I will be 3 weeks out from surgery. It is still hard to believe. My parents stayed at our hotel for the first week and they had to get back to Arizona for some doctor appointments that my dad had. My brother, Theron and my sister-in-law Kim, came in from AZ to visit with me for a few days and they stayed with us. It was so good to see them! I really miss having my big brother close by! A good friend of ours, Suzanne, brought the kids last Friday evening and picked them up Sunday afternoon. I've really missed them. We were able to go do a few things all day Saturday and I was worn out by days end! Now Doug and I are on our own. :) Our anniversary is on Friday...16 years! I love him with all of my heart and soul!!! I am so thankful to my donor and hope that I will have many, many, many more years with the man that I love! Doug has been amazing through everything. He has helped me get through the most difficult and darkest days I've ever had in my life. He has definitely seen me at my worse and I am thankful that he is still around! :) haha!

So this week I have a neurosurgeon appointment tomorrow afternoon about 1 pm. On Thursday I have a days full of appointments, the most important is the bronch. I've never had one before and am a little nervous...then again if I can undergo a transplant, I think I can do the bronch no problem. ;) Prayers that my lungs are still "stunning" and that my body is still accepting them with no issues. I will try and update what I can when I can. Thanks again everyone for all of the love, prayers and support!

My Transformation (part 1)

I think that I am still dreaming and at anytime I will wake up. Was it just 3 short years ago that I started to become sick? Not even 2 years ago that I was diagnosed with Bronchiolitis Obliterans and was told I would need a double lung transplant. Was that me? I think it was...however, it was the old me. I am now someone totally (but not completely) different from who I used to be. This is a good thing, because I have learned some pretty valuable lessons along the way. My eyes have been opened to see who people really are. Who will be there for you when the times are really tough...and who really isn't there for you when the times are tough. I do feel really blessed with family and friends who have been there helping, supporting and most of all loving me, Doug and our kids along this crazy journey. Doug and I still just cannot express our gratitude enough. We have found a loving church family that is very important to us. If it weren't for finding our church, I don't know if I would've found God again and I don't think I could've made it this far on my journey if it weren't for them (or more importantly, Him).

So on July 17, 2012 at 7:25 AM I got "The Call" from Dr. Budev at The Cleveland Clinic. One of the coordinators had called and asked how I was...told her I was 'hanging in there" and she said she had Dr. Budev on the line. Dr. Budev greets me and tells me that she has a set of lungs available to me if I wanted them. She told me the lungs were from a young woman and that she had been exposed to Hepatitis B. Normally when an organ is made available to you, you don't have a choice as to if you want it or not. In this case, with the donor being exposed to Hepatitis B I had the right to decline them. Dr. Budev went on to tell me that the donor had been treated and was not infected with Hep B, that she was immune to it, but that it was possible that I could contract the disease later. She told me that she didn't see it as a big issue and that since we already knew about exposure it would be "easy" to treat if need be. She went on to say that with my rare blood type and body size that it may be awhile before another set of lungs would become available. I told her that I would take them. She told me to be at the Clinic between 11 and 12 so I could get prepped for surgery.

Doug and I quickly got the kids up...called his parents to come get the kids...and finished up last minute packing before we hit the road. I was excited and fairly calm most of the way to Cleveland. I was texting and calling everyone. As we got closer to Cleveland the more anxious and nervous I got. Just to think that in a matter of hours I could possibly be getting "new" lungs. I was also thinking about my possible donor and wondered who it was, how they had passed and the emotions that their family was going through.

We arrived at the main building close to noon. Doug got me in a wheelchair, hooked up my 5L of O2 and we were on our way to the 5th floor...Cardiac ICU...to get me prepped for surgery. We had gotten on the elevator and I asked the man close to the floor buttons if he could press 5 for me. He said, "Sure thing"  and pressed 5. Doug wheeled me off the elevator and as the doors closed behind us he said, "That was Jerry Springer!" Ha! Thinking back to it he was right! We got a good chuckle about it and I was hoping that this was a good omen. :)

Sitting in ICU we waited and waited and waited some more. We were told surgery was scheduled for 10 pm, then it moved to 10:30 and we were told that there were "issues" with the OR at the donors hospital. My friend, Jody, wanted to come and visit and I'm glad that she did! She helped pass the time as we chatted. She was also there when I got my next call from Dr. Budev. It was 10:00 (still July 17) when I had heard that our church family was gathering together at church for a prayer service for me as they thought I was going into surgery around that time. Doug had also told me that he had been getting calls and texts and facebook messages about people from all over saying prayers for me, the doctors and surgeons and the donor. I could definitely feel God's arms around me...I felt a sense of peace at this time too. A little after 10, Dr. Budev called me and told me she had good and bad news. She said that the bad news was the lungs that she had called me about earlier that morning were no good after all. She said that the team had gotten there and there was more damage then suspected so they didn't take them. All I said was, "Oh, OK." Dr. Budev went on to say, "The good news is that I have another set available for you and they are perfect!" I started to cry. She told me that this very rarely happens...having 2 sets of lungs become available within a short amount of time....let alone my rare blood type and body size. She told me this was a miracle and the lungs looked absolutely wonderful and I would be in surgery at 6:30 am. I thanked her and hung up. Doug and Jody were both there looking at me anxiously waiting to find out what I was told. Prayers were being answered!

I tried to sleep, but of course it wouldn't come. About 10 till 6:00 am, they came to get me for surgery. Doug walked with us out of the CICU and I thought maybe he would be able to stay with me a little longer, but nope. :( I was starting to get more anxious (and scared) and tried to think of other happy things. Once in the OR, I tried looking around, but then didn't really want to. I was put on a really small bed and I remember thinking I was going to fall off of it during surgery. :) One of the women nurses in there had made eye contact with me and I talked to her. I think she could sense my anxiety because she stayed with me until I was out completely. We had talked about me just a little bit and then I asked about her and where she was from. She told me she was from Port Clinton...which reminded me of my late uncle Dave. He had died suddenly a few years ago. He took care of himself and was an avid runner. He and my aunt were staying with another aunt and uncle at their place in Port Clinton when he suddenly just died. He had an infection in his heart that he didn't know about. Anyway, the nurse took hold of my hand and I asked if she could stay with me until I was out completely and she said of course she would stay with me. That  made me feel better. Dr. Mason was my wonderful surgeon. Before I was put out, he leaned in, looked me in the eye and told me, "Today is a beautiful day to get new lungs!" I agreed and thanked him. I also thought back to the day Doug and I was married (August 10) and our pastor said, "It is a b-e-a-u-ti-ful day!" I was a little more comfortable.

Obviously, I do not remember the surgery. I asked Doug (probably about 2 weeks later) about details. He said that the first incision was made at 7:08 am and Dr. Mason was out to talk to him around 11 am to let him know that everything went well with surgery. So on July 18, 2012, I got my new lungs! I remember things here and there. I thought I was on the phone with my dad and he asked if I wanted my mommy and I told him yes. Come to find out later, this was after surgery and I was in CICU and he was actually there and asked me if I wanted my mommy. :) I also found out later from Doug that they had to keep sedating me because I was awake and trying to take the tube out of my throat. Doug was told that they were sedating me more then other patients and that doesn't usually happen. I just wanted to try out my new wings is all! ;) I recall someone telling me that the day was July 19 and it was Alexa's birthday. Before I know it, I was asked if I was ready for the breathing tube to come out. I opened my eyes really wide and heard someone laugh and say that my eyes were as big as saucers and they would take that as a yes. I was told to take a deep breath and as I did so they pulled the tube out. I saw a bright flash as they pulled out the tube...this could've been the time when I had the small stroke that has affected the vision in my left eye. After pulling the tube out, Dr. Mason said that he had some important questions to ask me. He asked me if I knew what I just had done. I told him I just had a double lung transplant. He asked me if I knew where I was. I told him I was at the Cleveland Clinic. Last, he asked if I knew what day it was. I said...you're trying to trick me on this one. I told him I had surgery on July 18 but that it was now July 19 and my daughter's 11th birthday! He chuckled and I think I impressed him. :) And to think...I took my "first breath" on Alexa's birthday! If you can recall...I got listed on June 12, which was Austin's 15th birthday and took my first breath on Alexa's 11th birthday! How amazing is that? (Doug was taking bets when I got listed as to when I would get my new lungs and I told him it would be on or near Alexa's birthday..he didn't believe me.)

The next few days were a blur and the pain meds really messed with my head. At one point, I thought I was in the middle of a war and I had to get out. The pain was crazy. Some of the chest tubes came out within the first few days and I had 2 "bulbs" that were still attached to drain fluids. I was in the CICU until that Friday (the 20th), then I was moved to the step down unit. It was on Friday morning when I noticed that something was wrong with my vision. I thought I had seen it Thursday night, but with all of the drugs and I hadn't had my glasses on, I wasn't sure. When I look at people, their right eye is missing. It's not blacked out or blurred...it's just missing. I was watching TV Friday morning and it had closed captioning on and I couldn't read part of the closed captioning. I had to keep re-focusing...and this was making me nauseous. I told Dr. Budev about it and she ordered an MRI. Not fun because I had to lie flat on my back for about an hour and my head was tightly enclosed in the machine. Not fun. Lots of pain. The MRI showed that I suffered a small stroke and that my vision was part of the brain that was affected. I was told it could get better or it could get worse, that we might not really know. I'm going to see a neurosurgeon next week and will find out more.


Stay tuned for more...it is getting late and I am pretty tired. :)

....to be continued.....