Butterflies...my good luck charm

I know that some (or most) of you have heard/read about my butterfly connections. I had not posted this on my blog yet, so I thought I would do so now. I've had more butterfly coincidences here lately and thought I would post some of those as they come, so I'm going to start out with how my butterfly connection started. :)

When my pulmonologist told me that I would need a double lung transplant I thought he was smoking some serious crack. I've been fairly healthy all of my life; I've never smoked; never did drugs; only drank socially...so how is it that my lungs had gotten so bad in so quick of a time, without much warning? I looked at him like he was crazy and didn't even question him. I thought he had lost it. On the way home I called Doug to tell him that I would need a double lung transplant and he laughed and agreed that my doctor was on drugs. (haha, just kidding!) Well, most of you know the rest...I do indeed have to have that lung transplant.

So trying to find hope in surviving a double lung transplant...as the numbers I've read for people still living 5-10-15 years later was actually quite disturbing...I found a book about people that had had lung transplants and that they were doing well. They shared their stories of what they had, the surgery they had and how they are doing now. I saw this book on amazon and waited to purchase it at first. Then one day as I was looking closer at the book I read that a new set of lungs is just like that of a butterflies wings. When a set of lungs is put into someone and "breathes life again" it looks just like a butterfly taking flight....and is one of the most beautiful things to witness. (I think I will take their word on that!)

As I sat and thought about my lungs looking like that of a butterfly I had some revelations. The first thing I thought of was my grandma Neff. When I was 13, my grandma passed away from cancer. She was an amazingly strong woman and I had gotten much closer to her as her time on Earth was ending. Towards the end, she had come home from the hospital and our family would take turns staying with her and grandpa out at their house. One of my cousins asked me to stay with her and her family one of those nights and I agreed. I just had a sinking feeling that she would pass that night, and she did. My grandpa gave each of us grandkids something of hers to have and to keep. To me, he gave me a necklace that she wore often...it was a butterfly. I had always treasured the necklace and I always have it in my purse with me at all times, so that she is always with me too. Once I made the connection of the necklace and my lungs, I felt a sense of peace that my grandma is here for me to see me through my illness.

I still sat at my computer looking at the book. I had thought about my grandma's necklace and then I started to smile again because I had yet another connection with butterflies. My parents came home last May to stay with me, Alexa and Cameron while Doug and Austin went to Washington DC for Austin's class trip. My mom had brought with her my grandma Coning's coin purse. My mom said that grandma took that coin purse with her everywhere. Attached to the coin purse was grandma's lucky rabbit foot. :) Grandma was always very lucky and she believed this foot brought her luck. My mom said that she wanted me to have that same luck that grandma had and that's why she was giving it to me. My grandma Coning was also an amazing woman whom also dealt with a lot of health issues in her life. She had diabetes most of her adult life in which she had to give herself daily insulin shots; she had cancer twice; and yet she still prevailed and lived a pretty long life. I opened the coin purse because mom said there were some coins inside that grandma had in there that she just left. As I opened the coin purse, I saw not just coins, but a bright and beautiful butterfly pin! I loved the pin the minute I saw it and I gathered my butterfly necklace and put it inside the coin purse with the pin; and the coin purse goes everywhere I go...it is my good luck charm.

My heart felt so extremely good because I just knew that the 2 strongest women in my life were up there watching out for me and making sure that I knew that they were with me. I know that with God's help they will watch out for me and help me through. I went ahead and bought the book right there and then and have found it very inspiring. I have more hope now that I will get to transplant, make it through and recover with flying colors.

This last September I had to have a heart cath as a part of the pre-transplant testing. The transplant team told me that this would be one of the last tests I would have to have before they would get me on the list. I did the test and Doug drove home. He took a different route home then usual and this particular route was going to go close to the cemetery of where my grandma Neff is buried. I asked him if we could stop as it had been awhile since I had been there. He gave me a look like we shouldn't because he knew I was tired and had discomfort from the procedure, but he stopped anyway. I got out and did stoop down to touch my grandma's name (like I always do) and in my mind I told her hello and asked her to help me get through everything. As I "said" this in my head, a butterfly flew right at my face! I looked at Doug and asked him if he saw that and he said that he did. I kissed my hand and touched her name again (another thing I always do) and left feeling that things were going to work out just fine.

Just a few weeks ago, I received a beautiful butterfly necklace from an aunt and uncle of mine. They do crafts and were at a show and she saw the necklace and thought of me so she bought it and sent it to me. It was such a great and lovely surprise to get a butterfly in the mail totally out of the blue. It also made me see how much people believe in me that I will make it through this. (Oh, and the numerous birthday cards that I got that all had butterflies on them too!) :)

This last week I've had a very special friend of mine concoct some sort of plan to help raise some money for my upcoming transplant. She was sneaky and asked if my Bella Baby email was still working. I told her I supposed it was since I got the email she sent. ;) Within about a half hour, I was getting paypal notices from people I didn't even know donating money to help pay for the out of pocket medical costs that I will endure during and after transplant. I was floored. I was even more floored as more money came in through the mail. I've been getting emails and letters from people that I don't even know that have been so kind to let me know that they are praying for me. That in itself is huge. I was having a fairly bad week (health wise) last week and yesterday was pretty bad. The mail lady had a package for me...all the way from Nevada. I hadn't ordered anything, so I opened it up and saw that it was a prayer quilt. A fellow "Bella Babe" had sent this to me...The Piece Makers' Quilting Group made the quilt and sent it to me. Every person is added to the prayer list and their names are read aloud every week during their workshop. I felt hugely blessed. The quilt is beautiful and has a lot of inspiring scriptures written on blocks throughout the quilt. And?? Yep...I found 3 of the fabric blocks used had butterflies in them! :)

So now you know why my blog is titled the way it is...The Journey of Kara the Caterpillar....It is because I am still a caterpillar on my journey up the long tree to get my new set of lungs so I can turn into that butterfly. I hope that everyone has a very Merry Christmas and a very blessed, happy and healthy, New Year!! Thank you everyone for all you have done for my family and I. We are forever grateful for the meals, thoughts, prayers, love, donations that you have given over the last few years of my illness. God is good to those that do good for others, so may your lives be richly blessed!

"For I know the plans I have for you," declares the Lord. "plans to prosper you and not to harm you. Plans to give you hope and a future." ~Jeremiah 29:11

Hope, Faith, Love, and the Kindness of Others

"Hope doesn't come from what you can do. Hope comes from what God can do." -God is in the Tough Stuff 

Reflecting back over the last year, I consider myself blessed. People tell me that I am an inspiration and they do not think they could go through all I have gone through...but they are wrong. You do what you have to do in order to survive; if you want it bad enough that is. When I am feeling at my worst I tend to think of those that are worse off then me and it puts a new perspective on things for me. I have a loving and supporting family. My husband has been absolutely wonderful. I feel like I am constantly complaining about not feeling well but he always finds a way to make me laugh or smile and tell me that everything is going to be all right. And I whole heartedly believe him. (even though some days I don't believe him so much!) ;) My children have been so helpful (ok, this is debatable! haha!) but their unconditional love and hugs mean the world to me. I hate not being able to partake in their many events, but I am looking forward to the day that I can cheer them on at the top of my new lungs from the sidelines! I have so many other family as well as friends that have been so wonderful to me in some way or another...whether it is a phone call to see how I am, a card in the mail, an email, a meal, and really just prayers that God will take care of me and heal me when the time is right.

"When we believe that God won't give us more than we can bear, we can bear much more than we thought possible." - God is in the Tough Stuff

I have my good days and my bad days (don't we all?!?) but it seems lately that the bad are outnumbering the good. It does scare me to be honest, but again, I have trust in God that things are the way they should be and He will take care of me. He has already proven this to me in many ways over the last year. My faith has grown stronger then ever and I am so happy to have Him to lean on. Doug and I started to attend a new church this last September and we have enjoyed getting to know everyone that attends and have made many friends there. We feel so comfortable within these walls of God and He has blessed us tremendously. Just when Doug and I feel down on our luck, God somehow gives us a boost. I've had many worries over the last year with having to quit not just one job, but two jobs because of my health. I've always been so used to being busy with everything and taking on anything just to stay busy. Well, I see my illness as a way of God telling me that I need to chill out and slow down. :) Not quite what I had in mind, but He is the one in charge. I worried about finances...how would we live on just 1 income when we were struggling with 3? How on Earth will we be able to pay for my many medical bills before, during, and after transplant? I had worried night after night about this, praying about it, crying about it because I felt like such a failure and a burden. Then I just "let it go". I'm not sure exactly when this transformation took place, but there was a sense of peace that had overcome me and I feel as though it is out of my control, I cannot worry about it and everything will work out as it should. We have had to cut corners, that was to be expected, but I feel like things are working out like they should.

I am so thankful for the kindness of others...that includes complete strangers. I never in my wildest dreams thought that we would have such random acts of kindness. Over the last week we have received donations of food and money. Doug and I have been totally floored by the willingness of those (most of whom we don't even know) to give to us in our time of need....especially when times are so tough with the economy the way that it is and right at Christmastime too. I feel so blessed; blessed beyond words! I've also learned that

"No matter how little you have, you're never broke if you have God. No matter how rich you are, you're living in poverty without Him." -God is in the Tough Stuff.

I go back to Cleveland on January 16. I will have the regular blood tests, lung function tests, and chest xray as well as another echocardiogram. I will see my pulmonologist, a rheumatologist and someone in infectious disease. I'm a little worried about the infectious disease appointment because of my "recent diagnosis" there...and what that will all entail. My body isn't producing antibodies and it looks as though the only treatment for this is to have infusions every 3-4 weeks to get those antibodies into my system. It is my understanding that this is yet another hurdle I have to overcome before I can be re-evaluated for transplant.

Thanks again to everyone for all of your love, prayers and support. Please know that no matter how big or small, everything is greatly appreciated. God is good! :)

Reading "God is in the Tough Stuff" by Bruce Bickel and Stan Jantz

*taken from Chapter 5 of this book. I felt like this chapter spoke to me with everything I'm going through.

"Lord, on You I call for help against my blind and senseless torment, since You alone can renew inwardly and outwardly my mind, my will, and my strength, which are weak." -Michelangelo

Chapter 5: You're Not Exempt

There are certain privileges that accompany association:
*If you are a member of AAA, you get hotel discounts.
*If you are affiliated with an airline's frequent flyer club, you accumulate bonus miles for free travel.
*If you work at McDonald's, you might get to eat the French fries left over at closing time.
*If you are a sales clerk at J.C. Penney, you get an employee discount on clothing.
*If your spouse is in law enforcement, the highway patrol might let you off with a warning when you've been doing eighty m.p.h. in a seventy zone.

     Many people think there are comparable "exclusive membership benefits" if they associate with God. They think there is some providential protection that surrounds everyone who believes in Him. They believe a guardian angel guarantee will protect them from trouble, tragedy, and turmoil. Too bad for them -- they must not have read the fine print in their celestial contract.
     The fact that God does not insulate those He loves from pain and suffering should be evident. For example, consider Jesus -- who had a very close association with God. God allowed Jesus to suffer. And if you are unclear about that, just watch Mel Gibson's movie The Passion of the Christ. (The word passion used in this context refers to suffering.) But Jesus wasn't alone in His suffering. According to ancient tradition, most of His close followers endured torture and/or a painful death.
*Stephen and Matthew were martyred.
*Luke and Philip were both hanged.
*Peter and Simeon were crucified.
*Mark was dragged to his death in the streets of Alexandria.
*John was dunked into a pot of boiling water.
*Bartholomew was killed by having his skin ripped off while he was still alive.

     All of these men loved God. But if you were God's P.R. agent, these are not the stories you would put in a recruiting brochure. Their treatment runs contrary to our notion that God shelters those He loves from harm. Well, that notion is flat-out wrong. Our tendency is to decorate our concepts of God with thoughts of love and peace and "blessings." It's true that God is about all those things. But that is a limited and one-dimensional understanding of God -- including a realization that He considers troubles to be a blessing. That's why the Bible says we are to rejoice when hardships come our way:

Dear brothers and sisters, whenever trouble comes your way, let it be an opportunity for joy. For when your faith is tested, your endurance has a chance to grow. So let it grow, for when your endurance is fully developed, you will be strong in character and ready for anything. 

-James 1:2-4

     God doesn't want us to rejoice in suffering simply because He has a perverse sense of humor. He wants us to realize that our struggles drive us closer to Him. Difficulties are a necessary component for building the foundation of our faith. They cause us to seek God, because we might otherwise tend to ignore Him in tranquil circumstances. They impress upon us our need for God. They expose our lack of self-sufficiency, and we become convinced of our dependency on Him.
     The next time difficulties come your way, don't say, "I love God...this shouldn't be happening to me." Instead, realize that those circumstances haven't escaped God's notice. He loves you and can use each situation for your good.

*Easy times may make you spiritually indifferent, but tough times make you spiritually dependent. And that is exactly how God wants you.
*Satan wants your life to be easy, but God loves you too much to allow that to happen.
*Loving God doesn't exempt you from troubles, but it does ensure that you can find meaning and purpose in them.
*Loving God doesn't exempt you from troubles, but it does ensure that you won't go through them alone.
*The Bible says to rejoice in your troubles. That means that when life gets bad, you've still got something good going on.

Through this whole journey of mine, I've never really asked "why me". I've actually always kind of had the thought of "why NOT me"? I know that is sounds crazy, but would I really want the pain and suffering I have gone through to happen to others, especially the ones that I love? Definitely not! There is a reason and a purpose for what I am going through and even though it is really tough to see what that reason and what that purpose is right now, I have faith that everything will all work out in the end. I used to worry about the little stuff. (I still do a little...:) After reading this chapter I have realized that my pain and suffering are not for nothing...I have had this pain and suffering because God loves me and needs for me to trust in Him that He is here for me to lean on. Just like the scripture above says..."when your endurance is fully developed, you will be strong in character and ready for anything." So I'm just waiting on that endurance to fully develop.  :)

I think I just got a little "caterpillar shove" from God to keep me moving up that branch...

Phone Call

Well the long awaited phone call from Cleveland has been received. I was wondering if they were ever going to review my case seeing as how I was up there a month ago! My transplant coordinator called me on Friday though to tell me that as long as the surgeon got his notes in that my case would be discussed today and she would call me by noon to let me know either way what the decision was. (or if the surgeon didn't get his notes in on time which would push me back to next Monday...I figured it would be my luck that this would be what would happen) ;)

So she called to tell me that the surgeons (3 of them) met to discuss my case this morning. She said that they "deferred" me for now. Which means they didn't say no, but they didn't say yes either. She said that there were a few things that led to this decision. One of them being that I am still "too well" for transplant. Sounds really stupid,  right? I understand where they are coming from...but to think about being sicker then what I am now and in desperate need of the transplant scares me to death. Anyway, this should be seen as a good thing.

Next she said that there are some things that need to be taken care of first before they will discuss my case again. I need to be seen by someone up there in rheumatology. They know how I've been struggling back here and pretty much not getting anywhere with anyone; so they want me to be seen by someone up there that CAN ACTUALLY HELP ME!!! I say amen! to that! :) They need to figure out why I am having the pain I am having. They are attributing it to my RA (rheumatoid arthritis) because I can't feel pain in my lungs because there are no nerve endings.

She said something else that needs taken care of is that I need to see someone in Infectious Disease. (yay me...yet ANOTHER specialist to add to the list!) Apparently I have hypogammaglobulinemia, which in English means that my body is not producing enough antibodies. This is likely a direct cause of my RA...and/or my lung disease. I've had the pneumonia shot twice now and both times they have not "taken" so I am still at high risk for getting pneumonia. The reason they are not taking is because of this hypogamma...in a "well" person, they can have the shot and expect it to last 5 years. I can't even get the shot to take in my system...soooo...bad news for trying to get transplanted because it means my body will be fighting harder against my new lungs and I would likely reject them right away. (This is my understanding anyway.) So I will see someone there in Infectious Disease and they will come up with a game plan as to what will happen next. Looking on the Internet, I've seen treatment for this being IV transfusions every 3-4 weeks.

Sooooo, the plan is to go back in 6-8 weeks. (mid-late January) and visit with all of the above PLUS my pulmonologist and who knows who else. And then they will go over my case again. My coordinator told me to call right away if I start to feel worse or if I think I need to be seen sooner. I have to try and stay away from IV narcotics...which is fine by me...that morphine I had the last time did nothing for me really. Sure, it took the pain away, but made me feel really sick and really loopy. I had really weird dreams, didn't feel rested at all, and in the end I still had pain the next day! I told Doug I didn't want morphine ever again!! I hope vicodin isn't on that list because it has been one of my very best friend's here lately... :)

Too bad there isn't a magic pill that would make this all just go away. I feel like my tiny caterpillar body is just standing still on that branch not moving forward at all. I'll eventually make it to that leaf and build my cocoon...just not sure when. Timing is everything.