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.

No News is Good News. Right?

I still have yet to hear anything from Cleveland in regards to if I am going to be listed or not. It has been almost a month since I was there last and to be honest I am starting to get really antsy. I had spoken to my transplant coordinator early last week because I had been on a z-pack for a cold I had. I asked her then if the doctors had discussed my case and she said no, but she was getting ready to go through the surgeon's notes and get things ready. I was really hoping that my birthday wish would come true and I would get a call this last Monday...but no such luck. :( I emailed my coordinator and asked her if she knew when my case might be presented...but I have yet to hear back from her in that regards. :( Why does everything have to take so long? I'm just so tired of feeling so cruddy all of the time. Tired of putting a smile on my face and pretend all is well when it really is not. Tired of not being able to do pretty much anything that I used to be able to do. I am thankful for my life, thankful to still be here, thankful for my family and friends....if I didn't have all of this wonderful support I would be craizer then I already am! :)

That's all for now...I just wanted to post something about still not knowing anything in case anyone was wondering. ;)

Monday, Monday, Monday

So in my "old life" I always dreaded Mondays....the weekend was over and it was the start of a new, usually 5 day, work week. I wish now that I wouldn't have dreaded those Mondays, but instead welcomed them. A new day that you are alive and breathing should be one to be celebrated. You should be happy to get up and get going in the morning and go to work...thankful for a job to pay the bills, "socialize" with others...no matter how tedious the work or how much there's that "one person" you just can never get along with. Today, I would much rather have the dreaded Monday morning "gotta get up and go to work" then sitting around the house not being able to do much of anything in fear of not being able to breathe.

I am a bit anxious today that it is Monday. For the next few weeks I will be looking forward to the Mondays that I once hated. I'm waiting to hear back from Cleveland in regards to if they are going to put me on the list or not. The only thing I know is that the doctors meet on Mondays (not sure mornings...or afternoons...or all day...) and they will discuss my case in the next few weeks. I've only had 1Monday since I was at Cleveland last and I honestly don't expect to hear anything until probably the end of the month. However, I am still anxious each Monday that rolls around and wondering if I will get the call to be listed. My birthday is on the 27th and is on a Sunday...I told Doug hopefully I will have a wonderful birthday present with a phone call to list me on the 28th. So we will see. I just emailed my transplant coordinator this morning about something else and asked if she knew when they would be meeting about my case. I'm anxiously waiting to hear back from her. :)

Tomorrow I am headed back to one of the two rheumatologists I've seen over the past 2 years. The pain I've been having in my chest and back just aren't going away. I've also had headaches almost daily that ibuprofen doesn't even help. I've had to decrease my prednisone (steroid) dose to 10 mg in order to do transplant and I think being on the higher dose has made me not aware of the pain before. I'm not too thrilled with this rheum. that I am seeing tomorrow as he does not believe Cleveland and that I am as bad as what they say. I haven't been to him since January, so I'm a little anxious about my appointment tomorrow. Doug has to work tomorrow evening, and my appointment is at 4 in Dayton...but I am hoping that he can go with me and maybe go in to work a little late.I just don't know if I want to handle this doctor on my own. ;) My pulmonologist in Cleveland threw out fibromyalgia...so we will see. I do have some of the signs and symptoms,especially where the pain is located. I hope that he will be able to help me with pain management. I surely don't like taking vicodin nearly every day just in order to sleep at night. :(

As soon as I get that phone call, I will make sure to post and let everyone know. Thank you all for your continued support, prayers and love! :) I sure am one lucky gal!

You'll Shoot Your Eye Out.....



Doug and I at the house used in A Christmas Story. We would love to go back with the kids and have a family picture taken out front! :) I would also love to go back at night and see the leg lamp all lit up. :)

Cleveland Trip 11/1 and 11/2

Just a forewarning that this will likely be a long post. :)

Doug and I left early Tuesday morning bound for Cleveland. First on the agenda was the usual bloodwork, CT scan of  my chest and chest xray. This time I was lucky to get away with only 10 vials of blood taken from my left arm and 1 from my right! I finished all 3 of these tests by 11 am and my next and final test of the day wasn't until 1:30 in a different building. Much to my surprise when we were getting ready to leave the main building to go to the Crile building, I ran into someone I knew from back home here! I won't say who it was (don't want to violate HIPPA) ;) but it was so funny to go all the way there and be in a HUGE place and run into someone from back home. Small world. (I really hope that they found the answers they were looking for!)

We couldn't eat lunch because of the test I had to do required me not to eat from 6 am that morning until after the test. this would be the really fun stomach test I've been talking about. Esophogeal Motility test....loads of fun!! Doug and I went ahead and went over to the next test at 11:30 in the hopes I could get in earlier. We only had to wait an hour, so that wasn't too awful bad. Doug wanted to come back with me and watch this test and they let him. Boy was he in for a treat! :) This was the test that they put a tube down your nose (numbing spray in the nose first) then the tube goes down your throat and to your stomach. Once the tube was in place I had to lie on my left side while the tech gave me tiny sips of water. I had to try and only swallow the water. If I coughed or swallowed before the next time she gave me more water the "timer" started over again and I had to wait 30 more seconds. I had to swallow water 12 different times before they were able to take the tube out of my nose and I was finished. I was so glad that test was over! It actually wasn't as bad as the first one I had done in Dayton. (although still not pleasant!) I told the tech this and she told me that I was actually the first person that she has tested! (there was another tech in the room with her) I was so glad that she didn't tell me this first or I would've bolted from the room! Before we left we were talking about getting a bite to eat and being done for the day and they were giving us ideas of where we could go. In conversation the tech that did my test asked where we lived and we told her 3.5 hours away; about an hour north of Dayton. We had said Versailles and she said that she had stayed at the Inn and knew exactly where that was. Small world!

Doug and I grabbed a bite to eat at the Clinic and then left to stake out where we were going to meet up with friends for dinner that night in Little Italy. We also wanted to go check out the house that was used in The Christmas Story movie. The house is open to the public to go through but only Thur-Sun; so it was closed when we were up there. :( It was still neat to find it and we did take some pictures of the outside. The infamous leg lamp shone brightly in the window! :) It was still pretty early, but we checked into our room and rested up before dinner with our friends later that evening. Dinner was great (Mama Santa's in Little Italy) and it was great to eat dinner with Jody and Jon Shy! Our waitress was a riot and gave us some Milky Ways before we left...my fave! :) Doug and I both thought we would sleep great that night because we had an early start to the day and we were exhausted...however we both didn't sleep very well at all. :(

My first appointment was at 9 am to do my lung function test. My FEV1 (forced expiratory volume) was 20%....no change from September. Which is good...but still a very low number. The tech also did the usual blood gas, which is a reading of your oxygen level and is taken from the main artery in one of your wrists. Mine was 92.5%, that number has dropped just a little. It was a little over 93% in September. Lastly I did the 6 minute walk again. I started out on room air, but once again about 1.5 minutes into the walk I had to be put on oxygen. I was on 2 liters and was able to maintain that pretty well.I walked a little further then I did in September, so I was happy about that.

The next appointment for me was with the gastro dr. to go over the results of the fun stomach test I had done the day before. He said that it was good news...and that he would clear me for surgery! The same test I had done in Dayton...this doctor in Cleveland said the results looked worse then what he thought they really were. That is why he repeated the test. He said that the results showed that I do have mild reflux and that I may need to have surgery to correct this later on after I would have transplant. He said there was a little bit of wearing away of my esophagus from the acid reflux but that it wasn't very bad at all.

Doug and I met with the social worker next and she also went ahead and cleared me for surgery!

Dr. Akindipe (ah-kin-dip-e) (I had to write down how to actually sound his name out and practice it because I had no clue!) is my pulmonologistand we met with him next. (I'll refer to him as Dr. A) He asked me how I had been feeling. I told him it just depends on the day. I told him about the pain in my upper right chest that at times moves to the other side in my back. He told me that the pain is not associated with my lungs at all and he is unsure where the pain is coming from. He said that I will not feel the pain when it comes to my lungs...which...confuses me because I have a lot of chest tightness and I know it's not my heart so would assume this would be my lungs...?? Anyway, he wants me to visit with my rheumatologist again (in the middle of trying to find a different one!) because he is sure that it probably has something to do with my Rheumatoid Arthritis (RA). He mentioned possibly having Fibromyalgia...but again told me to see a rheum. He was going to try and set me up an appt. to see one yet that day but it was already 2 pm and we had to meet with the surgeon at 3. He asked if we could stay another day and they could get me in tomorrow but we said no. That would've been 3 days there in a row and Doug had to work today...and for just 1 appointment? No. He asked if we could come back next week and we weren't going to drive 3.5 hours one way for just 1 appointment. So on to finding someone back here.

Dr. A then talked about transplant and how we were feeling as well as his thoughts on the issue. (because I asked him his thoughts on the issue) He went on to tell me that on numbers alone (my lung function result numbers) that if he were to present his colleagues with just my numbers and nothing else about me that they would list me right away. So in other words, my numbers are horrible. He went on to say "but..." since I seem to be doing ok with oxygen and only on 2 liters when sleeping and doing activity that he thinks I am "too healthy" to be listed. He went on to say that we have to keep in mind that the longer we wait the better because the outcome after transplant is so unclear. The odds are that 5 years post-transplant that only 50% of the patients are alive. I believe he said that 10 years post-transplant that 25% are alive. Given that I am 34 years old and in relatively ok health (haha) then I could buy more time and wait...in essence I could still get another year or two out of the lungs I have. He said that he would present my case in an upcoming meeting (they meet every Monday) and they would decide if they would list me. He said to be honest he would probably throw out there that I am not ready to be listed yet. I told him my only concern with that is my blood type. I am AB+, and so I have to be matched with an AB+ donor and they also have to be close to the same size as me. AB+ is of course more rare...so I could be on the list a long time waiting...but there aren't going to be a lot of AB+ people waiting on the list, so my odds of getting lungs is good....that is if there is an AB+ donor. Anyway, he wrote this down and said that was a very good point and something to definitely take into consideration when they meet.

I do understand where he is coming from, but it is so hard to digest all of this information. Knowing that my numbers are so bad...knowing that I have a rare blood type I want to get listed. I also have to find out why I am having the pain in my chest and get that fixed (if possible)...because he said if I am having that now I will have it after transplant since it has nothing to do with the lungs. I had to get another Hepatitis B shot (already had the 3 doses and thought I was done) but the blood test was negative for it so I had to get another. I surely hope that this dose takes!!

Lastly we met with one of the surgeons. We had to wait an hour before he finally came into the room...and then he only met with us for like 10-15 minutes. It was crazy! He said he looked over my records and said that he doesn't see anything that would get in the way of transplant and that he okays me for surgery. He said that they will go over my case in the next few weeks and decide if I will be listed. I asked about the numbers and how that works and he said a number of say 20 is really low and someone that will be waiting a long time for lungs. A number of 90 is someone that is really sick and is in the hospital and needs lungs ASAP. So if I were to be listed, I would have a lower number because I am still able to function pretty well. I told him about my rare blood type and said that it concerned me about not getting on the list right now. I asked him if I were to be listed but wasn't ready yet for the lungs about declining the lungs. He said that we can't decline lungs simply because I am not ready for them or I would be kicked off the list completely.

So I do not know what to think at the moment. I am getting along, but I am just scared for the fact that at any moment this roller coaster ride will go barrelling down the hill too fast for me to keep up. I've become a member of a facebook online support group of pre and post transplant lung patients and there are so many that have had transplants 10-15-20 years ago and are doing great. That gives me such great hope. I also know that there are some that do not make it either. There was a 31 year old woman that just recently passed away in the hospital waiting for her lungs to come. I am so scared to get to that point in the game. I am trying to put my trust in God, and that has been a really hard thing just because I feel like I should be the one in total control. In the grand scheme of things I know that I am not. He is. I just want to be here to grow old with Doug...to watch my kids grow up, graduate high school, get married, and have kids. That's what most people want. I am blessed to have such wonderful family and friends and I love you all!! Once I find out what the decision of the doctors at Cleveland is, I will be sure and let you all know...until then....I'm still that caterpillar inching my way up that tree...

Cleveland Bound!

Headed back to Cleveland tomorrow and I'm a little anxious to say the least! I am not looking forward to the esophagus test that I have to do tomorrow at 1:30. I can't eat anything from 7 am tomorrow until after the test...which I'm not a breakfast person anyway, so I won't eat anything past dinner tonight. Tomorrow is mainly a bunch of tests and then Wednesday will be the appointments with the doctors. Doug and I won't head out until tomorrow morning since I don't have to be there until 10:30 for bloodwork. My last appointment of the day is at 1:30 for the lovely test...then who knows what. If anyone knows what we can do in Cleveland for the afternoon/evening, please let me know! :)

Wednesday will start out with my usual lung function test and 6 minute walk. I'm a little nervous about those results as well since my lung capacity has decreased 10% in just one years time. We'll meet with the gastro dr. and I'm going to ask him about the possibility of acid reflux surgery. I've found some things online linking acid reflux and my specific lung disease. Acid reflux can aspirate into the lungs and actually cause what's been going on with me. I've been told I have mild reflux, and I've also found that having acid reflux surgery could help improve lung funciton. It's worth a shot, right?!? I'm also going to ask my pulmonologist the same questions in hopes that I could get at least some relief in the meantime. Doug and I will also meet with one of the surgeons and see what he has to say.

We were told the last time we were there in September that the doctors will then all sit down and discuss my case and then decide if it's time to list me or not. I am not sure how long of a process this is...I'm hoping that it won't take too long for a decision as I am so impatient now as it is! :) My blood type is AB+, which is more rare...so maybe that will work in my favor and get me on the list. That is the part that really stinks and is really hard...knowing that someone else has to die in order for me to live. I really wish that there was some other way!

On a happy note, I had a most wonderful weekend full of love and laughter. :) My cousin came in from Montana on Thursday and stayed with us until yesterday morning. It was so great to see her and spend time with her even though it was for a short amount of time. She and I went to pick up our grandpa on Saturday and bring him back to my house for a little while so that we could all visit and he could see his great-grandkids. He will be 88 tomorrow and he looks great! He was telling me that he has cheated death 5 times and told me about each time. He told me that he knows I am strong and that I just have to keep fighting. I told him about my butterfly story and how I know that grandma Neff is always with me.

I'm still that caterpillar...but I'm making my way up that tree hoping to make my cocoon soon! :)

ER visit

I don't think that I could ever be a druggie. While I have to take many medications for everything I have I would much rather be "drug free". (wouldn't we all?) Seriously though...Doug took me to the ER (Good Sam) Sunday night/Monday morning. At 10 pm Sunday I started feeling a lot of pain again in my upper right back and in my upper right chest. It hurt worse when I would inhale, so I was taking shorter breaths so it wouldn't hurt as bad. Doug had to work his 6 pm to 6 am shift but came home about 1 am or so when I told him the vicodin that I took at 10:30 wasn't helping at all.

Getting to Good Sam, they did an EKG and a chest xray and of course both came back as ok. I was thankful for that, but my pain was still there. I think knowing that I am being followed by Cleveland Clinic is what makes these doctors not know what to do...or that they don't even want to touch me for fear of doing something wrong in the eyes of "The Clinic". So they gave me Morphine through my IV line as well as Toradol. I instantly felt the pain go away which was great. But then I felt the room spinning and like I had been out all night drinking. (hadn't felt that way in a LONG time!) :) So anti-nausea medication immediately followed and I was able to keep my cookies from being tossed. (thank goodness!) But I had Doug on his toes waiting for something exciting to happen. haha! Back to the druggie part though...I was so out of it and very loopy. Doug said the ride home was fun and interesting and he wanted to tighten the cord to my O2 around my neck a little so I would pass out and be quiet. :) (he was just kidding by the way...I think...)

We got home about 7:30 am and I thought I would sleep like a baby, but I was sadly mistaken. I didn't sleep well at all and still felt groggy from the morphine and woke up still hurting. I had very weird dreams and just felt really off all day. I told Doug I don't think I ever want those drugs ever again because of the way that I felt. So like I said, I don't think I could ever be a druggie. I did not like what I was experiencing at all! Just a few more days and we will be headed back up to Cleveland to finish testing and meeting with doctors. I sincerely hope that after the dr's discuss my case that they will finally list me. If I do not get listed, I don't know what I will do as this pain is getting to be too much anymore. :(

Getting Started

So as I tried to sleep last night I thought that perhaps I should start blogging. I've never blogged before but thought that it would be a good idea to start so I could keep everyone updated with my health since I do not get out much. :) Blogging will also give me something to do. Those of you that know me know that I need to have something to do! I went from going 100 mph down to like 5 mph and it's been hard! I miss working and seeing my co-workers. I also miss photographing the newborns and their first moments of life. I am hopeful that I will be able to get back to work after my transplant, it's just a matter of when and if I will be crazy at that point in time! :)

I don't have much of an update to give health wise. Doug and I will be going back to Cleveland November 1 and 2 and I will complete testing for transplant. I have to re-do one of the gastro tests and I am not looking forward to that one. I had told Doug after doing that test back in April that I hope I never had to re-do that test. Well, guess what? That's the one test (and the only one) that I have to re-do! The Cleveland doctor thinks that the results to this test aren't as bad as what the Dayton doctor thinks so that is why he is re-running it. We will speak with one of the cardiothoracic surgeons on the 2nd and he will go over what we can expect. I am interested to see what my lung function is compared to what it was the beginning of September. September 2010 my lung capacity was only 30%. September 2011 it dropped to being only 20%. I've lost 10% of my lung function in just a year! The doctors will all sit down and discuss my case and then decide if they are going to go ahead and list me or not. I am not sure how long we have to wait to hear that I will be listed. I hope that it won't be too long of a wait, but I do know we will not know anything while we are up there.

Over the last few weeks I've felt pretty achy and really short of breath. I did start getting an upper respiratory infection and called my doctor right away who prescribed me some antibiotics and he increased my prednisone. My chest is still feeling really tight and like I am breathing through a tiny hole made in plastic wrap. The oxygen has helped me quite a bit and I'm glad that I have been able to use that at home and at night. I still get out of breath walking around even with the O2 on, but it would be much worse without it on, so I'm thankful for even the tiniest bit of relief. :)