Merry Christmas!

So it has been quite awhile since I have posted in my blog. Last time I posted it was right before my last visit with Cleveland. Life has been pretty wonderful and I haven't really been on the computer much, so I apologize for no new updates. :)

I went to Cleveland at the end of September. The bronch I had was a little better then the time before. I still remember the beginning of the procedure, and I recall the doctor holding my hand towards the end. But I made it through and there was no rejection that time around! Yay! I'm currently on a lower dose of my prednisone, so I'm happy about that. Doug and I will go back up in January for another check up and hopefully we will get the same results of no rejection. As for my eyes...there's nothing they can do for them. I do have cataracts on both eyes, with my left worse then my right. I will likely have to have surgery on them to get them removed some time next year. My vision other then that is the same in my left eye. Since the stroke happened and it is in my brain, there is nothing that can be done to fix it.

Life has been great. My home pft's have been more then fantastic...slowly going up and up since September. I really feel like a butterfly still emerging from her cocoon. Each day I get stronger and break away a little more. My meds are still really messing with my stomach. Mornings are my worst with this and it's been difficult to get my day started. Despite the tummy troubles, I am trying to get out and enjoy my days. I have photographed just a few things here and there. One being amazing twins that were miracle babies. I told their mama that I just had to photograph them because they are miracles just like me! :) I haven't done a lot of my photography yet...I still need to build up my stamina...but I really hope to get back to it soon as I LOVE and miss it!! I've been able to go on a paranormal investigation with a high school friend at Bear's Mill. Bear's Mill was founded by ancestors of mine; Gabriel Bear (my great-uncle - times four), and Emanuel Hershey (my great-grandpa - times four). It was a really neat experience and something I had always wanted to do. Just a few days ago I was able to be in the kitchen baking cookies and making hard tak candy for quite a few hours. I haven't been able to do that in a very long time!

And then there's my donor. I think about my donor a lot. And I mean a lot. I am so very thankful for him/her and this wonderful gift that they gave not just to me, but to my family also. If it weren't for them, I may not be here to celebrate Thanksgiving, which is my favorite holiday. If it weren't for them, I wouldn't be able to do our family tradition of making gingerbread men on Christmas Eve. I feel that I am living my life not just for me, but also for them. I sincerely hope that I can meet their family one day so that I can tell them in person how much I appreciate this gift that has been given to me. I want to know if my donor and I had similarities...if they were married and had children of their own. I know their family is mourning them this Christmas while mine is celebrating me this Christmas. I hope that it is God's will that I will someday find out who my donor was. Words will never be able to express how very thankful I am, but I would sure like to have the chance to let them know.

I just celebrated 5 months two days ago on the 18th. Doug and I took some cookies and candy around to a few places that I hadn't been to in awhile and it felt great to have the energy to do so! If you aren't already, please consider becoming an organ donor. It is truly the best gift that you can give. The gift of life! My donor likely saved many lives by just his/her one life! You can't take your organs to heaven with you...so donate them to someone that could use them here on earth! Slow down and enjoy life...do the things you love and enjoy. Life is way to short to be unhappy. Enjoy the little things for in reality they are the big things. Once a moment passes you will never get it back again. Tell your loved ones you love them...and show them that you love them. Be a friend to everyone you meet. Love and happiness is contagious. :)

Merry Christmas to you all and I really hope that you all have a happy, HEALTHY, and blessed New Year! :)

Love to all, Kara

 

 

How are you? and other common questions

I wanted to get on here sooner and blog, but the week got away from me. A week ago on Saturday, heaven gained another angel. One of my old co-workers lost her long and courageous battle with cancer. She had taught Austin and Cameron in kindergarten and was an amazing teacher, woman and friend. Even though she had cancer and I had my lung disease, we had a lot of things in common and shared notes often. I am sad she is gone, but I rejoice that she was a part of my life and that she is now pain free. I look forward to seeing her again!

I have been having many more good days then bad lately! I am so happy with my progress in the last 2 months since transplant. I still feel at times that I am having an out of body experience...that this still isn't really me, that it isn't really my life. But it is. The last few days I have felt great...and have had that awesome "nostalgic" feeling...the kind where you are young, carefree, not a worry in the world. The kind that gives you that feeling of driving in a car on a warm fall night with your windows down and the cool air rushing through. I had one of those nights last night. We had went to a friend's house for pizza, and to see Bella, our dog we had adopted and then ended up having to find a good home for because we unfortunately could not take care of her like we should. The night was perfect for me...family, friends, laughs, but most of all just being alive and breathing in the fresh air. I commented to one of our friends as we walked across her yard to go see Bella across the road that 3-4 months ago I would not have been able to walk that far. How I would've been so out of breath. I also said that I would've been dreading the short walk knowing how out of breath I would've been. But yesterday as we walked over (twice for me!) I wasn't out of breath and I could fill my lungs with the wonderful, fall, country air! It was an awesome feeling and one that I will not forget. I said a little prayer for my donor at that moment, thanking him/her for their lungs that once gave them life, now gave me a second chance at mine.

So I often get asked many questions. the first one of course is "How are you?!?" Before transplant I always hated this, but I know no one really knows what else to say, so this is it. I would always reply, "I'm here."...or "hanging in there." This was the truth. I was here and I was hanging in there. If I was out and about (which was rare) you would likely see me with a smile on my face. To be honest, smiling was the last thing I wanted to do. All I wanted to do was curl up in the fetal position, stick my thumb in my mouth and cry. Sure I had all of the questions of "why me" and sometimes even maybe felt sorry for myself. But I would pull myself together to produce a smile and changed my thinking to "why not me?" and what lessons can I and will I learn from all of my experiences? Daily living was so very hard....imagine yourself getting up every morning and before you can make it to the restroom you feel like you have ran a marathon. Would you feel like smiling? Would you feel like moving at all?

Today when I am asked, "How are you?" I still smile (usually it's not a fake one!) :) and I usually say that I am doing pretty well. This is the truth, as I am doing pretty well and for the most part I am feeling pretty well. However, I still feel like I am not being totally honest. See, what always sits in the back of my mind is that things will never be the same for me. I know everyone goes through changes in life, and this is a major change for me. A lot of people think that now I have had my lung transplant that the "old Kara" will and has returned. That couldn't be farther from the truth. Sure, I am still me, but I am different now. I have changed from that caterpillar and have emerged as a brand new being. What people do not understand is that transplant is not a cure!!! It's not. Sure, it "buys us more time", but I constantly have to be on the lookout for rejection. In fact, my last bronch (Sept 5) showed I had minimal rejection. A1 B0; Airways 1, Bronchioles 0. No rejection would be A0 B0. I am being treated with prednisone for now with the hope that the rejection will go away. There is the chance that it will not go away, and there's the chance that it could/would get worse. I am staying optimistic though and I will go back for another bronch on Sept 27 to check and see if it's still there. Rejection will always be in the back of my mind, and something that I will get multiple times over the course of the rest of my life. When I had my transplant, I was trading in one set of problems (my old lungs that didn't work) for another set of problems (new lungs that work, but the possibility of rejection, meds to take the rest of my life that can cause cancer, or the need for another organ transplant). None of that may happen, but with me being so young, it is a strong possibility I would have to have a 2nd lung transplant...or a transplant for my kidneys because of the damage all of the meds did to them...or I could develop cancer from all of the meds I take...the list is practically endless. Now I'm not saying that I am sitting around now worrying about all of these things, because I am not. I am trying to still recover from my transplant (technically I should still be in Cleveland!) and live my life. Heck, I could get hit by a bus walking across the street! We do not know when our time is up...I thought perhaps mine was and I was ready for whatever lie ahead. Now I am just thankful for this second chance I've been given!

Another common question I get is, "So everything is great now?" I answered this a little bit in the above paragraph. My answer to this is "to an extent". Everything will never be "great". I still have to be very careful in what I do and where I go because the risk of infection is greater for me then for anyone that is "healthy". That is why I wear my mask all of the time. (although I didn't wear it last night at our friends...I probably should have, but we were outside with the breeze, I kept my distance from others, and for once I just wanted to feel "normal"! :) All of the medications I am on suppresses my immune system and therefor I am more prone to catching things and I will likely end up in the hospital over something that a "healthy" person calls the common cold. The sniffles to you = respiratory infection and time in the hospital for me.

Which brings me to another question I get asked...and maybe not get asked, but the stares..."Why the mask?" and/or "How long do you have to wear that?" I laugh because I can clear the room (or elevator) rather quickly when I have my mask on and people don't know who I am. I have told Doug that I am going to put a sign on my front and back that says, "Don't worry...it's not contagious. I'm protecting myself from YOU!" People think I am the one that is sick, but in actuality I am protecting myself from everyone else's germs. I've got to protect these new lungs!!! So that is why I am wearing it. As to how long...I haven't really been given a time frame. Cleveland told me for at least the first 3 months when I am out and about. If people come over and they are sick, THEY need to wear a mask. (However, it's easier if just I do....BUT...if you are sick...or your kids are sick, please don't come visit!) With flu season just around the corner though, I will be wearing it out everywhere for at least the first year, and maybe even after that. I do not like wearing the mask. It is very annoying...hot...steams up my glasses....but, it is protecting my lungs from germs, and keeping me healthier, so I really am not going to complain. So there is no answer as to how long. I could probably stop wearing it after 3 months (but to clinic, hospitals, schools for the first year) but I probably will keep wearing it after the 3 month time frame.

I am still trying to adjust to my new life and what I can and cannot do. I am still going to have my bad days, that's for certain. It will take me awhile to get back to my "new" normal, and I am going to have some rocky roads ahead....but I am not going to complain. I'm going to cherish each day that I am given and look at it with a new set of eyes. (and lungs!) I am not sure if I will be able to return to any type of work, my doctors have not said and I still do not know what's going on with the vision in my left eye as that has not come back yet either. Doug and I will be going back up to Cleveland at the end of the month for more appointments and tests. I will see the eye doctor and hopefully I will gain some insight on my sight! ;) I will also have another bronch to check on the rejection. I just hope that I do not have a repeat of the last bronch where I remember EVERYTHING!! :(

So to answer your questions: Yes, I am doing fine, great, fantastic! For the most part anyway. :) Yes, I have to wear the mask and I am uncertain as to how long I will wear it, but it is protecting me from many airborne germs. Most importantly keep in mind that my transplant is not a "cure". It is an answer to a prayer and I am so very thankful, but I will continue to live a different and more careful life from now on. If you or your kids are sick (or you've been around someone sick) please keep your distance! It's not that I don't want to hug you or be around you, I just don't want or need the sickness as it can and will make me very sick and my lungs will not be very happy!

Breathing Easy

“Adding wings to caterpillars does not create butterflies, it creates awkward and dysfunctional caterpillars. Butterflies are created through transformation.” ~ Stephanie Marshall

It’s been a little while since I have last posted on here. I apologize….but…I’ve been living life a little more each day! :) It is very nice to be able to wake up in the morning and be able to do things without getting out of breath and not having to lug around the oxygen tanks. I felt so tied to the house with my “lifeline” of the oxygen concentrator. It feels weird not having the nasal cannula in, but I am getting used to not having it! ;) I hope to never have it again!! I still have my bad days but they are less frequent then before! The meds are still doing a number on my stomach and I am constantly taking Zofran to help try and combat the icky feeling. Sometimes it helps and sometimes it does not.  My eye is also still not right and it still throws me off quite a bit, but I am trying to get used to it. I’m still hopeful it will eventually come back. Only time will tell.

Doug and I went back to Cleveland on Tuesday and Wednesday of this week. We left Monday night because I had to be at the clinic early on Tuesday morning for tests. After lung transplant the doctors need to check the stomach and esophagus to make sure how we are digesting our food; check for acid reflux and heartburn. It is possible for the acid reflux to aspirate into the lungs…which would obviously be no good! If they find the reflux to be bad enough, they would do surgery to correct it. So the first test was a gastric emptying test. I had this test done once before at Wayne. It was gross at Wayne…I had to eat oatmeal (yuck!) with the radioactive dye in it, and then had to lay on a table for an hour while they took pictures of my stomach. On Tuesday though, I got to eat scrambled eggs and toast with the radioactive dye. My taste buds aren’t what they used to be, so I didn’t think they were too bad! :) The test was 4 hours, but they took 1-1 minute picture to start, then waited an hour, took another 1 minute picture, waited another hour, another picture, then 2 hours and a final picture. The results from that was negative; my stomach was moving things like it should! Yay! The doctor explained that after lung transplant they have had many patients with a slower stomach; in other words their food digests much more slowly.

My second stomach test that day wasn’t as easy as the first. The esophageal manometry test is seriously no fun. I’ve had it done twice before and was somewhat prepared. I even had the same tech as last time. This test involves numbing one side of your nose and inserting a large tube thing down it and down your throat. The tube is pushed all the way down your throat until it gets to your stomach. (all the while you swallow water to help it get there.) This time around I gagged quite a few times and thought that I was going to see those scrambled eggs again. Luckily, I did not…and we were able to finish the test rather quickly. I also had to have a PH probe in for the rest of the day with removal at 8 am the next day. Though the tech said that Doug or I could remove if we needed to. The probe was just like the test I had just done. The tube (though skinnier thank goodness) went down my nose, and down my throat. Once in place, the tube was taped to my cheek and also to my neck. I had a gadget to push a button when I ate; when I took meds; when I slept; and when I had heartburn or acid reflux. This thing was no fun!!! I know that I shouldn’t complain because it could be a lot worse….but it did really stink! Doug and I were going to go out to dinner with friends, but eating and talking were both an issue for me. It was making my throat hurt even when I was just sitting there. I had tried to take some of my many meds (I had to skip all but my anti-rejection meds for the tests) but I had 2 get stuck, so I called it quits on the meds. (again, except for my important anti-rejection ones!) I was quite miserable. I was very tired and I did find a somewhat comfortable position lying on my right side…the tube didn’t seem to irritate my throat that way. The only issue with lying on my right side was my incision…this is the side that has bothered me more then the other. Come 6:00 AM, we were up (didn’t sleep well) and Doug finally pulled the tube out for me. Ahhhh!!!  

 

I was actually looking forward to my Wednesday appointments and bronch. (crazy, I know!) I wasn’t scheduled until 7:25 to start the day, but I wanted to get there early and start with appointments with the hope that I could get my bronch in early and we could head home. We did arrive at the Crile building about 7 AM and I had 17 vials of blood taken from my arm! It’s been awhile since this much had been taken from my arm at one time. Next up was the pulmonary function lab to check on my lung capacity. I was ecstatic and actually did a “happy dance” when walking out from the exam room to Doug in the waiting room. I told him that my numbers went up greatly! When I was there August 14 (a little over 3 weeks ago) my FEV1 (Forced Expiratory Volume….amount of air I can forcibly exhale in 1 second) was 81%. Before transplant (July 2) it was 16%! Quite a difference!! But on Wednesday…September 5, my FEV1 was 93%!!! My FVC was 80% and that was up 10% from August 14! Doug was very pleased and told me that I’m probably doing better then most people that don’t have any lung problems. :) After that test, I went for the usual chest x-ray and then we dropped off the recorder box from the lovely PH test the day before.

 “The butterfly counts not months but moments and has time enough.” ~ Rabindranath Tagore

Next up we met with one of the post-transplant pulmonary doctors. Doug and I really liked him. He had a great sense of humor. He is more my type of doctor. Sure, the other doctors there are fantastic…but there was something about this one that I enjoyed more and I think most of it is because he can joke around and also be serious….and I know how to take both. Anyway, we spent close to an hour with him I believe. I think we learned more from him then we have some of the others. First of all, he was VERY impressed with all of my numbers and with how well I am doing. He saw my 93% for my PFT’s and all he kept saying was “Wow!” He believes I can still get higher, but told me I am pretty high so don’t get disappointed if next time there isn’t a huge jump. Here I thought I had done slightly “bad” because my throat was hurting from the previous days events. My incision was also hurting some so I felt like I couldn’t inhale as well as I had been. I guess not since I had a 12% increase! He reviewed my chest x-rays and remarked how great they looked in comparison to what they used to look like. He also showed us where the wire holding my sternum together was. (Doug and I didn’t know that the wire was in there!) He told me that I will set off the metal detectors so to be aware and also cautious of being “strip searched”. Haha! I asked him a few questions as to what I could do or couldn't do yet. He okayed me to drive, yet I don't feel too comfortable doing so because of my eye. Doug let me drive home from Greenville yesterday and I also drove up town to get my hair done yesterday, and I picked the kids up from school today. I did fine, but I still don't feel 100% confident in driving with my eye like this. I also asked the doctor if it was ok if I got a massage yet or not since I have a gift certificate for one that expires in December! He said ok, but maybe wait a tad longer just for me to be comfortable. One other thing I asked him about was if I could get my hair colored or highlighted. (Getting tired of those grays!) ;) He just looked at me, turned to his computer, and typed in his notes, "Do whatever you would like with your hair". Doug and I got a good laugh out of that.

 

I also asked him if the biopsy results from my old lungs were back yet and he said they were. He went on to read from the report and commented that it was confirmed I had Bronchiolitis Obliterans and that it was caused by my Rheumatoid Arthritis. That was a relief finding out that it was BO for sure that caused all of this. It still really blows my mind that I went from being healthy to being so sick and needing a lung transplant in such a short amount of time. Another thing that he talked to us about was that I have a positive peak flow antibody. (I think I have that correct.) This has to deal with my donor and the antibodies that have developed with my lungs. He said this is a part of rejection if not treated and they have debated on whether to treat it or not. Since I am doing so well…my PFT’s are increasing, my bronch’s have come back fine…then they do not want to treat it right now. He explained that as long as I am doing well I could “pull out of” this antibody thing. So that is what we are hoping for. Every day I keep track of my temperature (anything above 100 warrants a call in, and could be a sign of rejection), my weight, my blood pressure and pulse in the AM and PM, my blood sugars four times a day, and microspirometer readings in the AM and PM (a drop in these could also mean rejection). As long as I am vigilant about keeping track of all of this, I am sure everything will be okay.

The last thing left to do on Wednesday was the bronch. For this procedure, you are given twilight sedation and a scope is put down your nose and throat. The scope takes pictures of your airways and a small part of your lung is taken for biopsy. The part taken for biopsy is the surefire way to tell the doctors if you are in rejection or not. I didn’t have any bronchs pre-transplant. I was told this was too dangerous for me. This was the only way to determine if I had Bronchiolitis, but they couldn’t perform it so I never knew for sure that is what I had. (until they biopsied my old lungs and confirmed the diagnosis) The first bronch I had was right after transplant. I was still under sedation so I do not remember any of it. The second bronch I had was August 13 and I was nervous because I didn’t know what to expect. Before going back for the procedure, I had to do a nebulizer with Lidocaine so that my throat would be numb. This isn’t much fun, but it wasn’t horrible. Once I was back there, the atmosphere was actually lively and I felt relaxed. I was given the “good juice” and my eyelids got heavy and before I knew it I was out for the count. I do not really remember much of anything until the next day. I recall asking Doug as we left for a cup of cheddar broccoli soup, and I also recall eating it as soon as I got into the car. I do not remember anything much other then that though. :) I felt great the next day because I had gotten so much sleep!

So this time around I figured it wouldn’t be much different. I even commented to one of the nurses…”Is it wrong that I am actually kind of excited for the bronch?” She didn’t really respond, which I should’ve taken as a sign that things probably weren’t going to go as planned. I think I have a start to a cold, so doing the numbing nebulizer wasn’t great this time around. My throat was numb making it difficult to swallow and I was coughing from gunk in my throat. I would try and swallow but would end up choking on my spit. I get wheeled back to the procedure room and it was a different doctor this time. One of the nurses helping with the procedure told me they would give me the juice, put some gel in my nose that I would have to suck up, put a towel over my eyes to protect them from the procedure, and then they would get started. As she said this, I just felt like this procedure was going to be a lot different from the last one. Boy was I right! (I usually like to be right, but in this case, not so much!) I got the “good juice”, but my eyelids never got heavy. The towel went over my eyes and I could feel myself starting to panic more because I don’t recall any of this from before. Then the gel in my nose…sucked it up…then they started inserting the scope in my nose. At one point during my many gag sessions, the other nurse in there said aloud that I was wide awake and asked the doctor for the ok to give me more good juice. He gave the ok (I think) and I got more, but I was still wide awake. I heard the doctor keep saying that I was doing great and we were almost done. Easy for him to say. Well, I did survive…and the doctor and the fellow assisting left the room leaving me with the 2 nurses. I asked one of them for a suction to get the extra spit accumulating in my mouth that I couldn’t swallow. I didn’t say much other then that and was wheeled back to my area for “recovery”. (I use that term lightly!) As I’m being wheeled back, I see Doug with the nurse that was there earlier. I looked at Doug in the eye and told him, “That sucked! I was wide awake for the entire thing!” As I was blurting this out, I noticed the fellow that was assisting the doctor talking to another patient right across from my area. As soon as the words left my mouth his head jerked around to look at me. I didn’t really care though because I was just being honest! He went on with his conversation and left. A few minutes later, one of the nurses from the bronch room came to me and told me that if I felt uncomfortable during the procedure that I had every right to write a letter to the department explaining my experience. She told me that that particular doctor is “old school” and he doesn’t believe in a lot of sedation. (obviously) The way that she talked and the fact that she came back to talk to me, gave Doug and I the indication that she felt bad for my experience, that it has happened to others, and that she didn’t really agree with it. Even though she didn’t actually say this…I felt this was what she was trying to tell me. I had reports of both bronch’s and it lists what kind and how much sedation/pain meds are given and I compared them. I had quite a bit more for the bronch in August compared to the one this past week. I’m not sure if I will write a letter…but I do know that for my next bronch next month, I will be asking to get the equivalent from the bronch in August.

As of Friday afternoon, I still do not know the results of the biopsy. I did call earlier today, and my coordinator called me back. She said that the results weren’t back yet but the preliminary results are negative. She will call me on Monday though and give me a definite reading. I will probably say something to her about the procedure then too.

I still have not heard anything back from my donor’s family. I know this process could take a little while. I sure hope they will contact me as I would really like to get to know my donor. I would at least like to see a picture of him/her and know who they were and where they lived. I guess whatever God sees fit for me to know, He will provide that information when the time is right. And perhaps that time will never be right.

I found some really neat butterfly quotes that I threw in my blog post here and there. :) I thought they were neat…and I have a few more too! :) Doug and I just want to thank everyone again for all that you’ve done. Prayers, phone calls, texts, cards, meals, gift cards, donations…everything is greatly appreciated!!! We can’t thank you all enough! I (we) feel that God gave me a miracle and I plan on living life to the fullest with no regrets! :)

 

An exchange of thought between a caterpillar and a butterfly:

Butterfly: the change you see in what I was and what I am is due to what I did when I was you. I made change happen! I became the change.

Caterpillar: Don’t be so proud of yourself, I am there and will always be, to remind you of your past. You are inspiring, but I am the inspiration. They look AT you, they look UP to me.

~Manali Oak

 

 

A butterfly says, “The caterpillar – me is history; my metamorphosis, a mystery; and today…today is a present; my struggle gifted me.”

~ Manali Oak

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.....