Patience is a Virtue....and....The First Call!

It is amazing the mix of emotions in the big bag of the transplant world. Obviously no one wants to have a transplant; but obviously a lot of people need them. There's a fine line between being too sick, not sick enough, etc, it is so confusing and toys with your feelings and emotions quite a bit. It's not as simple as...yeah, your lungs are crap, you need new ones, let's schedule you for next Wednesday and we'll get you all fixed up good as new. I wish it was. Maybe some day it will be. But this won't happen in my lifetime.

Each time I am in the hospital and I come home it is really hard. It is hard when I am in the hospital because I have such anxiety about what is to come. I am getting better and it is a work in progress though. I have leaned on Doug a lot and I do not know what I would do without him. He is an amazing man that God has blessed me with and he has put up with so much over the last few years with my illness. My hospital stays in Cleveland are the worst because he goes so stir crazy and they are bad for me because my anxiety goes so high that there are times I do not even want him to leave to get a bite to eat for fear of something happening. Crazy, I know because I am in the best care...and I also think of some patients that don't have anyone staying with them at all. So I am so lucky and so blessed and he deserves a medal of honor when I am all better again. :) When I come home from the hospital it also takes me a good week before I feel somewhat "normal" again. It's hard because I don't feel like talking or conversing much and for those of you that know me well, that's what I LOVE to do! ;)

So this patience thing. It's always been a struggle for me. I believe it is a struggle for everyone really. Who wants to be patient in a world that you can usually get what you want when you want it? I have learned patience since being diagnosed in December 2010. I've had to. At first my disease was barely noticeable and for everyone that knows me and how I've always been on the go and fairly healthy was blown away at the insanity of a lung transplant. Believe me, I was more then blown away. I started out losing weight thinking it was stress only to find out that my immune system was attacking itself. I looked fine on the outside, besides losing quite a bit of weight at the time (can't say I can complain there) ;) but on the inside things just weren't good. I was in denial for quite some time. To be honest, I think I was still in denial up until my latest hospitalization at Cleveland when the surgeon came in to tell me I was a good candidate and started explaining things and I thought I was going to vomit all over him. That was the point for me that it was all real. All going to happen. This is it.

I've known I've been declining slowly...just was hoping for some miracle that I wouldn't have to have surgery. Transplant is really no cure. It's a fix. I hope the fix will let me live until I am way way old! But there's just no way to know. Everything about transplant is scary but if I don't have it I do not like the alternative. I would take 5 more good years of breathing easy with new lungs over the last 2 years of being scared just doing daily things that make me short of breath, raise my heart rate, lower my oxygen. I am very hopeful with my lung transplant group on facebook. There are so many wonderful people on there with a great amount of support. There are so many of them 10, 15 years post transplant and that makes my heart sing with hope that this will be my outcome too. God is creating the perfect new set of wings just for me. I just needed to be patient. When I first heard I needed a transplant I wanted to do it as soon as possible just to get it out of the way! :) But have since come to my senses (thanks Doug and others) that just because I want it right now doesn't mean it should happen right now. Course, I think everyone has this mentality...if you can fix it,do it already! ;)

So on the the patience part again. Like I said, I've always struggled with it. My case was discussed in Novemeber 2011 and "declined" at the time because I wasn't "sick enough". I was disappointed but told myself that God had a plan and it wasn't time yet. My local pulmonologist though has wanted me to be listed quite some time ago...so I feel torn between him and Cleveland. When I was hospitalized at Cleveland in January they said they were going to list me then. I got my hopes up. Waited. Nothing. They waited until my February visit to see how I was and said that they were not going to discuss me at the time because my numbers were still "ok". So waiting until my May 7 visit to the clinic to see how I'm doing. I actually thought I was doing better, but I had actually gotten worse. My numbers all went down and Dr. Lane told me that they would discuss me that month (May) because he thought it was time to get me listed. He told me I would likely be low on the list...but my numbers and declining health with more need of oxygen warranted me to be on the list. I was starting to see the light here....then I end up in the hospital about 2 weeks after my clinic visit and was told I would definitely be listed. So I got real excited...and nervous too...and all of you out there supporting us through this journey got excited too. So I jumped the gun in saying I would be listed. Yes, I was told this, but I didn't have it in writing, so I am learning that until I see it in black and white I am (or should) just keep my mouth shut! I wasn't really listed while in the hospital (like I was told I would be) because I ended up having RSV. I was told the infection would have to be gone before I could be listed. This could be days, or weeks, or even months. Regardless, I was told that I would be part of teleconference discussion about getting me listed  (due to the holiday) but that didn't happen because of the RSV. I had to have bloodwork Wednesday May 30 and also an RSV swab and dependent on those would determine if I would get listed. I found out that day the RSV was negative so I would be listed!!! Again, I assumed I would be discussed as soon as possible...which would be June 4 since they meet every Monday. I emailed my coordinator on Thursday about a few things and also about when I would be discussed and she said not the 4th but probably the 11th. I was so brokenhearted! There's the patience again...I pleaded with her and said my RSV was negative and didn't understand why I was being put off again. She emailed back on Friday saying she and Dr. Lane fought for me and that I would be discussed on the 4th and she would talk to me then.

Anytime I've been discussed I've gotten a phone call early in the day so I thought yesterday would be no exception. The doctors would meet in the morning, calls by the afternoon and all would be great and wonderful with the world. Ha! My mom sent me an email though that helped me through the day. I want to share a tidbit of it here.  (hopefully she doesn't care I am sharing. :))

Dear Kara,
As I was reading the Upper Room this morning one of the posts spoke to me for you too and I wanted to share. It is from a guy named Adam from Dublin, Ohio. His writing is like the Psalms and is always a tribute to God. He says:

     "Good morning God. A beautiful morning has arrived. The anticipation of my day with You is so fulfilling to me. Just to know that You are here with me and love me is where I draw strength to make it through the day. Living inside Your love today will give me the breath I need to take each moment and make it wonderful. So draw near and let me feel You touch my soul. Let me breathe You in and hold You inside me. Show Your glory. For I love You in Ways I am yet to know or understand. Thank you for loving me so completely".

    I hope that this brings you some comfort-I especially liked the parts about "living inside Your love today will give me the breath I need" and "Let me breathe You in and hold You inside me." God is with you and He loves you!  
 (Still crossing my fingers and saying prayers)! :-) <3 Mom xo's
So I started again with patience. When 5:00 rolled around I was sure I wasn't going to get a phone call. Another "lung friend" that also goes to Cleveland told me she didn't get a call for her listing until 6:30...so I still had "hope" I would get a call but had doubts too. 6:30 came and went and my mood was very bad. Normally, I would've emailed my coordinator or would've called her before the 5:00 time. But I kept praying for patience and wanted to trust that things would work out like they should. I had actually written out an email to my coordinator asking if I was even discussed that day. I really had my doubts that I was. I figured I was pushed off. But I didn't press send. I prayed again and asked for more patience. I did tell myself if I hadn't heard anything by Tuesday afternoon I would call or email! haha! A call on my cell phone made me jump but it was from a friend wanting to bring food by (thanks, Brenda!!!) that lifted my spirits some but I was still bummed...it was 7 pm and I had heard nothing. Then lo and behold the other phone we have rings and it was Cleveland! I couldn't believe it! It wasn't my coordinator, but another one making calls. She apologized for the late call and said that I was discussed today and that it was agreed by Dr. Lane and Dr. Budev and the others that I definitely be listed for transplant! She did say though they wanted to wait until next week to do the official listing to make sure that I am completely over the RSV. My coordinator will call me next Monday with more information as well as what my lung allocation score is. I will also go back to clinic in 3-4 weeks to meet with Dr. Budev.

So patience is a virtue after all! Imagine that! :) I learned a great and valuable lesson yesterday in patience and trusting God more. He is the one in control. We are not. Deep down I know that, as we all do...but it was so much more validating yesterday waiting it out and not jumping the gun. So now I have to make it until next Monday when I will be definitely listed. (hopefully....for real this time...)and then it will be the unknown of "The Call" for new lungs. That will be a whole other sort of patience!

God is pretty amazing and I know he will carry me through. I also feel so blessed to have so many wonderful family and friends supporting and loving us though all of this. Doug and I just cannot thank you all enough for everything that everyone has done for us. We love you all!!