Friday, September 24, 2010

The First Appointment

Well the bad news is I have neglected this blog, however the good news is I have NOT neglected anything else in the process. Since the start of all the transplant hassle I have been focusing more on my family, friends, remaining healthy as possible and well just living in general. So I have not been able to spend as much time writing as I would like, but this was a choice I made. It wasn't like I let the time slip away from me. Actually it is the right opposite. I have grabbed on to time with both hands and am refusing to let go. So anyway with all of that being said I guess I need to give an update!

As most of you know by now I had my first transplant clinic appointment. This was basically a "meet and greet". We chose to stay in a hotel over night for this visit since we had to be at the clinic by 7:30 that morning. I had received my schedule by mail the prior week. So I was pretty informed as to what my visit was going to be like. So at 7:30 I had to be at the lab. My mom met us there since she didn't want to stay at the hotel. They were super nice. I have had labs drawn there before but it has been several years. I am a really hard stick and I had been drowning myself in water since around 5 am when I woke up and also the few days prior. I wanted to be really good and hydrated. I was explaining to the lab tech how hard of a stick I am when she told me to calm down and quit being wild. Ha Ha It was funny. Sam and I both looked at each other and laughed. So she stuck me once and got the blood! So happy about that! That was what I was worried about the most! I didn't want to be stuck a lot and be late for my next appointment. I was so thrilled I nearly jumped out of my chair! The only labs they needed were basic ones, like they would take during a hospital admission, so it was pretty simple.
Then I had to be at xray at 8:00. Xray is so easy but soooo annoying. I know I am complaining over something  little but seriously I HATE having to get undressed just for a thirty second procedure. I was also having to wrestle with my O2 tubing. We had my travel tanks that day which made it fairly easy. I was surprised at how easy I could walk around with no help at all. But I was VERY tired by the end of my final appointment.
Next, was my PFTs. I mean that test does not even phase me anymore. Since me and my doctor talked about transplant and it is here now and happening, those numbers mean nothing to me. Don't get me wrong, I don't want to see them drop any but the anxiety that use to come with that test is GONE! I actually laughed when my numbers came on the screen. I blew three times as hard as I could and the tech asked if I wanted to try again. Sam and I laughed. I looked at her and said, "I am here for transplant clinic." No need to stress about them anymore. Of course I would love to have an FEV1 of about 70, ha even 40 would be nice, but these numbers no longer tie me down. There is a freedom in this for me. Of course I wish it wasn't time for transplant, but there is also this relief I feel. Like help is on the way almost.
Anyway, no time to be deep and significant, time for details now, deep can be later. Then we went to the actual appointment. It was scheduled for 9 that morning and I was right on time! I felt really great about that. I wanted to really show the doctors I could pull my own weight and am responsible. Being on time is everything. I felt like I was walking into the most important job interview ever. Ha. So I get there and everyone, I mean EVERYONE was extremely nice!! They were so upbeat and positive, not at all what I was expecting it to be like. I just assumed it would be almost like a funeral, but it wasn't! They are not in the death business, although it does happen from time to time, they are in the giving life business. When I walked back to the room they were putting me in, there was this old man in a wheelchair with O2 and a mask on (to protect from germs) just like me. When I walked past him, his eyes opened wide, he pointed at me and looked at his wife and said, "She's just a baby." Oh man, that nearly broke my heart. I was doing so well. But when he said that I felt my heart twitch a little for sure. I just wanted to tell him that I was strong and I was going to be alright. It was just so sweet, it was like he was concerned for me. You don't meet strangers who are concerned for you anymore, it is a rare happening. It was really great. It meant a lot to me.
First a doctor came in, he wasn't a student I don't think, but he wasn't exactly on the transplant team either. His name was Jason and he was really nice. He asked a lot of questions. When he went out of the room I began to stick my head outside into the hallway and noticed the two doctors I am familiar with that take care of me in the CF clinic and who are also on the transplant team were no where to be seen. I did begin to panic a little. I asked a nurse who was walking by where they were. She informed me they were not there that day. I was a little disappointed. I had hoped seeing familiar faces would make it not so scary. However once the transplant doctor who was there came in and introduced himself I was comfortable instantly. He was very personal and had a great "bedside manner". He laughed a little which eased up the mood for sure. He basically just said I did need the evaluation. He asked me if I had any questions. Of course the one question I instantly asked was about the heart cath. I am nervous about it. He was so honest with me, and he has no idea how much I appreciate that! He didn't make it out to be a bad situation, but did warn of the risks as well. I felt really confident after talking to him about it. I mean the way I look at it is if I can't make it through a heart cath, then I really can't make it through a transplant. So there is no reason to worry about it. It is just part of the evaluation and it has to be done. I brought in a three ring binder with ALL of my medical records I have been collecting over the years. They are even organized under tabs. Ha. I had a fresh new tab for transplant. I was so proud of myself. I really wanted to show that I am worth this. This is a huge shot, a chance these guys will be giving me. They have to trust that I am willing to do my part and take care of these new lungs once I get them. I want to prove to them I can be trusted, that I will literally guard them with my life, and never take it for granted. Maybe it appeared that way. I hope so.
Then I met with a transplant coordinator, not mine because she was busy but a different one. They will be giving me visits from now on when I am in the hospital, not for my care but rather social visits, which is so awesome!! I am really excited about my new team caring enough to come around when they don't have to. So that was that. We left around 10:00. Really short and to the point. They did say I needed a letter from my dentist saying I have good oral health as well as my gynecologist. Fun stuff. The greatest part is I didn't break down, not even once. I wasn't a babbling idiot like I thought I would be. My doctor put me on anxiety meds when I came home from the hospital and after about a week I ditched them. I was really starting to wonder if that was the best thing to do but you know, I have been praying intensely and it is like it is gone. Whatever "it" was that was causing me to worry all the time has left.  I have a peace that is hovering around me. Sam can feel it too. God has this taken care of. I am actually kind of excited. Not saying I am completely fearless now, because I am not. I am still human, and I still have moments when my daughter hugs me and I don't want to let go, or my husband is telling me bye and I can't quit saying I love you. But you know it's a gift. I met with my pastor about two weeks ago because I was so depressed and about to lose my mind. He told me this was a gift. How lucky am I that I get a chance to get everything in order? To call long lost friends? To make amends? To heal relationships? Some people die instantly, never knowing it is coming and they don't get the chance to write their daughter letters for the future and tell those around them how much they mean to them. I do, I get that chance. Another point my pastor helped with were the WHAT IFS. There are so many of them. He said from now on, answer them, then they will go away. So I did. I started answering the, What if I don't make it? What if the lungs don't work? What if, what if what if. Once I answered them, that was it. It took the fear away.

So today I am at peace. My evaluation is scheduled on Oct 11, 12, 13 and the 19th and 20th. My heart cath will be done on the 13th and my TB test results that day. That is it for the 13th. They scheduled the cath on a day by itself for me. That made me feel a lot better. I just know I am not going to feel like running around afterward.

Please be praying for me, for us, for this whole situation. Now I have to go pick up my purpose, she just got out of school! Love you all!!


  1. So glad to hear that your first appointment was a piece of cake. Also, glad that you have found peace about this (and anything else that was worrying you). Good luck on the eval! Keep us posted.

  2. i went through transplant this summer, one of the hardest things i have ever done in my life....the first few weeks are the hardest, but after the fog of medication lifts, and you start to feel stronger, and you feel those lungs working, it's all worth it!
    i am now at 50% lung function, i got transplanted at 12%...and it feels gooooood, real good! haha
    good luck on your journey! cause a journey it will be!

  3. Summer I can't ever read these without crying! I hope and pray that someday I can have a strength like yours in the face of uncertainty! You are such an inspiration to me and my family!!