Cleveland Part 2!

So where did I leave off..Oh right, Sunday night. Like I said we had a really good weekend. Did not do a whole lot but relaxed ~ which is what we both needed. Monday morning was going to be the start to another very long week.

January 16- we had to be at the Cleveland Clinic at 8:30am. My first test was at the molecular imaging department. They injected some dye in me and then took pictures of it going through my veins, not nearly as cool as it sounds~ trust me. Then I had to go back to the lab to have more blood drawn, I swear by the end of the evaluation I had at least 60 vials of blood drawn from my body.  Then we went to the Pre-Admissions department for the procedure being done to me tomorrow. Here they asked me random questions and took some more blood (surprise, surprise) and I met with the Dr. who was going to be doing the procedure. Finally it was time to go home!  We headed back to the hotel, changed and then went to dinner at a place called Brio’s. It was very similar to Bertucci’s.

January 17- we got to sleep in a little because I didn’t have to register for my procedure until 10:30. So, your probably wondering, what is the procedure they are doing? It was a Cardiac Catherization. I myself had no idea what this was. When I found out, my mom had to pretty much sit on me in the wheelchair to stop me from running back to Boston (well my mom sitting on me and the mere fact that my lungs would not allow me to run anywhere).  A cardiac Catherization is when they put a rather large IV in one of your main veins. You can get access to a main vein in one of two areas 1) Your neck and 2) Your groin. They were going to go throw my neck aka my jugular. Oh, I forgot to mention, you are wide-awake for the whole entire thing… :( I was freaking out, literally.  So we get there at 10:30 and I don’t get called till 12:30, 2 hours of anxiously waiting for this test to get done. (I think what made me so scared is I remember watching a Law and Order SVU episode and detective Stabler said the quickest way to kill someone with a knife is to stab them in their Jugular). Finally they wheel me in and have me change into their fashionable procedure gowns (which, I seem to be wearing almost as much as my own clothes this evaluation). They started giving me the numbing medicine, Lydocane, which burns when injected. Finally they start with the IV.  It hurt, a lot and I could also feel a lot of pressure.  FINALLY, after 30ish minutes they where done :).  That was the only thing we had scheduled for that day. But I developed a cough and so I texted Dr. Budev ~ yup I said texted my Dr. how cool is that? Anyways, I texted her to tell her about the cough and she said that I should go to the lab and give a sputum culture (sorry if that grosses you out, but that is what she said, haha). So I did that and then my mom and I finally left to go home. We were both drained from the day so we hung in ordered room service and I watched Teen Mom and my mom of course watched the Australian Open.

January 18 – Another 6:30am wakeup call. Our first appointment was at 7:30 I had to have a cat scan of my sinuses. Then we had to go back to the pulmonary department so they could once again try to get a dreadful blood gas on me. The point of a blood gas is that by getting blood from your pulse it will give the Drs. a precise reading on my o2 and my Co2 level and some other random things. But the o2 and the Co2 are the most important. I knew how important it was for them to get it so, I shut my eyes and thought of literally anything else but what was being done. They got it! It turns out my o2 level is 81% (on room air) and my Co2 level is 47.  One is really low and the other is slightly high ~ can you guess which is what?  After that I had to go to the nose Dr. he basically looked at my cat scan and then…wait for it…had to stick a small camera up my nose.  His findings ~ I have a typical CF nose (shocking!) other than that though my sinuses looked pretty good. I am not sure how the inside of anyone’s nose can look “pretty good” but I will take it :).  After seeing him we where done for the day! We went back to the hotel, chilled out for a little while and then went to the cheesecake factory for dinner.

January19- my last day of the evaluation.  I was scheduled to meet with Dr. Budev at 8. So my mom and I get there and although we are a lot less nervous to meet her this time than we were the first time, we both still had the jitters. She comes in and sits down and starts looking over the results from all the test I have had done the last two weeks. Then she starts explaining the findings of this test and of that test. I then asked her a whole lot of questions because although it will be my third transplant, my second double lung transplant, the whole cadaver and the waiting process were completely new to me.  She then explained, that because I am so petite I would most likely need child lungs. Also because I already have donated organs in me they have to be lungs that don’t carry the same type of antibodies as the already donated organs. Because if they did they would fight each other and well, that would just be really bad. She said that if I became very sick and was basically on my death bed that they could take adult lungs and then cut them down to fit my lung cavity but that, that is very risky because they have to cut the lungs exactly right. She then said that she and her team like to have all their patients duel listed. Which means, that I will be listed at two places, which will increase my chances of getting lungs faster. We discussed other hospitals and both agreed that Duke University Hospital in North Carolina would be the other place for me to be listed. Now, I am all for making lungs available to me the fastest way possible but I am also very hesitant on being duel listed. Mainly for two reasons 1) I REALLY want my transplant to be done at the Cleveland Clinic, I can’t stress enough on how comfortable I was with the entire transplant team and know that I am meant to have my transplant there (I know, redundant, but I can’t stress it enough) and 2) I would really prefer to never have to go through a transplant evaluation again.  After talking for about an hour, she told me that she was going away for ten days with her family but that her phone is international and I could text her if I needed to.  She said that on February 6^th would be the first team meeting she would be at after returning home.  Dr. Budev wants to be the one to introduce me to the team so she will during that meeting (the meetings are when they as a group decide on whether to accept someone as their patient) Dr. Budev said that, that afternoon I will get a call to let me know on the final decision. Then from there they send out my information to the state of Ohio's transplant list for them to accept me.  By February 10^th I should be listed and that’s when the waiting game begins. She also said that they do not have any results from the sputum culture yet but that she would have the results sent to MGH as soon as they came in. Finally, we ended the meeting with hugs and me and my mom feeling more confident than ever in the Cleveland Clinic.  Our day was not quit done though. We were scheduled to meet with one of their transplant surgeons. We met with Dr. Johnston who coincidentally, did his fellowship as a thoracic surgeon at MGH. He knew the entire MGH transplant team and completely understood why I did not want to have my second transplant there. I also had a list of questions for him. Like, can you use the scar from my first transplant, how many chest tubes should I expect and basically all surgical type questions. He seemed like a very confident surgeon, which in my opinion is one of the best type of surgeons you can have. I mean who would want a surgeon who is not confident in what he is doing, haha.  After meeting with him it was about 5 o’clock so my mom and I decided to just head to dinner instead of going back to the hotel first. We ate at a place called Parallax (per Dr. Budev's recommendation) and it was the best food I had eaten since the two weeks I had been there ~it was amazing.  Once we got back to the hotel it was about 9:45ish, just in time to watch the Jersey Shore :).  Oh, but the night does not end there. I go to plug my portable oxygen machine in the one I was given by the oxygen company Denmark and it doesn’t work. My machine still had some oxygen in it but the battery was running very low and I also needed to make sure that both batteries were charged for the plane tomorrow. Freak out session begins. My mom and I are on the phone with Denmark asking what we can do and there response ~ figure it out, there not in Cleveland so why would we think they could help us. Along with a wall charger we were also given a car charger that still worked. So my mom and I went to Wal-Mart (luckily they are all 24 hours in Cleveland) to buy an adaptor that allows you to use a car charger inside. We get home and try it out but unfortunately it is not powerful enough to charge the oxygen machine. So my mom and I had to spend 6 hours in the car so that both my batteries could charge. Needless to say my first phone call when I got home to Boston was to switch oxygen companies.

January 20  - We get to come home to the best city ever, Boston! We drove to Landmark Aviation, where we met our pilot, Lyndon. He has a beautiful plane that was going to take us the entire trip. No stops, from Cleveland straight to Boston. He also said he would drive us home since he only lived in North Andover.  We finally arrived in Boston around 3:30ish! I was so excited to see the rest of my family and my babies (my dogs). It was a long and sometimes painful two weeks but it was what we had been waiting for, for almost 5 months. Before the evaluation everything felt like it was just stuck but, after having the evaluation it feels like everything is finally moving forward and I am that much closer to living a normal life again! And although, it was a long two weeks some of the things that kept me sane was, my mom, words with friends, angry birds, and being able to Skype with my friends and family! Ashkate13 is my Skype name ~ add me so we can chat :)

Hope that fills everyone in on my entire trip to Cleveland. I know I had said I wanted to try and do a video blog but…meh…that didn’t happen, haha. I have a Drs. appointment tomorrow (technically today as it is 2:30 in the morning) and they should have the results of the sputum culture. Hopefully tomorrow goes well :)

Also please check out my webpage http://www.breatheeasyforashley.org/

and also my video(different from the previous one) http://www.youtube.com/watch?v=TrYtrjKboIU&context=C3d17fb6ADOEgsToPDskLTvH4ZNfOnRj3BHc6VRNY0

Talk to you all later ~ Breathe Easy,
Ashley