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

Cleveland Part 1

Long Time No Talk!...So sorry everyone that it has been so long since the last time I updated my blog. There has just been so much going on. 

  On January 8^{th -} Angel Flight flew my mom and I out to Cleveland. Our first airplane was a small plane that was shaky during take off and landing but was fairly smooth sailing once high in the sky. The pilot for this plane was a super nice guy named Joe from Beverly MA.  He flew us into Syracuse, NY and we would then take another plane to Cleveland. The second leg of our flight to Cleveland was on this beautiful 6 person jet. We flew with the pilot, Jeff, his girlfriend, Julie and their adorable dog rainy. They were also very nice and the flight was very easy. Finally after a day of flying we landed in Cleveland, OH.  Our car was waiting for us once we landed so my mom and I headed to our hotel. Now, I did not really have any expectations on what Cleveland should look like but I also did not expect the area that the Cleveland Clinic is located in to look like it did.  We finally made it to the hotel and pretty much ate dinner at the hotel restaurant and went to bed. We had to be up very early the next morning.

January 9^th – our first day of the evaluation at the Cleveland Clinic. We had to be there at 7am. Now the way my family works is one of two ways – we are either way to early for something or always a little late. My mom woke me up at 530am and we left the hotel by 6am. It took us approximately 5 minutes to get to the hospital so we were over an hour early, ugh. My first test was a cat scan of my lungs (nothing knew to me) from there we had to go to Molecular Imaging – what is that? – well I had to eat eggs with radioactive isotopes in them and toast with some jelly then they had to take 4 pictures of the food passing through my body. One picture every hour, a total of 4 hours of nothing to do and nothing to eat or drink. After the last picture was taken we then had an hour break. BUT I wasn’t allowed to eat because of the next test being done. Once we arrived at the gastroenterology department and I learned about the next thing being done to me I was about to high tale it out of there…the first thing they did was take a huge tube and stick it down my nose and into my stomach. Very uncomfortable and very painful I let out a few tears and my mom took a few pics and finally after about 30 min the tube came out and it was over. The next test they were suppose to do they couldn’t because I had forgotten to stop taking my antacid so they decided to wait and do this test in a few days. Finally it was time to go home. That night we had dinner at Table 45, it was pretty good!

January 10-Our first appt was at 8:30 but I needed to have my blood drawn before hand. Based on the blood lab at MGH and how there is usually a long wait we decided to get there around 730ish. They took me right away and I had 35 vials of blood drawn! Even though we were a little early we headed over to my next test which was an echo and an EKG. They also took me right away and I was finished with them by 830! Now, I was to meet with the transplant social worker, I was scheduled to see her at 11:30 but since we finished everything else we headed up to see if we could be seen early. I met with her at 10 and finished by 1130.  We where done with everything by 12 and so my mom and I decided to go to lunch at Melt. It was featured on the food network channel and is known for their grilled cheeses. They make any kind you can think of! It was very good :) We then headed back to the hotel and napped. We didn’t do much that night even though we napped we were both still wiped and tomorrow was the day we were actually meeting with the transplant team so we were both beyond nervous.

January 11^th – I had Pfts, walking stress test, and what I was dreading the most – blood gasses. Blood gasses is when they have to take your blood from your pulse. They can go either in your wrist or in the bend of your arm but they have to go deep until they hit the pulse – beyond painful. They tried four times and then called it a day because they could not get it. After I finished all respiratory stuff we had to meet with the financial coordinator. After meeting with her it was finally time to meet with the transplant team. My mom and I were super nervous and excited, but more nervous. Dr. Budev walked in and sat down. She started talking, and honestly what she started talking about did not sound positive – “Hi Ashley, nice to finally meet you. I am going to be upfront and honest. We have never done a redo transplant on someone who has also had a kidney transplant and I am not sure we are ready to take on that risk. You have one perfectly working kidney but only one. There is a very good chance that after having a double lung transplant and being slammed with high doses of the medicines your one working kidney could fail.” My eyes started filling with tears, but I pulled it together and spoke. I won her over and without getting into the lengthy conversation we ended with her saying “I really like you and want you as my patient. You know exactly what is going on and the risks of everything that could happen. I am going to send you down to our Nephrologists so he can look you over and let him tell me what he thinks" She then said she would have MGH run all the test they did not have time to schedule and have the results sent to them. My mom and I both said that if it would be easier for us to stay an extra week so they could run all the test themselves then we would do that. her final words as I was leaving the room was "Ashley, lets do this!" After hearing this I am pretty sure the smile on my face was from ear to ear, I was so happy that she was ready to take me on as a patient. I honestly felt so comfortable with her and the nurse coordinator, Summer, and knew that Cleveland Clinic is where I am meant to have my second double lung transplant. because as I have said before a hospitals numbers can look awesome but you also have to feel comfortable being there- and I so did :) Although, she was willing to take me on as a patient I still had to get the ok from the Nephrologist and still then be accepted by the rest of the team.  My mom and I then headed to see the Nephrologist, waiting to be seen from him was almost unbearable. I mean, as of right now he is the one who could make it or break it for me. He walks in and sits down and says “before we start any conversation I have one question to ask. If you have a double lung transplant and your kidney should fail would you have a donor ready to donate a kidney to you? you would not be able to be put on dialysis, so there would need to be someone ready to go within a month after your transplant” My mom and I looked at each other and then both answered “yes”. He then said “then I don’t see why we would not do a lung transplant, why would we not save your life because of a “what if”?”  My mom and I both let out the biggest sigh of relief. After meeting with the Nephrologist we had to head back up to the gastroenterology department so I could have the test I was suppose to have earlier that week but had to reschedule. They put another tube a lot skinnier than the first tube, but a tube none the less down my nose into my throat and I had to keep it there for 24 hours – kill me. It was horrible, every time I tried to eat, the food would pull on the tube and it would kill. Finally the day was over and it was time to go home.

January 12^th and 13^th – Originally we did not have any more appointments but because they are going to do all the test themselves the rest of this week as well as all of next week is now booked. On Thursday we had appointments to meet with Infectious disease, x-ray, more blood was taken. On Friday I had a bronchoscopy. This is when they go through your mouth down to your lungs to look around and take small pieces for biopsy. They give you what I call “happy medicine” so you do not remember anything. Dr. Budev who was performing the bronchoscopy on me actually let my mom stay in the room and watch which, my mom was excited about because she loves watching things like this be done.

Finally it was the weekend. It was a long week of test and we had another long week of more test coming. So we where going to enjoy the weekend. We went to one of the malls and did a little shopping and then we had dinner at a restaurant owned by an Iron Chef called “Lolita’s”. We did a lot of catching up on sleep and just laid low. My mom was in tennis heaven on Sunday night because the Australian Open started. I can guarantee no one in Australia heard her screaming but I am pretty sure the entire hotel did, haha.

Well this will end this blog. I will start my next one and have it up by the end of this week! Sorry for it being so long but I want to try and get in as much of the evaluation as I can.

Talk to you all later ~ Breathe Easy,
Ashley

Its a New Year :)

Hello Everyone,

  Sorry for not updating in over two weeks but, honestly I had nothing new to talk about.

Holidays are over for a while :( I love the Holidays. My cousin Brad has started a new tradition of throwing a Christmas Eve Eve party! I went last year and had such a good time. Unfortunately, this year because I am avoiding large groups of people in fear of catching something I could not go :( I was so upset, but I will definitely be there next year! Christmas Eve I went over to my Nana and Grampa’s and had Chinese food with them and my father. For Christmas me, my mom and sisters had dinner together we had lobster, steamers, steak, and quit a few side dishes it was absolutely amazing and then our family and the Murray's went over to my Aunty Gail’s and Uncle Paul’s for dessert, drinks and family game time. It was the first year we did Christmas this way; usually the entire family will have Christmas dinner at one families house. But after dinner everyone would become super sluggish and then there would always be  just so much to clean that we never really got to enjoy the time spent together. It was always eat, clean and then be sooo tired to do anything else. This year though, we all got to eat dinner at our own places so nothing was rushed and then we all went over to the Conways at no particular set time and just hung out together. We did a Yankee Swap and then played Catch Phrase and it was probably some of the most fun I have had in a long time :)

  During the week in between Christmas and New Years, I simply relaxed. I had no Dr. appointments the entire week~it was amazing. One of my best friends, Colleen, came to visit and spent the night. We ate pizza, watched movies and just hung out~we had so much fun and I loved it. Simple things like that really do help me forget that I am sick and on oxygen :) I was also looking after my Cousin’s dog Lucky this week. She has diabetes’s and needs an insulin shot twice a day and I had no problem giving Lucky her shots.  New Years Eve was very different this year then it has been in the past. I am usually out partying with friends at either a bar or a house celebrating the end of the previous year and the beginning of the New Year. This year however, I laid low. My mom, Lindsey and I hung in and had oysters, lobster (clearly my favorite food ever) and steamers! Then we played cards and of course popped champagne and watched the ball fall at midnight. Even though this New Years Eve was a lot different then my previous years it is one I will never forget <3

  I leave for Cleveland this coming Sunday! I am super excited and super nervous. I am excited because we have just waited so long for this appointment and now it is finally here. Super nervous because, I have so many what if’s… I mean I have gone though a double lung transplant before but it does not make the whole situation any easier, if anything I think it makes it a little more difficult. Angel Flight which is a non-profit organization will be flying my mom and I out to Cleveland on the 8th and will be flying us home on the 13^th. They allow oxygen to be brought on board and any other medical necessities. The organization is basically people who have there pilots license and have their own planes to donate there time and their personal private plane to fly people in medical situations to and from there destination. It is an amazing organization that helped lower the stress involved with this whole trip to Cleveland. One thing though~ your suitcase cannot be more than 18 pounds, they clearly do not know me, haha. I usually have two suitcases one for shoes and one for clothes and neither of them are ever less than 18 pounds. But I will figure it out haha~hopefully. I also planned on blogging about my trip to Cleveland but I was hoping to do a video blog instead of just typing out everything. If anyone has a flip camera or a flip style camera I could borrow for the week that would be awesome!

  Also tickets are now being sold for the benefit on February 11^th. They are $75 a ticket. That gets you a sit down dinner, which will consist of bread, soup, salad, entrée, dessert and coffee a fully stocked cash bar, a DJ and plenty of dancing :). Also there will be a live auction, a silent auction and raffles. Tickets must be purchased before the event. Please feel free to contact me though here, facebook, twitter, email, text (and any other forms of communication)OR you can go to my webpage and buy them right from there www.breatheeasyforashley.org  if you are interested in buying a ticket.

Talk to you all later~Breathe Easy

Ashley