Life can be so unexpected...

Well Hello Everyone,

So as I am sure everyone knows the past few weeks have been very rough.  Not only have they been rough but also everything that happened was so unexpected…

So the weekend before I was admitted to the hospital my mom and I moved into our apartment. It was a cute place a 2 bedroom 1 bathroom decent size apartment and to top it off I was told that Tyson could come live with us! This put the biggest smile on my face (I miss my dogs so much).  Monday was a pretty low-key day; I lounged around while mom redecorated the apartment. Early evening we went to Wal-Mart to pick up a few necessities and then came home watched a movie and called it a night. Tuesday I just hung around the apartment while my mom had to run a few errands. Wednesday I woke up at around 7:00am and just felt horrible. Could not catch my breath no matter how hard I tried. I had an absolute horrible headache and was just so uncomfortable.  I just sat there sweating, trying everything in my power to just be able to take a breath, to lift the imaginary bricks that I felt where just sitting on my chest crushing me. I tried to yell for my mom but I just couldn’t.  Mothers instinct ~ she woke and when she saw me she didn’t ask questions just grabbed her bag, grabbed my bag and we went straight to the ER. I must of looked really bad because once I got to the ER they took one look at me and just knew something was very wrong. I did not go through triage or anything they wheeled me right to a room. The last thing I remember is getting up from the wheel chair to sit on the edge of the bed …then my mind goes blank…and the next thing I know I am waking up on a ventilator.

   When I finally woke up, I was confused but also relieved. Confused because I was not sure how I ended up where I was, why I had a huge thing in my mouth and down my throat, why I couldn’t talk or where all the needles in me came from. But relieved because I was now breathing comfortably (well, technically I was not breathing a machine was breathing for me).  But I was a lot more comfortable. I woke up to my mom standing next to me but my Aunty Gail and my Aunty Debbie were also standing next to me and from what I could remember my aunts weren’t there before I had “fallen asleep”.  So needless to say I woke up with a whole bunch of confusion.  

I honestly didn’t think the situation was as serious as it was.  I mean, I am on a vent and yes, that is pretty serious, but I figured I would be taken off the vent in a few days get discharged go back to where I was before this whole ordeal, wearing oxygen and waiting for lungs.

The first few days after waking up I was lethargic and pretty out of it. But, once I was fully awake and able to move a little I had to do the obvious that, of course was to check Facebook! It had been far to many days since I was on it last, haha. I was overwhelmed by the amount of sweet, caring and positive messages that were waiting for me! Thank you all so much for them <3

After some time on the vent one of the many Drs. that see me came in and said that tomorrow they will take me off the vent to see if I can breathe on my own. I was wicked happy to hear this. I was so sick of this stupid vent. My throat killed, my mouth was uncomfortable, I hated that I could not talk, hated even more that I could not eat but as happy as I was I was also a little scared. I was afraid that I would go back to feeling how I did the day I came to the ER and I never wanted to feel like that again. I think the Drs. could see the fear in my eyes because they reassured me that I was in the ICU so if I started to get into trouble they would be right here to help. So the next day finally comes and, I think because I was breathing comfortable that I would forget that it wasn’t because of my own lungs but that it was by the help of a machine and so I was sure that I would be fine to come off the vent…boy, was I wrong.  So the Dr. came in to remove the vent I took on last deep breath while it was in and then it came out. As soon as it came out I felt like I was just hit by a wall. I again could not breathe at all. They brought over these mask things but I just wasn’t haven’t it. I’m not really claustrophobic but I hate having a mask cover my face especially when I can’t breathe. But, finally they put one on me that I could handle and I thought everything was going to be ok. Again~I was very wrong (seems to be an occurring thing as of lately, me being wrong) because the next thing I know I am waking up again, back on a vent.  It was like DeJa Vu~ point A-wearing a mask, point C-waking up on a vent with absolutely no recollection of point B.  Again the rest of the day after waking up was a blur.  The following day when Dr. Budev came to see me she walked into my room and asked my mom to go on a walk with her…words you never want to hear your dr. say to your mom when you are lying in a bed on a vent. I can’t even begin to tell you the thoughts going through my head on what my mom and my Dr. were walking and talking about. I will say though, that what was being talked about was never one of those thoughts.  So my mom and Dr. come back into my room and my Dr. says that they think the best thing for me is to have a tracheostomy placed. A tracheostomy is a surgical procedure to create an opening through the neck into the trachea (windpipe). A tube is usually placed through this opening to provide an airway and to remove secretions from the lungs. This tube is called a tracheostomy tube or trach tube (looked that up, gotta love webMD). My eyes started tearing up, now this is going to probably sound very girly (but as everyone knows I am probably the girliest girl ever) but, I was more upset of this news because I did not want to have a scar on my neck and I did not want to sound like I have been smoking a pack of cigarettes everyday since the day I was born (not sure why I thought that would happen, I mean I have never known anyone who had a trach before). My Dr. explained that my lungs are gone and I will most likely need to stay on a vent until my lung transplant. Dr. Budev explained that with a trach there is a lot less chance of infection then there is being intubated. She also said my throat would feel a lot better, I would be able to eat and that I would simply be more comfortable. Because I trust Dr. Budev I was on board. Dr. Budev also reassured me that the scar will be minimal and I would sound the same as I always have.  Although, I was on board with the whole trach thing I spent the rest of the day crying mainly because I kept seeing that stupid cigarette commercial of the woman who has a hole in her neck and in order to speak has to cover the hole with her finger and then basically sounds like a walking cigarette. But the procedure was scheduled for the following day.  On the day of the procedure time seemed to pass soooo slowly.  I mean I was anxious and still convinced that I was going to wake up sounding like and looking like this woman in the commercial but, they finally came and put me to sleep before we even left the ICU. When I woke up it was nice to not have a huge thing in my mouth but my neck was painful and they put a feeding tube down my nose into my stomach. I had already lost some weight and couldn’t afford to lose anymore I just wish they could have used a normal size tube and not one 100 times to big for my face. Another thing about the trach that I dislike is the suction. Basically what this is is because I have a hole in my neck I can’t cough. So if I have secretions (Dr. talk right there) they take this tube that is attached to the trach and push it down my trach and into my lungs. Then they suction out whatever you would normally cough out. I absolutely hate this, it not only makes you cough ridiculously, which is not fun at all and even worse when you can’t breathe but it is just simply uncomfortable.   Two days after having the trach placed they had me eat some food. They gave me some applesauce with green dye in it and a few teddy grahams with some green dye on them then after you swallow they do that whole suction thing. If they suction out any green dye than…well, I can only assume that, that is not good luckily, that wasn’t the case for me and I was given the ok to eat :) But, eating was still a problem. Because I had this oversized tube in my nose down to my stomach it was making my throat feel raw. I was so excited to be able to eat and I just couldn’t it hurt that bad. The Drs. decided to remove the tube and put a smaller one in. Once they took out the tube I turned on my charm and cuteness and basically begged them to not put another one in. I convinced them that I would eat, eat, eat so that I would not lose and possibly even gain some weight they decided to give me the weekend to see how it goes. Luckily, I am still feeding tube free :)

Now over my 26 years of life I have had more IV’s and needle pokes than most people have their whole life. With that being said my veins are completely destroyed. Here in the ICU they have a rule that you have to always have two IV’s in at one time.  It would take them 3-5 sticks to just get one IV and then it would only last maybe a day or two if I were at all lucky. Aside from IV’s I needed to have my blood drawn everyday sometimes more than once. Again, it was always more than just one poke to get blood.  So they decided to put a central line in me (they have this dr. term for it but I’m just going with central line) I was completely ok with this because I was done being the human pincushion.

So it has been about 5 weeks that I have been in the ICU at the top of the list and nothing yet. I have my good days and my bad days but I am still holding strong overall. I do get discouraged and think lungs will never come…but they just have to...right??

Sorry for such a long post but there was a lot I needed to fill everyone in on. There is actually going to be another post this week. It is kind of difficult to write because I am going to open up and let everyone know how I truly feel about everything instead of my typical answer~ I am good. Stay on the look out for that one!

Until then ~ Breathe Easy,
Ashley

little of this and a little of that

Longggg time no talkkk! Sorry about that but to say things have been crazy would be a complete understatement. But lets start off with I have officially moved to Cleveland…

Basically what made the Drs. both in Boston and here in Cleveland decide that being in Cleveland was the best thing for me was because of how sick I got.  The Friday before we moved here I woke up not feeling great, not feeling sick, but just not great. I laid low all weekend and relaxed. I had a Drs. apt that Monday so I figured I would wait and tell them at my apt how I was feeling. Well Sunday night, let’s just say, was possibly one of the scariest nights of my life. No matter what I did I could not breathe. I was sitting on my bed with my oxygen up to the highest it could go which with this particular tank was 4 liters per minute and my o2 was at 60%. My mom came into my room, looked at me and knew right away something was wrong. We then went downstairs where we had a 24 hour portable tank which could go up to 8 liters a minute and connected to that tank. If my o2 did not rise above 90% within a few minutes my mom was going to call 911 but, luckily it did. The following morning my Aunty Gail accompanied my mom and I to my Drs. apt. because my mom and I were still very shaken up from that night. Well, my Drs. apt. went horrible, everything was down and my x-ray did not look any better if not worse.  So my Drs. decided to extend my IV antibiotics an extra week increased my o2 requirement to 3 liters at rest and 5-6 liters with exertion. But that the only thing really left to help me is the transplant. OH…did I fail to mention that at this point I was not even officially listed on the transplant list… I had been accepted to the Cleveland Clinic as a patient but had not yet been accepted to the transplant list.  None of us are really sure what the hold up was all we knew is that I was not on the list, yet. So, we all were just a huge bundle of stress, nerves and uncertainty. But that Thursday was when my mom got the call from the Dr. at the Cleveland Clinic (they never call me, something to do with not wanting to stress me out when I am already sick) saying how I have officially been put on the list but that because my health has declined so quickly everyone feels that it would be best if I moved out to Cleveland so that they could take over my care and so it was decided that is what we would do.  I was actually not home when my mom got the call about me being officially listed. I had a Drs. apt that my Aunty Gail took me to.  My aunt went to get the car from the garage and when I sat down she told me I was officially listed. I broke down, I cried tears of joy, tears of fear and tears of relief.

The week before leaving for Cleveland was a very difficult week for me, emotionally. I think it was just a lot of different things. It was the fact that this just became “real” to me. Leaving what I knew and going to a place I knew nothing about, and that I was leaving my family and friends and my babies (dogs). My friends all made sure to see me before going and my family threw me a little going away party. Saturday morning my mom and I boarded the plane and left for Cleveland. Although, I had just cried a river I noticed a small smile on my face break through. The next time I touch down on MA soil I will be breathing on my own and back to living life ~ and that…well, when I think of that I can’t help but smile!

So my mom and I have been living in Cleveland for about three weeks now. I unfortunately, was hospitalized for the past week. I was having some major digestive problems ~ ugh, not fun. However, living out here for only three weeks so far has showed me how important it is to continue to fundraise. So please, please continue to spread the word about me and my situation and get anyone and everyone to donate whatever they can.  No amount is to small and every dime helps more than you will ever know.  

Here are the links to both my webpage as well as my donation page. Please just let anyone who donates to make sure it is “in the honor of Ashley Dias”
http://www.breatheeasyforashley.org/

http://patients.transplants.org/Ashleydias

Another thing I wanted to mention is I often get asked how I am always smiling? How am I so positive? But it is because of how lucky I am. Seriously. I mean, yea I have some crappy stuff going on right now but I have the most amazing family and friends a girl could ask for and I am so beyond lucky for that! I have two sisters that I know I can talk to and tell anything to and just vent to. I can call up and simply cry and they will cry with me. Lindsey and MacKenzie I love you to the moon and beyond. I have Aunts, Uncles and cousins that are the same way. Any one of them would stop what they were doing if I needed them. They all have lives but put their lives on hold to help save my life. I love you all so much! Then there are my amazing friends. I don’t think you guys will ever understand how much you have done for me to keep my going and continue to fight until I win.  Everyone else, friends of friends, acquaintances and complete strangers you have helped with the smile I am constantly wearing, helped with the strength I have to continue to fight and have helped with the determination I have to win. Then there is my mom. Everyone tells me I am a clone of my mom and, that is the highest compliment I could receive. My mom is the strongest, caring, loving woman and I am so glad I get to call her mine.  Mom, thank you for everything. For the strength you give me, the will power to never give up, to never accept anything but the best, for pushing me to continue when you know there is more in me to give but carrying me when I just simply need to rest. I love you beyond words.
So does my situation suck right now ~ absolutely but, I am still completely lucky! 

In the words of Kelly Clarkson ~ whatever doesn’t kill can only make you stronger.

Talk to you all later ~ Breathe Easy,
Ashley

A smile a day, makes the pain go away!

So as most of you know I received awesome news on Monday Feb 6th! I was officially accepted to the Cleveland Clinic transplant program!!  I just needed my dental clearance before I was actually put on the list. So I went to the dentist and was told I needed a root canal. Unfortunately, I do not have dental insurance. Because I have Mass Health I am allowed to get the typical teeth cleaning and fillings when needed but they do not cover root canals. So this one last final step was standing in the way of me being officially put on the transplant organ list…

On Tuesday morning Feb 7^th I woke up and did not feel well at all. Other than just simply not feeling well I also had the chills like crazy and was so much more short of breath with my oxygen on than normal. I called my Drs. and explained my symptoms and long story short I was admitted into the hospital. I started to freak out though, not because I was admitted to the hospital but because there was a benefit being held for me on Saturday night and there was no way in heck that I was not going to be there. I drilled into all of the Drs. that walked into my room how important it was that I be out of the hospital in time to attend the event on Saturday. So on Wednesday they did all the typical stuff ~ Xray, blood labs and nasal swab to see if I had the flu. Once they got everything back I did not have the flu but they noticed I had a small lung infection starting so they started me on IV antibiotics they put me on Cefapime, levaquin and ciprofloxin. I actually have a small allergy to Cefapime so they have to pre-medicate me with Benadryl. Oh my goodness, Benadryl knocks me out! I mean Benadryl tablets make me drowsy but getting Benadryl through and IV is ten times stronger than taking it in pill form.  Thursday, I was scheduled to get a picc line placed. A picc line is a peripherally inserted central catheter. It is long, slender, small, flexible tube that is inserted into a peripheral vein, typically in the upper arm, and advanced until the catheter tip terminates in a large vein in the chest near the heart to obtain intravenous access (totally looked that up). I’ve always just known the picc line as “the IV I can go home with”. Since this is about my 43784234 millionth picc line it is becoming almost impossible for them to get access. It took them about an hour and half to finally get it in when it should take a mere 20 minutes. Not only did it take an hour and half but because I have so much scar tissue around my vein they could not get the adult size tube to go through my entire vein up to my heart. They then tried with a baby picc line and after some struggle where finally able to get it where it needed to go. After finally getting the picc line in place I was told that if I should need another picc line in the future they would have to put a port-a-cath in me instead.  A port-a-cath consists of a reservoir (the portal) and a tube (the catheter). The portal is implanted under the skin in the upper chest. It may appear as a bump under the skin in thin patients, less visible in patients with thicker subcutaneous fat. The catheter runs in a tunnel under the skin, going over the collar bone and then enters the large vein in the lower neck (the internal jugular vein). Since it is completely internal, swimming and bathing are not a problem. The septum of the portal is made of a special self-sealing silicone rubber. It can be punctured up to one thousand times and therefore can be used for many years. (again, totally looked that up).  After having the picc line placed my Drs. told me I could go home that day! I would have to continue my IV therapies for two weeks and to call them if I should continue to not feel well or if I should start to feel worse. I have to say this is probably one of the quickest hospital stays I have ever had!

My uncle Paul picked me up from MGH and brought me home Thursday night! As I was eating dinner with my mom that night she told me some of the best news ever! She told me her good friend Art, who is a dentist, was going to do my root canal for me! Now, I am sure for anyone else who is told they are going to be having a root canal done would probably not bring a smile to your face but since this was literally the last thing standing between me and being put on the organ transplant list I was beyond happy.

Friday morning my mom and I left our house at 7am to take to trip down to CT. That is where Art’s dental practice was. Art started working on my teeth at 9:30am and didn’t stop until he was finished at 2:30pm. He then filled out my dental clearance form and we faxed it over to the Cleveland Clinic right away! I should hear any day now that I am officially on the list and waiting for the perfect set of lungs to come for me! I am not sure if I will ever be able to show how thankful I am for what Art did for me but he will forever hold a special place in my heart :)

Saturday was the day of my benefit!  I was sooo excited it was finally here! I arrived at the Andover Country Club at 5:30pm. I wanted to help with last minute setup and be there to greet people when they arrived. People started showing up at 6:30pm and by 7:30pm there where about 350 people inside. I looked around at everyone and then had to sit down for a few moments because it hit me that everyone here was here for me!  I was over whelmed by the amount of people that showed up to help me raise money and fight this nasty fight!

I want to take the time to thank everyone on the committee that spent countless hours setting up, organizing, planning, stressing, but overall creating this amazing event :) I would also like to thank everyone who donated to the raffle, silent auction and live auction :) and I want to thank everyone who came and spent there Saturday night at a benefit for me. From the bottom of my heart I truly thank you <3

I am often asked how I am always so positive and so happy. Don't get me wrong I certainly have days when I wear a smile to mask how I really feel but most often the smile comes naturally. I have some of the best family and friends a girl could ask for. I know I keep repeating myself and I might sound a little annoying to some people but I can't say it enough! I LOVE YOU <3

Here are some pictures from the benefit!

If you were unable to make the benefit but would like to donate please visit my donation page
http://www.transplants.org/donate/ashleydias
(make sure all donations are in honor of "Ashley Dias")
Until Next Time ~ Breathe Easy

Ashley

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

No news is good news!

 

  Sad News :( my Aunty Martha passed away on Tuesday Dec 6^th at the age of 88. She had been sick for some time but took a drastic downhill the last few weeks.  As unbelievably sad as this is, it is good to know she is no longer suffering. RIP Aunty Martha you will be missed beyond belief but our memories with you will give us comfort everyday. I love you <3.

  I don’t have a whole lot to write about. Pretty boring week, which in the large scheme of things I suppose is good thing. I have been stuck in the house all week, and I am starting to go nuts because of it.  You know it is sad when you are excited about  Drs. Apt because it allows you to get out of the house. Speaking of Dr. Apts. I had to go to MGH on Sunday to have my blood drawn-why I couldn't wait till Monday? I do not know. Usually when I have Dr. Apts. I enter through the Wang doors, which is a side main entrance because you can valet your car and you do not need to walk. Unfortunately, because it was Sunday the Valet service was not open so I had to park my car on the street and walk. Granted it is only a 5 min walk but when you can’t breathe it feels like you just ran a marathon. So I get to the doors and to my luck they are locked?! I was like "this is a joke" but nope it was real life. So I then had to walk all the way around to the front main entrance :(. I finally get inside and have my blood drawn. I am ready to leave and although the Wang doors were locked from the outside I thought for sure they would not be locked from the inside (The Wang doors are a lot closer to where I parked my car) I mean how can you lock doors to a main entrance from the inside of a hospital-can we say fire hazard??-But to go along with the luck I had been having that day I get to them and they are all locked! Ugh, it gets worse, so I get back on the elevators to get back to the first floor so I can leave through the front main entrance. Once on the elevator I try to press the button for the first floor but it wont let me so I pressed the button for the second floor and it worked so I figured this elevator was just not working. So I get off at the second floor and then get one a new elevator and try to press the first floor button and again it does not work. At this point I am pretty sure there is smoke coming from my ears. I get back to the Wang floor and find two security people stuffing their faces at a table with coffee and donuts. I asked them what I should do since the doors are locked and the elevators seem to be broken. Their response-"Oh the elevators are also locked and you have to walk up these two flights of stairs to get back on the first floor" ...wait do you not see the oxygen tube strapped to my face? I can barely walk on a flat surface never mind walk up TWO flights of stairs. So, when I spoke my frustration (and if you know me it was not in the nicest of tones) their other option was to walk through the entire downstairs until I reached the cafeteria and then I could take those elevators because they wont be locked. Finally, I get back on the first floor I am now sweating bullets and huffing and puffing for air so I had to sit down before I endured the walk back to my car. I finally made it home which felt like a million hours later and relaxed. Also, wanted to mention that even though I can’t really go out I can and do love having visitors :) just make sure you are healthy, haha.

  Since I am stuck in the house 24/7 I had time to be creative so I put together a video, nothing professional or anything but I think it came out okay! Here is the link to my Youtube page, feel free to go and watch the video, and subscribe if you’d like :) . http://www.youtube.com/user/glitsNglamxoxo

 

  I am sorry these blogs are only once a week right now, but until the evaluation nothing major to really write about everyday! If anything in my life should change –health wise I will definitely update you ASAP. But for right now everything is just holding its own and I am just waiting.  I wonder though, does anyone really read this? I hope so. 

  Please follow me and comment letting me know that this does get read :)  Hope you enjoy the video!

Talk to you Later~Breathe Easy
Ashley