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

Finally :)

Hello Everyone!

Finally Good News!!! I have dates for my evaluation for Cleveland Clinic. I have appointments on January 9^th, 10^th and the 11^th. They over nighted me a folder with everything I need to know. From my schedule of tests I am having done during my appts, brochures and packets all about transplants (as if I don’t already know), their particular protocol before, during and after the transplant and, a packet with a list of all hotels in the area. Of course I looked at the schedule and then went straight to the list of hotels. I was hoping we could stay at the Ritz Carlton or the Renaissance but the Intercontinental Suites seem like the best choice. The hotel is connected to the Cleveland Clinic and they offer patient discounts. When we are out there we will look around at apartments and stuff for after the transplant. I also spoke to Pittsburgh today and still waiting on a date for an evaluation with them. Trying to get an evaluation with them is beyond difficult but having one set with Cleveland is a huge weight off my shoulders!  

More exciting news!! My sister MacKenzie comes home on December 13^th! I miss her sooo much! She goes to school at Auburn University out in Alabama and I have not seen her since August. We skype a lot and talk on the phone a lot but I just can’t wait to see her <3

My sorority sisters are holding a benefit for me on December 10^th at Shooters Billards and Lounge in Pelham, NH. The event starts at 6:00pm and goes till 12:00am Tickets are $10 dollars before the event and $15 at the door. I was hoping to be able to attend but my Drs. have advised me as well as everyone else thinks it is best if I try to avoid large groups of people. There is just so much sickness going around right now and I cannot risk catching anything.

   Also there is a big benefit being held for me on February 11^th at the Andover Country Club. It is a dinner/dance with raffles, a silent auction as well as a live auction. Tickets are $75 dollars and they have to be bought before the event. I will continue to give more details about this benefit as I learn more details. If interested in attending either event please feel free to contact me through here, facebook or twitter.

   This past Sunday my grandparents held a benefit breakfast for me. All of their friends attended and they raised $1500 dollars! They thought it would be best if I did not attend because again, there is so much going around right now and they did not want me to catch anything.

   I have officially gotten into the Christmas spirit :). My mom and I have decorated the inside of our house (well mom decorated, I stood there and said “that looks beautiful”), total team effort if you ask me. I have finished most of my Christmas shopping which is very exciting! Not working around this time of year can be very difficult though. If anyone knows of a position that can be done from home, let me know! I will do anything for some extra cash :). This weather we are having lately is absolutely amazinggg :) I HATE snow and I HATE the cold, give me a little snow on Christmas Eve and Christmas Day and I am good for the entire winter :).

   Also some inside info—there is a webpage being created for me and as soon as it is up and running I will post the URL.

Talk to you all later~Breathe Easy,

Ashley

Live, Laugh, Love :)

Hello Hello!

   UGH, my car has finally had its final run. The mechanic called to tell me that the specific piece that my car needs to get fixed is in NY and it cost $850 not including labor. So it would cost over 1000 to fix my car. 1. I can’t afford that and 2. I would hate to pay that to have something break on it in another few weeks. So I am officially on the hunt for a new car. If anyone knows someone selling their car for a reasonable price (Cheap) or has an extra car that they wouldn’t mind me borrowing that would be awesome! (I have a perfect driving record)

    I had an awesome last couple of days! Spent Thanksgiving at my Aunty Gail’s and Uncle Paul’s house where we had tons of laughs and way too much food. I am still full, haha :). My mom and I attempted to go Black Friday shopping; we pulled into Walmart at 11:55pm for the midnight opening. There were about 1000 people waiting in line, one, which informed us that the doors weren’t opening until 5am. I am not sure what I was in shock of more – the fact that Walmart wasn’t opening until 5am or that there was this many people in line at 11:55pm waiting for the 5am opening. Needless to say we did not wait. Since we were in the Black Friday shopping spirit we decided to head over to Kohls got there at 12:30am to find out they were not opening until 1am. We then called it a night and went home. On Saturday I spent the day with one of my best friends Carolyn! We went up to Kennebunkport walked around took some pictures and just enjoyed the beautiful weather, on our way home we stopped at the Kittery outlets and then we met up with Carolyn’s sister Adrienne and Adrienne’s boyfriend Brendan and saw The Muppets Movie- absolutely adorable! Later that night my friend Liz stopped by to say hi and catch up on her way back to CT.  On Sunday I went to cheer my mom and her tennis team on during their match.

    I spoke to Cleveland Clinic today and they have everything they need from me to set up an evaluation. The woman I usually speak with told me that I should be getting a call tomorrow, Tuesday, from the scheduling department with a date for me to come out and be evaluated. I have not been feeling so hot the last few days I am having more difficulties breathing which makes doing anything that much harder, blahh. I have to go to MGH in the morning to have my blood taken so I am trying to decide if I will stop by my Drs. to let them know how I am feeling. I am just not sure if I am over tired and need rest from the last few days or if I am at the beginning stages of a cold.

    Well that’s all I have to say right now! I will let you all know as soon as I hear from Cleveland and also if I decide to visit my Drs. tomorrow!

Talk to you later ~ Breathe Easy,

Ashley

Welcome and Update :)

Hello Everyone!

  Welcome to my blog :) I figured this would be the easiest way for me to keep everyone updated!

 

   As most of you know I was set on going to the University of Pittsburgh Medical Center (UPMC) for my second double lung transplant. Unfortunately, while we were in the process of getting everything needed to get me out there for an evaluation their head Dr. of the transplant program stepped down and a new Dr.took it over. Because of this they are prolonging me coming out to be evaluated. So we have since redirected our focus to the Cleveland Clinic. When we initially started researching hospitals with the best success rate on double lung transplant redos both UPMC and Cleveland Clinic had equal success rates. We just then chose to primarily focus on UPMC and although, we have redirected our focus on Cleveland we are still working with Pittsburgh as well. 

  I am hoping to hear from Cleveland any day now with a date for me to come out and be evaluated. Getting the evaluation is just the beginning stages of this long journey and it has already been beyond stressful– oy vey!  But, hopefully once I get evaluated (and accepted-hopefully) things will start to be a little less stressful-wishful thinking?.. Most likely! I should also hear from Pittsburgh with a date as well. Once we visit both places, we will know which one definitely feels right which will help make the decision on where to go easier.

   

  I have been feeling pretty good. Sometimes I think I feel better than I actually do – my body has adjusted to not breathing well so I will "feel" okay when in reality my lungs are working extra hard,a little to hard, for my own good. In other words I should probably wear my oxygen more often than I do. I just absolutely hate going out in public with it on but, I also hate staying in the house – total catch 22.  I had a Drs. appt the other day and I was told that I have lost some weight, I asked why because I’m not eating any less, and I was told because my lungs are working that much harder it is more difficult for me to keep weight on. I was also told that a transplant will often be put on hold until you you have a BMI (Body Mass Index) of at least 18% and right now I am only at 17% I have to gain at least 5 pounds to get back to 18% which is a lot easier said than done.

 

  I’ve also started the evaluation process at MGH and because of it I seem to have Dr. appts 3-4 days a week. Having a car that is pretty much the same age as me (1988 Buick Reatta) that likes to break down 2-3 days a week makes this very difficult. If you should ever see my on the side of the road stop and say hi, I will most likely be the only girl waiting for triple A and wearing oxygen, haha. 

 

  Hopefully this catches everyone up on me. Hope everyone has an awesome Thanksgiving, I have so much to be thankful for and I am so excited to spend time with my family and friends and all while getting to eat awesome food!

Talk to you all later~Breathe Easy,

Ashley