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 8th - 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 9th – 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 11th – 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 12th and 13th – 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
Ashley
No comments:
Post a Comment