Hey hey hey!!
I'm sorry that this post is so delayed! It's been a hard one for me to write because of how everything went when I was at Stanford. And because I'm opening up about something that's really sensitive to me. So please I ask, if you don't have anything nice to say, don't say anything at all. This post is just part one of my adventure to california. I will be posting about my actual trip there as well!
As most of you know I had my first follow up appointment with Stanford on wednesday May 15th at 10:30 a.m. and since my appointment was so early in the morning my mom and I flew into california on tuesday! This is a trip I had been looking forward to for months and months. Strictly because of the fact that I got to see one of my best friends! On tuesday, my mom and I got to california at about 4 p.m. (I think) or so. Waiting to pick us up at the airport was Melissa!!!!! I was so freaking excited to see her since this trip down to california was under good circumstances. Once we found our hotel and put all of our luggage into the room, we went and got some dinner at Olive Garden (I know, I know, how surprising!). Seeing as how three of us had to get ready in the morning the next day we were up bright and early. We got to the hospital around 10:00 since we were told to arrive at least 15 minutes early. But for some reason or another weren't actually seen until 11:30 or so. It was extremely frustrating!!! While we were waiting to be seen though, I had the chance to meet two girls that both had CF! I love making new CF friends. All CFer's have this instant bond to one another! After waiting an hour past my appointment time we were finally put into an exam room just to wait some more. Because we all know that going to the doctors means playing the hurry up and wait game..most annoying thing in the world if you ask me. lol. I saw a transplant doctor, nurse (Lisa, who I love!), nurse practitioner (NP), and a social worker. This appointment was a tough one for me because I got yelled at multiple times about something that's a really sensitive to me. I take pain medication. Most CFer's or non CFer's that have "end" stage lung disease are in a lot of pain because it hurts to breathe. It's something that has become more and more common. But it's hard to open up about this because I feel really ashamed about the fact that I have to take pain medication on a regular basis and it's because of the bad stereotype that comes along with it. Anyways, literally every single time I see a doctor I get a lecture about how much pain medication I'm taking and the fact that I have to take them. So when the first person walked into my exam room I knew I was eventually gonna hear it from them.
First up was the NP, she started out asking me how I was, what my breathing treatment routine is, and of course what medicines I take which of course lead to pain medicine lecture number 1 of the day... She was originally kinda rude about the topic but my mom said something to her before she could say anything to bad, which made her change her approach about the whole thing. And the conversation ended fine! The second person I saw was Lisa. She's the one person I look forward to seeing at Stanford. We just kind of caught up about everything that's happened since the last time I saw her, hospital stays, life, rehab, a little bit of everything! It was a nice visit! My mom, melissa and I had been curious as to exactly how many people are on the double-lung transplant list at Stanford. We were assuming that the number of people had to be in the thousands somewhere. Boy were we wrong. There is only 22 people on the list. Crazy right?!?! And of those 22 people, I am among the bottom of the list, therefore on the "healthier" side of patients. Never in my life have I been considered healthy anything. The third person of the day was the doctor. He was pretty pleasant to talk to, but of course the topic of pain meds came up. And instead of yelling at me and making me feel bad about taking them and doing absolutely nothing to help me. He actually sat down and gave me a starting point on how to cut back. He was the first and so far the only person that has done this. It was nice finally getting some help with this issue. I was also informed that there are alternative medications I could be taking that aren't narcotics/habit forming medications, that will help my pain in the same way. My question to that was, why the hell was I not put on those first then?!?!?!?! Thank you Kaiser for creating this problem for me that in all reality could have been avoided. I'm sure you all have heard the phrase "they save the best for last" sometimes this can be true, but this day was definitely NOT one of those times. The last person I saw was the social worker. When my mom and I went down to Stanford the first time, my first impression her (social worker) wasn't necessarily the best one. There was just something about her that I wasn't impressed with. And I feel like if she is suppose to be the support person for my mom and I when I go down for transplant, she should be someone I feel comfortable with/sharing things with. So going down this time, I was willing to give her a second chance. Well this second chance was officially blown. I'm not going to go into details about what was exactly said because I honestly can't remember what exactly was. She was extremely rude about the topic of my pain meds and by the end of the conversation I no longer wanted to be on the transplant list, that's how horrible my appointment was.
After I was finished being yelled at/reprimanded by everyone I finally got to leave, but not before I had to go get some labs done of course. Honestly, what I really wanted at this point in time was a drink. lol. The second I walked out of that hospital though, my vacation began and I didn't have a care in the world. We had about a two hour drive to melissa's house. Since, I love being in the car to me, there's nothing better than being with my mom and best friend, having a little mini road trip. On our way home we made a pit stop at Pier 39 to show my mom around the pier and all the seals!! (picture below)!! We also, had lunch at The Hard Rock. I've always wanted to eat there but I wasn't impressed with the service or the food. So it was kind of a disappointment. We got back in the car and continued on our journey home. On the way home, we had to cross the Golden Gate Bridge. Which is something my mom really wanted to see since she never has before. I love it, I think it's so pretty. But my mom on the other hand was sad that the Golden Gate Bridge wasn't actually golden.... lol. Silly mom! After an hour and a half of stop and go crazy california traffic we finally got to melissas cute little town house!
They all smelled horribly!!!!
This is a facebook page I have set up to make it easy for people to follow what's going on. Please "like" it if you want updates!
- Amanda :)