I have not wrote a blog in a while about hospital protocols and advocating for yourselves.... so the next section is for those coming behind me in the future to help make there experience more smooth. Read on if you want but don't feel you have to :) This is a pick and choose blog.
I know I have said this before but let me reiterate that after the transplant things are far from over and you are shuffled though to the next teams and Emory protocols and lack of communication all over again. So just as you get your stuff together and get the team to start communicating with YOU, it starts all over. Thats ok, many years of advocating for my people on my caseload has prepared me to advocate for myself in a respectful way, most of the time.
The example that I would like to give is that before the transplant, you have a transplant coordinator that is all up in your grill to get you through all the tests to get to the transplant. Then at the transplant, that person falls off the face of the earth and everything they did has to be done or redone by someone else who doesn't know you and doesn't it a different way. At this time, I have to say AGAIN, Emory is the best hospital around, I'm lucky to be treated there but I want to help those of you that are going to go through this because some of these things are the only thing you will have any control over in your life, and everyone has to have a little to stay sane. Some of this is funding because they really need to have coordinators that stay with you from beginning to end, kinda what I did for a job, and have 30 or so people. Well, when I win, or play, the lotto, I'm giving money for that reason only.
After the transplant is when you have to start coming the the clinic 2-3 a week. These appointments are sketcy. There is a plaza level lab in purgatory, I like to call it, they they have to use if they are drawing form a port, picc, or doing another special test. It's slow, slow, cramed, everyone is in a bad mood. Once my voice is back, I'm going to pop out my guitar and go at it.... Now, on the 2nd floor there is a nice quite lab, you get in quick and fast. The issue is that they only draw from the arm there. Hey, I have been in so much pain and picked, etc, that an arm pick is nothing. So when I have the choice, I advocate for myself to be at that lab and choose to get it taken from my arm. This is better also because you are not around the sick people down stairs that are coming to clinic as a walk in do to fevers, etc. Sometimes you just have to go downstairs, but always go up and talk to Ramirez on the 2nd floor and ask him to ask the nurse if they can change it. It took me two weeks but I know have my nurse on board, the scheduling team, and myself that I always go to the 2nd floor lab unless otherwise noted, and I want to know why.
Last week was a prime example of lack of communication, again lack of funding, They were trying to get me to go downstairs to get 19 tubes of blood from my picc for the research drug I was going to start on last Friday. However, everyone knew, Dr. K, nurse, the research coordinator, by Thurday, that I was not going to start the drug on Friday. No one bothered to call me. So we thought we were going to be at Emory all day, I had a ride set up to get back to Emory (mom goes home on fridays from Emory), and they were trying to take my blood that they didn't need. Well, we got that straighten out real quick, got my quick labs on the second floor, and thank God my cousin Andy, love you!, got out of bed to come and get me!
This week went smoother but it still took some advocating on my behalf. On Wed, they said that I was going to start the study drug on Friday (all day thing). Dr. K asked the research coordinator to give me a road map asap because I wanted to know what what going to happen and when I would need a ride. Now, they can never guarantee anything, but I'll I ask for is common knowledge so I can be in charge of my medical care because it is my body. I emailed the RC (research coordinator) first thing on Thursday morning, never heard back all day. I finally called my nurse an expressed again that I wanted us to be on the same page and wanted to forward her the email. Instead, she found the RC, and got her on the road. Now this is were the some of the sweet talking came in, (more flies with honey) I said a lot of I's, very important. They are so busy, over worked, they are there still 7 every night. I calmly explained to her that it causes me more anxiety for me, my caregivers, my drivers, when we have no idea what is going on. That I have very little control over my life and I have to be able to advocate for myself. There was also the issues about eating. I have to eat about every 2.5 to 3 hours , small meals, at this time. With the amount of meds that I'm on if my tummy gets empty, I get sick. I had to fast for so long before and after the medication. Now if the team is not on board with times, I could have ended up going 6 hours without eating instead of 4. This actually happened to me back in Nov in the hospital, I didn't get to eat all day because of a procedure that someone didn't do early enough. I'll have to find that blog and put a link here. The team got on board. She gave me a road map, and I bet I saw her five times throughout the day. She seemed to be very sorry, even though I continued to tell her that she is doing a great job and I understand. The day was long, but went smoothly. It was worth fighting for and so are you!
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