Monday April 23, 2018
I’m at UCSF right now. Waiting for my ‘drug’ to arrive. I thought I would try to chronicle the day so others would know what being in a trial looks like.
We live in Danville and the hospital is in San Francisco. We normally give ourselves an hour and a half to get here. Today the traffic was light and we made it in less than an hour! Upon arrival we have to check in and get a pass. We then wait for our clinician Lauren to escort us to our room. She takes my vitals and makes sure I’m still able to participate by asking a few questions. She then orders the ‘drug’. As you know, none of us know if it’s the drug or a placebo. It’s a worldwide double blind trial with Roche/Genentech. Right now I’m in the room and just had a light lunch. Bob is with me and we are just waiting for the drug to arrive.
When it arrives I will move to another room and get set up to receive it in my right wrist. At least I hope they can find a vein there again this time! Last time it was pretty easy. In the past it took several tries and my arms were full of holes. I will stop now and finish my journey once the drug arrives 😀
We are now in the other room and I’m in a comfortable reclining chair and have NetFlix on the TV. I’m going to watch some old Law & Order SVU shows to keep my mind off of things. The drug hasn’t arrived yet but the nurse should be in soon to set up the line.
They are heating up my veins now. They use a heat pack and then wrap it in a towel. Burrito style! This seems to help my veins pop so they can find the best place to insert the needle.
After two tries they found a vein on my left arm this time. Now I sit and wait until the infusion is complete. After that they follow with a flush. I normally watch TV or take a nap. They are getting me a warm blanket too which I love. I am getting really tired so I will stop here and close my eyes.
The drug and flush is done and now I sit and rest. I have to stay here for an hour and I can’t be alone. They need to make sure there are no side effects. I fell asleep for a few minutes but now I might watch some more SVU. I’m feeling ok. A little tired and worn out.
They are removing the IV now and about to take my vitals. I should be able to leave soon. The bad news is the drive will probably take us almost two hours because it’s San Francisco to Danville and everyone will be on the road. We left our house at around 11am so as you can see it’s a big commitment, but it’s worth it! Without trials we will never find a cure. Please consider getting involved by signing up at trialmatch.org or you can go to the website alz.org/trialmatch.
I'm home now. Sitting outside in the shade and listening to the birds singing. I'm exhausted but feeling ok. It was a long day but it's all part of my 'job' now. Without trials we will never find a cure. I am thankful UCSF is nearby. There are many people who fly to San Francisco in order to be part of the trials.
I hope this little journal was helpful. Their protocol is very specific and every time we go its exactly the same. The only variables are the traffic and the ability to find a vein quickly 😞
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