I received my test results back this morning from Friday which surprised me! I wasn’t expecting them for a week or so. They looked good for the most part but there were a couple of things that were slightly off so I added those to my list of questions for the meeting today.
Dr. Burt is extremely quick…..he came in went over my history when I was on which DMDs (disease modifying drugs) Avonex, Aubagio…he thought I started tecfidera and I told him I had not and he asked why and I told him because Rush was trying to push me to use their pharmacy and I didn’t want to and it was some back and forth and he asked about my new doc and I told him I love Dr. K and he asked what he is doing for me in the meantime and I told him about the steroid infusions that I started because I’m declining and he asked what’s going on and I told him cognitive issues and my walking is worse, balance, vertigo, etc. Then he watched me walk, he asked me to do the heel to toe and I told him only with a wall and he said he will be there and put out his arm and I did one step and he had to grab me and he’s like “okay this isn’t going to happen is it.” I could do the toes thing and the heels thing okay but not the balance stuff. Sigh. He told me again about risks including death and I told him I understand. He asked if I had questions and I told him a few and he said like what and I named a couple and he said Betsy could explain it. He also talked about the charcoal drink for the Aubagio washout and said the nurses would explain more.
Then he left and I met with Betsy and she pulled in Kim to talk about the Aubagio removal/charcoal drink and since i was only on it for less than 2 months they suggested they do a lab to see what level it’s at so they know whether to have me take 4 or 8g of charcoal drink TID. I forgot to ask how many ounces that is. Ugh. They will email me the labcorp requisition.
Then I met alone with Betsy again and she answered my questions. Which were:
- H0w do are my new cells not affected by MS? She explained basically because they are baby cells and haven’t had a chance to acclimate with the old autoimmune cells that they are removing. That’s what I thought but I didn’t know how to explain it better to those asking and I guess there really isn’t a better way to explain it- if someone has a better way please advise.
- Do I anticipate early menopause? She said yes but not necessarily. Since I’m 41 I guess that makes it more likely. I told her I went to an endocrinologist a year ago who said I was no where near menopause but that doesn’t matter apparently. Great.
- What are the most difficult times that I’ll need caregivers? I explained to her I have different people with various degrees of experience and my BFF Michael and his husband will be coming and since they have healthcare experience I want to line them up for those toughest times. She said she would “pull out the big guns” for first dose of chemo and mobilization and that time following with injections, etc. That’s when I’m thinking I’ll have BFF Michael out. After I’m discharged from the hospital she said I’ll be needing help too so I’ll try to have BFF’s husband come out and then my parents and whoever else I can line up. 🙂
- Do I have to worry about flushing the Vascath or PICC lines? She said no, that I will have them put in before admission each time and they will care for them there and remove before d/c so I dont have to worry about that. The old handbook mentioned something about flushing but I don’t see that in the new one.
- Do I need to worry about slightly abnormal labs? She said for their purposes no but she did recommend for me to see endocrinologist (again) about T4 for hypothyroidism.
So next step is insurance approval then I’ll go back to meet with her again and go over everything.
Can’t wait for that approval! I’m hoping for end of next week but most likely the following week.
Thank you everyone for your support!
Love you girl and praying everyday. We may not get to see each other or talk often but there isn’t a day that goes by that you are not on my mind and in my heart. I love you and am here for you during your journey in whatever capacity you need me. You are one of the strongest women I know and I am so blessed to have you in my life.
I love you too. Thank you so much for your support! Love you!
Hi Ellie! Nice to find your blog. I’m due at Northwestern for pre-testing February 15-17. Can’t wait to get started. I’ll follow your blog. Mine is https://wordpress.com/post/jackiehajji.wordpress.com/245 if you want to follow me. Take good care!
Best, Jackie Hajji
Nice to meet you Jackie! Yes I just started following you too. Looking forward to hearing how your pre-testing goes!