Monday, December 19, 2016

Dr. Afrin: Check

Mission: Take Back Ground From the Nasty Masties

Phase 2: Trip to MN to see Dr. Afrin

Status: Complete...with some change of plans on the go...

We just got home from our whirlwind trip to MN for my biannual appointment with Dr. Afrin. We left Wednesday night about 8 pm, drove about 3 hours, stopped at a hotel for the night, then drove the other 9 1/2 hours on Thursday. My appointment was at noon on Friday, and we immediately started heading home after to try to out run the incoming snow storm that was headed toward Minnesota and Wisconsin. We drove about 5 hours, stopped for the night, and finished the drive on Saturday. Olympic level road trip status for the win!


Originally we were supposed to fly with an organization that provides free flights to patients and their families to out of state appointments and treatment, but an incoming winter storm grounded the planes. That meant for A LOT of driving over only a couple of days. Shout out to my incredible husband for not only doing all the driving, but doing hours of it in the dark in the midst of snowy conditions in the middle of no where Wisconsin!

We are very grateful to now have new friends in the Minneapolis area who very graciously allowed us to stay with them Thursday night (and Friday had we stuck around). Thank you Fred and Patty! And thank you Jeff and Barb for connecting us!

My appointment on Friday was scheduled for noon, but Dr. Afrin typically runs behind. He knows many of his patients come from out of state, so he always gives everyone however much time he needs to. That means we often have to wait, but we are okay with that because we know that we will be given the same consideration when it's our turn.

Could she be any cuter while we wait for Dr. Afrin??
It is always great to be able to talk with him because he is so knowledgeable about mast cell diseases. We were able to talk about the recent flare that I seem to be stuck in and see what his thoughts are regarding why all of a sudden I have crashed hard. He said typically when a patient is doing well, then all of a sudden has a sharp drop in function with a huge increase in symptoms, there is almost always a trigger. The challenge is figuring out what that trigger may have been...it could be something as small as the pharmacy got a shipment of capsules from a new supplier and something in the way the new supplier manufactures the capsules is triggering me...so minor the customers aren't informed and for 99% of people, it's no problem. But for a mast cell patient it could be the difference between being able to eat, run, and function and being almost unable to stand, completely tube dependent, and spending too much time in ERs. So we have some detective work to do!

This time last year, I participated in a research study looking at specific genetics and possible mutations associated with mast cell diseases. Dr. Afrin updated us on the results of the study which is super exciting! The preliminary data was just accepted for publication, and he recently received additional funding to double the number of partcipants! He said they are finding some interesting mutations and look forward to collecting even more data in the next year. Nick ALMOST got to be a healthy control, but the timing for the data collection didn't work out...maybe next time =)

We also discussed my reactions to anesthesia. Every time I have to be put under, I have severe reactions...so far to all but one medication that has been used. As you may have read in my last post, my tube change last Tuesday was no different. That made me nervous going in to the port surgery this coming Tuesday knowing I would have to go under anesthesia again. Dr. Afrin gave us some recommendations, but more importantly, we were able to come up with a plan for this coming Tuesday.

Basically, I'm going to have the port placed while I'm awake! I feel kinda hard core saying that... =P Although for full disclosure, at first it sounded a bit intimidating...but to be honest, I was more nervous to think I'd have to go under anesthesia again than I am knowing I'll be awake. Actually, I'm a bit fascinated by it! They WILL use local numbing medications so I won't feel anything other than tugging and pressure, but I am a bit intrigued to be "see" my own surgery. Okay, more full disclosure, I probably won't actually get to watch anything, but just being awake seems cool...at least right now =P I'll keep you posted as to how that goes!

We also discussed new medication/treatment options to discuss with my local doctors (and probably fight with insurance about). We are taking some necessary steps to try to get me feeling better again, but we also need to be prepared to try something new if things don't change soon. Not sure yet what we will try first. It will depend on insurance approvals, current symptoms that need management, and the way my body is functioning when we need to make those choices. As always, I will keep you all posted when we do get to trying something new.

That is most of what we discussed with Dr. Afrin. It seems weird that these 1 hr appointments twice a year can be so beneficial, but they truly are. There are so few doctors in the country that understand mast cell disease like he does, and his input is so valuable. I do not take it for granted that I am able to be one of his patients! I even got him to sign his book (Never Bet Against Occam) for me!


And that's a wrap! On our trip to Minnesota at least, and for Phase 2 of this crazy week of fighting my mast cells. I felt alright during the trip. Both drives were tough and I spent a lot of time sleep (some of it drugged) on our drive out to MN and was just very reactive and uncomfortable coming home on Saturday. BUT we managed with no ER trips, EpiPens, or otherwise mast cell craziness! That's a win if I ever saw one!

I did start to crash Saturday evening and wasn't able to sleep much during the night due to severe GI issues. Sunday after Nick got home from church (I spent the morning in bed and passing out trying to get to the bathroom...) we ended up in the ER to get some IV fluids, IV meds, and electrolytes. No anaphylaxis, but with Xolair and port surgery coming up this week, we didn't want to take any chances that things would continue spiraling downhill. Thankfully that helped and things seemed to be (relatively) stable, at least for now.

Stay tuned for Phases 3 and 4 of this week's mission! Thank you for your continued prayers and encouraging texts and notes. Even when I don't reply immediately, they do not go unread, and I am very thankful for every one of you walking through this season of life with us!

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