Monday, December 21, 2015

Road Trip to MN

Nick and I are becoming pros at road tripping. Right after Thanksgiving we took Friday-Sunday and drove 7 hrs each way to upstate NY to visit my grandma. Lots of car time... This past weekend we drove 24 hrs back and forth to MN to see my mast cell specialist for my 6 month follow-up.

We almost didn't go.

I've been so sick and not doing well lately we were hesitant to stress my body even more by the travel. In the end, though, we decided to go since he is such an incredible doctor and we are desperate for some input and direction for treatment and management of my symptoms. So Thursday night after Nick got off work, we loaded up the car and headed out!

We drove about 7 hrs Thursday night, crashed at a hotel, then finished the last 5 hrs Friday morning. Forgetting about the time change, we arrived in Minneapolis about 11:30 am. Getting there early was actually a blessing in disguise.

Dr. Afrin is not only a doctor but also a researcher. There are very few researchers in the mast cell field, so his contribution to the scientific community is especially important for me and other patients with mast cell diseases. He is just beginning a study looking to verify the genetic basis for all forms of mast cell disease, not just mastocytosis. To do that, he needs MCAS patients to do full genetic sequencing to look for common mutations associated with specific symptom patterns. Since we were able to get to MN early, I was able to participate in his study. While there are no direct benefits to me for participating, we are hopeful that the results of this study will lead to a better understanding of the mechanisms of this disease and better tailored treatment options based on specific mutations. It is a very exciting prospect in the mast cell community, and I look forward to hearing about the results!

After seeing him and his research assistant for the study, we had about 2 hrs to kill before my scheduled appointment. I had really not been feeling well Thursday evening and still Friday morning. My walking was struggling more than it had been lately, I was shakey, feeling lightheaded, dizziness episodes, nauseas, stomach pain and cramping, itching, some hives, etc. All normal for me, but harder to deal with when I can't just curl up in bed or chill in the bathroom. We found a cafe in the hospital and got Nick some lunch then crashed on some *slightly* more comfortable chairs until it was time for my appointment.

Since Dr. Afrin is so well known in the mast cell community, patients travel from all over to see him. He and his staff are not at all phased to see that we are from Ohio because I'm sure many travel from much farther away. Because they know that most travel a good distance, he makes a point to not rush through any appointments and to spend as much time with each patient as is needed. I think my first appointment with him was 2.5 hrs. While they do schedule the appointments for longer, he typically runs late because he is not willing to sacrifice the quality of the appointment knowing how much we rely on him for input. We (and I'm sure most of his patients) have no problem waiting hours past our scheduled time because we know that when he does get to us, we will get the same time that he has given everyone before us. So while my appointment was scheduled for 3:45 pm, I fully expected not to go back until about 5 pm. Surprisingly he was pretty much on time!

I do think it was the right decision to make the trip to MN despite how I had been feeling in the past few weeks. Dr. Afrin is an incredible doctor and researcher. He truly wants to help his patients and is in a tough field where right now there are so few clear cut answers. He doesn't sugarcoat anything; he makes sure that we are aware that there is no quick fix and it could take a while to find what works. At the same time, though, he is incredibly compassionate and offers as many recommendations as he can. Because we are out of state, he cannot prescribe any medications or treatments for me, but he sends notes to my local doctors who (hopefully) are willing to see what we can do based on his suggestions. He listened as Nick and I related how my symptoms had begun progressing since July and how the past 3 weeks had been particularly rough. He offered his input to where he felt mast cell disease could be the underlying source and what areas he felt like we might need an additional workup to make sure we don't miss something else. Based on my recent symptoms and reactivity, he offered his recommendations of which treatment options might be the best to pursue next. He also suggested some additional testing that could rule out any possible rare autoimmune conditions that can be secondary to mast cell diseases. In every appointment I've had with him, he always finishes by reminding us that while things may be rough right now, there is still so much to try. He encourages us to be patient, stay positive, and not to give up looking for what will work best for me. He gets it. He truly sees what rare disease patients go through on a daily basis and has a desire to help us. I am so thankful for him.

After my appointment, Nick and I got back on the road and drove about 4 hrs Friday night. Saturday we got up, drove about 4 hrs, stopped for lunch and some Christmas shopping in South Bend, IN, then finished the drive home and got back around 7:30 pm Saturday evening. I think we should get professional road tripper status - 24 hrs driving in less than 3 days!

MAJOR shout-out to my AMAZING husband who did ALL of the driving on this trip. Because I was not feeling well, Nick was at the wheel for the long haul. I slept most of Thursday night and a good bit Friday morning as well. He is an incredible husband to me and I could not be more thankful for him!

Leni was also a rockstar this weekend! Bonk stayed with Nick's parents for the weekend, and we took Leni with us. She is still young and has lots of energy, so I was a bit nervous for how she was going to do with so much time having to be quiet and well behaved. She did great! In the car, she just snoozed on the back seat or chewed on her bone. When I was sleeping, I would move to the back seat, and she would curl up with me. She was great in the hotels, and very well behaved at the hospital. We did have a bit of extra time when we arrived on Friday, so we found a nearby dog park and gave her about 20 minutes to run around and stretch her legs. Dr. Afrin even commented that he has a number of patients with poodles or poodle mixes as service dogs and they are doing great work. She was definitely happy to be home last night, and I know she was looking forward to seeing Bonk when we picked him up on Sunday. She's not perfect yet, and we've still got some more work to do on her alerting, but she's getting there and is becoming a fantastic partner for me.

We're home now for less than a week and then we're off again! This time to VA to spend Christmas with my family. Praying that the rest of 2015 is quiet medically (i.e. no date nights!). I have 1 more appointment scheduled for Wednesday, then a number at the beginning of the year. Hoping to feel well enough to be able to enjoy time with family and this holiday season.

Thank you all for your prayers and support! I cannot say enough how much they mean to us. We do feel your prayers and God is working in our lives. I am being healed. It may not necessarily be physical at the moment, but spiritually God has been moving in new ways in my life. I continue to hold onto the promise that He has given that one day I WILL be healed, and continue to HOPE.

Merry Christmas!

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