For anyone in the mast cell community, I'm sure you've at least heard of Dr. Afrin. He is one of the guys who literally wrote the book (or maybe the case is still writing) on mast cell diseases. Once we started walking down this path of me possibly having a mast cell issue, I went ahead and made an appointment with Dr. Afrin (after much persuading on the part of my mom and husband). This was back in July, and only having to wait until November for an appointment seemed quick! Oh the life of having unusual chronic conditions.
We flew out the day of the appointment and had been told to plan to stay 3 days for testing. Dr. Afrin is actually in the Hematology/Oncology department at the University of Minnesota, so my appointment was in the cancer clinic. It was a bit weird walking in there because I was the only person under about 65 years old in the waiting area. I did end up seeing at least one other mast cell patient while I was there who was not older, but I was DEFINITELY the minority.
The appointment itself was really good! We saw his nurse first, and she was really good also. She was very up front saying that he was running a bit behind but the reason was that he wanted to take as much time as necessary with all his patients because he recognizes that many travel from quite a distance to see him. She also reassured us that we could expect the same level of attention and time when he did get to me. As someone who traveled 800 miles to see him, it was very nice to hear that he was willing to spend the time with each patient to be thorough and not miss anything. We did wait about 30 minutes after my scheduled appointment to see him, but it was well worth it! Plus, I think I've waiting that much at other less specialized doctors for only a 15 minute appointment...
Dr. Afrin did not disappoint and was just as good as other people have said. He walked in with a 3 inch stack of papers that I soon came to find out was my medical records. He had already made notes and comments on them, so it was clear he had already spent some time on me before I met him. He had a fellow with him who was doing a rotation under Dr. Afrin. I was asked if I would be okay if the fellow sat in on the appointment to hear Dr. Afrin's comments. I was completely fine with it, and ended up really being glad he was there for a couple reasons.
The first is because it helps educate the next generation of doctors. Right now, so few doctors know about or understand mast cell diseases. If these fellows and residents can be exposed to these conditions before they are released to practice, then hopefully diagnosis can be easier for people walking this road after me. Even one fewer year of struggling can make a huge difference in someone's life with chronic illness.
The second reason I liked having the fellow there was because I think I got to hear some things I might not have otherwise. Dr. Afrin was really good about talking about what he was looking for and going through my entire (3 inch stack) medical history that was sent to him by my doctors. Because he was training up the fellow though, there were times he would make comments to the fellow about things he would expect to see in mast cell patients and then show blood work or test results in my history that confirmed what he had just said. Or he would make comments about the challenge it can be to diagnose and possible misdiagnoses and again, find those in my records. It was kind of like having a commentary of the appointment that was fun to listen to.
Anyway, like I said before, He was VERY thorough. He went page by page through my entire medical records that had been sent from my doctors. Then he asked me to give him the play by play of when things started, how they progressed, and where I had been and was. THEN he did his own medical history by asking me specific questions about symptoms and reactions and my medical journey.
At the end of the appointment he basically said, he is fairly confident I have Mast Cell Activation Syndrome but cannot make an official diagnosis without lab results. So he sent me to the lab for many, many, many (did I say many) tests. They were all blood work and urine so nothing invasive or painful. But be forewarned, if you struggle with hypovolemia or anything like that, be ready to feel rough! I have blood volume issues, and they took 16 vials of blood...I'm not that big, so percentage wise, that was a good bit of my blood. I was definitely struggling for a few days after. He also had me do a 24-hr urine test which is why we had to be there for the extra days. This test is SUPER sensitive and has to be kept refrigerated at all times. We spent most of the next day just hanging out in our hotel room so I could be close to the mini fridge we had in our room. Although I'm pretty sure I set a record for least amount of urine produced for a 24-hr sample...
And that's basically it! I handed in the urine sample the next day and we were done. Unfortunately it takes about a month to get results back, so we are in a waiting game... I am following up with him in mid-December to discuss the test results and figure out where to go from there. So now we are just praying for positive results so we can have some closure and can move forward in targeting treatment to the core of the problem rather than just continuing to treat the symptoms.
Anyone who is on the fence about whether or not to make the trip out to Minnesota to see Dr. Afrin, I HIGHLY recommend it. Like I've said, he is very thorough, knows his stuff, and really does seem to want to help. He is more than willing to work with doctors in your area, in fact, that is one of his stipulations, that you HAVE to have a local doctor that he can coordinate with. So if you're unsure, GO!
So since I need a local doctor to coordinate with Dr. Afrin, I had to set up another appointment locally to find someone I could work with. This time I was able to get a referral from a friend about a primary care physician that has been really good for their family and willing to work with them. That appointment was earlier this week. I was nervous about this appointment, but since I had talked with my friend about him, I was hopeful that it would be a good appointment.
And it was! There was nothing extraordinary about it or anything, but he listened and wanted to know what doctors I was working with and what I wanted him to do. He said he would be more than willing to work with me and coordinate with my specialists and be the point person for me. It still seems a bit weird since I don't really know him and I'm used to working with my primary care doctor in VA, but I definitely need someone I can go to here when things get bad. So another successful visit!
One more doctor visit this month and then back out to Minnesota in December. We are trying to get as much in as possible this year because between my two hospitalizations and other tests and appointments, I've well exceeded my out of pocket maximum. May as well get all this testing and such done now while insurance is covering it before the new year rolls around. Next appointment is with a neurologist that I met at the Dysautonomia International conference this past July, so hopefully I will have another positive review next week. Stay tuned!