Sunday, November 30, 2014

UPDATE

I've actually written this post a couple times...but I couldn't seem to find the right words to say what I wanted to say...

This post is designed to be an update for everyone who has been faithfully praying for me and my family during this rough time. I wish I could thank each of you who has been praying in person and tell you how much your prayers mean to me and my family. The Bible talks about prayers and faith being able to move mountains...well, I think at times getting in to see these doctors and making appointments is more difficult than moving mountains...but those mountains have been RUNNING away...for the latest mountain movement going on, check out my previous post about the appointment in WI.

Galatians 6:2 says, "Bear one another's burdens, and thereby fulfill the law of Christ." Thank you for coming alongside me and my family during this rough time and surrounding us with your prayers and support. It is still difficult for me to ask for prayer, but please know that we appreciate every prayer that has been offered on our behalf. There have been many times when I've been feeling really down, and I've gotten a text or call or email right when I needed it. THANK YOU!

I've tried to be consistent with this blog and update regularly as we get back from various doctor appointments and such, but hopefully this post will give a nice quick (or not so quick as the case may be...) overview of everything that's going on.

At the moment we are still in a waiting phase...unfortunately. It seems like most of this journey lately has been waiting...waiting to see if new medicines will work, waiting for test results, waiting for appointments... This past month I had 2 big appointments, one in MN and one in WI. Right now, we still do not have any answers...we are going back to MN in a little over a week for a follow-up appointment and to go over test results. We should be hearing back from the doctor in WI about the same time. So hopefully we will get some answers SOON!

What we do know is that I more than likely have some sort of systemic issue going on. What that is, we are still not sure. That is what all this most recent testings is about. Both doctors feel confident they have a good idea what may be going on, so we are doing a bunch of testing to either confirm, yes, I do have it, or no, we can rule this out.

We have been able to confirm that my autonomic nervous system does not work properly. This can manifest itself in multiple ways including problems regulating my blood pressure, heart rate, body temperature, blood flow, digestion, etc. Anything that is supposed to be "automatic" may not function correctly in my body...This is likely caused by one of the systemic issues that I am being tested for, so hopefully we will know more soon.

The biggest issues I've been dealing with lately have been stomach/intestine issues, allergic reactions, and black outs/passing out. I have gastroparesis which essentially means my stomach (and top part of my intestine, in my case) are partially paralyzed and do not work properly. Again, getting back to the autonomic dysfunction, my stomach is unable to handle normal digestion after eating. For those of you that knew I was in the hospital back in October, it was due to severe GP symptoms that I could not control on my own at home. I'm working with a specialist in PA trying to find the best way to treat these symptoms until we know the actual cause. The allergic reactions can range from as mild as itching, a rash, and a few hives to full anaphylaxis. I know some of my triggers but not all. These reactions can come on suddenly or appear slowly and progress to more serious. As we move toward a diagnosis, we are hoping to be able to better identify my triggers to I am able to avoid them and my emergency medications. The passing out is another result of my autonomic nervous system not working properly and my body being unable to regulate my heart rate and blood pressure normally. Again, the hope is that as we figure out the underlying cause of these issues, we can treat that as opposed to continuing to treat the symptoms.

So if you haven't caught the underlying theme here, we are waiting...still...but more hopefully now than in the past few months. We should be hearing back with some of the test results in the next few weeks and will be traveling back to MN in a little over a week for a follow-up.

Please continue praying! While we are (hopefully) making progress, there are still a lot of unknowns. Specifically, we are asking for prayer regarding these tests. Both doctors feels confident that we are moving in the right direction for diagnosis, but we need lab confirmation. PLEASE BE PRAYING FOR POSITIVE TEST RESULTS. We are desperate for some closure and also to be able to treat the underlying issues effectively instead of just attempting to manage symptoms.

I hope this post wasn't too rambling or confusing, and I hope that it is encouraging for you to know how your prayers are being answered and are sustaining me and my family through this rough season. We are so thankful for your support and hopefully will be reaching some sort of resolution in the next few weeks. Stay tuned!

Tuesday, November 25, 2014

God Moments in WI

Sometimes God just amazes me. Maybe that should be more often, but there are just sometimes where I am left in awe of how God orchestrates things that we never could have seen coming.

My parents and I are currently driving back home after my neurology appointment in WI. This appointment was so different than we had anticipated, and it was totally a God thing. 

First, I was never supposed to see the doctor that I did. Back in July I had met Dr. Chelimsky at a conference and he encouraged me to send my records to his office and see if I could get an appointment to see him. I went through all the effort of collecting referrals and my records only to be told he was no longer accepting new patients but I could see one of his colleagues. I made the appointment but with the intention of cancelling later because I really wasn't interested in seeing a doctor I knew nothing about. About 2 months after the appointment was made, I received a call from the neuroscience clinic in WI saying the doctor I had been schedule to see was going to be out of the office that day and they were going to put me on a wait list for any cancellations. I told them I was not local and would not be able to come in on short notice. They came back and said I could keep the appointment but would have to see a different doctor...guess who that ended up being...Dr. Chelimsky! So we felt like we should keep the appointment because it just seemed so weird that things worked out for me to actually be able to see him. We really felt like maybe God had something in mind, so less than 2 weeks after getting back from MN, we headed to WI.

The next God thing that happened was just as crazy. While we were in with Dr. Chelimsky, we found out that their clinic doesn't schedule patients with doctors until they have had autonomic testing in their lab. I hadn't done ANY of that. I had a tilt table test (TTT) about 4 years ago, but no testing at all in their lab. That I was even able to schedule an appointment with ANY doctor there was definitely a God thing because that was completely out of line with their procedures.

Because of that, Dr. Chelimsky decided to see if I would be able to get any testing done since I was already there, and he didn't want to make me travel again if we could avoid it. Turns out the testing lab just HAPPENED to have a cancellation right when my appointment with Dr. Chelimsky was finishing. I was able to go right over to the lab and get complete autonomic testing done...REALLY?!?! When does that EVER happen at a major research facility??? It takes MONTHS to get in for testing and to see these doctors and I was able to see the doctor I wanted without the required testing and get impromptu autonomic testing...how is that NOT a God thing?? I even told the nurse who was hooking up all the testing that and she agreed! =)

The appointment and testing went well. Dr. Chelimsky was great and personable. He had already gone over the records that had been sent ahead, and had specific questions and assessments that he did in his office before sending me over for testing. Based on some of those questions and my performance on the assessment tasks, he said he felt that I may have an acquired mitochondrial issue. He is doing some genetic testing and vitamin testing that I think may shed some light on that, and he wants me to try a "mito cocktail" of supplements to see if I see improvement on those.

The autonomic testing was a bit rough...I think it would be interesting to see how a "normal" person reacts to these tests...I was EXHAUSTED and COMPLETELY wiped after the testing which consisted of the very intense lying on a bed and breathing! haha, oh well...I had the Deep Breathing Test, Valsalva, QSART, and 5 minute TTT. The Deep Breathing Test is exactly what is sounds like. I had to breathe in and out in time with a metronome for 10 breaths. About halfway through I was starting to struggle but did manage to complete both trials. The Valsalva is where things got interesting. I had to breathe out as hard and long as I could against resistance and reach a certain exhaling force for heart rate and blood pressure variability assessments. I did okay on the first trial, but almost passed out on the second trial and the results showed my BP and HR bottom out right about when I started to black out. 

The QSART was the easiest of the 4 tests because I didn't have to do anything. No breathing required! Well, I supposed I was breathing during the test, but they point was NOT to make me pass out like some of the other tests. This test was assessing my peripheral nerve response to an electric stimulus to see if I had any nerve damage. This test was also normal which was good! This confirmed that I do NOT have any form of neuropathy and my autonomic dysfunction is a central issue. Even though that sounds kinda bad, it's actually good that it's a central issue and not peripheral.

The last test was the 5 minute tilt table test. This test is pretty simple but absolutely HORRIBLE. Haha...this was the second TTT that I've had and it was definitely worse than the first one. After 10 minutes of baseline measurements, the table that I was lying on was tilted to almost vertical, so I was placed in as close to a standing position as possible. I was not allowed to move or do anything other than report my symptoms or answer the doctor's questions. It was only 5 minutes because we did not have a lot of time, but that seemed to be enough time to generate a good amount of symptoms. In a "normal" person, the heart rate should increase and blood pressure will probably drop slightly, but the body is able to compensate and within the first minute, vitals will re-stabilize to close to baseline measures. I didn't do that...my blood pressure was all over the map, high then low then high again, and my heart rate almost doubled and stayed elevated. I felt HORRIBLE for the entire 5 minutes and for a good bit after they lay me back down. It took me another 10 minutes or so to recover from being vertical. 

So what does this all mean? Well, like I mentioned earlier, we were able to rule out any peripheral issues contributing to my autonomic dysfunction. So that is an answer to prayer! No neuropathy to deal with and we at least know my issues are centrally related. The Valslava confirmed that I do have what's called Reflex Syncope in the neurology world (Neurocardiogenic Syncope to cardiogolgists) which we had known since my previous TTT in 2010. There is still a bit of a gray area regarding the TTT because typically this test is at least 10 minutes. Based on my vitals, I have Postural Orthostatic Tachycardia Syndrome (aka POTS) but we're not sure if it counts since it was so short. The fact that my blood pressure was all over the map also indicates autonomic dysfunction, so we are pursuing treatments for that.

I'll be doing a comprehensive update in another day or two, so I don't want to spend a ton of time on that right now, but just to say that this trip was well worth the 16 hour drive, battling the snow, and not getting back home until 2 am. I would highly recommend seeing Dr. Chelimsky. He knows his stuff and looks at the whole picture and not just his specialty. Even though he is a neurologist, he asked about my GI issues and skin issues and allergies and asthma. He spent the time to look at me holistically as a unique person and not just another patient coming to his lab. 

But more than I was impressed by Dr. Chelimsky and his lab staff, I am so much in awe of how God has been working in these situations. The circumstances around this trip were so completely mind blowing that there is not other explanation than God was opening doors for us to walk through. We are hopeful that in another few weeks to months we will have some definitive answers and can begin actual treatments instead of just guessing what *may* help. 

Thank you so much for your prayers and please continue praying! God is definitely in the midst of our trials and making himself known and giving us encouragement along the way.

Tuesday, November 18, 2014

2 Down, 1 To Go

If you've read previous posts on my blog, then you know I absolutely LOVE seeing new doctors! HA That couldn't be farther from the truth! I HATE HATE HATE seeing doctors for the first time because I never know what they are going to say, if they are going to discount my symptoms, if they are going to tell me I'm too healthy for them, if they will tell me to come back when I can't walk anymore (yes, actually been told this by a doctor)...let's just say I'm NOT A FAN! But such is life with chronic illness, I can't escape doctors...so as you may know after reading my previous post, November is kinda a big month for me considering I have 3 BIG appointments. Especially after my recent experience in the hospital, it is safe to assume I've been a bit nervous for these appointments. But now 2 are down and only 1 to go, so I figured I'd go ahead and update how those went.

Dr. Afrin
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!

Dr. Mabee
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!

Saturday, November 1, 2014

November

Back in July I kinda hit a breaking point and finally (after much persuading on the part of my parents and now husband) made appointments with some specialists to try to figure out what's going on. These specialists were legit specialists so as usual, it took MONTHS to get an appointment. One was at the beginning of October in Pittsburgh with a Neuro-gastroenterologist. The other two are coming up this month in Minnesota and Wisconsin.

I'm both excited and terrified for these appointments. I am very hopeful kind of out of necessity and these visits will help sort things out and help us find better ways to manage everything. In a couple weeks I'll be in Minnesota for 4 days for an appointment with Dr. Afrin who literally wrote the book on mast cell diseases. When reading some of his articles, I could be the poster child for mast cell activation syndrome, so I'm looking forward to actually get an official diagnosis if that is what's going on. If it's not, my guess is that Dr. Afrin will know, and we can at least cross that off the list. The Wisconsin appointment is with Dr. Chelimsky who is a Neurologist. I met him at the Dysautonomia International conference in July which prompt me scheduling with him. I was very impressed when I met him in July, and he seemed to be really willing to work with patients and not tell them they are making stuff up or crazy.

And that's what I'm nervous about. Even though I've had a really good experience with Dr. Levinthal so far and both Dr. Afrin and Dr. Chelimsky get fantastic reviews from their patients, there is also some part of me that goes in expecting yet another doctor to tell me I'm crazy, or there isn't anything wrong, or (my favorite) I'm not sick enough to see them yet...Until I actually meet these doctors I know that I'll be kinda nervous, but I'm hoping and praying that we get some answers either way about what is going on.

I still have more than a week before we leave for Minnesota, but I can definitely say I've started thinking about it often. Another reason I'm a bit nervous is because we are flying to MN. The last time I was on a plane was on the way back from Mexico after a mission trip with my church. I had what we are now pretty sure was an anaphylactic reaction to some lady's perfume. That was REALLY scary, especially when they almost diverted the plane to Mexico City because I was reacting so badly. At least this time we are in the US, but that doesn't take away the nerves I have for flying. Especially since I've had a few more similar reactions in less enclosed spaces, so who knows what will happen inside the plane...On the bright side - I'm heading to see a doctor about these reactions so maybe it wouldn't be so bad if I had a reaction...oh the irony of traveling halfway across the country because of unknown medical issues. At least we are driving to Wisconsin...

So that's what's up for my November! Traveling all over the Midwest for doctor's appointments and hoping to get some resolution for all my issues. Not to mention teaching 3 undergraduate exercise science class, working on my dissertation, moving into month 2 of being married, and just managing life in general...not busy at all...of course not =)