today was our big appointment at national jewish hospital. we went in for a new patient evaluation and saw dr hamzeh. we were so blessed to be matched with such a great doctor. he was the perfect combination for us. he was personable yet also very detailed in explaining sarcoid to us. it was quite the experience there. they have that hospital running like a well oiled machine! it felt so organized and smooth going from one department to the next getting tests, scheduling future tests, lab work, and even a education time with the nurse explaining in detail more what the next year or 2 will look like.
dr hamzeh took a lot of time going over our chest xrays and ct scans. he explained all about the statistics of sarcoid disease and what i might look like for mark. he explained that with marks current disease process he has 60% chance of going into remission in approximately 2 years, with continued flareups approximately every couple of years. the other 40% is the risk mark has of having a chronic progressive sarcoidosis. these numbers were really hard for mark and i to digest....we would have loved a 80-20 or even 90-10 statistics. but those numbers and real and we will pray hard that mark is part of that 60% group.
the other concern was there were some red flags of mark's heart. the doctor explained it was very rare to have heart involvement with sarcoid, but with a couple of mark's symptoms he wanted to do a full cardiac workup. he explained that sarcoid in your heart can produce a irreversible heart rhythm that is fatal. he said with the heart and with the brain he always has a zero tolerance. we are nervous that there might be concerns, but so glad he is going to check mark out to make sure there are not any issues right now.
as of tomorrow the doctor is going to start to wean mark off the steroids, which takes a full month. during that time we are supposed to be very aware of any symptoms to make sure mark's body is handling it well. dr hamzeh is not a huge fan of steroid treatment. he would rather use some low dose chemo drugs or some other forms of treatment that he has seen success with, and to use steriods only if totally necessary. we are very excited to have mark start going off the steroids...the side effects are not soo fun!
on june 17th we will start our first full day at national jewish for testing. we arrive at 730 for check in and have a routine echo cardiogram, a agitated saline echo cardiogram, a 12 lead ecg, a averaged ecg, mark is also getting set up with a holter monitor to wear for 2 days to monitor his heart, and then we will be finishing the day with a 1 1/2 hour pulmonary function test!! they said we should be finished by 4:00 that day...sounds fun huh! then on the 18th we go back for a methacholine challenge, and a exercise desaturation with oxygen titration test :)
if all that looks good we will start our schedule of visiting national jewish every 3 months for the next 1-2 years. those days will start with tests the first half of the day followed with a consultation with our doctor going over the tests from that morning and making a plan of care for the next 3 months. this was alot for us both to take in knowing we will be spending a lot of time at national jewish with this disease. yet this was the first time since we received the diagnosis that we truly felt supported and aware of what this will look like for mark. it was a bitter sweet day!
we also got consented to be a part of a research team there that works with sarcoid disease. they drew a bunch of blood for that team today. we are excited to be a part of that process. even if it does not benefit mark, maybe someday someone will benefit from this current research.
needless to say our heads were spinning as we walked out this morning. we had tears of joy and tears of sadness in the very same moment. it hit both of us how amazing it is that god placed us with a great doctor who we both liked, and to live here in colorado with a hospital like this at our fingertips. we even found out our doctor lives within 5 minutes of our house!! god is taking such amazing care of us!! it was also a realization that this was real. this really was happening...this really is our life. mark said it was very hard for him to sit in the waiting areas and know he was here for him. that he was actually diagnosed with a disease that was not going away.
i think it is going to take a couple days for this all to sink in and to process all the information we were given. what was so great was our doctor gave us his email address and told us to email him with anything! he said he did not want us to ever sit wondering about an answer to a question or a concern. he said he wants to be a support to us! i was so impressed! the nurse that works with dr hemzeh was also amazing she gave us her direct number to call with anything !
mark got a flu shot and pneumovax shot today. they said due to this disease it is very important to stay a healthy as possible.
thank you all for your prayers and concern! this is a huge life adjustment for us, but we feel so blessed to have so many people around us who care!