MAYO CLINIC visit #2

As you probably well know, we just returned from Mayo Clinic after 2 very long, grueling weeks of testings.  The purpose of the this visit was initially to find out if there was some type of link between my eldest son's new dysautonomia symptoms and my own illness.  If you know anything about Mayo Clinic, you know they send you from test to test to test all day long, every day.  This was Mayo Clinic on turbo mode with both my son and myself seeing teams of doctors and testing.

MY SON:
My son's diagnosis of POTS was confirmed pretty early on after testing, and by the end of week 1, there was nothing standing out in the blood work or otherwise to suggest there is some strange genetic autoimmune disease at this point.  He was given scripts for beta blockers and another medicine and will be treated with supportive care.  As long as he is able to continue playing tennis and his symptoms do not worsen, they believe he could outgrow this by his early to mid twenties.  He remains very active with just a few minor limitations at this point.  However, because of my illness being in the equation, they were quick to tell us they have no way of knowing what the future could/would hold.  He will be seen by a cardiologist every few months, but as long as he remains the same, and follows their recommendations, they are optimistic his condition will not worsen.  As he is a very private person, he has requested no more information be shared beyond this update.  He wants to be a normal teenager, and we are respecting his decision.  He has coveted the prayers and support of so many!

ME:
I ended up having to stay an extra week for more testing as the needle in the haystack search continued.  As usual, I continued to baffle my doctors since I still to this day do not follow the algorithm or curve for a known type of dysautonomia.  I was lucky to have a great team to work with and one doctor in particular really stood out.  When the others began the all to familiar 'there is nothing more we can do to improve your current situation', he bucked the system and went a completely different route.  He ordered some new tests that had never been done before.  When the results came back ABNORMAL, he realized there is possibly a whole new spectrum to pursue.  Let me try to make this LONG story...short!  I am not going to bore you with all the medical jargon, tedious tests and results, and all the ends and outs.  I'll give the bottom line!

Tests are revealing some new findings that are pointing the doctors in a new direction.  They will be spending the next few months formulating and coming up with BRAND NEW TESTING AT MAYO CLINIC JUST FOR ME!  Given the type of dysautonomia I have is very different from most types they see (not the worst, of course, but very different and in a class of its own), they are going to research new ways to study what is happening inside my body to not allow me to stand or have my legs down.  It still blows my mind that Mayo Clinic is going to formulate new tests for ME.  My momma always told me I was unique!  I will return to Mayo Clinic in 3-4 months, and then again after that.

GOOD NEWS:  They confirmed what the doctors at Vanderbilt had told us!  I am not in failure and my body, while very broken, is thriving and will continue to thrive.  I have made some big improvements since last January and have gotten stronger.  My heart has gotten stronger and my blood pressures have become more stable and less erratic.  My tests show I have made some modest improvements.  Doctors feel there is a chance to one day be able to sit with my legs down and become a bit more mobile.

INDIFFERENT NEWS:  While they feel I have a chance at getting these legs down, I will most likely not live a 'normal' life and never make a full recovery.  (We already knew that, of course, but we didn't know I would live a long disabled life, either)  New testing revealed multiple abnormalities in multiple systems  (the significance and medical explanation is detailed and confusing, I won't go into all the ins and outs, but let's just say given my situation it will be a difficult fix)  Another significant finding (which should have been done long ago) shows some promise as to why I haven't responded to any medications.  They have a theory with some data to back it up, but no fix or even a test, as of yet.  They believe they have pinpointed at least 3 reasons why I didn't show any recovery signs and appeared to be in complete autonomic failure with such a rapid decline.  (which I am not, thank God!)  While this should be in the good news category, they told me right away:  as of right now, they have no way of fixing this problem as of yet, but will begin the research before my next visit.  The new findings are cumbersome..  A few things were a surprise to us, but nothing could possibly get us down after hearing the words 'CAUTIOUSLY OPTIMISTIC' to make some improvements after all I went through last winter.

I am doing surprisingly well after such a difficult two weeks.  I am continuing some tests locally to gather data for the neurologist to continue his research before my next visit.  I was totally prepared to hear the words I've heard so many times:  "I'm sorry, there is nothing more we can do."  Instead, I was told they would even invent new testing for me to try somehow to find a way for me to live a more productive life.  I must be very careful with my anticipation and excitement.  We've walked these halls before!  My family has to be very conscious how we approach any news, whether good or bad, because the opposite result can be very damaging mentally for us all.  We've seen improvements turn to ashes too many times, so we try to not jump to any premature conclusions.  It's important for those who surround us to do the same.  WE are grateful to all who are supporting and praying for us during the next few months.  I have several new medicines and therapies to begin, and we are looking forward to seeing where they lead me!

We plan on continuing business as usual around here.  Our emotions are continuously on a roller coaster and 'sickness' tends to be a dominant ride at our home.  As much as we try to change the conversation, it often rears its ugly head at the most inopportune times.  However, as a family, we are striving very hard to keep our eyes focused on living a full, happy, and joyful life!  Some days are not quite as joyful, but the collaborated effort is ever present.  After two full weeks of nothing but doctors, tests, medicines, and the constant focus on sickness, I personally, am trying very hard to renew my mind.  (ok, I said TRYING!)  :)