Next Stop: Johns Hopkins Medical Center

My biggest connection to the outside world (sadly) is Facebook.  I only friend close friends and family members to keep things as private as possible.  This blog has connected me to a more diverse group, but I absolutely enjoy it.  I think it is important for me to update everyone because I have been vague on Facebook and in person relating to my most recent health issues.  Not only that, there may be someone out there in search of answers or a connection going through something very similar to me.  We cannot look at illness as a weakness and hide it from the world.  We need to share our stories so that real change can happen for those who are suffering from complicated cases.

My last post I mentioned that it was suggested I get a "J Tube" inserted.  This is a tube that goes into the small intestine, by-passing the stomach, to get nutrients directly in to the intestines.  This comes as a result of continued weight loss even with treatment for gastroparesis.  This weight loss has left me with very little subcutaneous fat to insert my insulin pump.  Without that tissue, insulin is not absorbed properly.  That in turn results in erratic and dangerous blood sugars.  A domino effect we would like to stop as quickly as we can because it is starting to trickle down and exacerbate much of my other illnesses.

After much debate amongst myself, my doctors, family, and my nutritionist the conclusion has been made that it is necessary.  My first consultation appointment with my surgeon will be January 29th.  To my hungry body, that seems so far away.  Also, at that time they plan to remove my gallbladder.  About a year ago they found calcification in my gallbladder but opted against surgery at the time because I was too weak to withstand it, and they did not want to make me vulnerable to infection.  Now, we can kill two birds with one stone.  In my opinion, that's a gold medal.

For more than 7 years eating has been difficult.  The last two years have been the absolute worst.  It started with some bad bloating.  Then came some sharp lower abdominal pain. (I won't get graphic but for sufferers it is important to note the following) My bowels changed in color, shape, consistency, frequency, you name it!  Slowly over time I noticed I was feeling overly full frequently.  As time passed the bloating, pain, and fullness became worse to the point of frequent Emergency Room visits with little answers.  Finally a gastroenterologist came into the picture and began knocking down one brick at a time.  At this point he has found pernicious anemia, gastroparesis, Celiac disease, abnormal cells in my colon and rectum (he is certain this is an inflammatory bowel disease but has no conclusive evidence as to the specific type yet), and calcifications on my gallbladder.  Even with treating all of this in addition to treating the nerve dysfunction (which should help digestion) I continue to decline and symptoms are worsening.  I cannot tell you how badly I want to eat an "allergen free" brownie right now that has been in my cupboard for days just screaming my name and yet my gut is telling me it is impossible.  I equate that to torture (excuse my dramatics).

The "J Tube" happens to be a temporary plan.  Once the debate amongst professionals commenced, it was strongly suggested (for the umpteenth time in the past 5 years) that I seek answers and help at Johns Hopkins University.  Luckily for me, considering my symptoms, no doctor referral was needed and they quickly scheduled me for an appointment May 22.  So, for the four months while we wait and hope for answers and relief I will use the "J Tube" as a supplemental way to add calories and nutrients to my diet.  My local doctors (NM) are leaving it up to Johns Hopkins to take it from here.  They have all thrown in the towel, admitting my case is too complicated and sensitive.  They will follow me closely and hope to pick up where Johns Hopkins leaves off.

That adds a whole new can of worms to the mix.  As if finances were not already a worry for the majority of Americans, we are not immune.  With my health issues we certainly have to budget tightly and sacrifice many luxuries.  We make ends meet, but with this most recent news we know we are in over our heads.  My life has no price tag.  I am a daughter, a sister, a wife, a mother, a daughter-in-law, an aunt, and a friend.  I will not let this conquer me without a fight.  I will not let this conquer me.  I will not let this take precious time away from my son.  With the support of great family members and offers by great friends, there has been a benefit account set up for me to help my husband and I with medical and travel expenses we are sure to incur over the next several months.  I will admit it is a desperate plea, but all pride is lost in times of desperation.

My family members have also set up a blog site themselves.  We know the coming months will be trying, but I do not want to keep people wondering.  The sight is set up for my benefit/ donation account.  The blog will be updated as information rolls in due to the fact that I may be too tired, weak, or out of touch to update my own blog.  Please visit this sight for more information http://helplaurenheredia.blogspot.com/  regarding donations, my treatment and status.  Together we will find a way.

I have hope that this will be a new chapter in my life.  I know more life changes are to come, but I have high hopes they will all be for the better.  I wish to improve the quality of life for my son, my husband, my family, and of course myself!

I am a fighter.