Friday, April 8, 2011

Participating In A Clinical Study

This day last week I went to New York City for the first time in my life.
The anxiety of anticipation and expectation was by far, greater than any anxiety related to the actual experience... although subway navigation during rush hour on a Friday morning when computers are down... well, that was a bit "nerve racking"... especially with twin 7 year old boys prone to impulsive behaviors and high energy levels!

After a 2 hour navigational adventure, I arrived at Mount Sinai ready to participate in a Clinical Study designed to examine the long-term effects of Acute Intermittent Porphyria. I respect research and value evidence-based decision making. I am excited to be a part of the study.
The initial process was pretty standard, involving paperwork...consent review and signature... then a thorough question and answer session. Looking back, my only regret was that I should have eaten better and had more time to transition... I felt more "scatter-brained" than I would prefer but I gave them access to this blog and copies of my medical record... they have a good amount of solid information to start with.
About my "colicky-cranky" AIP...
I explained that significant stress is an unavoidable component of my daily existence. After failed in-vitro attempts we were overjoyed to build our family via international adoption. Unfortunately our ,now 7 year old, twin sons have significant behavioral demands linked to early life challenges. I try to be very careful in managing my lifestyle choices to avoid triggering my AIP... and yet it remains a constant "background music" almost every day of my life. Stress and illness seem to be the triggers I primarily cope with now that I am post-menopausal (2nd to a total hysterectomy in 2008).
The suggested treatment plan is to receive monthly Panhematin infusions as crisis prevention. I agreed.
I haven't started yet...but I fear the risks and the unknown.
Even though my quality of life has been significantly altered...I am familiar with my AIP... I am used to it.
It would be so awesome to regain some vitality... but is it worth the risk of getting a clot and becoming paralysed or getting phlebitis... or, or, or...
Sometimes it is just NOT helpful to be a nurse... my mind races with the "what ifs"...
I will try the infusions... because physically I feel like my body is decomposing daily... more and more toward a place that I really don't want to be.
I will see a Liver Specialist next week (to establish long-term monitoring) and I will set up an appointment with a Thyroid Specialist to deal with my Thyroid issues.
I am so very fatigued both mentally and physically by constant health issues that make me feel terrible... BUT I will continue to try my best to be positive, to be hopeful and to seek solutions.

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