I haven’t updated in a while. My medical team has not accomplished much, so there has been very little to report. Doctors tend to do this thing where they stall or shrug you off when things get complicated, and that’s the situation I’m finding myself in unfortunately.
However, I do have a plan B and plan C.
I am currently applying to participate in a clinical study at the National Institutes of Health. It’s proving to be a somewhat complicated process, but if I am accepted I will be treated by top doctors in the country that have dedicated their careers to studying pheochromocytomas. I desperately need medical professionals with this expertise. This would mean I would have to travel to Maryland for treatment, which would be a challenge for me, but could definitely be done.
In the case that I am not accepted to join the study, I do have a back up plan.
Our family is leaving Florida and returning to Texas. This means my current 3 hour drive time for medical care will be greatly reduced, and I will be a matter of minutes away from the hospital where my first pheo surgery was performed. This is also good news for my daughter as she is need of a more specialized endocrinologist and does not travel long distances well at her age. I have no emotional support, or anyone to physically help me here in Florida, other than my husband. Having friends and family in Dallas will be a huge benefit. I do wish the circumstances surrounding this move were different, but we will make the best of a bad situation, and as always by the grace of God we will get through this stronger than ever.
Currently, I have been feeling pretty good. My cortisol pump has been doing its job, and I am working to rebuild my strength. So far so good, I can see progress and feel both blessed and encouraged.
Thank you friends.