One more update until I come back with a surgery date next week! I got a central line today! I am finally getting nutrition and hydration!

For those that have been following along, I have a complicated medical history outside of ES. Before I found out I had ES and that I’d need surgery very quickly, I was in the middle of being bounced between my GI specialist, General Surgery, Vascular Surgery, my PCP and my palliative doctor in order to figure out a way to get me nutrition and hydration. I have severe gastroparesis (Dr. Ellison thinks this might have been worsened by vagus nerve damage due to ES, but it’s also highly associated with vEDS which is my primary diagnosis). The GP has led to rapid weight loss/an instability in keeping weight on and constant hospitalizations over the years for weeks at a time due to malnutrition. The ES has made this even harder, because on a good day where I feel I can eat my jaw won’t let me chew!

I went to my general surgery consult this morning hoping for the best. Not only did he schedule surgery to place a G/J tube NEXT THURSDAY, he put in an order with the hospital to place a PICC line. I thought I’d have to wait another few days since it was already noon on a Friday, but in the car on the way home from the appointment (my friend was driving - I won’t drive until this thing is out of my neck) I got a call telling me to be at the hospital by 1pm TODAY for central line placement. We were an hour away. We made it with 6 minutes to spare. I have a line! I have access! I am going in for a hospital infusion of fluids and TPN tomorrow and on Monday home health will be coming out to set me up with supplies so I can do this myself at home. I cannot believe how fast it all happened.

So, I have surgery on Thursday for a feeding tube. I have a line. I will find out my ES surgery date on Monday and it will be within the next 4 weeks. SO MUCH is going on around me, and I have to take care of medical leave paperwork for my job (but I do get to take 5ish weeks off with 100% of my pay and am VERY grateful), but right now all I can do is feel lucky. I have fought so hard for this care. I have advocated for myself in ways I never thought possible. Long phone calls, phone tag, emails, research, reaching out to surgeons at university medical centers - it feels never ending, but now there is a light at the end of the tunnel. I truly feel with nutrition I will be strong for my ES surgery (right now I am very weak), and after ES surgery and recovery I will regain some quality of life that’s been missing far too long. Wish me luck and thanks for all the support!


That is really great news! I’m so glad your self-advocation has paid off, @slekeille! Here’s to getting hydrated & fed & feeling better from those two things alone! :clap: :clap: :clap:


So pleased that this is getting sorted quickly- you deserve a break! :hugs:


I agree with the other comments already shared and hope you regain that quality of life you deserve!!!