A plan of attack
I'm on pain killers so I'm apologizing in advance if my post is awkward. Here's the scoop. I have severe gastroparesis with nausea, vomiting and pain. I can not eat or drink very well at this point so they will put a PICC line in tomorrow so that I can get TPN (total parenteral nutrition) food through my veins.
After they get me to feeling a little better we are probably going to try a Sinemet (levodopa) trial for dystonia since I have never tried it and it might also help with the vomiting if it works. I am praying for a miracle with this drug.
If that doesn't help we will try domperidone. Domperidone is a drug that blocks dopamine receptors but does not cross the blood brain barrier so theoretically should not affect the dystonia. However, there are still rare reports of dystonic reaction with this drug so I will have to be monitored closely.
As a final option I may have surgery to implant a gastric pacer. It is similar to DBS only it is for your tummy. The electrical pulses cause the stomach muscles to contract in the proper manner eliminating the spasms that are causing me pain and vomiting.
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So that is the plan for me right now. I'm just hoping that the plan works so that I can get back to my dissertation. Wish me luck and send some prayers this way.
Love and peace to all!
posted by Synaptic Jen @ 10:58 PM
3 comments
3 Comments:
Wow! That's so much going on. I hope they figure something out soon. We have wanted to come and see you, but have all had colds. Avery and I are feeling somewhat better, but Scott is now sick.
Scott talked to Greg yesterday, and heard that both he and Leif are sick. Yuck.
We are thinking of you and sending our thoughts up to the universe for you.
jenelle, it's brooke....i just want you to know what an impact or may i say impression you have made upon me. what little i know of your story so far and i am up at 1:15am reading more and more about you and dystonia...i thought about you from the first day i met you and i am very glad that i got to meet you but not under the circumstances of course. i want you to know that since we have met i try to tell at least one person everyday about dystonia and parts of your story we have talked about. i will continue to come and see you every day...my last day at bloomington will be oct. 18th. i will be going to work at another hospital closer to my hometown therefore i can be with my child more (only working 3 days a week), being more financially stable as a single mother, and expanding my knowledge in my field. i have already learned other modalities in radiology such as cat scan, interventional radiology, and i will now be learning cardiac cath...i am actually certified to do picc lines but due to legalities i am required to have an RN with me, i will be able to utilize this knowledge for once at a place where they are paying someone else to come into the hospital and do them (the picc lines). i will be able to utilize my knowledge in the field of interventional radiology and be teaching the nurses at my new job...the other part of angiography..intervention, stenting other area's of the body such as renal arteries, the iliac arteries, doing angioplasty's peripherally...blabbering aside, basically what i am getting at is i wish we would have met sooner. but i am thankful that we have met...i will continue to learn about dystonia and i will continue to follow up on you with your permission. i would love to also keep in contact with you. i cannot explain to you how you have touched my heart all i can do is thank you. most of all i want you to know that i have faith in you, your family and support system, that you will and as you already have, find research and spread the knowledge and hopefully find something that will work...i think of you and i smile...i see the look of determination and compassion in you eyes and smile (not to mention you are a feisty one). you remind me of me...maybe someday i can share with you somethings that i have battled in my life that are so trivial compared to what you have dealt with but things that have made me the person i am today and proud of who i am...i love you honey...i feel like you are my sister and we have only known each other a very short while, but i would love to continue talking/emailing whatever is feasible for you and maintain a friendship...and i will be up to see you again...just so you can smile and remind me why i love my job...because i meet people like you...love~brooke
Hi Brooke,
Your kind words mean so much to me. It has not been an easy road for me in this life. I expect that is the case for most people but it is the way we handle the curve balls that life throws at us that can empower us to go on.
My gastroparesis appears to be fairly severe. My pain seems to be getting worse and I still cannot eat or drink without pain. The zofran (antiemetic) and dilaudid for pain are keeping me going. I am finally getting TPN in my PICC line which is really helping me to feel a bit better too. I am scheduled to have surgery on Friday to install a gastrojeujostomy tube for feeding. I am hoping to go home after that and begin investigating the gastric pacer.
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