I later ended up with a feeding tube to eat into my intestines. This picture was me & my first feeding tube, an NJ tube.
A mayo surgeon promised he could fix things with a pyloroplasty breaking the valve between my stomach and intestines. This didn’t work & caused additional issues with intestines contents backing up into my stomach and issues with blood sigar regulation.
My GI motility slowed affecting my entire GI tract so my feeding tube was switched from a J tube to a G/J allowing me to vent my gastric contents into a bag and still feed into my intestines. I was diagnosed with POTS, a Syndrome that doesn’t allow me to stand up without passing out, I have an issue with my heart rhythms going between too slow and too fast, a dangerous heart rhythm, prolonged QT, and a pericardial effusion.
I have migraines 4-5 times a week.
My body has been so deconditioned I have issues walking without falling and having dislocations/subluxations.
In Dec 2018, I had finally had my puzzle pieces put together by a geneticist, that I have Ehlers Danlos Syndrome. I’m currently awaiting the genetic results to see what flavor.
I used to be a gainfully employed IT Release Manager. Having multilpe surgeries, I had to take short term disability several times. This last run included severe pain and cognitive dysfunction and my previous company, saying they are champions for people with disabilities & special needs, decided to fire me, sending me a letter 7 days prior to my short term disability being up saying return or be terminated. I tried to see if they’d work out an arrangement but they closed the door saying it’s policy, but it’s not. They treat each case differently. I asked for the senior leaders to do the right thing to be met with silence. I worked for them just short of twenty years from consulting to full time employment. Not working (from home) felt awful because they (the team I worked with day in & day out) were my family.
My husband dosen’t work because he’s my full time care giver. I haven’t been allowed to drive since 2011 and with 4ish appointments a week, it’d be impossible to manage my health without him assisting.
Being fired put us into a position of having to pay COBRA priced benefits monthly which are huge & it’s the new year & we have all the out of pocket / deductibles to meet and my company is not processing my long term disability claim (They fired me in October & still haven’t had medical review of my claim). The geneticist said best case I’d need one year to gain physical and cognitive ability to be able to work. My PCP was more reserved saying she thought my disability was going to be permanent. But it’s been four months with zero income and we’re drowning.
We absolutely hate asking. If you can spare 5.00, that is five dollars we will appreciate so much. We’re looking to fund 20+k to fund premiums and medical expenses for 2019.
Samples of expenses:
My medical expenses last year were over 400,000.00! My enteral formula and feeding supplies cost 6k monthly! My migraine injections cost over 150.00 per injection. Each “trip” to Mayo consists of a 2.5 hour drive each way. Usually we have hotel expenses to make our appointments that can spread over days (I didn’t include hotel expenses in my GoFundMe). My geneticist is not aligned with insurance so we have to pay him out of pocket irrespective of insurance. His costs range from 100-350 per visit and he is also in Jacksonville. I have a specialist in South Carolina two hours away who does invasive physical therapy to deal with pelvic floor failure to try and avoid surgery. Her schedule is more flexible than Mayo, so we never need a hotel, only the money in gas & visit expense. My feeding tubes are changed quarterly, each change is 8-10k depending on the amount of granulation tissue and time they have to spend with recovery. Since the last tube change resulted in a hernia, I’m hesitant to go back to Mayo IR and may try Memorial IR but that could result in more issues.... frying pan...fire?
I have geneticist, cardiologists, hematologists, physical therapists, neurologists, neurosurgeons, endocrinologists, rheumatologists, retina specialists, ENT specialists, pain management, palliative care, gastroenterologists, motility specialists, general surgeons, interventional radiologists, etc etc etc... you know, with my advanced age of 40, this is typical!
- CJ Dugan
- Erica Pionke
- Alexander Rouleau
- Pratyush Gaur
- Jamie Cole
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