Short version: I have seen countless specialists to rule out every disease since Sarcoidosis was first brought up in 2019. I’ve been through numerous tests, endless holtor monitor wearing and EKGs. It’s come down to Sarcoidosis in my muscles, eyes and now my heart. I’m in stage 2 heart failure. I try and work as much as I can within the limits of what I can do. It’s not enough, I need proper insurance if I hope to see Sarcoidosis Specialists and start treatments and testing with them. I’ve been on chemo, steroids, antidepressants etc.. I have had CTs, MRIs, X-rays, Table tilt test, stress test, echocardiogram, pulmonary function tests & more. I’m a single mom of 2 very smart wonderful boys. I want to live to watch them grow, graduate, get married, maybe have grandbabies someday. My hope is all I have left right now. I ask for help from you, the neighbor down the road, the minister in my church, anyone who will listen. Bills are falling behind, I’m not able to get to appointments with my limited abilities to work. I am in wait for disability and pray it all goes the right way. If you could share, donate, or leave a kind word, it won’t go unnoticed. Every little thing matters, it helps. God Bless you & Yours -McKynzie
Update: they now want to send me to KU med for more testing, with costs unknown.
Long version with updates
My doctors are switching my chemotherapy to a new one, with 4 weeks off then start it up. The cardiac MRI is right around the corner. Then a MRI of my neck and spine, possibly a PET scan. Donations have halted completely for weeks, I cannot afford these tests without the help of this organization and fundraiser! Share, donate, send a positive word!
We are reaching our goal slowly! With the help of all of you I will be able to afford to get insurance, flights to and from Mayo in AZ and get some bills that have piled up paid. I got the table tilt test done and will have results next week. I have a CT chest today to confirm it’s spread to my lungs and I will update those results as well! My cardiac MRI is scheduled for Sept and that’ll cost since I currently don’t have insurance. It’s needed to confirm sarcoidosis in my heart and debate if a pacemaker/internal defibrillator is needed now or later on. The donations help me get insurance or pay out of pocket for these tests. I am trying to find insurance through marketplace and praying for answers and acceptance by the program! Thank you for helping me live long enough to raise my babies!
Hi all, here’s a little background on my journey with this disease. My names McKynzie, I’m a single mom of 2 beautiful boys!
This journey started in November 2017. I then saw my PA and was referred to the cardiologist and Neurologist. I was diagnosed 2018 with IST, where he then prescribed beta blockers, continued with 3 month check-in’s at cardio.
I visited the Neurologist, I had been started to have memory problems and couldn’t concentrate, so that’s what was tested during my visit there. They ran memory testing and that all came back alright so I did not return.
In Nov 2020 I woke up one morning to find I could not hardly see out of my left eye. I called the optometrist and got in that day, where later on uveitis was found. I continued to lose vision until complete blindness in my left eye until March of 2021.
An ophthalmologist ran tests on my eyes and ordered blood work. He told me of results of possible Sarcoidosis in the L eye. With that information, I started a new road on my journey.
I saw a specialist for my heart that deal with the ‘electricity’ in your heart and nerves etc.. where that specialist then told me I was a healthy young female and had no cardiac issues whatsoever. Pulling the IST diagnosis and putting I was healthy. My regular cardiologist and I no longer continued care.
I started developing breathing issues that progressed past just basic asthma. I sought a pulmonologist with the directive of my provider. I started testing, where CT results showed small granulomas, he was not particularly concerned and wanted a repeat in 6 months- no concerns on the scan once again but found issues with my spine and neck.
In the time this journey started in Nov. 2017-2021 I saw well over 10 different doctors. I presented as a healthy young female. This disease is finicky. I’d seen countless specialists, with no answers leaving every office defeated.
I sought an eye doctor in due to an eye infection, in 2022. With test results he sent me to a Rheumatologist.
After seeing the Rheumatologist and running tests, labs etc. he also agreed it looked like Sarcoidosis. Further testing was required and treatments tried and failed.
Now it’s 2023, the treatment right now is Chemo. After my initial visit with a new cardiologist, having been diagnosed with Sarcoidosis, he ran tests. The results showed my heart is stiff, and does not relax between beats. That my upper ventricles are dilated and an ‘episode’, if it were to last too long, would stop my heart. My heart is in borderline hypertension and heart failure at 30 years old. Sitting with that information as a single mom of 2 young boys I had no idea how I’d do it all.
I have spoken to the Mayo Clinic in Phoenix, AR and if I can raise enough money for a deposit to be seen without insurance, or can purchase medical coverage they will take on my case. They have a clinic specifically for my very rare disease with doctors educated for it in all specialties. I have to travel to North Platte for further cardiac testing July 27th-completed. Then a cardiac MRI to get done-Sept 13th 20203.
Without insurance or upfront appointment costs in hand I cannot get any further medical testing or care to truly get treatment and have hope to go into remission. It can happen with the right treatment! Mayo offers so much more and their doctors have higher education and countless cases of my disease with high success!
I have two young children going through this with me, my biggest supporters. This has been really hard on our family, our finances, our quality of life and our outlook on what the future holds.
Bills are piling up, appointments still required for further testing of the damage to my heart. The fear of losing our home or lack of insurance preventing medical care and I lose my life are overwhelming. I am praying and staying positive as much as I can, but at some point the defeated feeling starts in. Not much for family help. I need a village at this point.
If you sympathize with my story and choose to help this tired scared mama I would be grateful. I would never outright ask, we do have hope that you can share this or donate, to help get the proper medical care and treatment. If you said a prayer for my family we whole heartedly appreciate it and accept it. God Bless and stay safe out there ❤️
Thank you, so so much for you willingness to this cause -MS