UPDATE 3/19/25
I survived the complicated trip to Minnesota from the Oregon coast, returning with a horrible case of poisoning as well as many more answers. My update isn’t as simple as I’d hoped, but here goes: My heart has 3 issues. The upper is an aneurysm, the lower is nearly full blockage, & the rest is the disease killing the muscle. The most pressing is returning blood flow (currently 1-21%) to my organs & lower extremities so that will be attempted in a few weeks…when I go back for Mayo round 3. While there I will be meeting the rest of the specialists who have any chance of helping stabilize my spine & removing the tumor. I will also be meeting with the geneticist to hopefully get the rest of my DNA testing finally ordered. Today we learned that all cardiology related genetic results came back clear. This is great news for my family & helps ease the burden on the aneurysm for now. But it complicates the treatment & prognosis for me. I never expected to be planning my 3rd trip in four months, but here I am. My odds are slim but my team & I haven’t given up. I praise God for the good parts & pray for continued guidance & comfort for the rest. Thank you all for continuing this crazy journey with me. I keep my faith & trust in God to keep providing the way to seek any relief & healing possible. Thank you so much for the incredible love & support. God is so good!
UPDATE 2/13/25
The new cross-country trip is officially set for just a few weeks from now. It is unclear what, in addition to lots more testing & new consultations, will be done this trip. Unfortunately the DNA results are still not back. And, even more sadly, one of the specialists we had been praying would join my care team has declined. It’s been a daily battle with new sources of ever-increasing pain to keep fighting the disappointments. I know God has a reason & I pray often that He keeps guiding me through.
I want to express my constant & continued gratitude toward all who have helped along this journey. Even when I feel like quitting because it’s too hard, too expensive, & feels futile, you have all helped bolster me up & encouraged me to keep going. Thank you all so very much.
My next update will be either with DNA results (hopefully before I travel), the updates after my Mayo trip, or from Minnesota if they choose to keep me longer than the currently scheduled few days. (A new development with my spine may cause them to keep me for surgery.) At this point I simply pray for God’s will to be done as well as His comfort & guidance. Every choice I make from here comes with great risk & potential complications. But no matter what, it is in His hands. Please continue to pray for the entire situation & help with these costs if you are able.
UPDATE 12/14/24
Forgive the lengthy update. Life has gotten more complicated!
I recently returned from an extended visit to the Mayo Clinic in Rochester, MN. The first 2 days was initial cardiology testing. Day 3 was the consultation that resulted in 3 more days of testing & a final meeting with the head cardiologist before leaving to fly home. Labs, scans, etc. all confirmed I have 2 rare & incurable illnesses involving my heart & spinal tumor. The only results we are waiting for are the genetics to know whether my sons & granddaughter could end up with these as well. The DNA will also help my doctors know what, if anything, they can do to prolong my life & to increase the quality of what’s left.
My cardiologist has already begun looping in other disciplines for my care & wants me back in Minnesota as soon as all of them can schedule additional testing & scans as well as consultations (tentatively mid January). We hope to manage it all in one more visit. It is still possible that their combined treatment plan could include the long-awaited abdominal surgery. But that cannot be determined until endocrinology, neurosurgery, & cardiology all compare notes after DNA & the additional test results are in.
So I’m at a difficult spot, waiting to know what is left to do…if anything. The current financial situation is bleak. Thanks to the generous donations from this campaign as well as a few others, I have been able to pay for the first trip to Mayo as well as manage to keep my in-home caregiver here for a few hours each week since this past spring. My insurance policy will begin paying for my caregiver around January 22nd, once the elimination period (or deductible) is met. In the meantime, the remaining out if pocket cost for that is approximately another $2500. With a second trip to Mayo costing around $3000, that puts my current need to $5500. With all the extra out of pocket treatment expenses as well as a couple of urgent home repairs, finances have been beyond difficult.
Your kindness & generosity have allowed me to get this far in my care journey. I am continuing to trust that God will provide a way for whatever next steps He wants me to take.
So I am updating my campaign need for just what expenses I am certain will occur over the next several weeks. It is far less than where it all started but still feels like a mountain to overcome.
My heartfelt gratitude goes to each of you who have prayed, cared, & donated over these long & frustrating months. I pray you are all blessed for joining me on this wild ride! And I will, of course, update again as soon as the rest is revealed. Until then, Merry Christmas & Happy New Year!
UPDATE 10/19/24
After a grueling time of it all, one of the referrals was finally approved. Mayo Clinic Cardiology is willing to take a closer look at my case. So I’ll be traveling to Minnesota for more testing & a consultation with specialists. Praying to get some definitive answers. I am at peace with whatever the results. God has already provided for the airline tickets. I’m so blessed! More updates coming in early December.
UPDATE 9/26/24
It’s been a long summer of more waiting & hoop-jumping. Many of the newer symptoms have eased but not all. And the constant spine issues are as present & unpleasant as ever. The good news is that, after many more appointments & tests, I finally have referrals in place to the one medical facility that may be able to help. It will require at least one cross-country trip should they accept my case. And they have assured me that each department I would be working with will help coordinate my care to do everything they can to make my trip as short & efficient as possible. In the meantime I’m in a holding pattern with everything else. Praying for rapid replies from the cardiology & endocrinology departments who would be the initial leaders of my care team. I will update as soon as I get confirmation & a time frame for travel (if approved). It has been a long wait & such grueling work to keep fighting for care. Praise God for all the love & support along the way. <3
UPDATE 7/21/24
I had hoped to have better, or at least more definitive news to share by now. But the medical world just doesn’t work that way. After two more months I’m still fighting to get a plan in place & receive any life saving or improving treatments. More tests. That’s what I get, with all of the pain management tools I would typically use still being restricted. The stabilization surgery is still greatly desired. But the likelihood of getting approval is slim. The new issues with my heart & tumor(s) have made “elective” surgery nearly impossible. It’s also severely limited surgical options for any reason. I continue to pray for God’s wisdom & guidance as I keep navigating these uncharted waters. It’s looking like any potential treatment will be out of state & possibly cross-country. I’ll update as I learn more. Thank you all for the continued love, support, & prayers. I can use every one of them!
UPDATE 5/13/24
Well several more curveballs have been chucked my way. Currently in a holding pattern for surgery for a few rather huge reasons. The results will determine which direction I can even try. Testing will be done next week to determine if the tumor on my spine (or another tumor not yet discovered) is causing my endocrine system malfunctions. If that is the case, then the offending parties must be located & removed. If no tumor is the cause of the dozens of debilitating symptoms, who knows what the next phase of diagnostics will look like? As it is I’m unable to take any medications, supplements, allergy or pain relief, or stimulants of any kind. It’s been 4 weeks so far with no end in sight!
And as of this afternoon the difficulty level of a potential stabilization surgery just jumped several levels due to recently diagnosed heart issues. If, after the dust settles, I am able to have the stabilization surgery I will need to find a different specialist who would agree to perform it as an in-patient procedure with a cardiac ICU at the ready. No idea yet what increase that will mean to the surgical bill or if I can find a surgical team willing to try.
So here I am, still in a holding pattern, trying to manage many more layers. I pray God points my providers in a helpful & healing direction. And I thank you all for your love & support through this very winding path I’m on. God Bless ❤️
UPDATE 3/29/23
The meeting with the surgeon went well. He is wonderful & I know God put me in the right hands! A few more things need to be done before we can finalize the surgical plan. While that all happens there is a bit more time before a date can be set. That means there is a bit more time to reach the 20% for the deposit. And Praise God it is getting so much closer! I can see Him working things out in such unexpected ways. Thank you for your prayers, love, & kindness. May God bless you all.
UPDATE 3/12/24
Two more weeks & we set up the surgical plan. I’m hopeful that this is all part of His path for me. But I trust Him to keep guiding me no matter what. Thank you all for the kindness, prayers, & generosity! God is so good!
UPDATE 2/21/24
Praise God! Things are happening. Thank you doesn’t seem like nearly enough as every dollar is so very important to me. After only a week we are well on the way to meeting my first goal. In only 5 weeks is my appointment to finalize the surgical plan. The surgery date can be set when this fund reaches 20% of the total needed. After that it would be approximately 60 days before the pre-op appointment when the rest would be due. Please keep this little engine chugging!!! God bless you all!
Hello,
My name is Jackie & I live on the beautiful Oregon coast. The story you are about to read is that of a single woman who has never been good at or comfortable with asking for help. But life tends to go in very unexpected ways. Mine has gotten very difficult which now forces me to humble myself & do exactly that. PLEASE HELP!
My spine was damaged in a car accident in 2005. At that time, the damage was significant but I was able to keep living most of my normal life. I simply had to give up the majority of my more challenging physical activities. I still walked several miles a day, enjoyed careful hikes, & remained active with my young sons. The doctors did several procedures over the first few years but I ended up with chronic nerve pain & restrictions that would continue to worsen due to a degenerative disease on top of the accident damage.
Fast forward 18 years & I am fully disabled (had to give up my final part time job over 6 years ago). Not only has the pain & damage to my spine increased immensely, but a few years ago a tumor was found growing in the nerve sheath of my spinal cord while I was being treated for severely herniated & bulging disks. It is believed to be benign as it is a mass of live nerves but cannot be removed without causing significant damage & loss of functionality. Additionally, I’ve had to consult world-class specialists in search of treatment for the growing tumor, pain relief, an increase in functionality, & any possible stabilization for my spine. They are unable to do anything to stabilize my spine itself due to the loss of bone & disks as well as the amount of spine now involved.
At the moment I cannot stand long enough to cook (or even shower most days) & cleaning is out of the question. Sitting upright increases pain immensely which now even prevents attending many church services (one of my last remaining activities outside doctor appointments). It only takes a sneeze or one wrong step to fully throw my spine out of alignment & render me unable to walk…or sitting upright for more than a few minutes. The pain is becoming unbearable regardless of how careful I am or how much I stay off of my feet to prevent further compression of the nerves. Most of my time is spent laying or reclining, but even that is nearly impossible to find comfortable positions that ease the intensity of the pain in my back & legs every minute of every day. Sleep is becoming more challenging too since simply rolling over often causes an excruciating shift & misalignment of vertebrae.
At this point I have 2 options. One (my preferred choice) is a surgery to repair my abdominal muscles that would allow me to have a fully functional core. (My muscles are intact but stretched paper thin without the abilty to tighten when doing everyday activities.) The result of this repair would be overall strengthening & stabilization so that my spine wouldn’t shift as easily or frequently. It should restore some much-needed capabilities to care for myself as well as reduce the pain from the constant instability & slipping. The only other option would be a surgery resulting in my nerves being severed & the loss of my lower body functions (at the very least).
Insurance won’t pay for the more desirable surgery because there is no current code that says this procedure is medically necessary. (If the muscles weren’t attached, it would be a covered surgery!) At least 5 of my specialists will support my petition with the insurance to reconsider their declination. But, even if Medicare reconsiders covering the expenses, it would cost precious months or years that I simply don’t have. The significant financial burden of the surgical expenses is not anywhere in the realm of what my tiny fixed income could afford.
So I am putting it out here & into God’s hands. If this surgery is meant to be, He will provide a way. Thank you for reading my story. Any prayers & donations are greatly appreciated!