Help With My Journey to Kidney Removal

Hi friends, family, ECV Family, and kind and generous strangers

This is not something I ever imagined I’d be writing, but here we are.

For the past four years, I’ve been in a long, exhausting medical battle centered around severe kidney pain. It has meant countless appointments, tests, procedures, hospital visits, hospital admissions and trips to UC Davis, and now — due to the progression of my condition — my care has moved much farther from home to UCSF in San Francisco

I’ve been diagnosed with LPHS (Loin Pain Hematuria Syndrome) LPHS has no cure, usually it does exactly what I am experiencing, severe, intractable flank pain and bleeding! along with Sjogren’s syndrome, an autoimmune disease. Between the two, my body has been fighting itself for years. The inflammation and constant pain from these conditions have contributed to significant internal, structural damage to my kidney my doctor compares this to damage you would see from exposure to radiation — damage I didn’t fully understand the extent of until recently. Learning just how destroyed it is inside has been heartbreaking.

The pain I live with isn’t occasional or manageable — it’s severe, constant, and life-altering. I am determined to remain positive, continue to live my life and have as much joy as possible, I have learned to unfortunately live with the pain and keep on trucking, even though the pain is constant, I still go to work, get out into nature and travel, one thing I refuse to do is just give up.

In just a few weeks, on February 12th I’ll be undergoing another major procedure as part of the path toward a future nephrectomy (kidney removal). This procedure is planned to go back into both kidneys (Uretereroscopy) to get as much information as to what to expect during the actual removal surgery, my Dr also plans to take a few samples and a biopsy of the bad left kidney, LPHS is so rare, there isn't a lot known about the condition, so everything my doctors can gather from me and my experience will help other patients for years to come! This really is like an episode of House MD, minus Hugh Laurie and copious amounts of Vicodin.

While I don’t yet have a date for the actual kidney removal, we know it is coming, we are looking at March to early April for the nephrectomy itself. Modern advancement in medicine means less invasive and shorter recovery times! As long as my surgery remains a laprascopic surgery my inpatient stay will be 3-5 days, with at least 2 days for me to remain in San Franciso in the hotel, just in case of any postop complications. Along with post-op follow-ups visits and recovery that require us to remain near UCSF.

What insurance covers — and what it doesn’t

Insurance thankfully covers me and the medical procedure itself.

What it does not cover are the very real costs that make it possible to get through this as a human being — especially for my support person, my partner in life, my Boyfriend Christopher.

Christopher isn’t just my ride or my helper. He’s the one who sits with me through the worst pain, distracts me when he can, and somehow manages to make the unbearable days a little more bearable. He tries — really hard — and that matters more than I can say.

This fundraiser is to help cover pre-surgical and support expenses, including:

Hotel stays near UCSF, including at least 2 nights after the nephrectomy. We are expecting a 3-5 night stay in hospital and 2-3 for the hotel. San Francisco is already expensive, but needing a Hotel very close to either the Parnassus Campus or the new Mission Bay location puts hotel fees at anywhere from $200 to $400 per night.Christopher will need to eat, so we're asking for assistance for his food and snacks while traveling and during hospital stays.

Parking fees (currently $35 per day, which adds up fast) This is sadly the validated patient parking rate. San Francisco is EXPENSIVE! I do know about the reduced price cost for those with handicap placards, I am in the process of getting the form signed by my doctor, in hopes of applying at DMV and having it before the big removal surgery.

Gas and transportation costs, its not too far from Grass Valley to SF, about a 6 hour round trip, but needing to go back and fourth frequently eats funds fast, we do occasionally take Amtrak over when we can, but this still is in the $100 round trip cost for both of us.

Other incidental expenses that come with extended medical travel

Being treated at UCSF means being much farther from home, about 3 hours by car, and while I’m incredibly grateful for the level of care, the logistics are overwhelming, I wish UC Davis would have worked out as its closer, medical care just was not what I was wanting or needing, being LPHS is so rare, UCSF is truly the best place for me to be.

The hidden cost: our family

We also need to cover boarding/and or a house sitter for our dogs while we’re away:

Nutmeg, our Chiaussie, she's a Chihuahua and Aussie mix

Lilje, our 6-month-old baby of the family Golden Retriever

Being separated from them will be tough. They are my comfort on the worst pain days — the ones who get me through when my body feels like it’s completely betraying me. Actually not like but WHEN it is actually betraying me.

Why we’re asking for help

We do have some savings, but this has been a major, unexpected hit — one we truly didn’t anticipate. 4 years ago I thought that I would have had a quick fix and I would be healed! Things didn't turn out in my favor, Decisions made by doctors along the way led us to this drastic reality, and now we’re doing our best to adapt and move forward.

Our goal is $3,500, which helps cover everything we will need, from A to Z, as well as GoFundMe fees. If there are any unused funds, they will go toward making recovery at home a little easier — things like takeout or DoorDash for the first days home, when all I will want to do is sleep and relax, or maybe (said lovingly and with humor) a house cleaner and private chef… which I’m fairly sure will remain purely aspirational.

For a little levity: Christopher is a Clamper, I’m his Widder, We live in Grass Valley on a beautiful lake, being able to wake up daily and look out off our back deck into the wilderness is so calming and relaxing. Even with my severe diagnosis and pain, I still LOVE to get out on my paddleboard and be one with nature, I love taking daily walks with Chris and the girls, this clears my head and gets my mind off the debilitating pain, if only for a moment, We also still love to travel and experience new things, if I have learned one thing its to be thankful that I am here, even when miserable. Somehow we make this work — even now. If grit, stubbornness, and backwoods determination were currency, we wouldn’t be here… but alas.

Asking for help doesn’t come easily, but right now it’s necessary. If you’re able to donate, share, or even just read this, it means more than I can put into words.

Thank you for helping us through this chapter — and for being part of my journey toward less pain and more life. The donations and words of encouragement have been such a blessing, and we want to let everyone know how appreciative we are! between our local community and our ECV family we are blessed, I truly can't fully put into words how thankful we are.

With love, gratitude, and stubborn hope,

Deborah

Christopher

Lilje and Nutmeg