Bree’s Relapsing Polychondritis Fight

Update 4: I have been so very remiss about updating — and for that I am so sorry. There are lots of days when I have a ton on my to do list and all I manage to do is sleep. Also, complicating the updating are my eyes — a frequent target of my disease. On the one hand, things remain largely the same. I still have a tube in my kidney and I am still having frequent visits to the ER and hospital for seemingly unshakeable infections. I often feel like a pincushion. On the other hand, I know that things are getting harder. I sleep more and there are days when I am reduced to crawling up and down the stairs in my house … and there are also days of sadness when I miss my mountain adventures. But, in the midst of these struggles, I am so grateful for the love and kindness that each and every one of you continues to extend to me …

Update 3: I just finished another 8-day hospitalization and I am so grateful for my amazing medical team for the outstanding care and being able to pull me out from a pretty precarious situation… I have 14 more days of daily trips to the hospital for IV antifungals … systemic fungal infections are no joke! And, all of this was complicated by a horrible bacterial intestinal infection too …

I also want to thank everyone for their amazing generosity! You truly make such a difference to us in this challenging fight …

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Update 2: I just completed 8 days in the hospital with a severe kidney infection and countless other complications. We are in a Catch-22 situation in which my kidneys are clearly being decimated by the disease, but I am not strong enough to survive a surgery with any level of confidence … and so around and around in a circle we go.

I feel like I am drowning — in medical bills and household chores and a million other things. But, you are all an amazing lifeline and I am so very grateful!

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Update: My relapsing polychondritis continues to worsen with very rare kidney complications. Because I am so refractory to all treatment approaches, my prognosis looks more and more grim. But your love and support means the world to me

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Just over nine months ago, I was diagnosed with relapsing polychondritis. Like most of you, it was not a disease that I had ever heard of — who has? All I knew was that something was very wrong. I was in a cast with a catastrophic ankle injury, I was choking most nights at dinner, and my eyesight was wobbly at best.

My doctors explained to me that relapsing polychondritis is a very rare autoimmune condition that attacks the cartilage in the body. And wow (!!!), I was shocked how many areas of the body contain cartilage, including heart valves and the trachea. But, perhaps most importantly for me, the eyes also contain cartilage-mimicking structures that the disease attacks. For me, my left eye has been a frequent and relentless target of the disease.

Even my doctors are left with more questions than answers. My amazing rheumatologist has only seen two cases in his 42 years of practice. This has meant that I have had to take lots of trips to Boston for care — and insurance is not always portable across state lines, as I have found out. I also have upcoming appointments at the University of Pennsylvania, which has the best in the nation relapsing polychondritis center offering cutting edge solutions.

Each week, I have six-plus hour infusions of a high dose immunosuppressant, as well as several other medical appointments — the goal right now is attempting to save my eyesight. And, it is still not clear if they will be successful. I currently am battling scleritis, Plaquenil toxicity that is affecting my retina, and severe cataracts that have resulted from my high dose steroids.

I am racking up hundreds of miles of driving each week — and the associated high costs of gas — and after many treatments, I am too tired for the 2.5 hour drive from Boston back to rural New Hampshire.

I simply cannot sustain these mounting costs while I have not been able to work very much given the exhaustion …

The amount that I am raising will go for hotel stays as necessary after long appointments at Dartmouth, MassGeneral, and also UPenn. I have 7 remaining weekly infusions of the high dose immunosuppressive drug (Rituximab), as well as gas money. Any remaining funds will go to my co-pays and out-of-pocket doctor visits, as well as meals (cooking is exhausting), and a cavalcade of other costs that are not being covered by insurance. Because the disease is so rare (less than 1,000 cases diagnosed in the U.S.), insurance is persistently and doggedly determined in denying all of my care.

I am so grateful for your help. I am a fighter. But, this is a fight that i need help with.

For more information about relapsing polychondritis, visit: https://polychondritis.org